Things (!) are failing me now…..

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07/05/19

Day 10 – HALF WAY!

Yes, yes, yes! I have made it to the half way point of radiotherapy. Which means only ten days left of active cancer treatment. My dad hasn’t killed me off with his driving. I haven’t killed him because of his driving. I am managing radio as best I can and I am, for all intents and purposes, back to fighting fit for life (full time work, full time mama, full time partner).

But, as predicted, my legs are bloody killing today. Actually full on pain, that I have felt before but that was when I had run the Great North Run (13 miles). I literally walked half of that yesterday and I am in the same amount of pain. Geez, how am I possibly going to do 26 miles in two months? The panic is now setting in and a bit real.

Radio today was a bit of a weird one. The door on the radio room wouldn’t shut properly which is quite a significant problem! So I was delayed going in and then after being welcomed in, lined up in the perfect spot half naked (and freezing cold!) there were workmen not 10m away behind the screen trying to fix the door. I mean, if trying to stay still for the minutes usually was a pain, staying super still for what felt like 20mins was a special challenge. Once we were done though and I had redressed, I found out I’ve had my last five booster sessions changed from the ridiculous time of midday back to 9am each day. Thank goodness. So I can now  continue life through to the end like I am just rocking up to work late!

My hair is also due a special shout out today – there is a level of fuzz that has take over my head and that can only be described as a bit weird! When I say head I don’t just mean my scalp either. Its fluff everywhere – I look like a bloody gerbil!! I’m starting to get a little bit excited though that it is coming back. Thinking about how I felt now when I lost it, I’m now on the other end of the graph and rising back out of the slump.

08/05/19

Day 11 and today was a challenging start to the day. Four attempts to park the Golf today. In a car park that has a lot of bays free at 8am. But four attempts to reverse. Four. ‘Its a BLOODY GOLF NORMAN, A GOLF’. He then whinged about the Jeep and the people carrier that were parked near him and wondered how they parked it. Well, for starters Norman they have parking sensors (although I don’t think even they would have helped today), secondly THEY AREN’T SMALL SPACES!!!!!!

Back at work after a hospital incident free morning today (and no more car dramas), I blitzed a big presentation and decided as I was on a roll, I would chase up the damn Doctors who haven’t responded to my complaint (which has peaked my anger significantly!). The Practice Manager rang me back and admitted that the docs were covering their arses and want more from my Oncologist to say I can resume the contraceptive pill. They are chasing and the original nurse has actually put some effort into following this up. However, I explained in no uncertain terms that she shouldn’t have a job in the healthcare profession, due to her uncaring attitude to those in her care.

So transpires now that I will get a call by Friday to ‘sort me out’! Thank bloody god for that! So I head home to hope that I have a letter for an ultrasound for the second (/third) lump – remember that one – yeah, it’s still there!! And I am still waiting. Of course I am. These last two days have tested my calmness to my limits. I haven’t got annoyed at the NHS service in this journey, but these last two days have been a little bit testing.

And my boob is still itchy, itchy, itchy. I CAN’T itch it in public! Aaaagh!

But 9 days to go. 9 days. 9 more days of dad driving, but only 9 days.

I am feeling a reflective mood kicking in now though, and I can see it in my thoughts that I lay bear. I am revisiting a time line and keep saying ‘this time last year’. I can’t imagine what I am going to be like with actual anniversaries of stuff. I keep dwelling on the length of time I have been absorbed by all of this, when I should be focussing on the fact I am nearly out of this. I am going to end active treatment in 9 days, but I know I will end this chapter but start a new one. A changed one. One that I didn’t order on any shopping website or channel! One that no-one voluntarily orders. Before I would have lived blank pages going forward and made my own destiny. A destiny that I work hard for but my own nonetheless. Now I feel like an element of my life is already taken over – that little area of my mind that was carefree and didn’t think about health and wellbeing much is now a little but crowded.

But I have this. I really do. And I will not let these ‘things’ get me down.

Bank Holiday weekend!

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04/05/19

Its a Bank Holiday weekend!!!!!!!! Whoop! And only eleven days of radio left. Whoop Whoop!!

We took the cub out to a climbing and trampoline park today. Usually, I don’t buy into the fact that we have to do an activity every weekend and have to pay to make memories, but over the last few months I have felt like I owe her fun. And to have fun means leaving the house (I am no fun in the house as I am tired and end up in bed). I feel that if we go out I have to make a concerted effort to get through it and that in some way I am making up to her my absence in other ways. I know that sounds utterly ridiculous. Writing it down feels ridiculous. But if mama guilt of a full time working mama was prevalent before, it is even worse now. Never have I felt so absent in her life and like I am letting her down.

Tonight though, the man cub and I have laughed and laughed. We were talking about an upcoming wedding that we need to consider outfits for and again, more words I thought I would never utter just tumbled across my lips. As blasé as you like I just uttered ‘I’m not sure dress shopping will be successful, I don’t think anyone ever designs a dress that goes with bald’!! We were absolutly creased!

We’ve also had a late offer of overnight babysitting tomorrow night. I am over the moon – a bank holiday with a Sunday drinking session could be on the cards. The man cub just wants to sleep though!!

05/05/19

After an afternoon of shoe shopping that wasn’t for me (furious), the cub has been dispatched to the parentals, and the man cub and I are free to go wild. Which in reality meant that we procrastinated for about two hours about whether we were going out, once we decided we were going out, what were we going to wear, and how would we get there. You can tell we’ve totally lost sight of a good drinking session over the practicalities of how we achieve this. I’m pretty sure I used to be able to go out at the drop of a hat before having a cub. We are so sad.

We made it out and spent a lovely few hours people watching, had a good chuckle like we used to about fashion choices (and I should be put in a box for that!), and observing other couples and their dynamics. We were back to being us – not mama and dada for one night – just us as a couple. The couple that fell in love, have worked through a good few years of the trials and tribulations of relationships and having a small cub, but we are still those two people who decided to hook up many moons ago and have a laugh at life together. We just need a reminder sometimes. I also don’t think we give enough credit to how beautiful it is that we commit to us as a couple every day. It isn’t an effort, because it is so comfortable.

06/05/19

Rocked out an amazing lie in today! No guilt. No phone or tv used with a cub as a distraction while I nursed a hangover/wanted more sleep. Nope, just a lovely long lie in and a natural wake up time! Loved it. But I was missing her, so off I went to collect her. Yep – the car journey back reminded me of what I did not miss – incessant talking for the full twenty minutes and I could have taken her back!! (I honestly do love her, she’s just a bloody talker and doesn’t have a filter for quiet time yet!).

So I decided this afternoon that I needed to do a little walk to keep building the practice miles for my big walk! It had nothing to do with removing me from the relentless talking from the cub! Absolutely nothing at all so I told the man cub And off I went. 7.67 miles blitzed in two hours at a 17min mile pace. Not too shoddy considering I’m still dog tired from radio / full time work shenanigans. I’m fairly happy with that. But I know I’m going to feel this walk tomorrow. I absolutely think my head dictated this walk and I walked like I used too. My body might have different thoughts about it after a nights sleep!

We’ve also watched the SAS Stand Up to Cancer special on the TV tonight. We’d done really well just watching the celeb bit of the programme where they do the SAS challenges, and avoided the ‘personal’ stories that pepper these programmes with the aim of making you suddenly so sad that you reach for the phone to donate your house. However, we didn’t fast forward a bit where a young girl was chatting innocently about her cancer journey. It was all so beautiful, she was beautiful. She had got married to the love of her life after being diagnosed, it showed a few bits of the horror of chemo, and then………. The footage took an horrific turn when her wife ended the short clip by saying that she had lost her battle and cancer had taken her life.

Well. That was heart breaking.

I realise tonight that I am never again going to watch these stories without feeling gut wrenching pain. Without being grateful. Without being thankful. Without being sad. I have always been a crier with stories like these (don’t tell everyone, but I am an absolute softy), but now I am crying for me and mine. I am sad that cancer has infiltrated my life. I am sad that my precious people are sad. I am mad that we have to bear this and these stories are now so much closer to our existence. There are absolute moments of ‘why me’. Equally, seeing these insights into others who have battled or lost battles with cancer, have took me to depths of despair. My darkest thoughts seem to come alive when I see these losses and it takes everything I have to remain in the moment. To remind myself that I am still here and I am still living life.

Because I will have this. I have eleven days to go until I can say I am done with active treatment and I am going to own it. Absolutely.

Second lump check up, or should that be third??

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01/05/19

So I approach my second hospital of the day with the man cub, and we are silent in the car. We don’t have any words on this journey anymore. It’s as if fate is trying to prevent us getting there as traffic is absolutely shocking, but we make it for 4pm. We needn’t have worried about being late. The waiting room is absolutely rammed for the usual Wednesday breast screening session and pretty much every head turns as the bald lass walks in the room.

God, will I ever get over this feeling that I want to be swallowed up. I also recognise that my presence isn’t great as not only will some of these people be here for the first time to get a lump checked out, some will also be here for results, some will be here for a treatment plan and some will be here for routine screening. I appreciate that my appearance is unhelpful to everyone at this stage.

However, I also want to stand up and say loudly – you can do it; if I can, then so can you – but that’s a bit of a step too far today. Because all of a sudden I am back in a bad place in my head. So we sit in silence (no phones being broken this time to cause any distractions!) and wait. And wait, and wait. We knew we were in bother half an hour later when one of the nurses came out and announced they were running an hour behind. At this point there were still eight prospective patients in front of me and any one of those could take longer than their allotted time, so my 4pm squeezed in appointment was at the back of a very long line.

As the cub had to be picked up by 6pm from after school club (and I had not informed the parentals of the latest development so couldn’t even tap them up for a favour to pick her up), I despatched the man cub to get her at 5.15pm. He was reluctant to leave. He hasn’t missed an appointment with me yet. But needs must.

5.20pm, and there was three of us left, me (third time lucky please), a young girl (and I mean younger than me so probably in her 20’s!) with her boyfriend/husband and an older lady with her three adult children. The young girl went next and then we waited. And waited. The older lady was taken in before the young girl came out (probably to be prepped for something), and I was left alone, in a waiting room where the lights might as well have gone out. The Receptionist turned the TV off and all I could hear was the hum of the lights and my thoughts. I was clinging onto those big girl pants.

Then the young girl came out with her other half. With the green folder. And the green children’s book that explains cancer for children.

And my heart broke a lot.

The other half looked like he’d just witnessed the most horrific thing in his life. Pure shock written all over him. I suppose it is horrific to witness the love of your life get told heart breaking news. Then her face – composed (sure, she might have had her tears behind closed doors, but she had a game face on), pragmatic, resolute, focussed. I remember that feeling so well. I remember thoughts of how I was going to manage this with the cub. I had been pragmatic and could instinctively see it on this mamas face. She was going to fight. Good on her.

I wanted to leap up in that instance, but I also didn’t know what to do. I felt utterly useless and I was sat knowing a little (probably a lot) of what this girl was feeling, but feeling trapped to my chair. My bald head, chemo chub isn’t screaming – ‘join this journey pet’. And running across to an absolute stranger to tell her that she will absolutely have this, nail it, own it, also doesn’t feel like a great way to welcome someone to the world of cancer.  I don’t think that I would have appreciated it, but also I don’t know if I might have – it took me a long time to tap into the FB world of other girls like me and see that I wasn’t alone – is that what is needed? Goodness, I just don’t know. But what I do know is that I don’t resent the time I have sat and waited. I can never get mad if someone arrives to get a two minute good result and leaves skipping, but someone else gets bad news and needs 40mins to process it. We’re all entitled to some compassion and time to process this. So when the appointments run late, it is absolutely OK.

I get called at 6pm (man cub has cub and is tearing back to the hospital but won’t make it on time for this). And Mr A has a newbie with him. Yay! More people seeing my boobs out. Geez. After a feel around, and syringe to relieve one cyst, he asks me if the lumps that feel like a bunch of grapes is something I’ve already felt – NO, nope, not felt that one mate. Thanks for that. So after the newbie doctor has also made sure he knows what strange lumps feel like, I am on my way with an ultrasound to be booked to make sure there isn’t anything more sinister.

FMD’s. More waiting. 10 months after I first waited and I am back in the waiting game again. This pragmatism that wavered mid journey, that I grabbed back onto tightly, that I have been hanging onto tightly, is being tested to the very limits.

Then, I get picked up and from the back of the car ‘mama, mama, mama’, yes my baby girl, ‘I love you mama’. There you have it. My world. My reason to keep fighting. Keep strong. Keep being her mama. She deserves that.

Day 5 – 7 radios, plus second wait to get (post C) lump checked out…

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29/04/19

Day 5 radio, and Monday morning blues have got me down. I’ve been put through the windscreen twice this morning at a roundabout and traffic lights (seriously give me strength Dad!) and traffic was an absolute shocker. It had been fine on the way to the hospital and the usual routine is now being played out with a military precision. It is so impersonal, check in, sit for three mins max, strip off, don hospital gown (opening front), lie on gurney, get pulled, pushed and prodded into position, count down three lots of radiation spurts in a cold room by myself with random music playing, all done, get dressed, leave – rinse and repeat!!

The journey back to work was a shocker and I was way later in that I usually am. But my full time workload is back on. There is no expectation that I can’t achieve this now. I feel like everyone just thinks I’m rocking in late and should be coping lovely. As if I’m back to normal – just with less hair. It’s that bit. The less hair. For all intents I am ‘back’. But I still hate it when people do a double take when they see me. But what can I do? I just don’t know anymore. I’ve got all these balls up in the air at the moment and I feel like I’m going to drop a few at any given moment. My  cub, my man cub, my family, my friends, my work, my radio appointments, my lump, useless doctors, household duties; all of these are pulling me in directions and some not the same direction. Aaaaagh!

Yet, because I am now nearing the end of this damn journey, I’m OK. Or I should be, it feels. I don’t necessarily help myself as I am notoriously bad for telling anyone I am struggling. I always see it like an admission of failure. And I hate the feeling of failure. So I am always reluctant to admit that I might be struggling. My own worst enemy! I also feel like a bit of a fraud. I managed to make it through chemo, working full time. That was way more brutal on my body, but I also worked from home a lot more, and took a few more days sick during that time. With radio, I don’t feel like I can justify taking ‘me’ time.

Then tonight I have finally pulled together a letter to the Doctors about the treatment I have received. Hilariously, in this day and age, their complaints system requires you to post in a letter. I assume, because they assume you will lose interest by having to put pen to paper / print out a letter and then actually post it. Antiquated doesn’t even describe it.

So I have written and rewritten a strongly worded letter to see if I can get some sort of solution to the limbo I am now in. Bear in mind, their complaints process isn’t detailed on their website (you have to pick that up from the Doctors too!!), so I don’t even know how long they have to respond to me. Could be another ten days. Bloody joy!

01/05/19

Day 7 of radio and I am now closer to half way. I am prepping the cub for the over half way countdown, but we aren’t quite there yet.

Today is also the day when I need to pull on and own those big girl pants again and get back in the general population in the Breast Screening waiting room to deal with this second pesky lump. I have done so much better this time (post cancer) by not procrastinating. The last two days at work I have buried it deep and carried on (my clinical psychologist would have been proud!). But don’t get me wrong, it has also followed me round like a rain cloud. It’s always been there. It just hasn’t burst yet.

I travelled up to radio for the seventh time today (one lot of whiplash but no road rage so quite a success). Hilariously the background music choice of the day was ‘White Christmas’?! Who actually vets these songs? Although it did give me a good giggle while lying there half naked being blasted with rads! I returned home to work. Trying to go into my physical work place, when I would have had to leave early and not explain where I was going, would have been a step to far today. I don’t have the capability to lie today with everything else, so decided not to break myself and take the pressure off.

I arrived home with good intentions of opening the laptop and working hard. What actually happened was tiredness. Bone tiredness that has been hovering round the edges since I found this second lump, and today I lay back down in bed and crashed out. For two hours. Ridiculous that I then feel guilty about this as I never falsely declare my time worked,  but I’m sure people think I declare my working from home as a skive. I really don’t. I am very blessed to have an understanding employer and I prioritise work where I can (don’t get me wrong – the non priority stuff is still at the bottom of a pile somewhere and will continue to be there until I get back on top).

I wake up with a couple of hours to compose myself before the man cub picks me up for the inevitable hospital appointment (it’s just a cyst, just a cyst, just a cyst). I bang in a productive few hours for work (amazing what you can do with no distractions!), and then set off for the drive to the second hospital of the day.

Tired still. Really tired. But I have this. It’s just a cyst. It’s got to be.

Had a haircut!!!

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27/04/19

It’s Saturday and I am heading for a haircut!!! A haircut. An actual haircut.

I’m finding it a little funny that I am legit going for a hair appointment alongside my cub and getting hair chopped. But seriously – the fuzz is unreal. I can’t work out where I fit between a teddy bear fuzz and a new born fuzz. It’s a close call!!!

The lovely Anna gives me a ‘no guard’ shave while the cub gets her locks chopped by her best mate Nicola! The cub was on the opposite side of the mirror to me and I could hear her giggling and chatting away while I was sat still barely able to look in the mirror at myself. I am getting a little better at dealing with a mirror but being forced to look at it while my very short stumpy hair is shaved again (to tidy it up) I still find really confronting and really hard. It was a long five minutes.

Then we had a cubs party to attend too. Those big girl pants I had on yesterday are still firmly in place. This party was mine to attend as I felt relatively well (sciatica was killing me but as I had bailed the last few parties due to being ill I felt I needed to step up for this one!). I chatted with the mams like their was nothing going on, I watched my cub dance on a stage like an absolute show off (doesn’t get that from me I promise!), and maintained a pretence that all was good with life. It’s amazing really how much you can deceive people. That sounds really bad doesn’t it? But why would I possibly dump my baggage on people who only know me as the cubs mama. They don’t need that. They have their own baggage I’m sure. My baggage is my load to carry and I will do that. The cubs will also continue to play and that’s always a beautiful sight to see. As a mama it’s my job to make sure she is happy. Today she was very happy!!

Tonight though the dry cough and sciatica are jointly trying to take me down. My big girls pants are slipping off and I am digging into depths I had no idea I possessed until now. I am hopeful that I can be a third time lucky with the lump on this boob. I am sure I can be. I hope my pragmatism is well justified.

28/04/19

Sciatica has broken me today. I had to roll out of bed then make a tentative stand up this morning. I haven’t had it this bad since before I was pregnant. It was probably a quarterly occurrence (caused by the height of heels I wore at the time!) and I always walked like I had an accident to contain! This time I barely hid it round the supermarket as I complained at top volume yet the man cub still scrutinised all products down every aisle to see if he ‘needed’ something. This is why my online shopping has saved my sanity and my purse!!

The dry cough I have due to the radio is also not great today and I am trying to work out how I can deal with this when I am laid back on the gurney and have to stay still. I’m going with sucking mints religiously throughout the three minute journey. I’ll manage that!!

29/04/19

Day 5 coming at you! For Monday traffic it is an absolute breeze towards the hospital and I only get whiplash once on the way in. The radio journey of impersonality (absolute no judgement on the nurses here – they must deal with at least 80 people a day – they don’t need to be personal) continues. Get into position, wiggle about, lie very still (sucking mints so I don’t cough), hold my breath, move around, freezing cold boobs, done.

Today was hilarious though as there is music in the background (presumably to distract you) and today it was a proper club anthem from Cascada! I was literally laid on the bed but raving dancing in my head! It was the most surreal moment of radio so far. I don’t think that anyone actually thinks about or controls the songs that get piped through and I’m sure that should be thought about but for today I enjoyed it!!!

Once I’m finished I get the usual ‘have a lovely day’ parting and it makes me laugh and smile in one go. I can’t imagine what other people do when they are finished their radio appointments, but I am now off to do a 7.5 hour day at work and continue my life as if I am just being inconvenienced by a late start. Cancer is now being relegated to a back seat in my life as far as everyone I work with and live with is concerned. So it should.

Problem is, I have a very real lump to contend with and very visible results of cancer treatment that I cannot ignore. Frustrating as it is, I cannot quite shake the bloody cancer card.

Two lots of whiplash later on the return journey to work and I face a ridiculous day of meetings. Six meetings in six hours is crazy and while I know it is because my schedule isn’t helping my availability to deal with this, I also crumble a little bit today. This is not a good day. My pragmatic head is still holding onto all that is dear (and that this damn lump is a cyst) but I am being tested somewhat!

I have this though. I really do. All over it.

A beautiful day comes crashing down…

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25/04/19 contd…..

Having escaped Manchester in rush hour traffic, we made it half way back up the motorway and decided to bail into a service station for an unhealthy tea (and met parentals of her little mate who had also been at the awards – we had the same idea!). We had a tired cub and very tired parents. So once we made it home the cub was bailed rapidly into her bed.

We have had the very best of days and now, randomly, watching TV to unwind, I have found another boob lump in the ‘good’ boob.

Same place as last time and the time before – which have all been cysts. But seriously, is my body and my boobs having a laugh with me. Three radio sessions in and I am on countdown mode to ending this damn journey and then this. Bollacks.

F**k my actual life.

It is a Thursday night and I know that I won’t get seen tomorrow (Friday). I’ll be lucky to get through to the department at the hospital to be honest. So I know that I’m in for a long weekend. My pragmatic head has to kick in here, and I manage to shoot it in strongly tonight. It’s a cyst. It has to be. It’s too much of a coincidence not to be. I’ve just finished chemo for gods sake. It can’t possibly be cancerous. It just can’t. I’ve 17 days left of active treatment and then I am done. I cannot do more surgery, chemo, radio. Not now. So this is just a cyst. Just a cyst. A cyst.

The man cub bails to bed, and I have stayed up as I’m wired and trying to condition my brain to deal with this latest lump as a cyst. I happen upon ‘Sex in the City’ on a random Sky channel, and it is the episode where Sam is preparing for a black tie dinner speech in front of an entire room of cancer patients. I know I laughed the first time I saw this episode aired – I mean what’s not to laugh at. But by god, it was like a tonic that I hadn’t ordered tonight. I was absolutely rolling about laughing. Living it now, with the hot sweats, the bald head, the randomness of sweating – it was so real to me and so well encapsulated in that episode. The dark humour was just what I needed.

I know that many go through this crazy menopause, whether early or as nature intended. But I don’t think it is ever talked about enough. I equated it to a scenario in my head tonight – you know when you’ve been on an air conditioned flight and step out of the plane doors onto tarmac that is 40 degrees hotter than the country you left and the sweat appears from nowhere? Yep – that’s the feeling. But it is unknown when that sweat appears. That is the frustrating bit. There is no control over when those plane doors open. Aaaaaagh.

I also realise tonight that I might actually need to do a revisit of Sam’s portrayal of the cancer journey now in ‘Sex in the City’. I don’t think I ever give it a second thought when I watched it released as was a lot younger and much more naive, but the tonic laughter I have had tonight was good. I needed that distraction.

26/04/19

Day 4 radio commences and my dad picks me up again. My headspace wasn’t great this morning so he dealt with an absolute grumpy mare. He also tested my limits with the following driving experiences:

  • Stalled as left my house – randomly.
  • ‘Is it right here’ – no Dad, it isn’t, it’s the next right, the same as it was two days ago and for the two days prior to that;
  • (on the way back out of the hospital and at the same point as the previous comment) ‘Is it left here’  – again, no Dad, it’s the next left as above!
  • (As someone attempts to cut us up) ‘I don’t know how people pass there test these days’ – no me neither Dad, me neither.
  • Three lots of whiplash at traffic lights that are changing as we approach / changed half a mile back. Through the windscreen each time regardless!

I finally got to work in one piece (just) and put the call into Pauline. I had my big girl pants on. It’s Friday, there is no way I will get seen today. I’ll deal with the weekend. It is just a cyst.

Pauline rang me back later in the afternoon and I instigated the appointment being during general clinic the next Wednesday. At 4pm. It’s going to be a long bugger of a weekend. But the plan is to bury my head in the sand, pretend everything is ok (I’m a practiced pro now) and just get on with it.

Day 4 side effects of radio are starting to kick in now though – a dry cough that feels like I’m coughing in the Sahara (radio affects your lungs which is a lovely side effect), and it’s set my sciatica off so that every time I cough I double up like an 90 year old granny. FML. I am living my best life today.

I have this. Do I? Maybe? Possibly? Oh, dammit – of course I do. I’ve had everything else so I might as well have this while I’m at it.

Day 3 Radio – A beautiful day

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25/04/19

Day 3 and I am driving myself to radio! Whoop!

I need to put yesterdays Nurse debacle out of my head as I just can’t deal with it at the moment and my energies need to be focussed elsewhere. And I am still tired, so today my energy is focussed on my family and them alone.

Today is going to be an absolute trashing day. I have 8am radiotherapy, need to fly back home as quickly as traffic allows to pick up man cub and cub to then drive to an awards ceremony in Manchester.

So it turned out last week, that the cub was part of a group of eight (possibly?) little uns who had designed and made a beautiful piece (that’s all I know!) that represented showing racism the red card in football and they had been selected as winners of an award. It has taken myself and one of the other mamas a long time to get this much information, so we were still a wee bit in the dark about what is going on, but regardless we were going on a road trip!

I have had the calmest of journeys this morning. I have turned the music up loud, I cheated the traffic where I used to about seven years ago (!!), I didn’t get tooted at once, and I arrived at the hospital and managed to park the car in one swift reverse go. It was a breeze.

I’d made a fatal error again though. For ease and speed of collecting the cubs on my way back south and heading straight off to an awards event, I decided to get ‘full’ ready. Which comprised of a dress and stockings. Yep, you know the drill!!! This was not a well thought out plan and once again I was stood in a tiny cubicle staring into a full length mirror as I stripped off the dress and muttered FFS under my breath for the second time in such a scenario. I don’t seem to learn. All I can say is I had big knickers on. My only saving grace!!! Because while my bottom region is covered by the gown I still have to raise my knees and there’s a draught up there. These poor bloody radiographers. I mean, they obviously see every part off the human anatomy as cancer isn’t picky in it’s choice of location, but goodness me, you’d think I might have learned a lesson by now!

After a brisk five mins staring at the ceiling and being pulled and shoved into position, I am redressing and heading back out to get the cubs and head down the motorway an hour behind everyone else travelling and try to make it in time for an awards ceremony that we still don’t know much about. They were ready and waiting and we set off with coffee on tap!

Some three hours later and after walking a long way round a football stadium to get to the right entrance (I had helpfully managed to park in the carpark furthest away!), we made it. Security protocol piqued our thoughts that this might be an important event. Then arrival in the executive suite of the football stadium made us panic a little bit more. Turns out – this event is a yearly calendar event for ‘Show Racism the Red Card’ and is well attended by current and retired footballers who come to present awards to the kids who have submitted amazing works of art to get messages across with regard to racism. Yep – we were not suitably suited or booted for the occasion and mild panic had set in. Thankfully we had allies in another set of parents (who were suitably suited) to hide us from the shame!

Also, anxiety had kicked in big style. I have managed to cope with most new environments as they are always somewhat familiar – whether that be through the people I am meeting, or the location being local. This was neither. And I still look like utter crap. Bald (of the patchy variety, not the fashionable variety), no eyebrows, no eyelashes, puffy face, pale as dishwater, a bit bloated everywhere and pure chemo brain where the brain doesn’t quickly connect words anymore so I look like a bumbling idiot. And here I am, in a room full of strangers, looking my worst on a random Wednesday (!) and trying to supress that; as today is not about me, it is about my cub. This feeling is so alien to me. I really struggle with how to deal with it, but after a good half hour chat about general life with one of the other mamas I feel a wee bit ‘normal’ again, and less like other people might be looking at me. I mean, they may well be, they may well not be. But I’d stopped thinking about it so much which is something.

A stadium tour later for the man cubs and cubs (read that it was blatantly the man cubs who enjoyed it more), some fan swooning and photo opportunities with minor celebs and famous footballers the award part of the day kicked off. It was beautiful. Now our little cubs were in the first category and the hosts went to great efforts not to mention ‘first’ or ‘third’ prize which was so lovely. Off our little treasures marched to receive their bags of goodies (the cub is now the proud owner of a full blown – socks included – Celtic strip and her dada couldn’t be bloody happier!). What proceeded thereafter was a two hour award ceremony, no breaks, no let up, of awards for every age group in schools across the country, while footballers and those in the football industry added in flavours and thoughts on racism in the game. As adults my bottom started getting twitchy an hour in. For the five year olds, they were amazing. They managed (in the main) to stay fairly quiet and found distraction techniques between them (face pulling and blowing spit bubbles at one point!) to get through. But what an amazing day.

I think this was the first time the man cub and I have dealt with public recognition for what our cub has done (I mean I’m always super proud of her but I am biased as hell!). I’ve never felt pride like it and I know that there will be many times in her life that I am going to cry a lot more than I did today. But god, her stood there in her school uniform that is still way too big for her but they don’t do a smaller size, her hair wild as she takes after her mamas crazy curly locks (when I had hair!), her innocence about the magnitude of the message in what they had produced (see for yourself in the image above), and just general nonchalance of her surroundings. I could burst with utter pride.

As we left the stadium in torrential rain and headed to the car that I had parked ‘miles’ away (I took the blame, I had no choice, the man cub reminded me of it frequently), the cub was so excited and chattering so much about the day, that the trashing journey, the organisation of dealing with the trip, the break from the norm, the severe anxiety, the guilt that I wasn’t firing on all cylinders, was all forgotten in that instance.

We had an amazing day and we were going to remember this for a long time.

Radio – Day 2 (and healthcare lets me down….)

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24/04/19

Day 2 of radio, and the early morning start was standard. As was the driving. Just today, we had a bit of passive aggressive road rage! In a spot that I used to drive every day for three years, and had already pre-warned my dad that in all likelihood, during the 20 days we spent travelling this journey he would have to suck it up when someone cheated the traffic, or he could join the cheaters. He chose to not join the cheaters but then lost his temper when one did try to cheat (and succeeded may I add!). Cue horn tooting which led to window wipers going off – both front and back, full beam on and indicators left and right which likely confused/annoyed all of those around us more than the cheating car that was now a good mile in front and oblivious of this chaos! We then proceeded to spend another ten minutes of the journey with the back window wiper going on intermittently as he didn’t know how to turn it off. Give me strength. A lot of it.

Radio done today and I now feel like a pro two days in. My dad and I both need a coffee when we arrive (he even told me today to pick up a loyalty card!), he sits and reads his paper/book while I go through to the inner waiting room, whip into a changing room, top half clothing off, gown on, horizontal pose, get pulled about into place and then get abandoned for approx four mins – in this time I get two big blasts (starting to time them now) on my boob, then I get re-positioned slightly and then get one short blast on my neckline. And that’s me done. Off I go with my day.

Today, I have an emergency appointment sorted at the Doctors to get another batch of the contraceptive pill. Now I have anticipated no issues. I continued to take the pill right up until I started chemotherapy, as advised by my Consultant and Oncologist as my cancer wasn’t hormone related. As soon as chemo was finished and I saw my Oncologist and checked if I could start back up again – no problem. While it is very likely that I am going through the menopause  and that chemo would have made me infertile due to not taking any fertility drugs to suppress my ovaries (this area of chemo is a minefield), I still don’t want any accidents to happen.

I resumed the tablets where I left off, but what I had forgotten was that I get a yearly prescription and this runs from December to December – because I stopped taking it in November and restarted at the back end of March, I only had a months worth left. So blind panic this week when I realised on Monday I was about to run out. Hence the emergency appointment today with a nurse.

I arrived at the surgery this afternoon and proceeded to watch the nurse who was due to see me pass across the waiting room twice, while I just sat there like an obedient child waiting to be called in. Now at this point I should also point out that this nurse hadn’t scored highly in my niceness chart from a previous interaction. I had taken the cub down when she was little as she had a rash and was advised on the phone to pop down. It was the middle of winter, we had walked down (fifteen minute walk) so we were dressed for the middle of winter. As soon as we arrived it must have been a quiet day as we were called straight in to the appointment, so the cub was still wrapped up like a fractured skull. As I explained to said nurse what was wrong while removing clothes, she stated ‘well she’s going to be too hot in all of that which would surely aggravate any rash’. Woooooo. Kept my calm, but only just.

So I wasn’t looking forward to this encounter, but thought it surely couldn’t be that bad. A quick blood pressure check, the usual health questions and I would be off to the pharmacy with a prescription for a year.

Nope. That scenario was not to be.

Upon being called into the room, I was immediately met with ‘you can’t have the contraceptive pill’. Completely blindsided, I turned into a bumbling 12 year old girl and stuttered ‘why’? I could already feel my temperature rising and fury building. So apparently, some ‘Gold standard regulations’ stated that contraceptive pills could not be issued to those with breast cancer. Now bear in mind – there are numerous (and I don’t have Google to consult but I’m going to knock out 50 for a starter) types of breast cancer, but this Gold standard just states that ‘no’ breast cancer patient can have the contraceptive pill. Bear in mind I also have a letter, held on file with the doctor, that states clearly that I can resume the contraceptive pill (all of my hospital letters are copied to the doctors surgery).

After the nurse had patronised me more thoroughly by trying to show me the ‘Gold standard’ bollacks on her screen, and then telling me that the letter from my very well educated (compared to her) Oncologist wasn’t enough for her to release medication, I asked what I could do now. The response – ‘use condoms’ wasn’t well received. At this point I had tears in my eyes, mainly out of frustration and fury. I stated that I was well aware of contraceptive methods (I mean, I’m not 12) and that wasn’t what I meant by the question. She started saying that I could have a coil fitted but by this point I had zoned so far out due to red mist mist that I decided to leave. I stood up, walked towards the  door, with no words said, and it took everything, (I still don’t know how I did it), absolutely everything I had not to slam the door; however I did close it with some purpose.

I left the surgery in absolute fury. I have never felt so out of control of my own treatment in my life, and I have spent the last six months having other people tell me what would happen. At no point in all of my cancer treatment have I felt out of control, and I have pretty much been led down a garden path by someone else most of the time without feeling like I’ve been ambushed. It also endlessly baffles me that people who have not a caring bone in their body are in a position that is supposed to be caring. I mean, I do not have the capability to do it – which is exactly why I don’t do a role that requires it. But this bloody Nurse has chosen her occupation and then still acts like a sanctimonious **** (insert any word here as I used them all).

However, later on this evening, once I have shouted the ears off the man cub, I realised there is a bigger problem here. If this ‘Gold standard’ says that I shouldn’t be taking the pill, what could have been the damage by me taking it back when I was diagnosed and resuming it when chemo finished for the last month? I also realised that my consultant had also mentioned that I could resume the pill – so two people who are well qualified in the field of cancer have said I can take it. WTAF. I am also left in absolute limbo and don’t know what to do. Bad thing? Minor thing? Not to worry thing?

 

I don’t have this one, and I am channelling all of my psychologist coping mechanisms but still don’t have it. Aaaaagh……

Another Day 1 – Radiotherapy starts

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22/04/19

Got to love a late Easter Bank Holiday Monday! The man cub has had to work so the cub and I get to spend the day as a twosome. It takes me back to maternity leave and our precious time being a two woman team. We ruled the world! She has way more chat and way more sass as a five year old now, but I bloody love spending one on one time with her. Work and house get forgotten as we spend an afternoon in the park (in a bizarre outfit of shorts and a fleece as the weather is that deceiving sunny but chilly level).

We had a wee chat earlier about the fact that I am back at hospital tomorrow and that Daddit (I absolutely love this naming from her) will be taking me out of the house before she even wakes most days. She got a wee bit upset. She still associates hospital with the scar on my boob and the fact that I lost hair (so no positives there!), so isn’t keen on the fact I am going back daily for a period of time. When I said it was only ‘four weeks’ she responded with ‘that’s absolutely agggggeeeeees mama’. Cheers pet. I know that. I was just ignoring the fact it was bloody ages!!

Bed beckons as I am about to deal with another Day 1. But this one marks the beginning of the end. I’m nearly there. I cannot describe the trepidation but relief at the same time. The countdown is real.

23/04/19

6.10am – Morning!!!! Day 1 of Radiotherapy!!!

Good god, I hate an unearthly hour. I have never (and let’s be clear WILL never) be an early bird. But here I am, perky as a button, making sandwiches for the man cub after being showered and dressed ready for the next stage. A new hospital is about to welcome me for 20 days. A new Reception desk, a new waiting area and certainly a new ‘room’ that I am going to become best friends with! I also have to get through my dad driving me like a child again. Hmmmmm.

So, dad turned up at 7am, 10mins after the cub had managed to wake herself up (I’m going with she had a sixth sense of anticipation!). She launched herself at him as he walked through the door, still smelling of sleep and sour breath and PJ dressed! The happiness of this helped me though. If she could deal with the happiness that she was going to see her daddit every morning, maybe it might take the edge off her dealing with the fact it was because I was going to hospital? I’m going to see if this might work!

Then we set off. Let me explain – I am an absolute pain in the arse of a passenger driver in any instance. The man cub spends a lot of time while he drives telling me to stop hitting the ‘imaginary’ brakes. So as I got in the car with my dad, to drive me twenty odd miles to a new hospital, in rush hour traffic, I should have known I was in bother. Real bother. (P.P.S. My dad is also now in his 70’s. Smarter and brighter than I am on a good day but (hmmm) always a chance there could be an off day).

We set off from home, and within ten minutes, I was ducking (IN THE CAR!) from a bus that could have taken the car out as we pulled in front of it, cringing at the blatant cut up on a merge lane of another car (seriously if I had been them a lot of expletives would have been issued) and mild whiplash as we stopped at an ‘Amber’ light very promptly. As explained this is local rush hour traffic and I need to get across all of it to get to the chosen hospital that will deliver me rays. So I smiled nicely. And internally exhaled loudly. I spent a lot of the inward journey wondering how for 20 days I could make this work while retaining my sanity – could I book a hotel room (maybe a YHA – cheap as chips?) and just ‘live out’ for a few weeks? Maybe I could ‘hire a car’ – surely that would be cheap?! Maybe I could get on my dads insurance and just drive myself?

Do you know what. All of it sounds ungrateful as F. And by the time we had got to the hospital I had a strong word and sucked up any negativity with my dada’s driving and went with appreciation. I was there. I was at the hospital. On time. And I was about to start my first radiotherapy session. Bring it on.

So, what radio (shortening this as it is a long word to type each time!) sessions look like – they are short. Swift. Impersonal. Pain in the arse. Give your body over to professionals. I have to strip half naked. Then the teeny weeny tattoos that I now have need to line up to a laser machine. To get this alignment I need to lie on a gurney (feels like it might as well be) with arm and leg stirrups. I need to be in a perfect position each and every time this position needs to be maintained for three to five minutes. A lot of numbers – length, breadth, height, width, up, down, left and right, are read out. These all have to be in pure alignment. All of this while I am half naked from the waist up. Good God, I thought having a child was the last time I would just hand my body over to medical professionals. How wrong I was.

But I still have this journey. I am absolutely determined too. I am so close now.

Motivational speakers and radiotherapy prep!!!

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20/04/19

Sometime back in February I happened upon a notification that Ant Middleton (him of SAS Who Dares Wins fame) was touring. What struck me at the time was what could he be possibly ‘touring’? He was ex SAS personnel who now appeared on TV every year for a series where he made people test their physical limits. I admit I was confused and intrigued to know what he could possibly be ‘touring’ with? Don’t get me wrong, I was a fan of his no nonsense approach, his can do attitude, his nonacceptance of failure, an expectation that the job needed to be done and it always would be. His ability to be straight talking had also endeared him to me – in most walks of life it’s frowned upon to tell someone to ‘sort your s”t out or f”k off’. I often envied that honesty to just get to the point!!

After a quick search, I realised he was touring as a motivational speaker and my interest piqued. This man, who I observed as an absolute machine, fit for purpose in his own environment, was delivering a motivational speech? It intrigued me. So much so, I bought tickets immediately on a whim. When I informed the man cub I watched the same scepticism in his eyes. Would this be any good? Were we wasting time and money? What would we get out of this?

Ever the optimists that we are, we have turned up today for the matinee show. Radiotherapy is due to start on Tuesday, a brutal 20 day regime (excluding weekends!) so it feels good to be out out! Queueing up with the most bizarre range of audience members I have ever seen – they ranged from the father and son bonding, older men looking to relive military days (I surmised), couples like us who like the man on the TV so lets see what he has to offer in straight talking real life, and the Hen Do that happened to take up the entire row behind where we sat (of course they did – such is our luck) – we still had a small level of scepticism.

The tour was called Mind over Muscle. And boy, did it have us on the edge of our seats for the entirety. Once the fan girls behind us had got over their swooning and were three drinks in so weren’t listening but drooling, I was able to concentrate on the content. My take home points have been this:

  • Mind over muscle – makes absolute sense when it is explained well
  • Fear should equal excitement
  • Failure equals learning
  • Integrity is a moral compass
  • Make a positive out of any negative
  • You need to know yourself and recognise your weakness

These are just a few of the quotes that stood out from the two hour show and don’t even begin to touch the edges of how inspiring I found those two hours. I have just walked out of a venue and had my mindset questioned, my challenges seem more surmountable in some ways. I can feel an energy in both of us that we have felt wane through this damn cancer journey that we have been on so far. I feel like I can deal with the next stage of this journey – radiotherapy – with a renewed vigour.

I honestly have never paid to see an inspirational speaker before in my 40 years of life. Today has felt odd, inspiring, a little bit weird, and enlightening all in one go! I’m pretty sure I would have booked tickets anyway to see this show regardless of the current situation we are in. But would I have found it as amazing – probably. Would I have taken so much to heart and still be talking about it five hours later with the OH – probably. Will I keep looking back on this and trying to instil some of this belief system and learning into my life – probably. Would it have had such a profound impact on me – probably not. I guess that’s the point I’m trying to make. In the majority of things we have done and dealt with over the last nine months we would have probably lived the same way, done things with the same outcome and tackled things head as a team like we always do. But there is always a point where we have been tipped. Either a little bit off kilter or over the edge in some instances. That is when we have had to find strength that we haven’t had to find before.

I am quite proud of us though. We have found a strength that we didn’t know we had. I can resonate with some of the messages from today and can apply them to some of the crazy situations we have been in. I feel like we have done good. We also have a cub who is doing good. Surely that can only be a positive.

There is just a small matter of 20 (week) days to get through from Tuesday (goddamn you Easter Bank Holiday Monday!). 20 days of a mission of a journey each day, a 10 min blast of radiotherapy, a mission of a journey back to work and then an eight hour work day, collect the cub from school, normality of bed time routine, rinse and repeat. Twenty times. 20. It feels better to write the number than the whole word. Just 20.

21/04/19

So after an amazing and inspiring day yesterday I have got off my backside and plodded out with my boots on to continue preparation for my 26 mile hike. My second practice walk. My lovely work colleagues have already started their practice miles which I just didn’t feel up to and have nine mile route booked in next weekend so I want to try and make that. If they can practice then I need to feel like I am also doing something. Bear in mind I have done only one previous walk of 4.26 miles (in April, with the parentals and cub so it was slow and meandering!) and no other physical activity of any degree (my walk to work is up a steep hill which last two minutes!) since active treatment started.

Today though, I marched (I mean marched) out with the parentals. I mean, they dragged me out to be precise. If they hadn’t been persuasive then I would have probably (easily) left it another week before I built up to anything. But no. They plotted a route that started and ended at my house and I put the Strava on to measure my success.

I have achieved 6.45 miles. In two hours. Wow. On a very flat and sedentary route. We dealt with nothing harder than some barbed wire fencing that wasn’t supposed to be there and no hills in sight. The 26 mile route has hills. And when I say hills I mean mountains. And when I say mountains I mean vertical uphills and downhills. So this walk was pathetic. How am I going to do 26 miles? What am I even thinking I can achieve here.

I have no idea. But if the last two days have taught me anything I can use mind over muscle and fear should lead to excitement. So I am just going to channel that right now and say I have this. I really do!

Body pains and hot flushes!!

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15/04/19

Woke up with sore boobs. But the cub is getting much better. So I distract myself with that happy scenario and try and ignore the soreness. Feel like I’m just being a hypochondriac and that it’s nothing. I’m also going through some mega hot flushes. They are a real treat – let me explain – they start at my stomach and rise up until my head feels like it is so hot its going to explode. The wave keeps rising for at least ten minutes, settles to a steady heat and then subsides after anything between five to thirty-five minutes. It is like being cooked from the inside out. When it comes on the immediate reaction is to remove as much clothing as possible. Which obviously isn’t possible in work settings but by god, the last few days I could have easily got naked in front of a number of colleagues just to alleviate the heat for a short period.

Absolutely lovely. Now 40mins may not seem too long but these flushes are happening at least five to ten times a day. Christ, I thought I’d have a few more years to prepare for this but nope. Now’s the time. Pragmatic me is trying to make this a good situation and say that I’m getting this over and done with. In reality I am not enjoying this so much. It’s not great in meetings when I am so distracted by a sweaty top lip and spine with a river of sweat running down it. Purely gorgeous stuff here!

The problem I also have is that I feel like I’m being taken back to my insecure days as a manager, when I would flush bright red if I spoke in controversy, if I didn’t quite meet the mould, if I was put on the spot and didn’t know my stuff. And now I feel like the flushes make me look like I am blushing or getting flustered when in reality I am just going through the bloody menopause. I don’t know what is more ridiculous to admit too. I manage two males! They really don’t need to hear this! At some point though I am going to have to bite the bullet and make them embarrassed!!!!

Today has also been my last day with the CP. I took myself again, dealt with more traffic trying to derail me and arrived right on time as if the gods had planned it! I then spent ten minutes in there. Ten minutes. Because I was a smart arse and told him what I thought he wanted to hear! I blagged that I was doing self care, that I was looking after myself, that I was thinking about self love. I told him that I was doing my three minutes per day mindfulness as religiously as I do my teeth, that I was writing down worries during the day and saving them up for ‘worry time’. That I was rationalising my fears rather than catastrophising. I told him all of that in two minutes. And for those entire two minutes – as a full grown adult – I lied. Utter bollacks. I have used the mindfulness to help me nap in the day when I have had my days off (it works a treat, but totally not what it is meant for!), I never set a time to deal with worries, and I still internally catastrophise about cancer (I am really good at not doing it with anything else as I always have been but cancer is the thorn in the side on this one).

I mean, I absolutely think he realised, but also that I might not be for changing. He asked me if I needed more sessions and I said I was all good.

I then spent the next 30mins in the car (I mean I had paid parking for an hour!) and tried to work out why I was not self healing and medicating with some alcohol and a bravado that I hope will get me through. To accept help for my mental health is so alien to me. I have spent my whole life being very mentally well. Not understanding anxiety, depression, or any other form of MH. In my 20’s I would have been so blasé about it. Big girl pants will get you through any situation would have been my go to comment. In truth I know I have said those words to my mother about family or friends that she has spoken about. Reality is biting me in the arse now. Because big girl pants aren’t getting me past these dark thoughts. They aren’t helping me manage the distress I feel when I think about this journey and how I am going to live with a different reality on the other side. FML. What am I doing here to myself. Distraction and deviation is my game here but at some point I need to really deal with this. That won’t be today. But I kind of know it’s going to be one day.

I’ve spent tonight trying to work out whether it is my bra that is causing me pain or whether it is actual real pain in my boobs? I am trying to ignore it. I’m going to pretend it is the bra situation as I can’t quite get that right now I am even more uneven than I ever have been and that I am  just not sitting comfortably. Trying to type on my wee laptop on a weird angle won’t be helping!!

And then I read a blinder of a post on the secret FB group, a young girl had Triple Negative breast cancer, and here she was today, three years later, with a secondary diagnosis of cancer in her liver and now at Stage 4. Fuck. This bloody disease is brutal. For moments I am blown about in a hurricane of emotions, I feel sad for her, furious for her, furious for me that I am always going to live in a state of waiting but also trying to live life to not waste it as it might never happen. I will not catastrophise. But it is so easy to do. What a way to end tonight.

16/04/19

Good god, today has started the same way as yesterday ended. The first news article I see in my newsfeed is about ‘you are what you eat’. They (the press bollacks) are saying that that ‘bacon could cause cancer’. The difference between having 1 rasher or 2 could make a real difference on a weekly, monthly, yearly basis. I’ve stopped reading. I can read no more.

Right – I want to get off. I am tired of this ride and I don’t want to do it anymore.

But I will. I will continue these hot flushes and fighting to be fit. Radiotherapy is just around the corner and I am going to have it.

A poorly child takes us down!!!

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11/04/19

Why is it that I still can’t look in the mirror and recognise me with no hair. You’d think after four months with no hair, I would have become used to looking like this. But I guess thirty odd (!!) years of looking in mirrors with a head of hair is hard to overcome. But I’m also confused as I went through Uni years with short spiky hair in varying shades of colour. I seem to recall I managed to look in mirrors just fine. I also forget that I look like shite most days as when I am facing someone, my voice is the same, my responses are the same, so why would I look different? And then I happen upon a mirror and recoil in horror. Crikey, this is what everyone else is looking at and I forget it. Ugh.

I’ve also missed a check in call today with my lovely Pauline and now sat here tonight with a sore boob. And my armpit has weird little shooting pains going through it. The paranoia now is real. Every little pain I am feeling I double and triple check myself and can see that I could return to hospital every other day if I went down that route. I mean, I am just getting a bit older (still not celebrating that Birthday). But I am bound to feel life niggles, right?!

It’s half term week off from school this week, so you would think it’s been more relaxed without crazy school this week, but it’s been a bit more stressful. The man cub has been dropping me and the cub off near my workplace for breakfast so I can then walk her to an active camp childcare facility. What that does mean is that I have then had to walk a brisk mile back to work once she is dropped off. Much as this is good for my fitness regime and building up my mileage for the ‘big walk’ but I am also draining. And tonight picking the cub up from the camp, she looked like death warmed up. She was silent in the car on the way home (I mean, welcome silence but very eerie for our child not to talk incessantly). I have a feeling there is trouble afoot!

12/04/19

Woke up this morning with a proper poorly baby. She had nothing about her, was sleepy as, (no sign of tonsillitis which I got caught out with last time she was ill), lethargic and an unexpected day off work for the man cub ensued. I think a bad cold is flooring her, she is proper snotty, but also think she is just run down. She has been full tilt with me on this journey. But surely this has took it’s toll on her. When we are at work she is in breakfast club at 8am,she doesn’t get picked up from fun club until 5.30pm. This happens five days a week. And now I have launched her into long days during a school holiday as we work full time. No wonder she is exhausted and can’t fight a cold. The man cub has had to take the work hit and call in to say he has poorly child and not go in as I have meetings set and can’t in all good conscious take more time off. But at the same time the mama guilt is at an all time high. I have failed her and caused her to be really poorly. Aaaagh.

Tonight we have been talking about Gail Porter! I mean the man cub is in his absolute element! 90’s pin up (House of Parliament projection of a nude Gail Porter image are ingrained in my memory – babies may not remember this!) who faced baldness in her past through stress related alopecia and still looked bloody gorgeous.

The reason for talking about her was that the man cub had seen she had breast cancer diagnosed following a thermogram. A scan that identifies heat sources in the body and these can then be identified as cancer.

I haven’t sent myself down a rabbit warren here. We debated it (without facts) for a good while and then I shut the conversation down. I can’t in good faith do any quantifiable research on this in my headspace and give it enough weight to promote / shut down. I am living my unwritten rule of not dealing with Dr. Google and I will maintain that going forward.

13/04/19

Aunty Kate and Uncle Wills came round today. Was absolutely beautiful and spent a good bit of time catching up, chewing the fat, and reconnecting physically. It was so nice to do and while I didn’t feel ‘ill’, I was reminded again that I look a little bit shit. I know that again my outward voice is the same, but my visual appearance to people is different. As they hadn’t seen me since I got bald, I know it was a shock. They were amazing and as always accepted me and the cub into the man cubs family. I am so lucky to have them in my life.

14/04/19

Lazy like Sundays! I love this. (But also feel a little bit guilty that my lazy Sunday is the result of a poorly cub).

I am the first person up in the house today (absolutely unheard of following a Saturday night drinking sesh!), I potter about, do the housework and the cub finally awakes a wee bit brighter but with a red snotty nose and not loving life still. After a couple of hours, she was flagging again (and i was after an early morning!), so we took ourselves to bed and had a little lie down. Now, let me explain, the cub is a snorer. She denies it but by god it’s true! So I took a little video of her snoring (before I put the phone down and slept alongside her). When she woke up I showed her the video to have a chuckle. Her first words – ‘that wasn’t me mama, you’ve put that noise on there, I’m just sleeping quietly’. Oh yeah baby – I’ve spent my time dubbing videos on my phone while you were sleeping! Save me now!!

But today has reminded me that this journey is not going to define me. I will have this and I will continue to have this.

Dealing with incompetence……..

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07/04/19

So I’ve made it to Sunday after a crappy Wednesday curveball.

I had the most gorgeous Friday work morning out in the most beautiful of halls in our region and a cheeky afternoon tea (loved it with JG). I mean I have a cheek to call my job work sometimes! I have finally put feet into boots yesterday (Saturday) and walked 4.5 miles (a very slow 4.5 miles with the parentals and cub) in prep for my 26 mile hike (seriously don’t know who I am kidding at this point).  I have also knocked out a soft play session this morning (a Sunday morning!!!) to catch up with a friend and her beautiful boy.

But I have also broke this weekend. I cried and cried on Saturday night. Still crying over the hair loss. Still crying over the general sight of me looking like shit. And I got a bit desperately sad. I haven’t done that in a while but this weekend I think the setbacks this week and cubs comments have caught up with me and I have got a little bit too sad again. I also (possibly irrationally) think I have another few lumps in the boob area, which I am trying to not deal with as my little head might explode! I am also in crazy headspace where I am wondering if this is my new norm. Having a meltdown every few weeks? I’m sure the man cub won’t appreciate that at all but maybe I need a regular outlet?!?! I’m not sure how I do that but I need to look into it.

09/04/19

FURIOUS. AND I MEAN CAPITAL FURIOUS.

After a Receptionist debacle where the man cub went and took a seat so he didn’t yell at anyone on my behalf and I tried to remain calm as a cucumber (honest – I think I’ve found a zen like level with appointments and receptionists by this point!) I got booked in to be seen for the ad hoc Oncologist appointment that is throwing a curveball in my way  for this additional appointment as something was wrong with the last CAT scan.

The appointment with the Oncologist pre getting a second CAT scan was a joke. She was a hero to me in early stages of this journey but is now appearing to be a weaker link in this process. Turns out – she hadn’t read my full notes properly. Hadn’t read them at all I’m guessing. Because as  I was called in and as we took seats (man cub and I) she asked if I had all my lymph nodes removed in the left armpit (cancer side boob). I sat in outright shock for a few moments, I couldn’t understand what I was being asked. The man cub nudged me back into reality.

As I responded no (totally confused as to why she wouldn’t know this already) she declared that she hadn’t realised as all her Consultants remove all ladies lymph nodes in her main hospital (where I need to get radio); but as I was consulted and had surgery in a different hospital and not advised to do this she hadn’t recognised that this was the case for me. Then she knocked out that there wasn’t any real research that said that they should remove so I should be ok, but that the radio needed to be focussed in more areas than just the boob (because if C ever spread it would go up to my neck and they needed to radio that area but I hadn’t been CAT scanned for that area).

Not gonna lie – complete head fuck. Can’t apologise for the swearing, its the only words I have at this point.

Our heads are blown. Totally blown. I can’t even work out what to think of all of this. I mean, I have already worked out that the girls in the secret FB group all go through slightly different journeys, I just didn’t think that I would have to deal with incompetence across my bloody treatment. Three hospitals, but one oncologist. Surely she should know what the consultants are doing in other hospitals. And should I be worried that ‘her’ consultants in the radio hospital just clear out lymph nodes but my consultant hasn’t? And if theres no research to back this up why are ‘her’ consultants clearing out ladies lymph nodes for fun? Aaaagh, too many questions that I can’t quite deal with and I daresn’t go down google craziness. I will actually lose my shit at that point.

So I’m back in a swimming pool sized cubicle (40mins later – but no stockings in sight this time, I have learned!). Gown on, and waiting to lie flat on my back, boobs out and get more crazy measurements yelled while a laser passes over me. Just great.

All of this debacle and delay because someone didn’t spend 30 seconds more of her time reading my notes. 30 seconds and I would have saved the NHS probably in the region of a few hundred pounds. Maybe thousands to be fair considering the machinery involved. 30 seconds. That is all I have to say. Aaaaaaagh.

Returned to work and calm resumes for my gorgeous colleagues. Might have had a little rant but none of them need to hear my full on madness so I tone it down a level and just do midway rant! It sounds utterly selfish that my biggest issue with all of this is the time delay and that I am worried about my holiday with the family. I’ll get there though.

Then tonight kicks in and I am absolutely ruined.

Asked the man cub what some recycling was in the bathroom (some plastic that I couldn’t work out what it was). The cub pipes up ‘it’s your needle cases mama’. [how has my cub got this wise and savvy and knows this before my addled chemo brain works it out, while never watching me administer said drugs and needle into my stomach every three weeks for five days? Or so I thought].

Tuning into the positive I reassure the cub that I am done with those needles and that I am getting better now. She then declared that she was still sad that ‘you’ve got no hair, no eyelashes and that scar’. Oh my heart broke again. She got a big squish. This is what keeps bringing me back into a sink hole. This is where my sadness keeps reigniting. My cub and all of her innocence should never have to deal with this. Yet she is, and she is bossing it. She is stronger than I ever imagined and she is being a superstar about all forms of this conversation.

Through her, I know I have this. I will keep the strength that is needed to have this from her strength. And we will make this journey end.

Another couple of curveballs…….

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01/04/19

The irony is not lost on me that it is April Fools Day and I am technically ‘full on’ back at work following broken up weeks of chemo and isolation! So, I’ve chucked a little days leave in tomorrow for some self love. As its a Monday I spend the day trying to get some motivation going, all the while knowing that I am off tomorrow and I am going to have a lie in and do sweet nothing!

02/04/19

My day off!! I have a lie in (after obviously getting up for an hour and rallying the troops out of the door – sandwiches made, teeth cleaned, uniforms adorned, bags packed and kisses dished out). When I finally got up I decided that I needed a plan for radio so rang the ward and asked them to confirm my appointment times. I don’t like not having a plan (well, not for the most part) so this has stabilised me somewhat today.

However it has been the only thing keeping me on an even keel. I have dry skin, am tired, have puffy eyes, stuck eyelids with no eyelashes, feel generally a bit shit, thinking why me, tidying after my cubs, ironing, and cleaning. Generally feeling sorry for myself while trying to maintain normality. And I realise that this is why work has actually been good for me. Months back when I was told by the lovely chemo nurses I had to stop working I reacted in horror. At the time I thought I needed work to keep me sane. Today I know I need work to keep me sane. Left alone to my own devices allows dark thoughts to creep in and my mental health starts suffering. Much as work is a little bit bonkers at times it is a big factor in keeping me going, being a welcome distraction to me and allowing me to regain some control over my life. It may not be for everyone but it has been my god send and I absolutely believe my family would have suffered more if I hadn’t had the distraction of craziness (I also love it so that helps!).

03/04/19

No. Just no.

You couldn’t make this up. I missed a call today from the new hospital who were about to administer radiotherapy and when I rang them back, the Receptionist advised that I needed to come back in for another CAT scan as the Oncologist wasn’t happy with the last one and wants another one done. WTAF. No detail beyond that. No reassurance that nothing was majorly wrong. No clue as to what could be wrong. Just that I needed to come back in.

Then the kicker. This would delay my radiotherapy for a week. Another whole week. Which would take my end date of radiotherapy right to the end of May when we were supposed to be going away for a week for the man cubs birthday and a celebration that we were done with Cancer and active treatment. That we had conquered this last year. However we are now being pushed to the limits.

The lovely receptionist then proceeded to ask if ‘that was ok’. Well no. It’s not bloody ok. It’s frustratingly not ok. What a stupid bloody question to ask me. Again I am floored by the utter lack of empathy by the staff that work the outer perimeters of treatment and their lack of training on how to deal with people who are already on the edge or passed tipping point. I can’t work out where I am today.

I rang the man cub in hysterics, which wouldn’t have helped him at work neither. But I can’t put my lovely work colleagues through my hysteria. They have to cope with my absence and general lower work output as it is. The last thing they need is me having a meltdown in the office!! I spend ten minutes ranting to no avail to the man cub, as he can’t change this outcome. Then I pull myself together, give myself a pep talk that CP would be proud of and crack on with the day.

Tonight I have got madder and madder though. I’ve been closer to Dr. Google than I have ever been, just to understand what this might mean. But I’ll send myself crazy mad with alternatives and my pragmatic head is holding its own that it won’t be helpful. I am also mad that my treatment will be delayed by a week – because what they’re actually saying is that it will take a week for the oncologist to review the results. I appreciate her caseload must be hundreds of people, but surely just get me through the process and I’ll be out the other end quicker and off the caseload. Aaaaaaaagh. It’s been a long night of procrastinating and swinging between cross and mad or mad and cross. There is a very fine line.

04/04/19

Wake up today in a corker of a mood, having gone to bed in a corker of a mood. No amount of sleep was changing that today it appears.

The morning didn’t really get better. As the cub is giving out the hugs and kisses as is obligatory for most mornings (she’s a right hugger and as I said, she’s getting a bit more clingy now this final phase is kicking in), she asked me a question.

‘Mama, what do I do if I miss you [insert my first internal reaction of ‘while you’re at work?].

Nope – this was the actual conversation:

‘Mama, what do I do if I miss you when you die?’

………………………………………….cue a little bit of silence as I process as quickly as possible how I respond to this while also simultaneously trying not to burst into tears and reveal that this is my biggest fear and why I saw a Clinical Psychologist in the first place.

As I stuttered through a response while the man cub is oblivious to this in his morning shower, I reassure her that I will always be in her heart and memories. That she can always conjure up images of good times we have together and I will always be hugging her wherever I am (I don’t even believe in an afterlife but at that minute I wanted to believe it for my five year old). After a few more real hugs pacified her, and the distraction of morning toothbrushing took over her main thoughts, I retreated downstairs to deal with the mundane tasks of getting ready for work.

How I didn’t break there and then I’ll never know. I’ve actually held it together really well today. But I know that this is going to get to me. This is going to pick away at my edges of sanity when I am having my dark thoughts. Because my five year old innocent angel has had to talk to me about death and question what she will do without me. Five year old. At five she shouldn’t be worrying about a singular thing in her life apart from whether she has been allowed to dress herself in what she wants to wear (and to be fair she normally wins that battle as I can’t be chewed to ever have that fight!). At five she should be worrying whether there is enough paper in the house for her to cut, craft, glue, make crap out of, or enough glitter in the world! Not her mama dying.

This week was supposed to mark the first full week post chemo that I would return to a level of normality. What I have actually done is gone backwards. Hit a wall, and then travelled backwards. Cancer and all of its gifts has continued to rule my life and that has thrown me somewhat. But I will get through this.

I will have this last part of the journey. I will get through it. I will be there to hug my cub as many times as she wants, whenever she wants, always. She has my heart and soul. And I will have this for her.

Cheeky family weekend away – nailed!!!!

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28/03/19

So after a long morning today getting radiotherapy ready, I head back into work to attend an afternoon tea for Inspiring Women across the larger organisation that my work feeds into. Someone I know, someone cheeky but gorgeous nominated me as an inspiring woman. They went out of their way to submit an nomination with me in mind. I can’t even describe how that makes me feel. How someone who is remaining anonymous (I’ve made some guesses!),has gone out of their way to make me feel wonderful. God, some people are absolutely gorgeous. Humanity can seem a bit crackers at the moment but my belief is restored sometimes. I had a lovely day – I mean I felt like the most noticeable person in the room for the first ten minutes (the only bald, ill looking person) but then I had a wonderful afternoon tea and sat with another wonderful friend from work and I enjoyed my time. I really did. So thank you my little angel!

29/03/19

I have pulled it off!! I have nailed a surprise weekend away without giving it away. Absolutely nailed and feeling a little smug!

So yesterday I fibbed that I needed the car as I had meetings across town and it would be easier for me! So after dumping cub at breakfast club, man cub at work and arriving at work myself I threw myself into a half day and ended it with a lovely lunch date with my first walker sign up (remember that 26 miler I’m doing in July?!). Madness. We made a few arrangements and I then hurtled home to pack for three of us for a weekend away and that is where I came unstuck. I am absolutely not one of those people who packs clothes for their other halves. Never have been, and never will be. He is very particular about what he wears (to me they’re all shades of a t-shirt!). He is very much his own person and wardrobe and I never get involved with that. So I stood like a bloody dithering idiot and picked a good ten outfits to pack (for two nights!!!!!!!!) just in case. The cub and I were easier to pack for!

I picked her up from school, after letting her in on the secret on the walk in to breakfast club, we flew home to get changed then set off to pick up her daddy. Slight problem with traffic, and when he rang to ask where I was, she was covering her mouth in the back of the car so the in-car speaker didn’t pick her up! While I fibbed again about where I actually was.

As we pulled into his workplace, the sun visor on the cubs window actually hid her from view and as he opened the boot, she yelled ‘surprise’……… And there was silence. Before he questioned what was going on! I had done it. He was surprised. We were escaping the doldrums of appointments, hospital waiting rooms, illness, our own four walls that were starting to become tighter – and we were going to live as a family for the weekend. Forgetting the cancer cloud that overshadowed everything we did. We were going to be free………

A short hour later, we reached a wonderful little holiday site and were introduced to our lodge (for those of us of a certain age – this is actually a static caravan, but a lot nicer than the ones we stayed in as kids, and now referred to as a ‘lodge’ so sounding much more attractive but way more gorgeous than a static) and welcomed by Karen, the lovely manager (possibly?) of the venue. She took us over to our home for the next fe nights, showed us how the oven worked (won’t be using that this weekend!), heating functioned (might use it – we are in middle UK in March!) and if we had any problems we could give her a knock in the site office or give her a call.

This offer led to much hilarity within the next few hours that Karen would never be privy too, but the man cub and I have recounted as the weekend has gone on. Within 10mins of Karen leaving and while him and I emptied the car of clothing, food supplies, alcohol and games to keep us entertained, we made the final journey into the lodge to find the cub pulling her wellies on and declaring she was off to see Karen. When asked why, she exclaimed that there was no bath to be found in the lodge and while two showers in the en-suites was lovely, this was a ‘problem’ as she needed a bath on a Friday and Karen had said to go to her with any problems!!!! After much discussion, we managed to talk the cub down off the edge and realise that the problem wasn’t something that Karen would be able to solve.

Some couple of hours later, after getting truly settled, fish and chip takeaway, and a good glug of drink from us adults we made moves to put the cub to bed. As the man cub asked where I had packed the PJ’s for the cub, I had a sinking feeling and realisation that I had forgotten this significant bit off clothing in my haste to pack for three people. Within seconds the cub was back at the door, wellies on, declaring she was off to see Karen again as this was a problem and Karen had said she would solve them.

By this point I was no more good.

It took another good twenty minutes of negotiations with a headstrong five year old that again, Karen wasn’t going to be able to solve the issue of PJ’s being missing, and maybe one of mama bears t-shirts would make do for two nights away!

Tonight we have laughed harder than we have done in a long time. Karen has no idea that she has made our night, which is all the more sweeter. We are spoiling ourselves, taking time as a family to recoup before the next stage of this journey and making sweet memories. I didn’t realise how much I had needed this, but now I have done it I recognise how valuable it has been to escape. For all of us. I mean Karen has actually made the holiday without realising, but we have also escaped reality for a few days. And that is beyond priceless.

I will return to the journey I know, but for now I am living my best life with my favourite people. I have them in my pocket always.

Oncology …. readiness for Radiotherapy

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28/03/19

I’ve had a bad couple of days following my Heart of Darkness delving. Its made me cry a lot! Too be honest, I’ve cried about my hair again and tried to bury the actual reason why I wouldn’t stop crying. My hair is still my nemesis here. I hate it so much and am so upset that it still bothers me so much. The visual look is so shocking and awful that I am still reeling every day from it. Aaaagh. I have become a mirror avoider, I was never the biggest fan of looking in the mirror anyway but now not doing any makeup (as what’s the point?) I am avoiding it full stop and purely relying on the man cub to tell me if an outfit falls short of the mark. Hopefully he doesn’t let me run with a bad one – I don’t think he would!

But back to today, a 6am start (cheers cub!) and squishy hugs in bed for an hour before we finally faced the day, I was ready for the Oncologist at a new hospital, a new environment to me, to get ready for the next wave in the journey. Today is the start of the radiotherapy journey. I can’t get through this quick enough. We were also testing the water as the 40min journey can be variable as the weather. As younger adults we both worked in town so know the craziness that the traffic can pose (and a random accident can set everything off by an easy hour). We’re still trying to work out logistics of how I can get to 20 appointments over four weeks with one car, a cub that needs school and a man cub that needs work in the opposite direction to the hospital. As if I haven’t got enough to manage and sort out already while still working full time. FML.

So 75mins after dropping the cub in breakfast club, we arrived at the latest hospital in my journey (with a random detour into a housing estate when I read the sat nav wrong!), and while we were on time for the appointment at 9am, I still waited 30mins to be seen. My admiration for the Oncologist is rapidly falling down the ladder. Wasn’t helped by the Receptionist who checked me in – what’s your name, Morrison, do you have a car park pass, no not yet, let me check (thumbs through a lot of envelopes) – no we don’t have that here yet so let me check you in for your appointment, thank you, hmmmm what was your name again, Morrison, oh yes I did see that in the car park pass pile – I thought you said Charlton. The man cub by that point had took a seat and was looking thoroughly disgusted!!!

I mean, don’t get me wrong – I am grateful for the car park pass! The hospital kindly give us cancer patients a pass. So for the princely sum of £10 I can park everyday for radiotherapy and appointments for free. Bearing in mind hospital parking costs (and the fact I used to have to be in chemo for three hours or more before it dropped to a pound (still had to do some paperwork and leg work for that!) ) I’m ok with the assistance. I’m not sure if its just a cancer thing or whether they do this with all patients with reoccurring appointments. I’d like to think I wasn’t that special with the cancer! I also forgot to tell you all that when I rang to get the pass, they told me to keep it once I was done with it – ‘incase I ever needed it again’. Well, that was a positive little conversation with them, wasn’t it. Cheers for that. I’ll anticipate secondary cancer and I’ll be back here in a couple of years to reactivate my card. No thank you. Oh – the bloody customer service / messages that NHS staff have with people really needs a revisit. It really does.

So I have completely digressed into car park payments, so back to the new waiting room. It is a brand new wing of the hospital (brand new – read in the last five years) and it is lovely but still feels like a hospital. We sat in uncomfortable seats, surrounded by some nice art work. But were thoroughly bored. The only interesting thing I did read was that there was a Maggies Centre at this hospital (don’t have them at the previous two hospitals where I have been treated), which is a space to go when waiting for appointments or between appointments. I might need to visit that space. And find out more about it.

When I was finally called for my appointment the Oncologist discussed the side effects of radio (I still haven’t fully read the ridiculously long document!). Radio will require some tiny tattoos (still don’t know what this is), could affect your lungs and breathing (great), could affect your heart (lovely), could cause furthers cancers in 20 – 30 years time (smashing), will cause skin dryness and burning (bring it on), and further hair loss (I don’t have a single hair on my body to lose – not a problem!!). She then asks would I like to sign to say I consent. Well YES mate!! Of course I want to sign that. Dear me, these healthcare professionals need to slant the messages in a different way. I really think a marketing team need to get behind NHS staff here so folk like me don’t start tearing them apart. I could easily be swayed to not do treatment based on this matter of fact attitude as there is no positive mentioned in the analogue. And while I am a trusting member of the non medical world, I am slowly starting to understand why people start checking out of this process. The clinical, sterile approach to something that is so devastating is hard to reconcile. If I was a pure Google fanatic I would be dissing this off very quickly I’d imagine. I know that I could easily be swayed by alternative medicines (which I am not against – just haven’t read up on), that have a positive marketing spin, as this negativity is wearing me down.

The laissez-faire attitude is done in under two minutes after I sign the paperwork without a murmur (shocker – I’m such a conformist!), and I am sent to get measured up for a positioning situation to have the daily radiotherapy. We are due to wait another 50 minutes. We wait 90!

The man cub is more furious on my behalf at this point. I am a bit more benevolent. I know I am a number. Much as my lovely Pauline and consultant have been amazing, this isn’t a norm and its hard to see how it can be. My Oncologist must have a caseload of thousands (considering how many people I see in waiting rooms), so why would I be special? I have to trust that she has read my notes, made a recommendation and trust the process. There are also people here who are numbers too. Waiting in line to be seen for 10/15/20 mins just to get whatever treatment it is to move onto the next stage of the journey. I guess I am becoming slightly immune to the waiting game and accepting that once I am in there – if I take longer for an appointment someone else if going to be waiting. And that is ok.

When I finally get taken through to the changing room, I suddenly realised the hilarious situation – I had a pair of long stockings on under my dress (it was a tight fitting dress!! And I am going straight back to work and have meetings which is the reason I am doing smart wear!). I had to take the dress off to put a gown on so I could get my baps out for the scan. Geez, I absolutely rolled about laughing as I was waiting in the smallest changing room ever (think swimming pool size!). Stood there with suspender tights on, knickers, no top half clothing, just a gown. Utterly ludicrous!!

What followed once I was called was also ridiculous crazy situation. I had to jump up onto a solid hard bed, legs propped up by a v shaped cardboard cut out, then I had to throw my arms up in some stirrups. The glamour had hit new lows, this was a smear test uncomfortableness for boobs on steroids. All of this was also not helped by the young trainee student (the hospital is a training ground for radiographers) who was a lovely young man who looked more uncomfortable than I did!! (I am not against trainees but first appointments for this craic aren’t great for the poor patient). There was then a lot of measurements (from some laser red beams that I couldn’t see) shouted out; permanent tattoos (tiny pin prick ones) put on my body (and also a lot of bloody pen marks which apparently won’t be permanent!), and a swing through a tiny MRI equivalent (I did have a mild panic that it was a big machine and I was face up but it was only 10 inches wide if that!). Then I was told that was it. My dates would be given to me by Reception for the first few weeks of radiotherapy. I was free to go until my life was going to be dictated daily by a 10min appointment. Every weekday. For four weeks. Yay!

But I have this, and four weeks – 20 school days; is nothing. I will get through it

Heart of Darkness

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25/03/19

Broken. I was broken today. BROKEN.

Yep, today was the day that I went to see my CP and had to deal with the Heart of Darkness.

I was distracted this morning and my eyes are back to crazy weepy, blurry, dryness, painfulness. Chemo is still dealing its cards. I’m a bit worried about it but I need to be patient and get chemo drugs out of my system so I can get them checked properly. I got a new phone today so tried to distract myself with the childish excitement of getting a new toy. It didn’t help!

After trying to nap as its my low immune days and I’m not at work, I got myself ready for my CP appointment. I am full on dreading it. I have no idea how I am going to get through it!! So I drove myself (traffic was trying to help me avoid as massive queues but I made it right on time!) after telling the parentals that I didn’t have an appointment as I couldn’t deal with my daddy seeing the state that I might come out in.

CP eased me into the session taking me through how my mindfulness was going and whether I was making the most of my worry time. Mmmmm, I fib a little as I know I haven’t done anywhere as much as I should / could. I still wing it every day and am only tapping into these techniques when I really feel down. Which I know defeats the purpose and if I use the techniques every day that I could reduce the effects of my bad days. It is so hard though when I’m not conditioned to this way of self care, and have managed pretty well so far in my life.

Then BAM. Into dealing with my actual emotions. And off I blubbed! Immediately got right to the point that it is my gorgeous cub that is causing me the most pain and angst. That my whole world revolves around her and that the pure briefest of thoughts of not being around for her sends me into an absolute spiral. I’ve ceased up writing this. Its so crazy. At 25 years old I didn’t want kids – would have happily had my tubes tied. At 30 I was still living life in the fast lane and no kids featured on my horizon. My biological clock kicked in at 33 and I then spent two years persuading the man cub that a mini cub would be a great addition to our family! He finally agreed!!

But I’ve realised today that it is purely her that is driving my darkest thoughts. I guess I see that everyone else in my life – man cub, family, friends – can look after themselves if I wasn’t here. And don’t get me wrong, I know she would be loved, adored, looked after and thrive, BUT I want to be there, I want to see her grow up, I want to support her in all she does, I want to witness what she achieves.

At the point I could feel myself tipped into the crevasse, I turned the conversation back to a rational and logical approach and told CP that if I could help other people and that if my story made people check themselves then I had achieved something. He might as well have bollacked me at that point!!!!He paused me right in my tracks and told me that we needed to deal with these emotions surrounding the cub and how I could deal with this going forward.

And that was it. That was when I actually broke. I got to the real point. Not just the fact that I love this gorgeous cub and want to see her become amazing. It is because I feel I’ve failed. FAILED her. That its my fault that I got cancer. Its my fault that she’s living with this. Something I have done has caused this (there is obviously no actual evidence behind this). Something in my lifestyle has made this happen. I haven’t fought hard enough. My body has failed her. I have been too affluent in my choices. I have been selfish. Those words – I have failed. And CP stops me. He corrects me. He tries to bring me back on track about why I feel such devastating sadness and again I flip into my pragmatic head and pause the tears. I know that I am being irrational and that tears aren’t actually going to solve anything here and now.

But CP pushes me again. He challenges me on the word ‘fail’. Cancer is a silent enemy, living within us, and maybe my vices have led to my body not being sharp enough to defend against the sneaky little bugger. Have I failed. Maybe I have. I failed to live the cleanest life possible to make sure my cub wouldn’t deal with this. I failed to appreciate fully the life we are given is a precious gift. I still keep failing as I can’t beat the habits (I mean I am going through a challenging time, so breaking habits at this moment in time is quite hard!).  CP reminds me that Cancer doesn’t discriminate. It can appear in the healthiest clean living human, or the most unhealthy vice driven. I’m probably somewhere in the middle! And I then cried. Cried for me. Cried for my cub. Cried for my man cub and my family.

Its so hard because there is a constant ‘why me’. I mean, I wouldn’t wish this on my worst enemy, but I still say ‘why me’ in my head a lot. I guess its human nature. I mean the man cub and I laugh at how unlucky we are at times. We could win the lottery and lose the ticket!! I mean, we live the ‘sods law’ rule most common days!!

I walked out of the appointment truly feeling the lowest I’ve ever felt. But also weirdly satisfied. As I had finally cried about some of my demons. The devil sat on my shoulder. And I had got the words out and finally made connections in my mind about why I was so sad. It absolutely makes sense why I do feel so desperately sad and this gives me a new power. I have control again.

And I will have this battle too.

Brave the Shave

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Ooooooh, ooooh, oh. I’m so very tempted to get involved in a FB debate but I absolutely will end up being trolled and I never get involved in these situations but I am itching. My fingers have typed the message out five times and I have deleted it five times.

Let me explain. Macmillan are running two fundraising campaigns at the moment – Brave the Shave and Stay up all night. Now you can imagine which one I have my knickers in a twist about!

The comments on Brave the Shave have lit up. So I have spent the last ten minutes reading all the comments (and rights to reply) and considered everyone fairly and objectively (bearing in mind that is taking all of my lovely CP’s work with me to do this). Then BAM. I happen on a comment that has really tipped me over the edge – it went something like this:

‘I think its amazing, if I had cancer and lost my hair through chemo and people did this to support me I’d feel so much better’.

Can you imagine my fury at this point. If. If. If. IF. The operative word there is if Miss Poster. Wow, just wow. If you had cancer, you’d actually know how it felt to lose your hair and maybe you might have the same feeling, but possibly, quite possibly, maybe you won’t. You can’t hypothesis about this situation. Until you live it. Nothing in life prepares you for losing your hair. Nothing. Even if you make the decision. And bear in mind, I did make the choice in the end. But it didn’t change the pain.

I am six months post chop and the hair is growing back Sinead O’Connor esque – its at the very least all the same length (a bit grey!) but it covers my head and I don’t look so ill as along with my head hair, my eyebrows and eyelashes are back (well – getting there!). So I’m feeling OK about looking in the mirror again. OK, not good, but OK. I can actually laugh now when people talk about their bad hair days (my little wicked demon is also back so taking great pleasure in this!). Not having hair has made me realise that we talk about hair a lot. Whether that be because it looks a bit shit, the weather is that misty wetness that makes it frizz like a poodle (my old look pretty much every day!), its having a wild day, it needs a cut, I need to get to the hairdressers – its desperate. Then as I am nodding along, I also see a level of realisation creep in. You can see the ‘aw shit, I’m talking to the bald lass’! The conversation usually gets changed or ended quite quickly and my little devil has a wee chuckle!

So while I am in a much better place, lets consider the argument that Brave the Shave raises a lot of money. Which can do an awful lot of good – paying for nurses, counsellors, research, etc, etc, etc. Regardless of the ignorant comment the there is a cure and the government are hiding it (I will absolutely write about this – a whole other story), the split of people who like this kind of fundraising and those who don’t is about 50/50. 50% are loving it, arranging fundraisers, shaving heads. 50% are getting mad, think its disrespectful, don’t understand how anyone doing it voluntarily can feel the pain. Oh it is so divisive. I’ll also go one step further and challenge the word ‘brave’. How is it ‘brave’ to shave when you walk into the pub, social club, location of event; knowing what you are going to do and be prepared. How ‘brave’ is it to shave when your hair is already falling out in clumps and causing distress beyond your wildest imagination?  Is any of that ‘brave’? I really don’t believe it is.

But then there are comments about solitude. A support from those who do the shave in support and solidarity for family, friends, besties. I’m pleased for these people (honestly, this isn’t patronising), if their mates or family help them with solidarity in baldness then I am pleased that they find some comfort in this. But that also doesn’t reduce the validity of feeling from others like me who don’t get it. I do not need anyone else to do this with me. I can’t imagine having the man cub, my dad, or anyone else for that matter – shaving their head in solidarity, no matter whether it came from the best of places. And I did have the offer. But I could never in sober life have dealt with it. I didn’t want to do it myself – why would I ever put anyone else through it?

This is such a personal journey. For those going through it and those supporting it. It will always cause controversy but as a fundraiser I get that it probably is an absolute winner. A further comment has struck me though:

‘They lose their hair but don’t lose their eyelashes, eyebrows, body hair; and Macmillan are exploiting the worst time of peoples lives’

This – just this, rings so true. I looked tragically ill for months when I had my hair shaved. Regardless of how many people said it was fine, I avoided mirrors like the plague. I couldn’t deal with what I looked like. I have no photos at all of that period of my life (which upsets me as the cub and I always have a cheeky selfie on a weekend morning). So much as I am happy to fundraise (I’m walking 26 bloody miles soon to raise money for Macmillan), I just can’t get on board with this campaign. Going back to those who have commented on the post positively, they appear to be from people who haven’t gone through a personal cancer journey (willing to be corrected – just my view), and those who are upset by it seem to be those, similar to myself, who have dealt with the raw emotion of having to do this and it being out of our control.

So, my final thoughts. After re-reading a lot of comments, my own spiel above and a lot of thinking.

If you are thinking of doing it, please consider those friends, family or relations that cancer has touched. Check in with them and see whether they would view it as solidarity or whether it would upset them. Make your choice from there. If there is a positive response, please go for it and raise as much money as you can as every little helps (whichever charity you choose). If someone even makes a murmur about it in the negative, please consider another option – say a 26 mile walk (!!), running a marathon, giving up a favourite treat, anything; please find another way.

For me, please never shave your head. The distress for me is still so palpable and although it may improve with time and distance (and hair growth), I do know that someone trying to show me solidarity will tip me into a void that won’t be a good place! And much as CP worked his magic on my mindset, I’m not sure I’m that mentally well to deal with it. In time I may decide that I will keep the shaved head – to be honest it is a doddle to manage, or I may decide that I will spend a small bloody fortune each week getting my hair styled (don’t tell the man cub). Whatever I do, I don’t want to confront the idea that someone is voluntarily making a choice to be bald . Don’t judge me! I will also make efforts not to judge those who show their support in this way, much as I may disagree.

If this journey has taught me anything, its that we all weave a different path. This is mine. I am being honest. I am trying to be fair. I hope I have managed to convey both.

My 6th chemo card marks the real end!

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18/03/19

After a long Sunday yesterday where I slept a lot (or attempted too with a five year old in the house!) and got frustrated with life, I decided that at 5am today, it wasn’t going to be a day that I could go to work. I hate that I’m being flaky with work but I am so tired. Tired. TIRED. I can’t even explain the level to anybody as it is nothing I have felt like before. I absolutely need to go to work tomorrow as have a meeting that I do not want to rearrange. I need to drag them big girl pants on, my best outfit and heels and smash it like the old me would have done. No matter how bloody tired I am. I might have no hair but I can still be fierce in a meeting when needed. So today I am went back to bed and tried to sleep so I could be a functioning human tomorrow. Then tonight I wrote my first post about the clinical psychologist and it took me back to that place again. I think it was particularly hard as I know I have the ‘Heart of Darkness’ session coming, and writing about what I should be doing to help my mental health I know that I don’t care enough about it, I need to care more.

19/03/19

So Tuesday kicks in and I feel like I haven’t slept at all. I had my eyes shut, but I literally felt awake all night. I made the cub cry as she ate Sports Mixture for breakfast – apparently she heard me say yes to the question of whether she could! I fell out with the man cub as I left the cubs jacket at home and had to do a U turn on the way to school, traffic was abysmal to work, and I needed to nail a meeting. God – today was the day I wasn’t catching a break.

It got better – I was talked too like a child in the meeting. Now, for those who know me personally you have just sucked in air through your teeth. For those who don’t know me, please suck air between your teeth. I do not tolerate being treat like an inferior. In fact it makes me madder than a box of frogs, so I get sassy and sarcastic. I then got what I needed and left on my heels with my bald head held up.

Back at work, I had meeting, after meeting, after meeting and picked the man cub up in a state of tiredness like I could sleep on a clothes line. I then managed to whack my knee so badly that I could barely walk. It has been the longest day in recent history (!!) and I am done in. Bed is beckoning.

The saving grace of the day was that I got my last card in the series of six for my chemo. ‘Bald, brave and bloody beautiful’. Halfway through today I opened it and could have blubbed right there. I was not feeling the brave and beautiful but I was certainly bald!!!! It made me laugh and feel fabulous all in one go and that is some feat these days. I am forever grateful for my six ‘chemo’ cards that have helped me through (and the accompanying food that came in amongst it!). I also honestly don’t think my support network realise how much I appreciate and love all the little messages, cards, flowers, presents and general encouragement. And much as I am a ‘brush off’ girl and accept them with a nod of thanks, I honestly deep down couldn’t appreciate them more. Its just I know I would break properly if I showed any more gratitude face to face. I’m on a precipice most days and I daresn’t cry in front of anyone as I probably wouldn’t stop and that isn’t cool!

21/03/19

I have cried in the shower this morning, proper blubbed – it wasn’t because I was tired (that probably didn’t help!), it wasn’t because I look terrible (I do!), it also wasn’t because my heating had just broke down (give me strength), but it was because I am sick. Sick of everything. Sick of being tired, sick of feeling like shit, sick of not being able to deal with life itself as successfully as I used too, sick of the endless wallowing in self pity (and here I am doing it again), sick of not feeling like I am being enough for my cubs, sick of putting my life on hold. The list could go on, but I don’t shower that long (the man cub takes longer than I do!) and I had to pull my big girl pants on and give myself a good talking too to be the fierce mama and work face ready (I mean I didn’t do great on those accounts but I made it through!).

I’ve remembered that I am doing the ‘Heart of Darkness’ on Monday and I have to get through the weekend before facing that treat! I’ve fibbed to the parentals that I don’t have an appointment so my dad doesn’t take me as I don’t think I could do the session and then come out and blasé a conversation with my daddy. Because I fully expect that I am going to be broken. And I know I have to do it. But I have done over seven months of this damn journey and much as I have blubbed (this morning!) I actually haven’t broken. Really, really, really dealt with the emotion. I’ve cried – then shut it down. I well up and shut it down, I actually cry and shut it down, I blub and I time it so I have to shut it down. I have a sneaky feeling that my CP is going to make me deal with it and not shut it down. God dammit!!

But I will deal with it. I will have it. I had this week and I will have next week. Because I have got this.

Not my 40th Birthday day

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‘I’ve got fuzzy little chin bones’ – words I uttered tonight, but never thought I would utter at the grand old age of 40!!! Never mind anytime of my life!

It has been a long day. The man cub struggled from the get go. No happy wishes, no cards, no gestures – which is what I wanted; but the pain was etched on his face. He wanted to mark the day at the very least but I was staunch in my approach to it. I felt absolutly dreadful after no sleep, chemo drugs still swilling inside me, looked terrible, and wanted to sleep for weeks. I had no celebrating in me.

I had a couple of messages from people who didn’t know I was postponing, and a few cards. I also got flowers from my bestie – not for my birthday, she knew, but they were just flowers she said!! Then my parentals turned up to take me for lunch with an orchid – again just flowers and just lunch. A normal day!!

I can’t compute though, that ten years ago I was having a meal with family and friends at a lovely local pub, watched the rugby in the afternoon after the parentals were dispatched home, got drunk and refused access to a Wetherspoons (I wasn’t even trying to get in there!!)!! I then tumbled into bed and had a very long lie in the next day.

Ten years and some life changing moments since – a five year old now rules my life and Cancer is ruling my head. Who can anticipate those changes?

I’m pretty sure the five year old took five years in persuasion! Thirty changed my mind on the cub front and the ovaries started twitching. The twenty year old me would have had my tubes tied. The thirty year old me decided that they needed to work. I never knew that I could love someone so much and who would melt my stubborn heart.

The Cancer wasn’t something I twitched for. At twenty eight I had pragmatically dealt with a little pseudo lump which was removed and no issues. Why this couldn’t have been the same I don’t know. Life deals you melons sometimes. This last year I have dealt with two surgeries, MRI’s, mammograms, ultrasounds, chemotherapy, loss of all body hair, sickness, nausea, looking like pure death warmed up. And through it all that little five year old human has being the centre of my universe (don’t worry the man cub knows!) and has kept me going throughout. She is the reason I get out of bed each day and has been my motivation, my desire to keep going, my  light at the end of every day, and the reason behind my tears every time. She was the first person I thought of when I was told I had Cancer and the last person I think about each night. She makes me so happy but also fills me full of my worst sadness.

The man cub and I have reminisced all night, reliving memories over these last ten years. How we didn’t appreciate a lie in as much as we ever should have. The fact that I had a clean house for weeks at a time before I had a whirlwind cub. That we have always been positive and will always ‘try’ to be now. But we keep coming back to the current situation. We try and make sense of it. And we can’t. We are both irretrievably changed and there’s no going back from this now. The day ends a little bit drunken, like it did ten years ago.

16/03/19

After getting through a crazy day yesterday and it being Saturday, I’d asked the cub to play in her room until at least 8.30am if she woke early. She had my digital alarm. She arrived at 6.30am and asked me if that was before or after 8.30. FML. Clock reading is now priority of the near future.

I’ve tackled school shoe shopping today in the biggest shopping centre and I honestly thought I would fall over my own feet at one point. The poor cub ended up getting a mediocre pair of shoes as I had nothing else to give at this point. I am fully planning a day in bed tomorrow to try and prepare for a Monday back at work after chemo, but by, I am so tired. Its so hard to explain to anyone, but even when I had a newborn – those weeks between 0 and 6 when everyone says it gets better (and it does, but they are the longest six weeks in the world) –  I wasn’t this tired. My bones didn’t ache. My head wasn’t in constant conflict. My body wasn’t failing me.

Tonight I have dragged the man cub to bed at 10pm. Unheard of on a Saturday but I have bizarre pains in my legs and just want him to be ready if I need to go to hospital. It is the first time I have ever felt like this, like I might need to do a hospital dash. And it has me in a little panic about whether something is going on in my body. Its like electric shocks riding up and down my legs. I am unsettled. I feel light headed and haven’t had enough drink to make that happen.

I’ve laid in bed for hours, dramatising the worst case scenarios and I need to sleep before I get consumed by this latest twitch. Because I’m damned if I am not going to get through this.

 

I am going to have this night. I am going to have this bloody fight. I really am.

Final chemo!

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13/03/19

Its final chemo day!! Yay!

I anticipated a lie in, but forgot I had left my phone downstairs and left it set for an early work alarm. That was helpful! Then the cub was awake before she ever is (as if she knows!). It mean that I opened a beautiful card from a work colleague who had a way with words today and I was nearly blubbing before the day had started. I’ll get her back for that!!

We did the usual morning madness and then braved the school run before heading to the hospital. We were there at 9am, caffeine in hand when we hit the ward. The girls were lovely and welcoming as always and made a big fuss that it was my last time in there. I couldn’t quite believe it myself. This was number six. Number one feels like an age ago and my hair loss feel like an age ago. We’d bought nice chocs (they put the selection boxes out so I wanted the girls to actually have them) and wrote a card which the cub also put a little message in – that brought them all a little tear as she had said ‘thank you for looking after my mama’.

By 9.30 I had the needle in my hand (first time lucky!) for the last time. After a saline swill the docetaxal was hooked up to me at 10.15 for the last time. As the nurse sorted me out ready to let the drugs drip in for the next hour she mentioned the bell. That bell. The inscription ‘Ring this bell three times well, its toll to clearly say; my treatment’s done, this course is run and I am on my way’. While in my chemo session I have only ever heard the bell ring once and I was midst getting a cold cap applied to my head so didn’t really think about the celebration of the actual event. I remember thinking ‘yay for them’ then being pulled back into my craziness of making a skull cap of freezing cold water fit on my head. I’d also told the man cub that I didn’t want to ring the bell after chemo as I wasn’t technically finished active treatment.

But…. I spent the next hour thinking about it. It was all I could think about. Maybe I did need to say goodbye to this treatment and make a deal of it. The end of another part of this horrible timeline – maybe it would help me put it too bed. I muted it with the man cub who was doing a smashing job of sleeping vertically and he was, as always, supportive of what I wanted and needed. I just wasn’t fully committed yet. As the docetaxal dripped its last drip and I was re-hooked up with saline for what would be the last half hour I spent on that ward, another nurse said she’d start rounding up the nurses.

At that point I felt good pressure to make a sign that I was finished with this part of the journey. My needle removed (nasty bruising and bleeding but worth the pain for a first time effort in getting the needle in!), all the nurses started gathering (well those that could) and I was there – front and centre with proper sobbing tears (unexpected), the man cub recording the event for prosperity and I rang that damn bell. I actually rang it. I announced that I was done. Yes I had more to go through, but I was done with this treatment and I marked the bloody end of it. The man cub had a little tear in his eye too and I know he is run down with the emotion of this too.

We escaped the ward, headed to the car, then realised in our haste that I had ran out without my home drugs (strong strong anti sickness drugs and immune injections). Bollacks. Back we bloody went. We joked as I re-entered the door, but then the joking stopped when we realised that they only had my injections and I’d have to go back at 4pm for my anti sickness tablets. Bloody fantastic.

We went home and both crawled into bed. Physically (me) and emotionally (both of us) exhausted, we needed to have a cheeky sleep. But no – the phone rang. I laid money it was my mother and ignored it. Was just about asleep when the phone rang again. Aaaagh – I’ll kill her. Lay wide awake now, feeling guilty that she might be flapping so headed down the stairs to ring her back. Then I realised the second call had actually been the Doctors. After the mam call, I rang the Doctors and the nurse there advised me that me result had come back saying that I was anaemic. WTAF? I had chemo today. They check that stuff? Should I not have had chemo? Was my immune system too low? They wouldn’t have done it if it was. Surely? I’m now wide awake with every crazy thought buzzing through my head. Nothing is ever straight forward is it?!

Heading back to the hospital for 4pm we hit the most horrific traffic, so I jumped out of the car, trotted into the chemo ward and had a chat with them while picking up my drugs. They reassured me that I had met the grade for chemo today, but of I felt ‘more tired’ (how would I even know if I was more tired? I have never been so tired, even with a newborn!) then get in touch and I might need a blood transfusion. Aaagh, please do not let that be another thing to add to my list. I left clutching the drugs and ready to make sure that I didn’t end up back in there  (I’m about to google anaemia and food that might help it – that surely won’t lead me down a rabbit hole re: C).

So to end my crazy day, I have just done a Parents Evening. This day has been the longest ever. I am sat with the strongest of drugs swimming about inside me and I am tired, and I am trying to look like a parent that has it together for my cub. The last conversation I had with her teacher was back in September and since then I have heard nothing to say that my baby cub is acting any different than usual. After a solid performance (she is absolutely no bother) we collected the cub from after school club and I want my bed. I can already feel the metallic taste creeping into my taste buds (uugh), I have a whopping bruise from the needle.

But I’ve done it. I’ve made it to the end of this chemo journey and its been a hell of a journey (not quite over yet as the side effects will still keep me going for a few weeks longer).  This time last November I was starting out on the unknown journey. Now I know and I definitely don’t want to ever repeat it. Chemo has been harder than I ever anticipated and it has drained me in ways that I didn’t think possible. I am more tired than I ever was with a new baby and I thought that was my lowest point I tiredness. But I’ve managed to still work (quite a bit) which has kept me sane and I might be a bit behind but I’m still going.

Today I have climbed another mountain, and I have done it. I have got this, and I will deal with radiotherapy in the same way. It’s the only way I can keep going.

Babysitting and bras – its all kicking off!!

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09/03/19

Today is the first day we have ever dropped the cub off for a play date and left. Followed by an afternoon of freedom! Wooohooo! What that meant in actual reality is that we have had an afternoon nap, watched Scotland lose their match in the Six Nations and then counted the minutes until she came home. The house is mighty quiet when she isn’t here and it is so strange now. The memories of what we used to do before a cub are so diminished now, when we have the opportunity of alone time we have no clue what to do with ourselves. Self care isn’t a bad thing though at the moment; as parents we are holding everything together to maintain a level of normality and this is taking our spare reserves as our normal reserves are also dealing with the multiple appointments, the emotional drain of maintaining a strong and united front. Phew. I do wonder how we are doing this at points.

Cub returns and within minutes normality has returned. We have noise again!! But I will be forever grateful for those few hours respite. They allowed us to reset a little and any time to do that is appreciated and needed.

10/03/19

Bras. F**king bras. Aaaaaaaaaaagh. So I finally dragged myself out of the house to look for a bra to accommodate the smaller (now cancer free) boob and the always bigger boob. I have finally accepted that the ones I currently have aren’t cutting the mustard and as a full grown adult I need to sort this out. However, I am dreading the trip. Really deep down dreading it. I know what the problem will be and I am already worked up before I leave the house. Unless I want to spend a small fortune on underwear (which only I and the man cub can see) I am restricted to the plainest of plain and limited beyond reason above that to a range of underwear that is dull. Now bearing in mind only I and the man cub see this, its still nice to feel pretty.

Let me set the scene – popping to the local cheaper stores (think supermarket end) for a bra turns out to be an impossible task and all that happens is I end up yelling internally (or externally to whomever I am with) that I’m never again going to be able to buy a ‘cheap’ bra (I want to be 18 again!). Going to a specialist store illicits further internal yelling that there isn’t that much material to justify a monthly mortgage payment (I exaggerate – but only slightly) to cover my boobs. A midway store provides a multitude of prettiness to drag you in there, get excited about the colour and lace, and then gut wrenchingly realise that all those ones only go up to a DD max.

Just because I am a F/FF cup size does not mean that I am a 36 plus back size. I fail to understand why retailers seem to believe that an ancient and mythical belief in the current time is still adhered to. Those who are slim have small boobs. Those who are larger have big boobs. No, no, no and more of the no. You see, RETAILERS, it is possible that a slim person has bigger boobs. Where this all annoys me even more is that the larger ladies are still accommodated by a small boob size (happily corrected on this – just what I’ve seen). I, however, am left scratching around midway expensive stores so I don’t blow the food budget on one bra, for just a couple of plain black and white bras.

Now today I was with my mother and the cub. So it all went splendidly well. NOT. My mother is constantly repeating ‘this ones pretty, oh they don’t do beyond a DD’ (helpful mam), and the cub is asking what size she is looking for and proceeds to shout loudly when she has found an F or a 32, neither together at the same time. I could have sat down and drank a bottle of vodka (yes, it was that bad) right there in the middle of all the bras. And as any other person who has tried bras on – they aren’t like pants – they don’t ‘just fit’. There are versions on a bra – balcony, underwired, padded, non-wired, t-shirt, convertible…… and so it continues. So you have to try them on. Depending on the specific style they either squeeze you, cause back fat, underarm fat, above boob lumps. Its too bloody much to cope with.

At one point, I was sat in the changing room this afternoon on the floor. With real tears in my eyes. And all I could hear was the cub outside the walls of the changing rooms shouting at Nannan that she’d found another one for me. I was at the actual end of my tether – broken by bra shopping. Out of five bras in the entire shop that I could find in my actual size to try on, and then that actually fit – I bought two. Dull as. Cream and blue. To accommodate my wardrobe so I could actually wear them under dark and light clothes. That is it. Two hours of my life. Two bras.

Now, this isn’t just a post cancer issue for me. I had previously had the same struggle, just not quite so pronounced. I feel like I can’t be the only person that has this problem though. Surely slimmer girls have the same issue, or maybe they’re more open to spending a small bloody fortune on underwear. Maybe I am blowing this out of proportion, but being unable to access clothing (that’s pretty vital in this society) readily and easily at a reasonable cost is important to me and I’d imagine a lot of people. And everything you read about bra fitting suggests that it is vitally important to be fitted well. But my experience would suggest that people aren’t fitting themselves well as they can’t afford to do so. Another one to add to the list of things I want to look into more when my head space allows.

Because for the moment I have two bras. That fit well. And I will take that as a win today.

Bitch and tired, tired and a bitch.

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07/03/19

Today I took a days leave from work to go to a ‘Living with and after Cancer’ event. What even is this doing in my life? I awkwardly sat at a table at the back (of course I did!) and then random people joined me and I had to pretend I wanted to talk to strangers. Why am I so bloody socially awkward. The day was set up with some talk from ‘inspirational’ people and in their own way they were. A girl was up first who hadn’t lost her hair, but as a hairdresser she had seen some bad wigs, so now her main hairdressing business is working with girls who need nice wigs. It felt though that I was watching some free promotion in play.

Next up, there was a talk on exercise and how good it is for the body. No shock there – as a mid grown adult I’ve pretty much known that exercise was good for me since I was six. The presentation continued with somebody who used to carry a lot of weight and now is a fitness queen and promoting her business. Yep – I’m in full on bitch mode.

Then my Clinical Psychologist stood up and did his mindfulness session and had the whole room close their eyes and do the breathing exercise that I last did in my 121 session him. I couldn’t close my eyes, but watched as a whole conference room of people sat with their eyes shut and bought into the experience. It was surreal.

Lunch saved me, then the afternoon was in some smaller break out sessions where I sat and listened to the CEO of a company that was set up to support those with cancer. I reverted to bitch and couldn’t help but think that she wasn’t not paying herself. By this point I felt like I was in a promotional machine and cynical business head wondered how much these companies would have paid to get the advertising that they had had today. God, bitch mode was in full play here.

The day was saved by Bobby Moncur doing a talk in the final slot. He talked about his diagnosis with cancer of the colon and then seven years later oesophageal cancer. He was so humble, so real and so honest with his attitude. When the floor was opened for Q&A’s a few people got some cheeky football questions! It amused me. But then, someone asked how his family had coped. And by god, a room full of people watched him break. He struggled to compose himself before answering and then said the most honest thing anyone can say – he didn’t know. Do you know what – I get it. At no point will I ever understand how my family and those closest to me feel, watching me do this journey. I know it hurts them, upsets them and shakes them up; I also know that they won’t ever fully let on to that as they think I am going through enough and don’t need their emotional baggage as well. I get all of this. But I want to help them too. I want them to know that I am there with them. We are all sad, we all didn’t want to do this journey. But I wouldn’t do it with a more loyal group of folk in my corner.

Tonight, on the phone to my mother, I was trying to explain how shit I feel. I have a spot on the end of my nose (couldn’t make this shit up) and the last thing I need when this purely medicinal part of the journey is over is my boobs sorted out. I’m bald, I have no eyebrows, no eyelashes, scars in my nose as I have no hairs (so nosebleeds aplenty!), spots on my chin. My boobs are way down on my list of things I would like to sort once this crap is done.  It still weighs on my mind that it is an option I will need to consider, but by, it’s not something I can deal with now.

08/03/19

Back in work today and one of my lovely colleagues actually told me I looked like shit! I mean, she grimaced when she said it, but she said it!!!! I’d started the day at 8:30 and I was in pretty much solid meetings through to 17:00 and I accepted I probably did look like worse than shit today. I am tired, fifth chemo is catching up with me and I am exhausted beyond anything even being a mama to a newborn does to you. I still remember that first year (I don’t do well without sleep!) and I remember being obsessed with the number of minutes sleep I had (note I said minutes and not hours because some nights it could be added up to just minutes!).

This current exhaustion is so different. Its not sleep deprivation – I could sleep for lots of hours and still feel tired – this tiredness is in my bones, in my core, in my brain. I’ve known nothing like it. My entire body is tired and I’ve known nothing like it.

But I’ll still keep trying to have this. I’m tired, but I have this.

Radiotherapy is coming for me!

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01/03/19

So after the relief of the result on Wednesday (lump was a cyst, drained and disappeared!), and a half day at work on Day 9 (remember Day 9 I should be hibernating and this was the agreement with the man cub – I am stretching it now as I haven’t had any issues, but I can’t push it too far) I booted the man cub and cub out the door for school and went back to bed until 1pm. Eeeek, how bloody lazy!! I mean, I have then done the dishes, hoovered and wiped the bathroom (can’t help myself) but done nothing else and still feel really flat. There is no emotion – just middle ground, no high, no low.

The postman had a lovely job today delivering my Radiotherapy invite to kickstart that process. Seventeen pages of information and five pages of side effects. I haven’t read that. It feels like Google and I have had a bit of flick but nothing too in depth. I mean, I am going to live this – I don’t need to read it do I?! I have lived this whole journey slightly blind, trusting in the NHS and the professionals who I put all my belief in to do their job well. I haven’t felt the need to start searching for information, solutions, changes to my life. Today is no different. The paperwork is filed away with the rest of my letters which are getting to a nice pile for the recycling one day.

03/03/19

Lazy like Sunday mornings – the cub has asked for a PJ day! Who am I to argue about that. I love it, and we chill out, laze around, watch some cubs TV and play a lot of games. Today was also a gift in the form of another mama. She offered to take the cub next weekend for a play date (without me!) – if I drop the cub off, she’ll drop her back here. Full afternoon of freedom (and its pre chemo and rugby weekend so will be feeling better than usual and cheering on the Scots! We may be a little bit squiffy next weekend!).  It is the nicest offer in the world though.

While a lot of people have said that they would take the cub for a play date I always feel insanely awkward approaching the subject directly. How do I even go about that – ‘will you please babysit my cub so I can have a few hours break’? All of that sentence jars with me – I’m turfing my cub out of her own house so I can selfishly have a break from her, bearing in mind I see so little of her anyway working full time/dealing with hospital appointments and then I want to see even less of her. The guilt of all of this eats me away sometimes.

Then tonight I have randomly broke. Huge sobbing tears as I walked past a picture from our holiday last August of the three of us. A holiday at the time I said was marred by cancer. Little did I know that it was the least of my worries at that point and at the time it wasn’t by any stretch the worst part of this journey. I wonder if I will ever get to the point where I can identify  which part is the worst. Thinking back to that holiday now in a different headspace, it seems silly that I was so hung up on the cancer that was in me, that it was small, that it was operable and could be removed.

I never anticipated in that smiling family photo the future – I was too busy dwelling on my own self pity – I didn’t realise how badly I would be scarred by this. In more ways than two surgeries, five chemos, two broken veins, baldness, sore skin, poorly eyes, tired muscles and random breakdowns!! Also the fact that my cub now thinks a Sunday PJ day is a norm rather than a treat. God love her. What has tipped me over the edge even more after looking at the family photo, I’ve got no memory photos lining up my phone history. Because we’ve done all the PJ days (and I have an adverse reaction to any camera as my baldness is so unattractive to me) we haven’t done as much in our off days, even whether that be doing a park run up the lane, a walk round the woods or something more exciting. Every time my timehop reminds me what we were doing a year ago or more, I get upset all over again. But I can’t change it so need to decide what to do about it. I know that we don’t have to ‘do’ things to make memories, but I still feel guilty that I have been more than useless with this and that my gorgeous baby girl is getting less of me than she deserves.

04/03/19

I have another bad night tonight, closely following last night feels like it all ties in and I haven’t dealt with last nights wallowing before I career into tonight. I HATE having no hair. I am so sad I have no hair. I can’t look in the mirror (I avoid mirrors at all cost). I don’t put on makeup anymore at all (I mean what is the point if I don’t have eyelashes?). I haven’t taken a single photo with the cub without my woolly hat on (and even then there still aren’t many).

There are positives, I don’t have to make an effort about straightening (used to add a good half hour to my morning routine), blow drying (twice a week – the advantages of crazy thick hair), tweezering stray eyebrow hairs, waxing and shaving (saved a fortune on these products). But I have also never felt so unattractive. I was no supermodel, but I could live with that. Now I feel less somehow, its strange because internally all I hear is my own voice and that hasn’t changed. But then the cub will stroke my head and I remember I’m bald. Christ, bald. I HATE it. I have no idea how the man cub is dealing with looking at me every day. Ugh. This day has also ended on an absolute low.

But I am going to get through this. I am sure I will. I’ve got this. It’s just getting harder to have all of this.

The emotion of this journey..

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So it’s taken me a while to write again after dealing with the aftermath of the ‘new lump’ status. I’ve had a few people contacting, getting in touch and not realising that I am already a couple of  months ahead of this. Because I can’t deal with typing my raw emotion when it happens. I write it I raw emotion in my wee black book. But dear me, no one wants to read that book in its entirety! So I type it about two months later and then post. This does cause confusion and I appreciate that for my closer folk they don’t quite know how to deal with conversations with me! But I am still doing this journey fine. I’m still here and I’m still laughing.

I’ve thought a lot about how I deal with the emotion of this journey and I am quite an enigma. In real life I spend a lot of time being  blasé about how I’m going. Usually because I’m either freaking out about another lump (!) or just trying not to sound like a whinging minny. So I put on a brilliant smiley face and usually knock out that I am ‘doing just fine’. I usually start over talking at this point and it distracts everyone from their original question! Works a treat every time!!

I would love to offer advice to people of how to approach this with someone who has just had a cancer diagnosis, is living with a cancer diagnosis, or is supporting someone with a cancer diagnosis. And do you know what – I don’t have all the answers. All I know is how I have dealt with it, how I want to be dealt with, and how some days I want to not be defined by the bloody twatting diagnosis.

In all honesty, most people have been absolutely amazing and have reacted to my cues. If I’ve shut down and pretended that I am doing A.O.K. they have treat me as such and just done business as usual. When I have had a wobble and blethered about bollacks, they have listened, nodded and tried to understand, which is also OK as no one can really understand unless you live it. I love all of these approaches, but I also know that people do walk on a few eggshells approaching the subject with me. The funniest situation by far is when I talk about the end of the journey and the offer of re-constructing the boobs to be equal – not a single person doesn’t give a furtive glance at the boob area to see if they can clock whether they are that far off!!!! Internally this makes me chuckle more than it should! Human behaviour is fascinating! (P.S. I would also be in that camp, and try to do it subtly – let me explain, on the receiving end, you aren’t being subtle!! P.P.S Padded bras are tremendous at their job!!!).

Enigma continued, I am struggling with people who ignore (are terrified of raising the issue with) the obvious. After the big shave, I started seeing professional colleagues over the next few months (who had no idea about my diagnosis and journey). Some of these have reacted well (no emotion, continued meetings as if nothing was different), some have blethered like idiots while they compose themselves, some have asked how I am outright. Do you know what, I still don’t know what I prefer. Because I also know that those who haven’t directly asked me the question have snuck round to colleagues/friends and asked them – but does that matter? They’re not asking me because they don’t want to upset me (I presume), but I would rather they asked me directly so I could be the one to spread the word, to explain the need for self awareness and self care, the need for every woman in their life (and them included) to look, feel, check, follow up. I also know that some days I wouldn’t have done well with being asked how I was directly (for some reason I get more upset telling relative strangers how I am, than being my bullish self with those closer to me!). So possibly my advice would be to gently check in with anyone who looks like they could do with it. I mean, this applies to any situation if I’m honest. Woah – I’m tapping into my Mental Health First Aid training here, and while I got this at the time (I did it when I was newly diagnosed!) it’s probably just finally resonating like church bells in my head.

So check in. Check in with anyone. At anytime. Just check that they are ok. Regardless of whether you think you’re appropriate or inappropriate – a general check in will always make a difference (regardless of how close people have been to me but have made the effort to check in this has made a difference). Thinking about it, this should just apply to life. Never mind someone who has had bad news, a bad day, a good day, a bloody rotten day – check in.

Because we all have to have this journey through life. And we do have it. If I have got this, then everyone I know has this.

Limbo cont’d…. Lump status confirmed!

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26/02/19

So after waiting an inordinate amount of time to see Pauline (and laughing far too much about the Caravanning magazine) we finally get called through by a random nurse to get taken into a room where we wait again for my lovely Pauline.

She rocks in like my surrogate mammy, with her beautiful tan brogues (why do I always get fixated on the shoes!), and asks me to take my top clothes off. By this time it is 3.40pm (I mean 40mins isn’t a bad delay!), and I’m half undressed before she’s finished even asking! I’m honestly at the point where I just get the boobs out for anyone! I promise Pauline that I won’t do it in the middle of the local shopping centre if I do see her there.

Once I’m on my back and Pauline is having a feel of the boob area, she says ‘hmmm, there are two lumps there, and one over here’. WTAF. I mean, I was here for one lump. Just the one. The one that I have spent a lot of time convincing myself that it is a cyst. Don’t now tell me that there are three. I can’t now deal with three in my head. She follows that up with ‘I think (THINK?!) they are cysts, but the consultant is scrubbed up and in surgery so he might drain them tomorrow’. Tomorrow? TOMORROW????? I have already waited four days! Honestly, I am done. We leave the hospital no further forward.

I did leave with a flea in my ear though. After the examination she asked how I was doing, whether I was resting, whether I was taking enough me time and whether I was giving myself a break. And do you know what, I got a bit bloody teary. I looked at the man cub and as I teared up, I could see him look a little upset. I blame the bloody CP as this kind of kindness wouldn’t have ever floored me before!

In amidst this crazy day, we picked the cub up from after-school club and the tinker that bothered my cub and I before was at it again. As soon as we walked in I could see her whispering to the cub ‘take your mams hat off, take it off’ and my cub looking so uncomfortable. I’m so cross and don’t quite know what to do with that yet, but I’m sure that an opportunity will present itself at some point for me to really deal with it. I have too much going on to do anything with that at this moment.

At home this evening, I realised I have a spot on the end of my nose. Now, seriously, if fate isn’t trying to deal me a duff card, then I don’t know what is. I already have no hair, no eyebrows, no eyelashes, bloating, pale skin, water retention – lets add a spot!! Bang and centre on my nose. Dear me. However I have also laughed a lot tonight. As the man cub and I talked about the day I did remember that mid-way through Pauline examining the boobs I looked over and saw him staring at the ceiling!! As if he’d never seen my boobs before! As if he’d never witnessed my body naked!!! I mean, we’ve had a child together – it’s a given that he has! But, seriously, at 10pm we were broken laughing about this!! I have never chuckled so much.

27/02/19

Well today is going to be a long day. The man cub has taken the day off as we could get a call at any point to return to the hospital. I however have meetings so have launched  the cub into school and started the day with my fellow colleagues in a coffee shop. Trying not to be distracted throughout, I make it back to work with them at 10am and still no call from the hospital. Finally at 10.20am I get the call to come in at 4pm. Another six hours. FMD’s this is exhausting. I work my way through meetings and emails to gain some sense of normality and leave early to pick the man cub up to head to the hospital.

At that moment I get the call about radiotherapy. I have my pre assessment booked for the 28/03/19 (a months time!). I am also privileged to get a parking pass as having cancer must treat me to one of them! When asked what time of day would suit me for radio I said early as possible to which they said they had 8am appointments. I might need to revisit those logistics at a later date – we live an hour from the hospital, through a major city and the associated traffic. We’re going to have to see how that pans out!! This is certainly an issue for another day. I need to deal with todays issue first!

We arrive at the hospital at 4pm (bearing in mind we need to pick the cub up from after-school club by 6pm and we are an hour away!). We’re sat in the waiting room with the remaining folk from day session and my phone is on 10% battery so I am bored. The man cub goes to ring his work boss to update her on the situation and reappears within 30 seconds to say he’s dropped the phone on the floor and he’s killed it. I burst out laughing. I mean – this situation can’t get any more ridiculous. We have a dead phone, a nearly dead battery, a cub that needs picking up in an hour, and at least three other people to be seen before me. We need a plan!!!

The plan we come up with depends on timings and if Mr A calls me before 5pm then we could be ok. If not, then I face a two hour bus ride home by myself so the man cub can go and get the cub! To be honest, we are still rolling about laughing at the phone. It is seriously the highlight of ridiculousness and I’m sure again we were unpopular in the waiting room, but it’s the humour that keeps us going.

4.45pm and a nurse calls us through. We’re cutting it fine here, and while she tells me to undress I do as I’m told and take a seat on the bed – at which point I nearly tip myself off the bed as it was the flexible end and I hadn’t realised. Cue more laughter from the pair of us, and I decide to just have a lie down as by this point I am done. If Mr A doesn’t get his arse in here quickly I am about to lose my man cub and deal with a prognosis by myself. And I do not fancy that. I also know that the man cub is clinging on to the last few moments himself as he has been with me every step of the way. We are a team, a unit, and we do this  together.

Mr A arrives at 4.57. Cutting it fine here. My lovely Pauline is with him and she points him in the direction of the ‘three lumps’. Very quick confirmation on the big lump that I found – IT IS A CYST! Yay!!!!!!! A humongous needle appears but within moments it is drained (yuk!). The other two are also cysts (felt them) but too little to do anything with. I am quite lumpy apparently. He did try to drain one of them and as soon as the needle went in the cyst moved. Joy!! I love being a human pin cushion! He then had a quick chat about seeing me in May and we’d discuss next steps. By this point I wanted to get dressed and leave. Relieved. Less stressed. Putting the past five days to bed.

Because this has been gruelling. This last five days have worn us down, taken my last positivity and spread it thin, my last ounces of strength and scattered it, and defeated my pragmatism in all ways. This has been a harder pill to swallow than the first diagnosis. I have a lot to learn from this and deal with, but today I am going to have a drink, chuckle about the phone and our damn luck and be grateful for the family I have. Because I have this.

Limbo – waiting for the lump status TBC

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24/2/19

I’ve spent the weekend hiding behind the man cub. Trying to hide my true face. We saw his family yesterday and then a mate of mine today for Sunday lunch, and I have to lie about how I am. I have to remember how I was two days ago and go with that. I can’t possibly worry anyone else with this gnarly lump. Why worry them if it’s nothing.

I’ve also had the most stilted conversations with my mother. But I can’t do this to them. They do not need this worry. At all. None of us do. Aaaaaagh. My logical head is suppressing this to provide normality over the weekend for the cub, but I see my lovely CP tomorrow and I have a feeling all of this might fall out onto his lap! I am still tempted to rearrange but I also think I need it (which – wow – is something that I wouldn’t have ever appreciated before I tapped into mental health help).

Today has also been the longest day – the normality of chemo is still underway and hallucinating at 4am had me awake and promptly sacking off the 10am party it was my turn to take the cub too. The man cub was thrilled! But the cub knows I’m poorly. When we were hugging this morning and I said I would be well soon, she said again would that mean my scar would disappear. The poor cub can’t get her head round it and it breaks my heart. I feel guilty for the last year being so disjointed for her. I feel so guilty about this.

25/02/19

Back into work – day 5 after 5th chemo. I feel like shit, I look like shit, I have puffy eyes, a puffy face, I haven’t slept and I am officially grumpy.

I see my lovely CP today for my third appointment and talk to him about our cub – after one example of her writing me a note after I had said their was no more snacks before bedtime that said she was sad, she was angry, she was upset, alongside a sad face with tears he said that she sounded profound. Yes mate – she really is. And I cooked her! I couldn’t be prouder!! I then realised that I hadn’t done my homework for him – oops. I was supposed to look at my values and decide which ones were most pertinent to me. I also haven’t done any meditation. He gave me a bit of a bollacking saying that we spend every day doing our teeth for two mins so should be able to spend three mins on our mental health. That was me told!

However, we then got onto ‘unhelpful’ thoughts and why we do this to ourselves. He was really surprised by the fact that I am furious driver – and when he said it I couldn’t  really explain it. Why get mad at other idiots / traffic / lights changing etc when actually I don’t have any control over them (I need to chill out!!).  I’m also really getting my eyes opened to how I have changed during this journey and how previously even if I did have odd moments when the devil on my shoulder was at it’s best I always had the strength and will to turn back to the good in life, to find the positive with every scenario. This time I just don’t seem to have been able to find the strength. As we got near the end of the session  we touched on why I am so sad. My cub, my world, my everything and the fact that I might not be here for her literally breaks my heart in two. A few tears but I quickly pull myself back together as I do with everything. I can’t possibly think like this because if I start crying I’m not sure I’d stop.

26/09/19

It’s Tuesday! I mean, its Tuesday. Should just be another day in the cycle of chemo, but no, I am going to spend the day waiting for the result on this lump which hopefully after four days I can finally put to bed. My lovely Pauline rang me at 9am and said to come in at 3pm. Six more bloody hours. While I have to work. Jeez, I might have a timescale but I’m also going to have to be effective and try and deal with this internally. Today of all days I had a catch up with my boss who has been amazing throughout this, I can’t fault his approach and while I am probably not the easiest person to manage on a normal day he has totally had my back on my bad days.

After alerting the man cub to come pick me up at 2pm I knuckle down and try to get on with the day. The usual mundane tasks of work are seen through, I actually laugh a lot because my team are bloody hilarious – I could write an actual comedy about the craic that occurs daily with these lot! The eclectic mix, the range of ages, the wind ups versus the serious, the challenges of a role that encompasses essentially two very different teams and I couldn’t be happier. This is my happy place and I bloody well love my lot. There may be days that I wonder what the hell I’m doing – talking about champagne one minute and blocked toilets the next (don’t ask!) – but 99% of my days are spent loving what I do. And I reckon that’s a good job. I know for damn sure in my last job the ratio wasn’t that good and while the people I worked with were amazing, the job itself lost its appeal. So I class myself as very lucky that I have stumbled on this job. But luckier that I also have an amazing bunch of people who I work with. I also realise today that I don’t tell them that enough. I need to do that more. These days when I am in work and not either laid up with chemo side effects or in isolation are the days when I live well. That is down to my wonderful colleagues. I couldn’t do this without them.

I make it to 2pm, and make a swift escape to head up the road to the hospital. The man cub and I quip that we are a bit bored of this journey now. We park the car in the same back street we always do (refuse to pay extortionate fees in hospital grounds when I have legs that will walk for five mins), walk the five mins through housing estates, enter the same door through the hospital and make our way into the bowels of the hospital; hoping that we can leave with a load unburdened. The walk to the Breast Cancer Unit doesn’t ever get any easier. It’s a beautiful walk (if any walk can be in a hospital) with some amazing photos on a long corridor, of the history of our city, and we stop and take it all in as we’re early. As if we’re tourists. Just visiting. Flying visit. Nice place to be this. Honestly – you couldn’t make it up sometimes!!!!

Into the waiting room and I entered at the back end of a ‘normal’ afternoon clinic where women are waiting with partners, carers, children, parents to get their own lumps and bumps checked. I’m pretty sure the last thing they needed today was me rocking in with my bald head, clearly on a journey through treatment. I’ve never felt so shit.

But then, as we do, the man cub and I found some humour! He picked up the Caravanning magazine (that is five year old) which we have already read three times at least, and we started having a proper chuckle again. Honestly – we are the most unpopular people in the waiting room as we try to maintain decorum but usually end up guffawing laughing. I appreciate we’re in a bloody cancer waiting room, but this is what we do. I’d apologise if I offended anyone!

Because, do you know what, we are doing our best to not let this journey define us. We have this. And we will continue to have this. I am absolutely sure.

Curveball – another lump appears

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22/02/19

Half term ongoing, chemo done on Wednesday, recovery working and its two days post chemo. Then BAM, lets destroy this little beautiful moment of half term, cub craziness, escape from work legitimacy. I am so f**king angry right now, so cross, so furious. Having my lie in today (we take it in turns in this house!) I laid awake listening too the cubs downstairs nattering away, cherishing my family and the love I have for them.

Later on (still just morning !) I’m in the shower and remembered to randomly check out the boobs (I still forget regardless of the journey I’m on).

Yep, another lump, is it a lump, no it’s not a lump, let me check again, yes, please no, stay in the shower – it’ll disappear, FML, this is not how I anticipated my morning turning out. It’s in the good boob (but the one that I had found the last lump in and turned out to be a cyst, they found the cancer in the other boob). Nooooooo.

I quadruple check before shouting the man cub in for a check. (Lets also be clear, romance is a little bit dead when you’re asking your OH to prod your boobs rather than anything else in the romantic angle). But yep, by the look on his face it’s definitely a lump. A lump that he can easily feel. A huge lump.

I can see us both sag under the weight of the knowledge. We can’t act like we did before. A lump can be more sinister now. I mean, it might not be, but we also are now well versed in the alternative bad news version. We don’t like that version. I can see in his eyes that he is working through all of his own pragmatism to deal with his own emotions as well as the fact he knows he’s going to have to deal with mine. This is so brutal. And it is Friday – we are heading into a weekend again with all likelihood that we aren’t going to get answers. It is an enormous lump. Huge. A bloody lump. Aaaaaaggghhhhhh. I don’t know how I didn’t notice it earlier? How did I not notice it earlier.

The self pity moment is destroyed by a small cub rocking into the bathroom shouting that she needs a poo. I mean, if there’s a more grounding experience needed I don’t know what could meet that criteria!!

Cub toilet functions dealt with and distracted with the million toys she possesses I ring my Pauline. The phone bounces and I end up speaking to some random Receptionist that listens to my woe and then decides to impart the knowledge that Pauline isn’t back in until Tuesday (work to be done on dealing with cancer patients here!!!). She does tell me that I can see Caroline (one of the other Breast Cancer Nurses) on Monday, but to be honest – as ridiculous as it sounds considering a lot of folk have now handled the boobs – I can’t deal with building another emotional attachment to an NHS member of staff while they deal with my boob area. I make the call that I’ll wait an extra day. I ask for a call back from Pauline on Tuesday. It is Friday. I need to wait until Tuesday. Three full days stretch out in front of me as I put the phone down.

My pragmatic head is staying in a good place. This is a cyst. Has to be. I’m in the middle of goddamn chemotherapy that is killing all good cells in my body along with the bad ones. There is no way this can be bad.

My devil on the other shoulder is messing with me. Could it really be cancer again. What if it hadn’t been detected in the numerous ultrasounds, MRI’s, scan’s, feels, and its just been slowly growing away. What if it has grown through chemo and is aggressive. Is this my life now – every slight lump, every pain in my body, every niggle that is a bit random – will I relate it to cancer? My likely answer at this point is yes. And this frustrates me more than anything (will talk to the clinical psychologist about this). I have never been a person to immediately go to worse case scenario, I don’t believe in wasted emotions on something that ‘might not’ happen. It’s a waste of time in my old opinion. So now that I am in a head spin I am telling myself off at the same time as bottling up everything and trying to have a normal weekend which is stretching out in front of me like a wasteland.

Two hours later I also make the decision with the man cub that we aren’t going to tell anyone about this latest development. We are hunkering down and going to deal with this ourselves. There is no way I can put the parentals, wider family and friends through this uncertainty. I appreciate I didn’t put any of them through the waiting game the first time, I certainly, definitely, defiantly can’t put them through it now.  The last time I had to tell everyone an outcome that I never thought would be words out of my mouth. It would seem perverse to put them through the waiting game this time if there is no need. We decide we can do this.

While appreciating it is going to be a long three full days until I even get to speak to Pauline, I pull the big girl pants on and whack a smile on the face. We have a family catch up with the man cubs side tomorrow, and a catch up with my friends who have also been going through their own cancer journey on Sunday for a lovely lunch and at no point can we tell any of them, give anything away about our turmoil, or be any less than our usual cancer living selves.

I also suddenly realise that I have my clinical psychologist appointment on Monday. I so feel like cancelling at this moment. But maybe this might be exactly what I need.

We have this. We’ve got to have this.

Fifth chemo – lets be having you…

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19/02/19

I got my fifth card from my gorgeous colleague in the chain of chemo cards. ‘It is what it is, and what it is is shit’. Couldn’t have put it better myself. And the beautiful message to build me up is what I need. I appreciate these cards more than she will ever know. I am so apprehensive for tomorrow and need to get my big girl pants on. I’m already thinking about side effects and how quick they may kick in. All the while I am getting so tired. These drugs are certainly breaking me down, so I’ll hope that they’re doing the amazing job they are supposed to and wiping out any naughty cells that might be still lurking.

But tonight we have had a lovely evening pre chemo. It is half term and we have dispatched the cub to the parentals for the evening, so decided to have a cheeky walk down to the pub, beat the man cub at pool while we waited for food in the bar (we moved out of the normal bar area as it was going to be quiz night and we ain’t that clever!). I managed to taste my food (before taste disappears tomorrow again) and we had a lovely evening reconnecting. We laughed and laughed, then froze on the brisk walk back home. Which is where we discovered (for probably only the fifth time as cub never stays out) that we don’t know how to be empty nesters anymore! So had another drink and felt a bit naughty!!

20/02/19

Fifth chemo – lets be having you. Wake up crazy early and wait for the alarm to signal that the day has actually started and we need to do this. It was the Oncologist appointment first today and we both anticipated it might well be a joke again. True to form, it was. I did actually see the lady Doctor, who I have distinctly gone off, who did actually give me some more information about the next stage. It will likely start in April, four to five weeks after the end of chemo. Then twenty days (not weekends!!) of being blasted for five to ten minutes and I’ll do a two hour round trip for the pleasure! Five minutes later we were headed for the chemo ward. Not really equipped with knowledge, but some timeline at least.

On the ward, we grabbed a corner seat (different one! We like to be rebels!) and the day continued to be a bit shit. My veins weren’t playing and after the second go, there was slight panic in the man cubs eyes which was mirroring my inner panic. I couldn’t get this far and end up not getting the damn drugs into my body. Two chemo left and I needed these veins to pull one last miracle for me. Third nurse worked a charm a finally got the needle in. I thanked all the gods at that point.

Then a mother and daughter entered and started rearranging the furniture for the daughter and her mate who was due. As the man cub and I rolled our eyes and thanked our lucky stars that I was halfway through getting the drugs dripped through. Eavesdropping, I remembered that I am very lucky – the daughter mentioned to the nurses that she had ten attempts to get a vein before she was fitted with a ‘port’, (still not googling so not 100% here), where something is placed just below the chest skin and the needle is pushed through the skin into this. It took everything I had not to wince as the nurses rammed a needle straight through that girls chest. I’m going to keep being grateful.

As the last bag of saline was hooked up to me, we had to endure a last half hour chat that you literally can’t unhear. The point where one of the girls was discussing emailing her consultant and subject header was ‘MUST READ’, I decided that I must be a sweetheart of a patient. I turn up, I ask very few questions, I do what I’m told and I’m ultimately compliant! In some ways this could be naïve and but I’ve chosen to adore the NHS for what it is doing for me and take the ride in their hands. I might change my mind when I Google later on, but for the moment I’ll trust all the health care professionals who are a lot better equipped and knowledgeable than I am. I also have a word with myself as we leave; who am I to judge someone else going on this hellish journey. She may well be justified and have a consultant that is the equivalent of my oncologist, slightly useless in the patient concern but also extremely clever. If she wants someone to ‘READ’ her email, why am I sat here rolling my eyes. I’m leaving the ward winding my neck in (and for a sleep until the cub gets dropped off!).

We’re still both all over this, taste is going already, but I’ve got this and only got to have one more chemo! Lets do it!!

The curiosity of children.

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13/02/19

This is a really tricky one to write. I have struggled with what has happened today, how I dealt with it, how I continue to deal with it and how I help my beautiful soul of a cub deal with it.

I waffle, lets get back to what today dealt me. I went back to work after my seven days of isolation, following my fourth (brutal change of drug) chemo. Over half way and I am slowly getting more tired, more wallowing self pity, more side effects kicking in, more visible roughness! But today I made it into work. I bussed in, walked up a mighty bank (and thought I may need a nap at the top!) and was actually functional (I mean – more functional than I have been over the last few days!). The poorly eye situation has kicked in though – where they were dry before, they now feel like they could weep constantly. I also realised that eyelashes do a very important job – and while I did do GCSE Biology, and fully understand the concept of why we have eyelashes, it’s only when you don’t have them that you realise the amazing job they do. Keeping dust and particles out of your eyes, protecting from breeze and preventing sleepy gunk from sticking your eyelids together is certainly something that I never thought I would suddenly appreciate!!

After a long, meeting filled day, I returned to normal mama duties and went with the man cub to pick the cub up from after-school club. All innocent as per usual, and I had my woolly hat on as haven’t quite braved dealing with the mix of children that make up after-school club and the questions that my cub may get from a range of children up to the age of eleven.

Tonight though, I was tossed a curveball. While persuading the cub to ‘come off the stage’ (!!) where she was strutting about to some music with a friend, she jumped down to a half level stage to give me a hug. At that moment, her friend asked both of us why I was wearing a woolly hat indoors. My immediate response was that it was chilly. My cub (in her gorgeous innocence) went one step further and while whipping the hat off my head, proudly proclaimed that it was also to keep my head warm. At that point I had no where to turn!

And while I had been open about my baldness at a previous childs party with the cub (assuming that parents would have conversations if needed), no children had reacted the way that I observed next. As I rescued the cubs bag and coat from the storage boxes, I turned just in time to witness that my cub was being dragged backwards while frantic whispering was underway. She looked uncomfortable, she walked away without answering whatever was being asked of her, and she was quiet in the walk out to the car. I was fizzing.

Checking in with her in the car, I asked what her friend was chatting to her about – keeping it casual – she responded that they had been asking why I had no hair and it was strange, but she said that I had been poorly so that was why. My poor heart broke somewhat. My baby girl, my cub, my only child is having to deal with playground craziness already. And she rocked it!!

Later this evening, talking it through with the man cub, we have discussed how cubs behave and accepting that they are all different and I don’t want to cause any issues with how this played out. I think my issue with how this did pan out was with the way my cub wasn’t quite prepared for the weird questions. The open ones are fine – she copes with those with her mamas pragmatism – she is honest, she states facts; what she didn’t cope with was sly, weird backhanded whispers.

I’m all good with the kids asking questions. I’m all good with the parents asking questions. I really am. I want people to know now (I mean its hard to miss the differences to how I look, so why not make something of it and spread the word to prevent anyone else having to deal with a worse fate). But what I am baffled by with the five year olds is the polar opposite approaches by them about how I look. The cub has never flinched  but she wouldn’t, her mama is still here and giving her hugs! I’d imagine that some other cubs have asked the question behind closed doors, but also that sensible conversations have also happened following those questions! I’ve had some of the other kids from the cubs class ask whether I had my hair cut off at the hairdressers and why I had it cut off – and I sat down with them and mentioned I had been poorly so had to have my hair cut. They asked whether it would grow back and then said it was shorter than theirs (the boys!) and all of this was fine. I sat down, I was as open as I would ever be with someone elses child while still being honest and truthful in front of my cub.

That is the difference though – genuine curiosity versus being a tinker (they are still five). My heart breaks for my wonderful, caring, accepting cub. School, friendships, trials and tribulations of being five are still a minefield and she is having to deal with my ‘visual’ differences and explain them when she shouldn’t bloody have too. Aaaaagh.

As a family we have this now, my cub has this, my man cub has this and I have this. We’ll make it!

Decisions made and eyelashes lost!

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08/02/19

Well I’ve done it. I’ve informed the man cub and the parentals of my decision too officially postpone my birthday. I don’t want to celebrate when I’m not my best like I’ve already said. Remembering my last big birthday (god, it really doesn’t feel ten years since my 30th!), I had the loveliest of days. I had a lovely meal with twenty of my nearest and dearest. We went to a small rural pub, had a lovely meal, then (after the parentals were dispatched home) I watched the end of the Six Nations as its always falls that weekend and might have had to be carried into a taxi home. A perfect day and night.

I know it’s another milestone in my life, but I just don’t feel like there is much to celebrate at the moment. I am tired. I am feeing like this isn’t the celebration that I anticipated or want. I’ll be like the Queen this year and pick another day once this journey is over to celebrate properly. I’ll do all the cards and presents then, so it feels like a celebration. But I just can’t focus on anything else but this journey at the moment and I’m parking everything else in my life. I am also sliding full on into another cold and cough, along with a spectacular taste in my mouth that is rendering all food substances to be in the yak category.

09/02/19

So this new drug – Docetaxal – is a real treat. Who would have known that where FEC took my head and bodily body hair, Docetaxal would take my eyelashes and eyebrows. It has made me so sad again. After a look in the bathroom mirror, properly, for the first time in a while I realised that I have one lonely eyelash left on my lower right eye. My eyes are puffy (steroid aided) and I am feeling the most unattractive version of myself. I’m no supermodel normally, but at least I looked well. I now look like the roughest version of myself and its not great.

All of this is not helped by the fact that I have the migraine from hell, helpfully assisted by the hacking cough. It’s a fully blown migraine that I haven’t dealt with the likes since being a hormonal teenager. By 1pm I have begged the man cub to go and find me any drugs that will alleviate this. I have been on the chemo line with it being Saturday and because of my temperature being ok, legal drugs seems to be the only way forward. This wallowing self pity is tiring.

11/02/19

So my second appointment today with my clinical psychologist. Still feels weird saying that out loud. We did some meditation today to try and centre my thinking on just breathing and shutting everything else out. This kind of mindfullness can be used to recentre my thoughts and can be used at any time. It was the most bizarre experience, and again – while my pragmatic head ‘gets it’, I just really struggle with this. I am so far out of my comfort zone and it feels strange that while my body is fighting something it never thought it would have too, my mental health is having its own internal fight.

Old school me would have ran a million miles from a bit of meditation, ran out of the door of a clinical psychologists, laughed in the face of anyone who suggested I might need mental health direction and scoffed at the idea that I couldn’t ‘cope’. Coping with the challenges of chemotherapy and side effects that it has caused (regardless of knowing pragmatically that it is short term) I have understanding of how meditation could be helpful (not sure how effective I will be with that!), I have stepped twice in through the door to meet CP, I won’t laugh in the face of anyone who suggest I need mental health support (I promise), and seven months into a cancer journey I never anticipated I would have – I might finally say I’m coping a bit less well than I ever have been.

That doesn’t sit well with me though. I’ve never been one to admit I don’t cope. I am stubborn and under stress I shut down, shut help out and soldier on. Nine times out of ten I will succeed in whatever it is I’ve set my mind too, and I don’t think those odds are bad especially since I am now getting old!! Problem is that, while I have ‘coped’ externally so far with the diagnosis of cancer, the operations, the recovery, and three doses of FEC drug which caused me to lose my hair; the latest round of Docetaxal has brought me too new lows and as my body feels like it is submitting in the fight, my head and thoughts are also submitting in the fight. It’s harder to be positive, to say out loud that I’m coping and to believe it.

But deep down I still have this. And I will keep going.

Normality has up and left the building!!

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04/02/19

Wallowing self pity continuing today. Last night the cub must have known her mama was off, and she appeared at 2am with a torch. She was promptly dispatched to her own bed but reappeared ten mins later to check that it was a firm no! It was a firm no, which probably threw her as usually I cave first time so she was likely confused and thought the second time would be a winner. In reality and hindsight, I should have just done what I always do, let her crawl in, then I crawl out and into her bed. As 3am and I was in a weird trippy version of myself, business planning and strategising cancer – you couldn’t make it up!!

After escaping to the sofa to give the man cub some uninterrupted sleep, the alarm went off for work when I was mid planning!! Yep – work was sacked off. Dispatched the cubs and returned to my actual bed. Woke up midday and the parentals arrived with flowers and a shelf to put up! That’s what they do!! My mam does flowers, my dad does practical!

I was a proper grouch (thankfully they have to put up with me, so I’m probably at my worst behaviour with them as I know they have to love me no matter what – childish behaviour I know).

The day then ended in hilarity when the cubs returned. The small cub came in and hid her mouth while telling me she had lost her tooth. Her first one. My first thought was that she was fibbing as she is a wind up merchant, but no, hand moved away to remove a gaping gap in the middle of her lower set of teeth and it wasn’t even the full on wobbly one. She then proceeded to explain how it was lost – eating a freeby apple in Tescos and she’d swallowed the bugger. Her first tooth and she’d swallowed it. Too be honest, that had me laughing more than anything as she’s definitely our daughter!!! No bloody luck! After sneaking in to play tooth fairy duties after the cub had shouted loudly at bed time to the fairy so she knew (we’re tight and a single gold coin was all the cub got – to be fair she’d have been happy with a chocolate one) I admitted to the man cub why he had been in Tescos in the first place.

I had caved about the food taste situation and posted on the FB group what food I might actually enjoy this afternoon. I was miserable about the loss of taste buds and it appears that it isn’t going to get any better on docetaxal, probably going to get worse, and the list of food items that might assist in getting me through were:

Thai Green Curry

McDonalds

Lemon curd

Greggs

Space Raiders

Rice Crispies

Chicken kievs, beans and chips with vinegar

Salt & Vinegar crisps

Ice Cream

Sweet Chilli Crisps

Curry

Strong Cheddar on Toast

Vimto

Now, bread has tipped me over the edge – I could actually gag like a child on it, so half of these items are already on the ban list. I also don’t think crisps, cereal or hangover burgers are going to do the trick. Which leaves me with curries and ice cream. I mean, if there’s a plus side to this crazy I’ll eat that every day!! So I had messaged the man cub late afternoon to attack Tescos and get me chilli crisps and I was already planning on a chicken chilli noodle soup (usually a firm favourite this house) to see if I could kick start any pleasure in eating food.

After I had performed tooth fairy duties I ate the soup (yak), tried bread with the soup (super yak), pinched a bit of chocolate cookie to see if that could nail some taste (yak), chocolate rolls (equally yak) and then I tried some liquorice twists (something I added to the list myself as a strong aniseed taste that might break the barrier of awfulness) – yep, liquorice twists is what I am going to live on for the next nine weeks. Yay!

05/02/19

I am back on the chemo ward early doors. Had a phone call yesterday to ask me to come in and recheck my bloods. I mean, if they weren’t good last week, they gave me chemo so god help me. If they were borderline – aaaaagh – how do manage to keep it going for the next two if its that bad. But lets remember I had been poorly with the cold, so I’m sat in the waiting room at 8am, confident as, but literally falling asleep in the chair. The Unit doesn’t open until 9am and I feel like part of the furniture by the time I rock in to see the girls. Bloods taken, platelets are ok, neurolites (making these words up but I still won’t google so that’s what it sounded like!) are close to ok (good side of ok but also close to not ok). But I left in the knowledge I had made round 4 and I just needed to be really well for round 5 and 6.

After a mile walk back to work in the frosty morning I made my way through the day with my lovely colleagues who always welcome me back with open arms. And I finally was honest in my responses when I was caught off guard when I went to get coffees (to keep the eyes open). I finally admitted that I wasn’t ‘OK’, my stock response normally. I’ve been broken down to the stage where I need to admit this, and maybe this is the realisation that I need help. I know that everyone understands, everyone has probably expected it for longer than I have, no-one is judging me. But I still struggle with it, I still view this as failure on my part. I am never this low and I’m unsure now if there is a lower level this chemo will take me.

But I have my lovely CP who will ‘fix me’! And I have this. I am determined to have this.

Procrastinating at its finest ……

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31/01/19

There is no going back to previous life after a cancer diagnosis.

Believe me, I am procrastinating now like an absolute pro. I appreciate its absolutely ridiculous. I am now in my isolation long weekend after my fourth chemo blast, which leaves me a long time on my own while the man cub and cub are out at work and school. This time alone is not helpful for my mental health to be honest. And trying to work from home is getting harder and harder. While previously I loved a good day working from home and knocked doors out of windows, I have now lost all desire and motivation as I am tired and spend too much of my time dwelling on this bloody situation.

I have tried reading my ‘Happiness’ book today and while a bit of it resonated, I still can’t deal with it fully. I know that I need to make some changes in my thinking, but hey – I’m a good few years into my life and its difficult to change my lifetime pragmatic thinking habits! I know I need to change this thinking for the next few days, weeks, months and years as I can’t sustain this craziness, but I am finding it really hard to actually commit to the change I know I need to do. In my previous life (pre cancer diagnosis) I would have found this beyond hard to accept and take on board, and that was when I had a clearer head. I probably would have scoffed at the ideas raised around negative thinking – to be fair, I didn’t have the negative thinking to deal with.  Post cancer diagnosis, I am finding this beyond challenging.

Post cancer diagnosis irretrievably changes you. There is no going back to headspace that was just full of managing three diaries. I would like to go back to those days now.

The only way I can equate the change in mind-set is that of becoming a carer of a child. If you don’t have children, you have amazing lie ins, get drunk when you want, go out when you want and have no big deals to worry about. Then a cub arrives and wham bam, lie ins are a beautiful dream; drunkenness isn’t good craic when you have to wake up early; every outing requires a thought of change clothes, bottled water, snacks, fruit, sunglasses, woolly hats etc; and worry for another human being multiplies beyond control.

Post cancer diagnosis is similar, where before I managed three diaries, flapped about uniforms and work clothes being washed and ironed, dealt with mama guilt on a daily basis (especially on a Friday when she is sometimes last in after-school club as we don’t have the luxury of finishing early), and shouting when I shouldn’t have shouted because I was tired. Post cancer, I have to factor in an additional diary of hospital appointments, still get the washing and ironing done while feeling a bit crappy, attempting to do my paid work badly, doing mama guilt in a different way – that this damn cancer may take me too soon, and shouting in frustration.

So in other words – I would really like to return to uncomplicated life pre cancer as post cancer isn’t great and I have a cub that needs me so I already have enough to deal with.

02/02/19

Man cub and I are happy with the start of the Six Nations last night, the cub is happy as it’s snowing and yesterday was a cheeky Inset day so no school (which meant she thought 5:30am was an acceptable time to start the day!! We’ve managed to go sledging today and while it was lovely to make more memories and fill my phone up again with a few more photos and videos I was still in a weird head space. My body is starting to feel more tired now – a short walk to our favourite sledging hill had me wiped. After making a snowman (albeit a mini one as I didn’t have the energy to crawl about making a big one), I feel guilty. I have fought so far with a lot of grit and determination and now it feels like I’m giving up the fight as I am so tired.

03/02/19

3:00am and I am in some weird steroid trip where my body isn’t my own and I feel like  am actually floating out of bed and above my body. I am hallucinating and feel like I’m on an acid trip (I mean I’m guessing – I’ve never actually had an acid trip!). It was a long  night where I didn’t ever feel like I slept. And by god, I’m sure the cub knows as she’s being proper clingy – mama, mama, mama – every two minutes. In turn I have been snappy and irritable. I still managed to boss the Sunday jobs – washing, dishes, ironing, Sunday dinner, pudding – and not fall over.

I’m getting bored already of my pity parties now. I didn’t want to change, I didn’t want this diagnosis. Now I have it I’m not quite sure how to move forward. We were talking last night about those who have similar diagnosis to me (Triple Negative) and don’t take on chemotherapy and radiotherapy as actually the ‘cancer’ has been removed. Words can be linked to that – confident/brave/assured/stupid/naïve/regretful – who am I to judge? At some points so far in this chemo journey I’d happily get off the train and say I want to end the journey now. I haven’t and I know I won’t but I daren’t dwell too much on it as an option as I may well take a assured/naïve choice!

But I did make a decision tonight. My birthday is next month – the big 40 (ssssshhh don’t tell anyone!) – and I do not want to ‘celebrate’ two days after my last chemo. I appreciate that probably is also worth a celebration but I will feel like crap and I just can’t see how I will enjoy anything properly. I want to taste a lovely meal, I want to feel good, I want to have enough energy to be excited all day long and I want to have a bloody good drink! I also want to smile, laugh and guffaw without it being forced and masking my pain. And if I already feel on the floor at 4th chemo, how will I feel two days after 6th chemo. Nope – birthday is being rearranged. Not cancelled (my family won’t forgive me!), but rearranged to a date where I can do all that I want too and feel fabulous. I just need to explain that to everyone and hope they understand. Fingers crossed my mama and the man cub get on board!!

I’m still fighting this, I have to. I and I have got this – just with a looser grip than I usually have.

 

Out of my comfort zone with a clinical psychologist!

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28/01/19

So after a weekend full of snot and teary eyes (and they were not of my own doing, purely cold driven!), I have had to mentally prepare for my first ever appointment in my life with a mental health care professional. I am absolutely not against looking after mental health and seeking help when needed. I have been very blessed and lucky not to have tapped into professional help in my life until now. However, now it is something that I have come to realise I may very well  need to move me forward with this journey once I have completed the medical side of things.

This is probably the hardest thing I have written about (closely followed by my hair, and you lovely folk know how much I struggled with that). I feel a little bit broken and a little bit weaker in myself knowing that I need some stranger (albeit a very qualified professional) to identify for me what I am struggling with and enabling me to cope with the changes in my thinking and my mindset going forward with and living with cancer. I am a pragmatist by nature, as likely shown by my previous musings. I spent the first four weeks of having a ‘lump’ sitting in the camp that it wouldn’t be anything significant (likely PASH – a non cancerous mass) and that at worst case scenario I would need an operation to get it out but not cancer. I remained pragmatic when I was told it was cancer, although I had my down days, and kept focussed on ‘the next appointment’ and how I could ‘get through it’.

However, as time has gone on and my health has been battered with medical inducement (who ever knew that the worst part of this journey for me would be caused by the drugs that will help me), my mental health has also took a battering. As my previous standard physical health has tried to help me retain a level of an immune system that allows me to still get up, be a mama bear and work everyday; my functioning mental health has started a slide into unhelpful thoughts and thinking that I didn’t think I would ever deal with. Because this is so alien to me, and following my desperate sadness around hair loss and how annoyed I was about something so innocuous in this journey I knew I needed to do something. I need to come out of this mentally strong. I’m certainly going to be physically weaker, but if I can do something for my mental health while I’m at it, surely I owe it to myself and my cubs to take the reins and see what I can do.

My poor dad has to take me to the appointment as its miles from work – I mean he loves being useful but the hospital canteen shuts early, so he just manages to get a coffee and scone and then sits in the car for the whole time! I however get to meet a very lovely clinical psychologist, sat with my back to a clock (its funny the little things you notice when you’re avoiding the big picture!) and I proceeded to have verbal diarrhoea for the next twenty minutes!! I felt that if I just talked at him then I wouldn’t get any awkward questions back! How naïve am I?! He’s probably watched that trick a million times!!!

I ranted on for a long time about how pragmatic I am, how I can cope with most things, how I haven’t had any huge issues in my life that I have had to work through, how I am amazingly stubborn (honestly, that’s not just me speak – my psych eval at work contests that I really am!), how task driven, focus driven, objective and rational I am at approaching problems. Then the kicker – all of this doesn’t quite work with a cancer diagnosis.

My pragmatic approach let me down -cancer happened.

No previous huge issues in my life – cancer happened.

Stubbornness – didn’t stop cancer.

Task, focus, objective, rational – none of that stopped cancer either.

That’s when I fall apart. Right there – all of my hard wired, works for everything / anything approach fails. Spectacularly fails. I do not know how to deal with this. Because something that is unlikely to happen to folk actually happened to me. And my computer says NO (typing this did just make me chuckle though!).

Once I’d calmed down (about halfway through the session!) and let the poor man speak, he started to make a lot of sense! I appreciate he is paid too and has also spent a lot of time training too, but I listened and it made sense so I liked him!! He said I needed to change my thinking and control issues……. Oh, I didn’t quite like the sound of that. I mean, I know my thinking is a little bit off with this cancer malarkey, but control issues – oh no – I like my control!!!

Then he broke my psyche down a little bit more. He uttered the words out loud – I am hard wired to be stubborn.

At this point a few people I know will be rolling about laughing. As was I at the time. Shocking state of affairs that he got that in 20 mins! Too funny in fact that he mentioned it was hard wired. Harder to deal with that I actually need to do something about that and to be honest I already know that moving that mindset will actually be harder than dealing with some of the physical side effects of chemo!

At that moment right there, I connect the sentiment to reality and know that going forward my wonderful CP (as I shall affectionately call him) and I are going to do a bit of a dance. He knows this too, I’m sure, and is way too clever to get caught up in it but will let me pretend! I’m going to do bluster and bravado at every appointment, like I’ve still got this, and anything he says is something I already know. He’s going to let me think this but subtlety drop little thought bombs for me to go away and deal with. I know he is going to test me and my thinking in ways that have never been challenged before (apart from the good old ‘getting older and realising better’ craic!). He is going to enable me to deal with this negative thinking in a way that is so alien to me at this moment in time that I am going to rebel (I’m still 21 at heart).

BUT. I know I need this. I know I need to be strong, to be able to deal with negative thoughts, to be able to challenge my emotions in a positive way, to live every day to the fullest, to move on from cancer and not dwell on the ‘what ifs’. I know I need help with that now – I may have had moments of ‘what if’ before, but I have never felt it weigh me down like cancer has and stay with me for so long.

CP’s parting homework task (who knew you got homework?) was to start looking into ACT (Acceptance and Commitment Therapy); a psychotherapy that stops the avoidance, denying and struggling with emotions and instead accepts them while being more optimistic about my other goals and values. This is deep for even me to even comprehend at this moment in time. So the appointment we have in two weeks is going to be a real treat!!! To add to the homework he also asks me to scan a list of thirty values and pick five that I strongly resonate with. I think my day jobs are easier than mental health management all day long at this point.

I’ve made it though; I made the first step in improving my mental health following this devastating diagnosis and subsequent medical interventions. I will not let cancer beat my mental health and I have got this. Certainly a different area of my health, but I’ve got it.

 

 

Third chemo blues..

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14/01/19

After the euphoria of making it through the party at the weekend being bald in front of a room full of parents of the cubs peers, and a PJ day yesterday at the request of the cub (who am I to complain about a PJ day?!), I have hit earth with an almighty bump. Five days after the third FEC drugs have been administered, and I am back at work and TIRED. No other words for it, but tired. The problem with working from home and being out of the office is that when you return to the office the entire day is made up of meetings with people who need your time face to face. Subsequently I meet myself coming backwards by the end of the days, and I am in a never ending cycle of never being able to catch up. My inbox is falling apart and my work sanity is slowly falling apart.

Add to that the taste in my mouth has reached a new low for me so far. Like I’m sucking on nails, which is delightful and doesn’t help my mood – food (nice food at that!) is something that keeps you on track in even darkest days doesn’t it? If anyone is like me, a good naughty snack on all the crap in the house is what distracts from the moment, and I can’t even do that.

Its funny (well, not really), but this year instead of resolutions re: food, I decided that we wouldn’t have the same meal twice for the year. We have never been bad at eating, but can very easily get into slumps of the same cycle. Especially weekends and Fridays and Saturdays can quickly lead to subsequent weekends of takeaways of pizzas. I was determined to change this, but the last three nights I’ve made lovely homemade meals and the only person enjoying them has been the man cub. I’ve eaten for eating sake and I’ve not enjoyed a bloody morsel of it. Aaaagh!

19/01/19

Four days into solitary confinement and I am demented. My mojo had up and went the moment I started it on Thursday and although I had some significant work to do which kind of kept me on track, I have still procrastinated in a lot of ways. I’d like to say that I’ve tidied the house in procrastination but I can’t even be bothered to do that (don’t worry the hoover still comes out every day – just not the cleaning of the skirting boards). I’ve dragged the man cub and child on a walk today to get some fresh air and it was absolutely grim. They both whinged in their own way (the cub more vocal than the man) and I think I cemented the awfulness of it when walked us into a field with three very large highland bulls! We reversed and made our way home very quickly at that point!!

Today I released my Just Giving Page for the walk I’m planning on doing in July. Twenty six miles hike round Ullswater in the Lake District. I must be bloody mad! But I’ve also managed to persuade twenty odd folk to join my madness and raise money with me. To kick off the fundraising first my lovely work colleague helped me articulate my story in a few short words, and it felt quite cathartic all over again. It’s Saturday night though, so I released it after I had a couple of drinks for dutch courage and then left it to do its thing. Hopefully I can raise what I need too, but more hopefully I can actually do the bloody walk!!

21/01/19

OK – I am not superwoman. I need to remember this. Yesterday I packed the man cub and cub off to see the family and I hoovered, washed, ironed, sorted paperwork, sorted the cubs room, then wondered why I was tired. I mean, usually that would be a couple of hours jobs and I’d still have had time to do a trip to the gym and an afternoon/early night out on the town (pre cub!), and I’d have still made it to work the next day, fresh as something flower like! Now, I am exhausted, can’t concentrate, no motivation and this is a totally alien concept to me. Never in all my working history have I not had a motivation to get a job done. Even when I was on maternity leave and three months self chosen redundancy time with my cub I was always motivated. I think today I might be on a scary downhill spiral and I’m not entirely sure how I’m going to get out of this.

24/01/19

I’ve made it back to work! After seven days of solitary confinement and a cub that has been in my bed for the last three nights with a full on cold, I have finally made it back to humanity. Oh and what a day. I had a cry before I even left the house as I finally realised that I had lost most of my eyelashes (none on the bottom lids, about five on the top) – its funny that I hadn’t even realised this the last seven days as I wasn’t really looking at my face or dealing with trying to do makeup and mascara! Lets be clear – mascara doesn’t work on five lashes!!!

So excited to get to work, I had big meetings (shocked a couple of significant folk who hadn’t seen my baldness since before Christmas which was amusing, but I did feel a bit sorry for them!). But as the day has progressed I have nosedived into looking like a snotty, weepy, coughing mess and I hate colds. I am not good with them in my best version of myself, I turn a bit pathetic and needy (man cub can contest) and whinge a lot! This will be a lot worse, I can feel it now. I can see wallowing in my own snot and self pity on the cards for the weekend and it isn’t going to be pretty.

I’m going to say that I still have this though. I’m sure I will on the other side of the cold, but I’m a baby with a cold so I’m going to reserve judgement!!!!

Cub (my world) and her innocence

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‘Is it still your left boob that’s still broken mama?’

‘Yes baby, that isn’t going to change. Its still the left one’

‘I’ll sit on your right side then, I can still get squishy hugs from that side can’t I?’

‘Yes baby, you can get all sorts of squishy hugs at all times’.

God dammit. Bloody cancer has crept into every part of my life. Like I knew it would, but didn’t quite know how far it would and how I would deal with it.

Since the first hospital appointment the cub has known that the left boob has had something going on. As anyone with a child will know, a lonely shower is not a thing. So on stepping out the shower fully bruised from the first biopsy to a child that is sitting on the toilet (as I said – lonely showers are not a thing!), she knew something was off. Not a big deal, I brushed it off. But from that first innocuous comment, I have had to become slightly more elaborate in the explanations without divulging anything in reality. She’s five. Cancer is not easily explained to a five year old!

At the first mention of cancer, the lovely Pauline, our Breast Care Nurse provided us with a children’s book as it was the first words out of my mouth – ‘I have a five year old, what do I tell her’. The man cub read the book in totality when we got it and I skim read afterwards. But in all honesty, it talks about parent sadness, frustration and annoyance more than anything else.  While it may work for some people I don’t believe it works for us. I don’t believe that the cub knows that we are sad. That we would ever show any annoyance or frustration in front of her. Not because I think we’re the perfect parents, but because I think we protect ourselves already by bravado and bluster so why wouldn’t we do the same for her? It also talks about anger, and that is something that my cub is not privy to or aware of. She doesn’t get that as she doesn’t witness it. Why would I then try and explain that we are angry? Nope – that book is getting filed in the B.I.N.

Our wee cub falls into the list of those people we fib too on a daily basis! (don’t judge – Santa, Tooth Fairy, eyes in the back of my head, etc etc!!) Sorry folks – but we are always fibbing aren’t we? ‘You alright’ as a colleague passes you on the stairs, followed by ‘yeah, smashing’ is an absolute fib usually. In reality, I don’t think you would want my long answer these days, and I also don’t think I could ever give the long answer so it’s all ok!! So I continue the fibbing and scale down the terror of cancer for my cub. She doesn’t need this in her life (ooh, neither do I but I can deal with it as the adult). She needs her mama bear to be the strongest woman in her corner and being her rock (she also needs me at 2am as apparently her dada closest to the door she walks in isn’t good enough at that hour as she can still make her way round the bed in the dark with her Halloween torch!!!! To be honest, some nights if she hasn’t made a racket getting up I usually awake to the creeping cub arriving like a scary IT child at the side of the bed!).

As this journey has progressed and I have become more tired, the latest heart breaking comment floored me:

‘Mama is really tired Baby, I need to have a lie down; but I’m nearly there and will be soon getting well so I can play more with you again’.

‘So does that mean your scar goes when you are well again Mama?’

What can I say to that? I tried to explain it would fade, but never totally go. It will always be a reminder on my body that I have been on this journey and it won’t be the only reminder – my brain is scarred now as well.

But then we snuggled in on the bed and we both had an afternoon nap together. Something we haven’t done in a long time. And these are the memories I need to help get over the physical and mental scars. This is all I need – my cub in my arms and happy. I am so proud of how we have reacted to this in the main for the cub. There may be less photos on my phone as we haven’t made as many weekend memories due to hunkering down and keeping well. We may have not worked through the man cubs 40th birthday treats from last year due to circumstance. But we are strong as a family. We have found strength we didn’t know we had and kept going – with the school runs, working full time, parenting, domestic chores, keeping food on the table and a house over our heads (although the dust collecting on my skirting boards is starting to taunt me!!).

I have this, and we have this. And we will see the end of this soon!

To wig or not to wig – that is the question!

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11/01/19

So two days after chemo and I am sat in a coffee shop with a work colleague business planning for the next year and consuming too many strong coffees in a short space of time. By lunch I was spaced out and didn’t know whether I was high on caffeine or chemo drugs!!

My head was also a little bit scrambled as well. I had made a decision last night that I was going to ring about a counsellor/psychologist appointment today. I feel like it’s time. I need to be able to work through the feelings that I have about cancer being part of my life as being my usual pragmatic self isn’t cutting it. The doubts, the prophesising about the worst, the sadness I feel – I need to work through how to process that in a positive way, as I am determined that when I am finished the medical part of this journey I will deal with this as a stronger version of me.

After making it home, I rang Pauline, my lovely Breast Care Nurse, and asked about the chances to access support – she asked me a few questions to get a ‘score’ – I’m going to guess I didn’t score highly as I definitely scored in the middle. But she’ll pass my score onto Peter, a clinical psychologist and they’ll see if I warrant an appointment.

By this point I was exhausted, so went for a lie down. My mother rang. Went back and lay down – the Tescos delivery arrived early. FML. Finally got an hour and the cub came bouncing through the door. I was exhausted.

I still had a head battering night ahead, as it is the cubs second party of the year tomorrow (and my turn to go – we take turns in this house!) and the first one that I am bald. This is the one that I had thought I would build up to wearing the wig for. But I haven’t put the wig on again yet and I’m not sure I want to. But also terrified that I will be in a room full of the cubs peers parents and I am going to look very very different! Not just for the parents, but the kids as well. The man cub offered to come with me, but I can do this. I am going to that party and I will just walk in as if nothing has changed. Ooooh, the cub needs me to be mama bear and I will do this.

12/01/19

This is it, what is going to be my biggest test of resolve so far with my bald head. Its bizarre isn’t it, I was ok with my work colleagues (well I was in the end), I was ok with family and friends. But now, relative strangers in the main are going to be my downfall. My biggest issue again with this baldness is that I have to explain that this is medically induced and actually I don’t ‘have’ cancer anymore. It’s the fact that as a very private person, people now know that I am going ‘through’ cancer. Its so bloody confronting and I hate it. But I am going to deal with this and it will be fine.

We get party ready – the cub with a white dress (I mean a white dress at a party – god help us!), and me bald. We were prepared. Then the cub threw a curve ball 10mins before we left the house and asked her dada to come. It certainly didn’t take much for him to be persuaded this time (he would have usually let me take the turn, but one of the reasons why I love him is he knew that I needed a bit moral support, but am also way too stubborn to ask for it!!).

We arrived, we entered a very dark room with strobe lights, we found a corner, and we adopted it! And the man cub stood proud next to me and the cub disappeared into the midst of other party dressed cubs, playing on a bouncy castle, playing games, running back to check in with us intermittingly, usually with another child in tow – and not one of them batted an eye. God, I love the innocence of children. I’m not saying that some didn’t go home and have a few questions, but they all just accepted that the cubs mama was now bald! To be honest, it was fine. The lights did go on for the eating part of the party and I was dying a bit inside, but a gorgeous couple we know who have a beautiful boy cub the same age as ours (my cub said she’s going to marry him one day as they went to nursery together!!!!) had been talking with us and though they might have been shocked they hadn’t made a deal of it, and that was all that I needed.

I made it. Party done, homeward bound and I feel stronger than I have in a while. I know that people will talk (and that is ok), that people will want to check in with us (again that is ok) and that I might finally let some walls down to let people be there for us as a family  (more than ok). I also know that I don’t have to hide, regardless of whether I feel like I want to.

As I’ve got this. I really have (along with my No. 1 & 2 supporters!).

First negative social media experience!

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So I got into my first argument on Facebook today and I didn’t like it much! I should explain I’m not one to put a lot of myself out there on social media (hilarious that I publish my most intimate journey here – I get the hypocrisy!). Facebook has grown around me but having never been ‘brought up’ with it, it hasn’t perforated every pore. I am a residual stalker, I have a few friends and I follow a few family friendly groups.

When I was first diagnosed with cancer I knew I would never seek answers from Dr. Google, but having seen other groups being enormously helpful for people I wondered if there was a group that was set up to support women with breast cancer. I found a secret one and while I spent the first few months stalking at the sidelines and trying to work my head around different treatments (there are many) and whether they might apply to me, I found it most helpful when someone posted at a point in their journey that resonated with me. Hair loss was one of those topics and my first public comment was to see what peoples thoughts were on ‘taking control’ of the shave. I received loads of support and was grateful for those that commented and reached out.

But today was slightly different. It was early morning, I had packed the cub and man cub off to school and work and was doing my usual FB scroll, when a post popped up that set my teeth on edge. Someone was getting their head shaved for charity and it knocked me sick. I put myself in the shower, had a coffee and was still feeling mad about it. So I posted the following:

I’ve just got so (irrationally?) angry after seeing a post about someone voluntarily shaving their head to raise money for a charity. Where normally this would pass me by in the grand scheme of things, having recently had to be forced to shave my head (yes, I made the choice due to drugs to help me beat cancer – I know), I found it such bad taste. Don’t get me wrong, I get it’s fundraising, but it has just really hit a nerve! Sorry to rant! Now I’ll make another coffee and try and start the day again!

So from my comment, I already explain that this is irrational, that normally I wouldn’t have thought a thing about this, that this was unique to me and timing wise I was struggling with the whole thing. I’ve made no secret that hair loss has been one of the worst parts of this journey. I also wasn’t naïve to the fact that this would be contentious as my previous question on the group had elicited  quite strong views in people ‘taking control’ of the hair loss.

First few comments were ok, both sides of the fence were tread, which was fine. Everyone was respectful in their view. Some totally believe in ‘brave the shave’ and there is no denying that it does raise a lot of money for a lot of different cancer charities. Families doing it alongside those dealing with cancer is a common theme and pub fundraisers are a great way to get people digging in their pockets and donating. There were others like me who hated it, felt it was demeaning, belittled what we have to do to get through chemo and that those with choice don’t fully comprehend the psychological impact this has.

Then bam…. In she swooped. Totally unexpected.

I think it’s a really brave thing for people to do, who don’t have to lose their hair, but do it to raise money for amazing causes.

Now, couple of things here – ‘brave’? ‘Brave’? I’m still not sure that brave is the word I would use for this. Also, I don’t think I disagreed that people are raising money for charity. I bloody get that. But it got worse – much worse.

I don’t think that just because we have cancer, you should have a chip on your shoulder about it.

Woooooooaaaaaah. A chip on my shoulder. I mean, if anything was going to make me lose my shit more than the original issue of the day was being told that I had a chip on my shoulder. My response:

I think it’s a bit harsh to suggest I have a chip on my shoulder when everyone else has commented respectfully whatever their views. Your comment is neither helpful and frankly disrespectful.

Then she came back. I mean, surely take a hint and leave it there dear.

Well the person that you wrote about in a secret group may feel disrespected by what you put.

Yep – the entire reason I posted it in a ‘Secret’ group in the first place. I don’t want to upset people who are doing great things, raising money for charities and worthy causes the length and breadth of the country. What I had needed was some perspective. Perspective from people who had been in exactly the same situation as myself. I wasn’t seeking confirmation of my ‘irrational’ thoughts. I wanted opinions and views from both sides. Which is what I was getting from lots of other people. Both sides of the coin were commented. What I didn’t need was to be told I had a chip on my shoulder. By this point I was at new levels of fury. My response though was measured and polite:

Maybe if you haven’t got anything constructive or nice to say, scroll on past and don’t comment.

Within minutes she had removed her comments. Now, that said a lot to me. She obviously had a reflect on what she had said. Or she didn’t trust herself to comment further. Whatever her reason, I chuckled. I read the rest of the comments and they continued to be a mixed bag. Those who felt like I had this morning, those who had stepped past it, those who had embraced it in their own way. All done respectfully and no judgement on each of us in this journey.

I came away believing that we are all on this cancer journey, the same as our life journey; which messes with our heads some days, screws our minds other days . And actually we don’t owe judgement on anyone to get through their day. We have no idea what journey someone made at any point of their day, week, month, year. Tolerance is a great attribute and if someone feels passionately about something, we should recognise that while that may not be our go to thought, something has triggered that and we can’t pretend to know how that feels.

I’ve still got this journey, but also recognising that I might need some extra help with the thought process around it. My usual pragmatic, stubborn nature isn’t quite cutting it any more and I need to work out how to change that hard wiring! But I’ve still got this!!

First 2019 chemo – but halfway now!

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08/01/19

My third chemo card from my wonderful colleague at work, and I so needed it ‘You got this’. Two days back into work and she couldn’t have nailed the sentiment more. I don’t have to keep spinning all the plates, I don’t have to always have it. But my poor little head is now getting a mental battering that I cannot do everything. It was so good to read in words from someone else though and I’d imagine that I will revisit this card over the coming months to remind myself of the message.

I also now have a wig. Yesterday at the same time of day I was excited. Today I am not and I have not worn it! I feel more self conscious now than ever. I might leave it until I have to face people who don’t know what I’m going through. That was the main reason I got it – so I didn’t have to cringe inside under the gazes of other people. Certainly a lot of parents at the school don’t know (winter is great for hiding a bald head under a woolly hat!). I’ve got a cubs party next Saturday -maybe I will do it then after a play with the wig in the house (by myself and without anyone wanting to share it!). There’s also a lot of external work colleagues that I will need to see in coming weeks and again, I had planned that the wig would be my confidence boost, my ability to still rock into a room, be the strong, feisty woman that everyone knows; without anyone doubting my ability, my strength or anything else that they may feel they will question. I know this sounds irrational as my pragmatic head wouldn’t do that myself but my little irrational devil is chipping away at my mind-set and has me second guessing actions that wouldn’t have phased me before this journey started.

09/01/19

First chemo of 2019, third chemo of six due today. But pre chemo I am booked in with the Oncologist. Maybe I might find out about radiotherapy!

Nope, oncologist appointment and I didn’t get to meet the scary woman, but got to meet a lower level of the clan. I was asked whether I had any side effects from the chemo – I mentioned I had crazy eyes and my wrist (vein) pain – then said no to anything else. However the questions didn’t stop there – he proceeded to ask about every side effect that was possible to which I responded ‘no’ too for every one. I thought I’d covered that by my initial no!! The man cub was twitching with frustration at this point!! The only thing the questions did was prolong the appointment by another three minutes. I was advised I could get a prescription for the poorly eyes and could pick up at the pharmacy in the hospital.

When I was finally finished saying no, I asked what would happen with radiotherapy. ‘Have you had your pre assessment appointment’. No. ‘You’ll find out then’….. Great, thanks, good to know. Thanks mate. We left in a record breaking five minutes of entering, with a prescription, and no further forward. I thought the man cub was going to internally combust.

We then tried to go and get some headscarves as I still wasn’t wearing the wig and my head was still bloody freezing. That didn’t go well either – we caught the volunteer on the hop, setting up and not in the zone. I got wrong for trying a head scarf on; ‘people don’t like it’ (well people can wash the bloody scarves), was flashed a lot of styles, had to pay cash, cash had to be taken to finance office, did I have change, if the finance office was shut I might not get changed…. We left with two scarves. And a mood that was dropping further.

Back on the ground floor of the hospital, and with plenty of time before chemo (they’d given us half an hour between appointments – that hadn’t been needed), we searched for the pharmacy which it transpired wasn’t signposted until halfway along a corridor and was in the bowels of the lower ground level. It was a quiet walk between us – we were both trying to maintain normality. We should have known at this point the day was fated. Yep, the hospital didn’t stock that prescription and I would need to go to a local pharmacy. We both buckled and burst out laughing. This is our luck. This is what we laugh at. We could have cried, but laughing was our go to and we belly laughed all the way back to the chemo ward – the nurses totally think we’re mad – who enters the chemo ward still laughing?!

I’m half way there. But god, I will not miss this cocktail. The ward is still as impersonal as ever and as I was on the main ward today it was worse than usual. The red drugs entered for the last time, and then the other two lots. But we’re done with them. Also got a little bit of information from the nurses who said I’d go a big hospital in town for four to five weeks for radiotherapy. While that sounds logistically gruelling its doable and more information than we have had.

But we’re done. Halfway there. And I’ve still got this. I’m clinging on to the fact I have. Its getting harder though….

Wig fitting – what a start to 2019!

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03/01/19

It’s the day that I’ve been waiting for! I’m going to try on wigs! Whoop whoop. I am so excited. I had rearranged this appointment as wanted the man cub there and I also now have the cub as she is still off school. But prior to that I had to brave my first day back at actual work with my lovely colleagues and friends still being bald! I shouldn’t have ever worried – no-one batted an eye and nothing was any different. Of course it wasn’t – I work with amazing people and nothing should surprise me about their attitude to life and resilience – I was accepted as I always am.

I then had lunch with my lovely friend to plan our preparations for our 26 mile walk in July. She was the first one to sign up with me before I got my army behind me, and we are now planning how we are actually going to achieve this feat in reality. Again, I have to brave a café with no hair and I just blasé it while quaking a bit inside! But we have a plan to build walking miles for folk and get to July fit and able to walk 26 miles. It sounds bloody terrifying and I still have four chemo left. What was I possibly thinking of?

To start the challenge of getting fit, I mapped the route to the hospital for the wig fitting (32mins walking) and made it in 20mins – I’m not competitive with a virtual map!!

As per usual, our family life is never straight forward and the car (in the garage) was not ready to be picked up by the man cub so he was going to be late. Very late. And I stressed. So blazed into the wig fitting solo at the start, and blew the girls mind by agreeing to try anything and see where I ended up. Now, blonde is not my colour is what I worked out very quickly. I don’t have the skin tone (or the eyebrows!) to pull it off and it was so strange. I have never been one to experiment with my hair that much (apart from the random phase of short spiky hair when I dyed it red and pink!). The wigs kept coming and I’ll admit I nearly had a tear in my eye when a short brown wig (close to my original hair style) was tried on. It felt so surreal.

My cubs arrived and I was so happy to have some affirmation on my thoughts over the blond wig (from the adult cub at least!). The child cub loved the blond one (‘you look like Elsa mama’).

I kept trying (with the cub taking a few goes herself!) all the wigs, even a few red head ones which were beautiful but again skin tone didn’t work! I finally felt comfortable with a brown one but the length wasn’t what I wanted and typically the length I wanted wasn’t available there and then. But I was confident of what I wanted and a quick phone call to the head office (in bloody Cornwall!) confirmed there was the real deal available and winging it in the post. I am beyond excited at this point! I wouldn’t have to be bare and bald anymore – I wouldn’t have to deal with pity glances and looks. I wouldn’t have to deal with relatively random strangers asking if I’d been ‘unwell’ (honest I am desperate to knock out one of these days  – ‘nah, just fancied a change in look and thought I’d try bald’ – someone will push me to that point)!!

07/01/19

So first day back at work after the Christmas break and I am quite happy to go back to work as we are doing an away day in a beautiful Castle. It was so peaceful and calm although the day was hard work and long. I then had to escape to get bloods taken and then belted home to be there for cub arriving. A parcel had been delivered to the neighbours and for the life of me I couldn’t remember what I had been shopping for. I got the look from the man cub as if to say ‘was it a pissed purchase again’, and I honestly didn’t have a clue.

By the time the neighbour dropped it over to us, we were all mid stress bath time with the cub, But when I realised it was my wig, I was over the moon! I unpacked it from the box, at which point the man cub said ‘oh I thought it was longer’. I then whacked it on mid bath time, cub splashing about, man cub tidying the chaos and me trying to get a look in the bathroom mirror while chaos ensued around me.

Do you know what – I killed the moment, and I have killed the wig off. I couldn’t get it to lie right, I couldn’t quite shake the feeling I was trying to be something I wasn’t and I couldn’t embrace the ‘new’ look at all. The cub was laughing at me from the bath, the man cub had disappeared and I was stood there with tears in my eyes thinking I’d made a huge mistake.

Baths and bed completed and I tried again, but I’d ruined it. The magic was gone and I don’t know if I’ll get it back. I’ve never been a dress up girl and at heart I don’t have the confidence to do it. It feels like I need a lot of confidence to pull this off, bizarrely more than it did to just be bald, and I don’t know whether I can dig deep again for the confidence required. I decide to just deal with work as I have been and when I have a ‘big important meeting’, or maybe the next cubs party where I have to see all the other parents for the first time I’ll have an excuse to find my other confident streak and whack it on.

For the minute though it is going to stay in the box on the floor (apart from the times the cub tries it on!), and I will just have the bald. I’ve still got that and I will deal with it.

Christmas to New Year – living with chemo.

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25/12/18

Iiiiiiiiiiittttttttsssssss Chhhhhhhhhhhrrrrrrrrriiiiiiiiiiiiiiiiissssstmas!!

I’m allowed to be a little bit excited this year – just don’t spread too widely – I’m known as Scrooge! We had the most delightful day, just the three of us, PJ’s all day, a blip when the cub cried buckets at The Good Dinosaur – who knew a Pixar film would break the five year old!!

We had an amazing day and shut the door on the crazy world and crazy cancer. It wasn’t allowed in today.

27/12/18

I haven’t left the house since the day before Christmas Eve and I am ready to flip. I have significant cabin fever going on, I’m snappy, I’m grumpy – I’m not being fair on anyone. We escape the house for a bit of time.

Its also the first day where I haven’t worn a buff on my head in the house as I get used to the cold. I mean, I can’t explain how cold it is not having hair. I have no idea how those with short hair / bald deal with it – I’m going to now! The cub is also so accepting. She has become super clingy over the last few days and hilariously where she used to twirl my hair she is now rubbing my little bald head. She also made sure it was straight one way and spiky the other – I was no more good!!

29/12/18

Yep, I’m getting a quite significant side effect (for me anyway – I totally appreciate that second chemo and the type of chemo I am having hit people differently and I am very lucky so far). My veins where the drugs were put through in my teeny wrists feel like they are constricting and I can barely twist my wrist. I’m trying not to whinge as I’m one of those that will just leave things a couple of days and see if it gets better. It’s not a temperature and a quick glance at the Macmillan notes on the drug cocktail indicate that its only a doctor job if its right where the injection was given. I mean its close, but not that bad…

31/12/18

OK, I’m heading to the chemo unit. On New Years Eve. Under duress from the man cub, I rang the nurses on the ward and they told me to come in. My wrist pain has now spread all the way up my arm and towards my shoulder. Shooting pains and no ability to pick up or do anything with my right hand. I was told to make my way in. So off we went with the cub. I was a bit worried about her being on the ward – the first time she had been to hospital and maybe understood the reality of where her mama went every three weeks. Why was I worried? As per usual, she took it in her stride (not least because she had gone in dressed in her unicorn headband and a twirly dress, because, why not) and was spoiled rotten by everyone there. After a thorough check up and a few questions (hilarious as there is no privacy at all so the personal ones get asked in a half whisper through gritted teeth!) the consensus was those veins won’t be used again. It apparently isn’t uncommon (the cocktail is very strong – I dread to think that if it is doing this to the direct veins it entered my body on, what it is doing elsewhere – hopefully its job of killing off any rouge cells), my veins should recover but it will take time.

Not the best way to head into the New Year, but after the all clear we headed home, to get celebrations underway – just the three of us. Which became two of us at 8pm!! A few drinks and we both ended up in a reflective mood, this certainly wasn’t the year we thought we were going to have this time last year. Who ever does? You never think cancer is going to creep into you life, and if it does there is always the hope it ‘won’t be me’. But it was me. And I have had to deal with it.

2019 is a New Year and again will be a different one to what we would have ever planned. We need to finish the chemo part of this journey and all the weird and wonderful side effects that it is going to throw at me. Then I need to get genetics results and hope that I don’t have dodgy genes! A bit radiotherapy to follow that with no idea what that looks like. Then moving on, living life after, living life differently with new knowledge and brand new views on this precious life we have. Oh, and also a wee trek of 26 miles to walk in July to raise money for Macmillan. What a year it is going to be!!

I don’t sign up to resolutions usually. This year isn’t that much different. I usually just try and be a nicer person each year (usually lasts until 2nd January!), not lose my shit so much (usually lasts until midday on the 1st January!), the usual be healthy, drink less, exercise more (again – 1st January – broken). I stand by all of those but this year I’m going to need to dig deeper than I ever have to deal with some of the medically induced illness, the head mash of having had and living with cancer and ensuring that my family are happy and loved always. The dig deep is going to be needed while also feeling at my lowest ebb but dig deep is what I need to do.

One thing I do want to do when I am at the other end of this journey is actually start researching and reading. It upsets me daily the number of people who make it to the FB group I am part of, but that’s the tip of the iceberg, that’s only the girls who have breast cancer. Cancer itself is so much more wide reaching. While I can’t process more than dealing with my own stuff now, I will. From there I will work out what I can do in a tiny small way to make a difference.

In the meantime, I’ve still got this. I’m digging a lot deeper now, but I do still have it.

Dealing with baldness (and trying to deal with Christmas)

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20/12/18

So what made me think that going for cocktails the day after chemo and shaving my head was going to be a good idea. But I did it! Only two cheeky afternoon cocktails, and a good chat with two good friends. We swapped news, and I sat with a warm woolly hat on for an hour. Then I got hot, scratchy and frankly the hat was coming off!! These two weren’t bother – to be fair they have seen me in a lot worse states than my hair loss is showing off now! And also know far too many of my secrets so I have to trust them with this one!! Walking through the bar wasn’t that scary – strangers don’t know me, don’t know if I’m rocking a look, have alopecia or actually as the truth would be have had cancer. And I don’t care much about strangers opinions. I never have. I will never see them again. What I am more worried about is tomorrow, when I am popping into work to see one of the girls off to a new job, and they are my colleagues, my friends, and know me (also might have seen some states of hair!). I am dreading it. Every second of it. But I don’t have a wig yet, I don’t own any fancy hats, I have a lot of woolly hats – but they look a bit daft indoors. I’d rather just own it than look daft – I do that enough of the time with other stuff!!!

The man cub picked me up after getting cub from school, and came in to get me. He looked shocked I had braved it, but the cub didn’t bat an eyelid. She didn’t care. I follow that lead!

21/12/18

Well considering I only had two cocktails, after an hour up to get cub and man cub out the house to school and work, I returned to bed and didn’t get up until 12! Must have needed that!!

It gave me less hours to panic about the work function. I got dressed, and just got on the bus and off I went. I was anxious as I approached work, but could see them all in the bar as I got closer, so went and prepared in the office. I didn’t want to walk in and pretend I was doing a big reveal. And this night was nothing about me. It was about a lovely girl I have worked with for three year, going on to the next part of her adventure and I wasn’t taking away from that. So I wanted to just own this, let no one make a deal of it, and focus still on the gorgeous girl leaving our midst. So I pulled on the big girl pants, walked in with a bottle of prosecco (we were doing BYOB) and just poured a drink! Joined a table, and started up conversation as if nothing was different. And I think it worked. No-one made a fuss, no-one made any significant comment, and life continued. Hopefully I achieved my aim.

Again I didn’t stay too long (I’m not sure a drunken version of myself, two days post chemo bald, would make good company once the drunken arse kicks in – I don’t quite trust where it would go yet – maybe weepy, maybe angry – none good).

22/12/18

Not winning today. I don’t have Santas presents, and the cub has asked for two things. Two. And I have failed spectacularly to prepare for the fact that she has asked for two things that are not in fashion anymore – loom bands and a Little Miss Princess Mr Men book. These things do not exist on the common market because they are not in fashion. Why I did I not anticipate that a three year old craze would be hard to pull off in normal retail park shops three days before Christmas. After a fruitless search of said local retail park, I have resorted to Amazon Prime, setting up a student account, graduating in the next two years to get guaranteed delivery on Christmas Eve. This is tipping a bit of my anxiety too a significant high. Ever the pragmatist, I refused to let it get me down. I decided to trust the millions that already use Amazon Prime (maybe knocked a prayer to some Gods), and had confidence I would save Christmas. However I have never been this disorganised – not with the child. And feeling constantly a bit ropey – not ill, but just ‘not right’ – was knocking me.

P.S. Hat didn’t come off in public today. The risk of seeing someone I might know amongst the hoard of strangers was too much and I couldn’t quite face it.

23/12/18

Two days before Christmas, and I woke up and realised we hadn’t done a yearly tradition of going to see Fenwicks window. So off we went (and I maybe thought we secretly might beat Amazon Prime and find Santas present!). Town came up trumps for somethings – I did manage to successfully buy some other presents that I also needed – I was back in my usual groove of being unorganised but bossing it with no stress at the end of the day! Still no success and still relying on a 10pm order from last night for delivery tomorrow. Eeeek. Fingers crossed now.

24/12/18

10am, knock at the door. Santa has saved the day via a miserable Amazon driver who dropped off the three presents that will make the cubs day. Two boxes of loom bands which I’m sure I will regret and my hoover will be acquainted with soon, and a Little Miss Princess book. I am now a convert to Prime and its merits. Food is in, required presents are here (yet to be wrapped of course but that’s tonights job with a couple of drinks in hand!). The cub and man cub leave to go and see family. I hibernated (still not braving the bald fully) and did boring household tasks.

But reflecting on this time of year, I have maintained normality. I have bought late, swung close to the line and still managed to achieve it. We will go into Christmas Day tomorrow, just the three of us, where we can spend time together, appreciate the good things in life and just be together. I can’t wait.

I still have this, I am still the Mama Bear of this house and I appreciate it all.

Unsung heroes – my army – small but perfectly formed.

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I have a very small army and I never realised how much I under appreciate them until this journey started. I don’t think you ever do until a crisis kicks in and then you know who you can turn too. I also realised I had more than I ever thought when I rashly signed up to do a 26 mile and all of a sudden I have a number of people joining me either directly on the walk or in support, that totally blew me away too.

All of these people mean more to me than they could ever know. They are my world and my heroes and while my old life (pre cancer) was good, I couldn’t have anticipated or realised how much I needed them to be by my side. Let me name and shout about them here, as I think they deserve a shout out!

The man cub – he’s going to be furious about being shouted about! But its tough – he needs it! Unassuming and letting me talk about my journey he is my absolute world. His only comment when I started putting some of my message out there was never to surprise him with what I wrote. This might surprise him! But I couldn’t do this journey without him. I won’t pretend that we have had the perfect relationship  in our fifteen years together (fifteen?? I can’t believe it has actually been fifteen!!). We have had a few rocky moments as most relationships, a bit feistiness from us both at the beginning when we knew we wanted to be together but were stubbornly holding onto the single life advantages! But we have laughed and made memories that I wouldn’t want to make with anyone else.  From the moment we had the cub we changed and regardless of the fact he still infuriates me (ironing – does itself apparently!) I wouldn’t have done this parenthood journey with anyone else. We have picked each other up when we are down, supported each other through work and life tribulations, and now he sits with me in a chemo ward (for no other reason but just to be there) and attends every appointment that I have told him he doesn’t need too. He pretends he is strong but now crys a little easier at a sad story on the TV! (will kill me for that!). He is the ‘cutest and bestest daddy’ (as quoted by the cub) in the whole wide world, and makes me smile at least once every day. He won’t be walking 26 miles – looking after the cub he declares (?!), but I know he will be at there throughout the day and at the finish line to cheer me through.

My inner circle – life itself can get in the way sometimes of a catch up. There’s those school friends who scattered for Uni, relocation now means we see each other less than we would like, and other challenges of parenthood, full time jobs, cub activities, and precious family time mean we catch up only a couple of times a year. There is the special one I met at Uni and I couldn’t live without her and her beautiful family. Through all the distance and time, we catch up as if we hadn’t been apart. I am also lucky to have a small group of people who have joined my inner circle over the years and they have added quality and depth to my life that I didn’t know was missing. I have grown as a person by knowing them and I treasure them as they have broken down my walls and know most about me (I need to keep them close!!). They also (shockingly!) share much of our interests – rugby watching, a good night out (very rare!) and good old fashioned banter. They fit right in!

My work colleagues (old and new) – first up to join the walk was the amazing Becca, who without hesitation joined (I think she might have been drunk!) when I mentioned I had signed up. Then came our Audrey (who I don’t think I’ve ever referred to as anything other than ‘our’ Audrey for a long time!). Then followed a group of (possibly coerced!) colleagues who for their own individual reasons are making the leap with me and I am entirely grateful. All are either walking or cheerleading (or donating – if they don’t know yet!)  and their support (cards, flowers, time, donations) are all so gratefully received – they just don’t know how much. Hopefully they do now.

Officers (old and new) – now how to explain this wonderful bunch of people. I work with elected officers who are closer to their student life than I am to old age (!) and they are an amazing, talented and driven group of people. I have old and new Officers joining me, and I can’t wait to catch up, feel proud all over again of their achievements (I feel like a surrogate mammy in most instances), while they make me feel old all over again! I love and hate them!!

Those not doing the walk but have been cheerleading from the sidelines throughout this journey fall into two main groups:

Parentals – my biggest cheerleaders and the ones I can turn to at anytime. They drive me mad on an almost daily basis, but that’s to be expected as they are closer to me than anyone. They are the people I can push away when I am struggling and can get much of my flak, because they will come back. I appreciate that’s perverse but my parents have my back and see the best and worst of me. I don’t tell them enough what they mean to me, I would hope they know. But I wouldn’t and couldn’t be the person I am today without them.

Extended family – when I met the man cub I had little realisation what a big family looked like! And then I joined a Scottish (there are some English in there!) clan that I love dearly! They are bonkers, wonderful, crackers and loving all in one and they have accepted me into the fold and loved me as one of their own. They  adopt you in with no expectation other than to be yourself. Their unfiltered love for me has humbled me and their acceptance has made so happy, words are not enough to portray.

I realise that I have gushed somewhat in the telling of my army story, and this will come as a shock to most people I know. But I need each and everyone of them to realise that they play a special role in helping me in this horrible journey and my life in general. From the sentiments they write, the jokes they tell, the hugs they give (I’m not a brilliant hugger but I do like one!), the actions they take – every single bit of it means more to me than I can ever scribe well enough to explain. They make me feel like I have got this. And I’ll keep fighting to show them I have.

Bald head – now a reality!

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18/12/18

Going to bed with puffy eyes does not help the look when you wake up (just for info!). I wake up with puffy eyes and that doesn’t help my mood. The man cub says I have a bald patch the size of a 10p at the back of my head. Great.

It was a gruelling morning. I was barely holding it together. The puffy eyes were making me feel like I could cry at a moments notice. Not helpful. I managed something useful, sending presents to the bestie and kids, and I even managed to buy some presents – go me! Back at work, I can literally feel hair falling out when I move. My whole head is so sore and I can’t focus on anything. But I get my second card from my amazing colleague (with a note on the envelope to say its not a Christmas card!). It had ‘Cancer is an arsehole’ on the front and it nearly floored me right there, but also reminded me that I was dealing with an absolute arsehole and I had to view it that way.

I still haven’t decided what to do tomorrow, do I cold cap or not. If I don’t then I face more hair loss and ultimately do I just need to shave it. The man cub reminded me when we got home that it had mentioned in cold capping literature that I could sit under the cold cap for longer if I wanted to try and keep hair. Which would also bring back those crippling headaches. And I’m also not sure that I could deal with longer brain freeze.

I just can’t bite this bullet. Why? Why? Why? And I can’t explain this to anyone. Everyone is different. Everyone would deal with this differently – I’ve seen that through the FB page that people tackle this in their own way, and I will never judge anyone’s decision as it is unique. It is possibly the hardest decision I have ever approached and need to make. And I can’t bloody make it.

Evening and cub in bed, and man cub informs me the bald patch is visible. It looks ridiculous and I know it won’t grow back (the lady garden is proving that, as are the armpits!). Chemo tomorrow and I’ll be winging it again at this rate if I don’t make a decision.

The man cub and I spend three hours going back and forth over the decision I need to make. I keep thinking I’ll make the decision tomorrow, but deep down I know I need to make it now, and go to bed knowing its done.

11pm, and exhausted with the merry go round of conversation, I finally admit to myself and the world that I know what I need to do. I need to shave it. I need to accept its going, take it off and reduce the distress I am feeling around seeing the loss. I need to reduce my distress so I can focus on my baby girl and not be absorbed by this. I need to take some control and be strong with the new look. I need to stop tormenting myself and having the same conversation when I can actually stop this. I don’t want to do the same thing in three weeks time with more hair loss.

19/12/18

After a funny nights sleep and a far too early alarm, we left in preparation for the day ahead. I had a very quick conversation with the cub about removing my hair and what that might look like – she was still half asleep –  she just looked at me and gave me a kiss!.

After dropping the cub at the school gate, I dropped into my hairdresser (coincidentally directly opposite the school) and asked my lovely Anna whether she could see me that afternoon to take my hair off. She could see the shake on me, and offered a 4pm appointment that day. Decision made.

We headed for the hospital, and ducked into Macmillan’s office to get some head scarves. As is our luck it was shut!! Of course it is! Couldn’t make up our luck!!

I got on the ward, and the nurse allocated for today said ‘cold cap?’. Nope. No I am not. I have took control apparently. The nurses were great and right behind me. Couldn’t have felt stronger at that moment. But then, as it was quicker to the drug stage, I suddenly felt it all. And it was brutal. Every single vial that went through me (including the awful red one) was felt running though my veins. My wrist and arm were twitching and I totally got that the cold cap had distracted me last time. But I was done and dusted in two hours and we were back home by 12.30.

Emotionally exhausted from the previous few days, last nights conversation and the road ahead, we had a cheeky lie down in bed and woke up at 3.30 with the man cub in a panic that we needed to get to the hair appointment. It was probably the best way to spend the time waiting for this moment of reckoning.

At the hairdressers Anna did her thing as she always does. She knows I don’t chatter and she just sat me down and started chopping the majority off before the clippers appeared. At that point the owner of the salon, Yvonne came over, sat at the side of the mirror and started chatting. Just general, and then more about my journey. And all the while the man cub was sat off to on side watching and Anna took the clippers to my head. I didn’t have a tear, I didn’t look in the mirror. I sat there, chatted and lost my hair.

What I hadn’t realised or anticipated was that my head was bloody freezing!!! As soon as I stood up from the chair, I felt the draft, but luckily as its winter a woolly hat doesn’t look amiss. As I went to pay, I was knocked back and told to come back whenever I was ready. That nearly made me cry!!  Buggers!!

We picked the cub up from after school club and took her home. Before I took the woolly hat off, I sat down with her and reminded her of the brief conversation that morning. She lifted up my hat, laughed in my face, then pulled it back on my head as ‘it must be cold mammy’. God, I love her. And because she is fine, I am fine. I have took back control (as much as previous days I doubted this feeling). I have had no tears tonight, and much as I’ll have mirror moments, I have this now.

I have control back. I have this. The house is a tip, Christmas isn’t prepared. But I have this.

Chemo induced hair loss is getting real…

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14/12/18

Its Friday!!! After working at home / being confined to the house for seven days it seems weird to be celebrating a Friday. But today is the day that we start Christmas festivities, leading into the tree buying / elf revealing weekend. Don’t tell anyone (I am renowned for being Bah Humbug) but I am a little bit excited. Well, I would be if I hadn’t noticed that every time I run my fingers through my hair, handfuls are coming out.

After nailing a day at work, as a family we went to a local evening attraction at a museum that had opened its doors to allow winter wonderland activity. It was bloody freezing and my head actually hurt with it, but we spent a delightful few hours making finger puppets and carousels, eating hotdogs and standing in front of roaring fires when we could! It was a lovely evening, but when we returned home and the cub was in bed, I had a couple of drinks and the breaking started. I just don’t know if I can do the whole ‘shave the head and take control’ that everyone states in their posts about this part of the journey.

Everything anybody says seems to push me further over the edge:

‘It’ll grow back’ – I know it will but in years; not days, weeks or months.

‘You’ve got good bone structure’ – what does that actually mean?

‘It won’t look that bad’ – how the hell do you know?

‘You’ll feel better taking control’ – easy to say now, and I might, but I don’t want to (petulant five year old attitude right here).

‘You’ll feel better when it’s done’ – I know, but I still don’t want too (still acting like a five year old here).

Aaaagh, all I know is at midnight after a few swift drinks I am not going to solve this one!!

15/12/18

A busy day shopping, mundane activities and family organisation ready for the tree. Tree was bought (second year we’ve done a real one and it was chosen by my cubs and beautifully weird!!), rearranging of furniture to accommodate, decorations dug out from the depths of cupboards and everything ready for tomorrow. I had little time to think about the hair, but did have a wee rant on the phone to my bestie and it felt good to get my ranting off my chest.

16/12/18

By, its been a long day. The tree has gone up properly, an emergency run for fairy lights has been done (they are garish as but the cub chose them and I’m not going to argue!) and a million baubles have been hung. And all the while my hair is full on falling out in clumps. I mean the bit grey I had is also coming out, but it is literally just falling out as I touch it. After the man cub headed to bed I had a little cry about what I was going to do. I’d ranted earlier to my mother about what I was supposed to do and her suggestion was a counsellor! Not helpful at this immediate moment to be honest!!

I decided to put a post on the secret FB page to see how anyone else felt, and I got some lovely responses. A few girls on exactly the same timeline as me and while it was nice to hear, I still couldn’t quite get my head around the fact that I had to decide how to deal with this. I know I have two options. One – continue cold capping on Wednesday (and pray even though I am not a jot religious!) and see if I can hold onto the hair (while also dealing with the five day migraine and crazy time in a cold skull cap. Two – I shave it off; and that’s the end of that story (well, it’s the end of one story but the beginning of another).

17/12/18

(Elf arrived! Oh yay!!)

Broke, broke, broke. I’m back at work today and I’m trying to avoid the hair situation as much as possible. As its Monday before chemo, I need to get bloods taken and appointment at 10.40. A cheeky return to bed (to avoid waking hours as much as possible) didn’t work out for me and I ended up blitzing the house and then I ended up running down the lane like an idiot, reaching the doctors at 10.39!! Blood taken within minutes and I ran on for the bus to get to work. Still managing to supress the crazy situation of the hair loss. The solid meetings that I have to lead while looking like I am in control were hard – I was not ok.

As mentioned in previous posts, my hair is absolutely not my best feature and never has been. But I can’t explain how devastating and ruining this feeling is.

We had a quiet night, tomorrow is last day before chemo and I know a decision is impending. Going to bed, after chatting for a bit, I realised that the bed was actually covered in hair. I mean covered. And for the first time, I absolutely broke. I mean, broke. I think Ryan was shocked as it was the worst I have ever been with any of this journey. I didn’t cry this badly when I was diagnosed, I didn’t cry when I had the operations (apart from the little crazy wake ups from anaesthetic!!), I didn’t even cry when we got the all clear margins prognosis.

But this hair loss, this situation has actually took me to the brink. And I don’t know what to do. I don’t know whether to shave. I don’t want people knowing I am ‘ill’ (when technically I am not). My previous self pity in these posts about hair loss seem pointless now as I am actually living the actual real journey now. I’m heading off to sleep with puffy eyes.

And not sure that I do have this any more. I need to for my two cubs though. I  need to be strong for them. They are my world and I need to make it through this for them.

Chemo – home working confinement

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06/12/18

Day 9 of the first cycle of chemo and I am in self agreed confinement to make sure while my immune system is at its lowest I am keeping myself safe from germs. While this is what I need to do and keeps my family and man cub happy while I still work, I know this is going to be hard (and this is just the first one!). To be honest, I will never run out of work that I can do at home, and without distraction I’ll knock doors out of windows! But I also know that this crazy work pattern will not be helpful to my lovely work colleagues. However, as its December and the festive season approaches I might get the first two of these cycles through without too much disruption.

I spend the day making a plan of my diary, but it looks like a Sudoku  puzzle that doesn’t quite match up. Much as my confidence was high after speaking with OHS, I now feel a little overwhelmed with the task ahead of me. How am I going to actually make this work, support my small team of work colleagues without failing them, while keeping myself fit and healthy to keep the battle going so I can continue to be cancer free in the future for my cub. Its certainly a challenge!

09/12/18

So, two days working at home was fine, I actually got caught up finally after the disruption of my hospital appointments and operations. But this Sunday I am down. I have missed out on Santas Breakfast yesterday, which I have never booked before but thought it would be good for her to go to this year (before I realised that I was going to miss this!). Then today I’ve missed a family birthday, where the man cubs family all were and I had to stay at home and miss catching up, miss seeing them when we usually catch up this time of year. And I don’t return to normality (i.e. leave the house) until Thursday. I am cabin fevered already!! The only thing keeping me going is the fact I have a project that for the next three days will take all my waking hours so I can distract my mind from this. Its got too – I need to feel alive.

10/12/18

Well today was interesting – noticed the lady garden was going – my discovery led to the wider revelation that I must have been shaving my armpits in the dark for absolutely no reason whatsoever the last few days!! (I don’t ever turn the light on in a morning until I am dressed so have been totally oblivious to this little joy!!). I have checked my head hair religiously and as it was fairly intact I hadn’t thought about the wider body hair implications. It’s a funny feeling, I mean I know I will save fortunes on razors and wax but oddly its just another step where I feel less like the woman I was (all because of a bit of body hair). This journey is truly the gift that just keeps giving and in ways that I never thought it would. I also realise that I am very lucky to feel so well and the lack of a bit body hair is shallow and self deprecating. But that doesn’t stop me having a hard time with this. And I will be honest about how I feel, thats why I put pen to paper,  but I don’t doubt that I am wallowing in some instances and will look back on these moments further down the line and chastise myself when I am in a better head space.

12/12/18

Third day solid working at home since the weekend and I am ready to tear the walls down. I’ve spoken to four people in total (that includes the cub, man cub, mother and boss) and I am craving normality. I need to get out and tomorrow I will – I’ll be back at work and I bet by 10am I will be missing the quiet of my own home!! I also realised late last night due to my mother kindly highlighting, that I may not be able to donate organs. I’ve already mentioned earlier I need to look into blood donation, but now organ donation? She’d read an article in the Times (her bible of choice) and there was a lovely (scaremongering) feature article on two people who had received organ donation and then got cancer in those organs. Why, oh why does this kind of article make it to a mainstream paper. Where are the articles that remind women (and men) to check themselves, to go for smears, to attend mammograms, to get every lump and bump checked. Where are those articles that can save peoples lives rather than scaremongering about organ donation and the good that it does every day – all those organ donations that allow people to live life that would have evaded them if they had not been blessed to receive one.  I am not naïve to the abuse and pitfalls but still truly believe the pros outweigh the cons, and when this part of my journey is finished, I will start the conversations with healthcare professionals about what I can and cannot donate.

This journey is relentless, but I still have this.

The days following chemo….

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29/11/18

Well today I have felt like an absolute fraud for being ‘sick’. Had my OHS appointment on the phone at 10am, which was really good, and had a sensible conversation about how I might be able to still work on my good days (out of the low periods where I would get work to join 21st century and work from home days 9 – 15 to be extra safe). I floated it past the man cub and I know he has misgivings but I’ve promised I will be sensible. My boss was great about it and totally trusts me, so I just need to make a work plan and make it work. No reason why I can’t nail this.

The parentals turned up to check on me – shocker! – and I dragged them down to the docs to pick up a sick note. Its only a 20min walk both ways, and I felt great (although I looked a level of special as advised that I shouldn’t wash my hair for five days after cold capping, and it still had the conditioned look that was something to be seen!). Just as the parentals left friends surprisingly dropped in – I was in a state of shock with the state I looked, but it was lovely to see them.

Once I had the house back to myself, I realised I was just waiting for the wall to hit. Peaks and troughs said one of my lovely work colleagues, and I need to just take this high for the moment. I am warned that a fall may come from the number of side effects that we have gone through, but for the moment I have a plan, I will tackle my diary tomorrow now I am going to go back to work. Its been a good day.

30/11/18

Well I made an absolute cock up of the injections I have to give myself from day 3 to 10. So when I had a c-section I got injections that didn’t show a needle so you just whacked it against your leg, needle pushed in and then disappeared. These Injections didn’t look the same so after some faffing and realising you did have to see the inch long needle and I’d messed the first one up (bin for that). Second one, I nailed – but putting an inch needle at a 45 degree angle into your stomach is not a fun experience. I had to ring the chemo unit as was now one needle down though and admit to being a numpty!

However I was still feeling fraud like, did five hours work and felt like I should have been in work.

1/12/18

Its now nearly Christmas and I’ve never dreaded it so much as I do this year. I can’t work out when I will buy presents (online may be the way forward). We’ve planned to get the tree in on the 15th which is the day after we go to a night time experience in a local museum so should make me feel a bit more festive. I’ve also booked in Santas breakfast for the cub, but the man cub will have to take her as I will be on house arrest that day. Of course it bloody is. Tiredness had caught up on me today but the cub wouldn’t leave my side – man cub offered to take her to the shops and barbers with him, but she told him he’d be alright on his onw and that she would keep me company! So we chilled with hugs and dancing and cuddles!! The headache that started the day after chemo has reached new levels today and I now think it is a migraine off the cold capping – it feels like an army banging my frontal lobe with hundreds of pick axes.

3/12/18

I return to work, and instead of feeling human like I did last week, I am at my worst. The headache is out of control now, and I kind of can’t wait to work from home as I might get loads done! I also had to visit the hospital to replace the cocked up injection. I felt like such a child! I do love my job though. I laughed, went to meetings, caught up on the gossip and felt like me again. I was back in my work place. Where I feel good and I feel strong.

I’ve still got this. And I am doing well (although early days).

First chemo – coming at you

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27/11/18

Last day at work before first chemo and I got the best card – ‘This is shit’, and it truly is. I also got a wonderful, thoughtful present – a set of noise cancelling headsets which would help with the chatty chemo nurses! I was so touched by the message and sentiment. Its amazing what people do for you and the depths of peoples emotions and how they have reacted to this cancer and I couldn’t do it without my army behind me. It might be a small army, but they are my army and I love them all.

28/11/18

Its chemo day! We have a later start as take the cub to school rather than launching her out at breakfast club. I feel a bit exposed being there as I am the stranger at the gate. The last time I did this was when she first started school a year ago in Reception and now she is in Year 1 full of confidence and sass. I feel like everyone knows and I don’t want them to feel pity for me. The man cub then treats me to a coffee as we aren’t due in the hospital until 10 and I feel its going to be long day. We also dropped into the chemist to get some paracetamol as I’d read that it helps with cold capping – still haven’t decided though – and the lovely sales assistant advised me not to take more than the recommended does of eight tablets in twenty four hours! She doesn’t have a clue how many drugs are going in my body today. We chuckled on the way back to the car.

Once we arrived at the hospital we waited until 10.30 to go into the ward. I spent a good fifteen minutes of that time laughing at a sign six foot up on a blank part of the wall, in the smallest writing advertising that this was indeed a Waiting Room. It’s the small things that keep me entertained!

Once in the chemo unit, I can’t describe how impersonal it is – it is literally a waiting room of folk at various stages of their chemo, finding a seat and taking up a position with the drips in arms. You wouldn’t want to talk about anything personal – theres ten other people sat within earshot doing all they can to listen. The nurses on the ward are all lovely, but it doesn’t provide me with any comfort at the crazy time.

I was given a humongous anti sickness tablet which had to be taken before treatment could start. Then a lot of paperwork was discussed around the number of drugs I was about to take. Followed by agreement that I would cold cap. I made that decision there and then. I might not have bothered had I known the faff that was about to ensue!! At least with cold capping I was in an area of the room that was more private and not as easily overheard. It was a good job as I got conditioner lathered on my hair (to keep the cap stuck to my head apparently), then three nurses and twenty minutes later we still didn’t have the bloody cold cap on my heard. It’s a weird contraption, mix between a swimming cap of thick rubber and a jockeys helmet. But they couldn’t get the sizing right for my head!! I did start laughing hysterically at one point. It was maybe an omen. Devastatingly, I couldn’t get the headset to my ears

The kicker was then the timings. I had to sit with it on my head at minus four to six degrees for thirty minutes pre drugs going in then ninety minutes after the drugs had gone in (which in itself would take half an hour). At that point I sent the man cub into town. We were both bored and there was no point both of us being bored! Those first thirty minutes went quickly – and then Julie started with the six enormous syringes (two lots of red ones which would mean red pee apparently! Good job she remembered to share that nugget with me). Once the drugs had all gone through the drip, I then sat for the longest ninety minutes of my life. My head was so cold I started to shudder and couldn’t even talk straight – it was like the weirdest drunkenness ever.

Finally managed to leave the hospital at 3.30 and was starving! Ate like an absolute horse and don’t feel too bad. No sickness, but feel tired. I think its emotionally exhausting though. My bestie had me crying on the phone tonight when she was crying. I want a big hug off her.

But first chemo down, and I have this. And surprisingly I have laughed a lot today, its just what me and my man cub do – we laugh. He is definitely in my army.

Prep for chemo journey

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26/11/18

Pre chemo appointment to get all the prep stuff done was today. I had the day off with my cub as the appointment wasn’t until 3pm and she had one of those off school days! We spent a lovely morning pottering about as per her demands (I know my place!),

After lunch out with the short hair with the parentals I left them to babysit while I was prepared to spend what I thought would only be an hour in the hospital. I mean how long can it take to give some blood and highlight again the side effects of the crazy drugs I am about to be pumped full of.

Arrived at 3pm and waited for the man cub in a flap as he was stuck in traffic, but we made it by the skin of our teeth. Seen by a student nurse to do the pre questionnaire bit (how much alcohol do you drink? – I’m sure if they compared my notes the lies would be obvious!!) and also do MRSA swabs – one up the nose (lovely) and one in the groin area (brand new territory for me!). They also took the all important bloods that have to be checked two days before every time to make sure the blood cells are at a safe level to have the chemo.

Then the ward nurse comes in and we start a very long conversation about me, what I do and what I need to do on this next part of the journey. They asked where I worked and as I work in a building with lots of students they told me it wasn’t a good environment and if I got an infection I could get sepsis (straight to the bad stuff). I was shown a graph of how my immune system drops from Day 1 of chemo to Day 10 where it will be at zero immune system and then climbs back up at Day 14 to Day 21 where I then start the cycle again. My face must have had a mix of devastation and fury at that point. The man cub was nodding and I knew what he was thinking – I know him too well. But he also knows me and knows my stubborn nature. I just can’t compute that I am supposed to stop doing the one thing that keeps me sane at the moment (the cub is in school – she doesn’t need me during the day). I mean, I can redecorate the house from top to bottom, but once I’m done that I’ll probably be looking at committing murder through boredom. And the man cub would be first! Once the nurse recognised the tension in the room, she went and conferred with colleagues and came back with the same answer. And I didn’t have a plan at this point. My mind was working at a million miles an hour but I didn’t have an immediate solution.

Cold capping was discussed again, I didn’t have a definitive answer at this point, it has a chance to work, it has a chance not too. I do not like self imposed uncertainty and this was one of those moments again that I had to make a decision. How quickly did I want to go bald? But I decided that I could wait until the morning of the day! I like to leave it to the last moment (I mean the cub wasn’t named for two days as we couldn’t decide – we like that kind of uncertainty!!).

Then again, we went through the enormous list of side effects that FEC (a whopping three drugs administered one at a time). It has to be given by hand, which Julie the nurse said would take at least half an hour then confessed ‘don’t worry, we all like a chatter’. She doesn’t know me yet – I do not like a chatter!! That will be closed down very quickly.

The list included bruising, bleeding, anaemia, feeling tired (I mean I’d imagine that many drugs could knock a horse out!), hair loss (yep, still getting my head and hair round that), diarrhoea, sore mouth ulcers, loss of appetite (not necessarily a bad thing!), change to taste (metallic), numb or tingly hands, nail changes (nooo, I like my nails, always have done!),  muscle or joint pain, early menopause is likely to kick in; a few others mentioned, but my head was exploding again by then.

Two hours after arriving, we were leaving with heads full. My heart was also breaking about how logistically I could manage work and chemo at the same time. I didn’t have any answers there and then but I was going to have to think it through and see what would be sensible but realistic for me and my sanity.

Arriving home to an excitable cub and parentals asking a million questions we still didn’t have all the answers too is always a good leveller!

I was still sure that I had this though. I will get through this.

My timeline.

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A few people respond to my blog posts in current day form, thinking that I am writing as I go. And while I try to date most of my posts, this doesn’t come through clearly when people are reading it for the first time.

So I feel like I need to explain why I write blogs out of time, but in the present tense.

When this journey started I felt I needed to get my thoughts down somewhere. I’m not the best talker, being an introvert. And I usually need a few drinks to open up even to the man cub. Which isn’t a helpful approach every time I need to talk! So I started my little black book (I realise the symbolism is hilarious now!). And I started writing everything down. The good, the bad and the ugly thoughts that came into my head and how I really felt.

But what I couldn’t do was release those thoughts immediately. I wasn’t strong enough to write it down and release it from my soul at the same time. So I wrote everything down, and then a few weeks later I felt strong enough to re-process those thoughts (with a few less swear words in some instances!) and type them down in a coherent way.

I write as I talk. I am ruthless, unforgiving, truthful, sweary at times, and a lot sarcastic! And feedback I get from those who know me has made me realise that my voice and message still comes through my typed word. So if you don’t know me, just imagine a deep Geordie accent with some stubbornness reading out these words!!

I work about two to three weeks behind my actual cancer journey as that feels comfortable to me to be able to process what I was going through, make it more real (rather than the actual word dump I might sometimes end up doing), and take out some of the very personal emotion. I am still an introvert and I can’t quite give all of my soul yet although, believe me, there’s more that will come as this journey unfolds.

As an introvert I also spend a long time second guessing my content. I want people to feel part of the journey. I want people to understand, if they are ever personally affected in any way by cancer, how it may be affecting loved ones. In the longer term I want to do more with the blog when I am finished my own journey in terms of fundraising and research (my brain still cannot compute that in 2018 we are no closer to a full blown cure for cancer and all of its forms).

There is also a lot that has thrown me now you have the label of cancer, you can’t give blood, I may not qualify to be a transplant donor (something that I have always been so passionate about – I strongly believe it should be an opt out, not an opt in), your holiday insurance is now astronomical, I’m going to guess that life insurance will also be so (don’t tell my mam I haven’t got any yet!).

The next steps of the journey through chemo are not going to be pretty. There is a lot more tears (which I totally didn’t anticipate) and more angst than I felt through the cancer bit. For some reason the actual living with the longer term cancer treatment activity is breaking me more than the actual dealings with surgery to remove cancer. It’s a real gift that just keeps giving; this cancer journey.

I take you on this journey, so I can share. So I can help others. So I can make sure no-one feels alone. Because I have found that I am now. Unfortunately the reality is that unless someone is going through exactly the same thing at the same time, you don’t know how to deal with all direct hits. That’s why someone might find it helpful at some point in three months, six months, a year or more. They might associate with something written and may feel hope. Hope that as women who face this challenge can keep strong and take this journey on.

We’ve got this. I’ve got this.

Radio continues……

02/05/19

Day 8 and had a cracking start today. After yesterdays epic hospital appointment and utterly emotionally exhausted I woke up shattered. So the dad decides to have some more road rage today. Just the indicators alongside the horn so we avoided the window wiper debacle, but I literally had my head in my hands. Then he took three tries to reverse park the car in the multi story. By the third time, I had my hand on the car door to just get out and leave him. The strong coffee was needed today. But he was chuffed to bits as it was a free one with the loyalty card! I can’t even get happy about that – I’d much rather be having free coffee at work that I can make every morning. Saving grace is the free car parking for us cancer patients! Perk of the bloody big C!

After radio was done, and heading back to work, he decided to use the left lane on a roundabout to turn right. A really busy roundabout. Where luckily when he’d pulled out there was no one else who had dared (they maybe had a premonition), where he careered into the left lane, while I shout that he’s needing the third exit, right dad, right. ‘I know’, he says to me. Aaaaaagh. How much is car hire? I’m sure it’s cheaper than my sanity. Someone give me some strength – twelve days left. Just twelve. Nearly half way.

After a long, long day at work, I arrived with the man cub to pick the cub up from after school club. As we crossed the school yard, her little mate ran over and said ‘are you going to grow your hair back?’. It made me smile to be honest. The absolute innocence of children. I smiled at her and just said ‘oh yes, I hope so!’. Her response – ‘yay’ and then she ran off to continue playing. The man cub and I laughed and laughed. So innocent and totally accepting. Such a u-turn from the negative experience a while back with the child who was being a wee tinker. It’s funny that I forget that all other experiences with the children who are friends with the cub, those that haven’t batted an eye at my hair, my baldness, my illness – is less significant. But it should be the norm and I should be shouting about them. I should be making less of a deal about the bad experience and more of a  deal about the beautiful acceptance of both normality and innocent questioning. It would be even better if this acceptance continued in later life and there were no judgements.

Tonight, I have given myself a pep talk about the negative thoughts that are creeping on me while waiting for the next ultrasound. I need to put to bed this negative stuff. I had a lovely interaction that was so positive today. I know I have never lived in worst case scenario so I need to stop doing it. I need to just deal  with this waiting game again. I will get an appointment when I get it. I need to remember that the other girls who are being seen before me also need to be seen before me. So I can do this. I’ve done it a lot now. I can keep doing this.

I’ve been getting back in my groove at work, I’ve got my good mood face back on and loving the normality of being in the office more frequently (my team might not!) having crazy conversations that make me laugh every day. I just need to equate that all over my life. Because normality is what I am craving now.

03/05/19

Day 9, radio done after a lightly longer wait (some kind of staffing drama it seems which wasn’t ideal but still wasn’t more than 40mins in the hospital (the drive in had taken longer!) and then lets just drive through a red traffic light. Straight through. As I start to open my mouth to say stop, we were already through it. ”Ooops’ he says, ‘sorry I missed’ that he says. Oh yeah – no bother dad – at least there wasn’t anyone crossing the road!! Someone please send help!!

I’ve also just received my appointments for Day 15 – 20 (booster week) as well. Where I have been grateful for getting an early appointment everyday at 8:00 so I can get on with work during day 1 – 15, I have now been given appointments at 12:00 every day. Are they kidding? 12:00?? I’d have to leave work at 10:30 and unlikely to get back to work until 14:00. So might get five hours at work on a good day compared to the seven hours plus that I am averaging at the moment. I need to get on the phone next week as it’s Friday now and I can’t quite deal with the argument with the appointment making folk!

When I got home at the end of another trashing day my cub broke my heart like she can in a heartbeat;

‘How was your day baby?’

‘Really good mama, how was the hospital for you today mama?’

Oh, go on my beautiful cub. Keep breaking my heart and being the loving, gorgeous human being you are. The squishy hugs, her assertion that she wants the hospital appointments to stop and that she is sad for me are breaking my heart. It is clear now that the daily arrival of her daddit is making her more aware of the fact I am heading to hospital. Previously, we may have mentioned the odd time but it was never in her radar or so obvious as it is now. And much as she is loving her daddit giving her big hugs and kisses every day, it is also making her more aware of what her mama is going through. Just another shit side effect of managing cancer.

The other epiphany of today was yet again, another saying that I never expected to knock out in my life – I have super itchy nipples! WTF? That’s not something that you can say out loud as a pain in the arse side effect of treatment! It also isn’t something that you can deal with well, as I discovered in a few meetings today. It’s not an area that you can itch in public and let me explain – an itch that isn’t itched is the most annoying, niggling, frustrating situation. The only thing I can equate it too is when you have an itchy foot and boots on, but you’re also driving and can’t do anything about it. So you wriggle the rest of your body to distract from the source of the irritation. But an itchy nipple. In the middle of a working day. There is no wriggling or itching another area that can distract me. Dear god – this is another annoyance of epic proportions, hopefully short lived, but crikey just another gift of the cancer journey.

I’ll keep going. I am nearly there. I am closer than I have ever been and I am now within reaching distance of the final ten days, the half way marker nearly achieved.

I have this. I really do. Itchy nipples along with me.