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.

A hair pity party…

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22/11/18

My hair. My heart constricts, my breath pauses, I feel ill thinking about getting my hair cut, never mind shaving it. I don’t know whether I break the back of this feeling by cutting it off first or if I just go straight to shaving it. I feel dreadful and broken. Worse than I actually felt about the cancer in my body. Worse than I felt in the build up to two operations. Worse than I felt about telling people.

And all the while, I know in my sane mind that this is ridiculous. It is hair. It doesn’t define me. It doesn’t make me who I am – my devastating wit (bahahaha!), my love for my family, my passions about so many things but mainly my wee cub, my quick fire tongue that leaves me in trouble a lot of the time and my love of the majority of swear words (minus the c one) to adequately describe a lot of situations!! I have also had very short hair before. Albeit I went through some dodgy phases but also theres a few decent pics that the man cub quite likes.

I’m not going to lie, since I broke the back of a good bubble at SWAT of all TV programmes, I have had a few tears behind the bathroom door. Nothing extreme, I seem to have quenched the desire to fully breakdown, but silent tears never the less. And it all seems utterly futile as it is a given, and inevitable. Which is usually when I move into acceptance mode as I like a plan. Its just I don’t like this plan very much at all.

23/11/18

Its Friday night, the night before the hairdressers and the neighbours come round for a ‘couple’ of drinks. When I say a couple, we ended up dancing round the living room at midnight and declaring that we’d shave our heads together. I mean, I wouldn’t put anyone else through it but the offer is beautiful. There was also a very funny conversation about contraception now I can’t take the pill – discussing the use of condoms with lesbians has to be a whole new scenario in my life that I laughed and laughed about!

24/11/18

Now its all well and good having a good Friday night. It is not so well and good waking up at 6am on the sofa, crick in neck, fully dressed, lights still on and an imminent hair appointment at 11am. Downed two pints of water and tried to get at least another hour before the cub arose. It was sorely needed!

Arriving at the hairdressers feeling more than a little tender, I swayed while the cub got her hair cut first. I’d declared to a couple of the girls that the restyle was a necessity for chemo rather than a choice so they were on it and amazing. And I did great at first. The back got absolutely chopped (but you can’t see that when you’re staring at your own face in the mirror!) And then my left side was chopped which is where reality started hitting hard. I mean, I only had barely shoulder length hair, but I still have a lot of it and as it was dropping down the gown I could see it, really see it. By the time my lovely Anna moved to my right side, silent tears were flowing and then I broke. Proper sobs. I mean the shame of sitting in a hairdressers where the majority of Saturday folk are getting Saturday night ready and theres me sobbing, while the cub is in the corner knocking out colouring of unicorns for anyone who would pay her attention.

I have never felt the need to bolt out of a chair so strongly in my life. But somehow, my arse stayed firmly put, knowing that if I bolted there was a good chance I couldn’t physically put my arse back in that chair – and that would have been an even worse haircut situation!! One of the girls sat with the cub making a unicorn cat drawing, Anna stood between the cub and myself, while the owner told me I looked amazing. And I pulled my big girl pants back on, took a deep breath and told Anna to get on with it. And she did an amazing job.

The resilience of the cub is amazing to me. She didn’t bat an eyelid when I was finished, told me my hair was very short, she liked it. And she still loved me. I mean, if I wasn’t already on the edge she was about to tip me over. But there was more to the day to be had – we nipped into the shop on the way home and as I walked in the first girl I clapped eyes on was wearing a head scarf. Whether through cancer or alopecia, I wasn’t to know. But I did think that the gods were testing me to my limits that day!!

I got home, cried some more. And hated my hair for all it was hairdresser done. I absolutely know that it never looks like that the next day and I will never again return to the look the hairdresser pulls off. And if I hate it now, and I am going to hate it full time when it is all in my control.

26/11/18

I’ve spent two days hibernating. I don’t want to be seen. I’m not ready to face the world. Bizarrely though I went out for Sunday lunch yesterday with my gorgeous family and we managed not to see anyone we knew, and it was all very normal and mundane. It’s strange as I don’t ‘feel’ different, but I ‘look’ different when I look in the mirror. And that’s how other people see me and judge me. And that’s not what I am looking forward too. Ugh.

I’m still being a strong bugger inside though. I’ve got this.

Life ticking by…..

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19/11/18

It’s a week since I’ve put pen to paper. Why? Because life has continued as it usually does. It has gone quiet again. I managed to skip past Children in Need this year – I never miss it. My most memorable Children in Need was returning to the home the man cub and I first shared a little bit worse for wear and after he had fallen into bed I watched the late part of the programme where the sob stories really kick in and in a drunken stupor I managed to donate £100 with the sky remote alone! That was a tight month thereafter and I’ve had the remote hidden from me every year since! Also, the blubbing would have been epic.

I braved a kids party on Saturday but it was for the ‘other’ Year 1 class so only a few people there, none that I knew, so I escaped under the radar while supping coffee and watching a click and climb wall which I totally wanted to do! I wonder what the conversation will go like when I have no hair. That is dwelling on my mind a lot at the moment. My hair has never been my crowning glory, I have an unruly , not quite curly but wavy, fluffy barnet that does not do as it is told and moisture is it’s nemesis.

20/11/18

I read today that someone in the FB group I follow hasn’t been offered a ‘lift’ on their well boob to align them after surgery. My consultant must be amazing as he was quick off the mark to mention it – I mean I am really lopsided already!! He’s never had an issue with mentioning it and I never even raised it first. I didn’t expect it to be honest and I’m still not sure I want to do it but at least I have the option. It appears some others aren’t even being given that. I’ve read a bit more today about the Triple Negative type of cancer I had is a big thing, and then I stopped. It’s out. I need to focus on that for the moment.

I’m still really haunted by thoughts of no hair and having real palpitations about getting it cut short on Saturday. I’ve not had a good nights sleep for weeks, and dwelling on it is driving me wild. I’ve read today that even cold capping, people lose their hair between days 10 -15 and it can come out in clumps. So then loads just shave it anyway. Aaaagh.

21/11/18

Work is absolutely crazy and I can’t seem to get on top of it fully. I feel like I’m losing days as chemo fast approaches and I’m not sure how to deal with it. Today was one of those crazy days at work. It still feels like I am drowning as I battle with competing emotions in my head. I’m trying to be all things and I’ve barely got my head (and hair!) above water. I seem to forget that emotionally I am dealing with quite a big elephant, while still trying to be superwoman working full time, co-parenting a wild five year old cub, managing a household while trying to look after me. It all feels a little bit too much at times.

I’ve quipped twice today about my chemo. The first in a meeting was ok, as I played the card at the right time! But the second went very quiet and awkward. Then I felt quiet and awkward, and why did I? I shouldn’t have too. But its strange how other people feel uncomfortable and then I feel like I need to keep it on the down low. We should all be shouting about this damn illness. But we’re typically British in our approach to it I’ve realised. It is such a weird place to be – visible illness is easier to deal with as people have to confront it and usually check in. Invisible illness is easier to ignore and this has certainly felt isolating throughout. Why would it not when I’ve spent the last two weeks doing everything I usually do, looking like I normally look. But hiding under a cloud – a cloud that I have to carry while doing everything else and its hard.

I’ve started to think a lot about what is happening to look for cures and while I know that I have given money to a lot of good causes, I’m not sure that I understand the clever world of the scientists that are looking for cures. While I live in this crazy world now, I’m not sure I could even process half and a quarter of what I would read, but I’ve made myself a promise to make sure I do read more about it, I do understand more about it and I know where the money needs to go to make a difference. Because surely there are clever enough people on this planet right now to tackle this. I have to believe that. Along with making sure that everyone, and I mean everyone, checks their boobs!

I’ve still got this, I’m sure, just possibly a bit less hairy in future!

Cosmetic Boob Surgery – yay or nay?

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So to distract myself from the one woman pity party that I am having about my hair, I am going to go back to basics and talk about the boobs. Those boobs that are causing me the most angst at the moment, but those boobs that have also done amazing things.

Lets go back to the 17 year old me, pre legally getting lashed, pre steady boyfriend material, pre knowing what actual life was about. I will never forget the moment (and it is bizarre what your mind holds onto isn’t it?) when I walked into the local ready for a karaoke night, dressed in the finest dress I had acquired (halter neck no less) thinking I was an absolute legend; to be took down by a girl some five years older than me stating loudly for all to hear ‘it’s like cherries on an ironing board’. Looking back on that moment, knowing that I remember it so vividly now, I cringe at the younger me dying inside. If only foresight was a legitimate thing. That young me did  do a little bit of bluster and brag, then caved in a corner for the rest of the night and certainly didn’t attempt any karaoke (not a bad situation for anyones ears to be fair!).

Progressing through the formative years of ‘growing up’, I realised that the unnatural hormones of the pill presented its own merits – the boob area grew! Enough never to warrant a cherry reference, but not enough that I needed a bra to reign them in. And I spent a good ten years in the blissful ignorance of underwires, padding, support, cross wires or even a bra at all. I may have had no confidence about other aspects of my being but my boobage wasn’t one of them.  Was very comfortable with them!

Knocking on to the 30 marker (oooh – still upsets me), I noticed there was a lopsided situation. Just slightly. But after much discussion with the girl friends, we decided that it was a real thing (like your feet!), and that if it wasn’t significant then we’d all be ok.

But then the kicker, pregnancy. I was a later arrival to the club than most of the friends I had, and by that time, fifteen years of taking the pill had enhanced the boobage area somewhat more. As soon as I was pregnant, they grew, and kept growing. Until I’d reached a size that your standard shops don’t accommodate (do not get me started on that conversation as you will be there for quite some time!). But with growth came a more significant lopsided issue! And then breast feeding. There are no more words to say on that, but anyone who knows, knows. Pert uprights become spaniels ears. Its no more glamorous than that!

There I was, finished breastfeeding my cub; nine months of hard bloody work (and we went through some significant ups and downs with this, it wasn’t easy and it wasn’t a beautiful journey in parts, that’s for sure), but staring at this skin, that at some point in time I had used for wily ways and then more productive ways, I was thinking, geez – they’re not attractive!

I spent a lot of time reconciling myself with my new body. My ‘new’ boobs and ‘new’ body post baby were a revelation to me and the man cub. An acceptance of this state was undertaken as familyhood just took over and naked antics are limited with a wee cub!! There ain’t much time for that crack amongst teething, separation anxiety, mid night creeping Jesus appearances at the side of the bed, etc, etc!

Then as the years progressed since breastfeeding and now, I have had significant conversations with the man cub about surgery. I have spent a small mortgage on bras that fit the big boob (the little floats!), I had bought a swimsuit with more scaffolding than my house would need for the roof, I get cross every time I go into M&S and their sizing stops at a F, I get mad when shops seem to think that the larger boob size you are the larger back size you are (NO), and I had shouted a lot about ‘getting these sorted’.  If I had won the lottery at any point I would have absolutely gone under the knife to get them aligned.

Fast forward to my current situation, after two surgeries to remove cancer and an offer to reconstruct and I’m not even sure I can do that. It now seems more vain than it was (believe me this is purely personal), and I don’t know if I can now voluntarily go under the knife to ‘sort them out’. I  know that six months ago, I would have fell under a surgeons knife and ‘sorted’ them out within a heartbeat. But having faced risks of surgery as they are (and NHS folk are so clever but there are always risks) I don’t know whether risking more surgery for ‘cosmetic’ purposes while my baby cub still needs me, after all I have gone through already, is worth it. To be honest, I don’t need to confirm my thoughts on this until at least March when chemo is done and genetics results could define a very different journey if mastectomy is a real recommendation. But by god my head is battered already!!!

But I have this battle! And I will own the outcome!

The Oncologist

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11/11/18

So I had a wonderful conversation with someone today as I started my Christmas shopping ridiculously early (I’ve finally accepted that this year things have to be different, so I have to be more organised than buying on the 23rd December!). Anyway, back to the conversation. I was advised to cut my hair short before treatment, so it wouldn’t be as much of a shock when it started falling out. I mean its still going to be a bloody shock – I’ll still be bald. And have no hair. Whether it goes from mid length or short. It will still be bald.

And then the kicker of the conversation. ‘Well it will be easier for others to cope with’. FML. I do not give a flying duck about how others will cope with my hair loss. I don’t even much care how the man cub is going to cope. They will all cope. The only person I care about who copes with this is my cub.   I care about how she is going to feel when I have no hair. I care about how I am going to discuss that with her. I care about how I keep it from upsetting her and keeping it positive as we have done throughout this crazy journey. So everyone who might be struggling to cope with my hair loss, please don’t; look out for my cub for me.

13/11/18

After spending a day dwelling on hair loss, and waiting for the Oncologist appointment, I was finally on my way back to another hospital this time, on the start of the next part of the journey. My Oncologist was a straight talking fierce woman. She scared me a little bit! But then super intelligent women usually do. She was remarkably efficient and talked through the next steps methodically and clearly. One of the first conversations was that I had to stop taking the contraceptive pill immediately (last time I did that for a month, I got a cub nine months later). Seems that it won’t be such a problem this time as I’m going to start going through the menopause. The actual menopause. Oh bloody joy, another gift from cancer. As if I wasn’t coping with enough already.

Then the treatment – as I had aggressive cancer, I was going to get a real humdinger of a cocktail of drugs – FEC-T – which I can only describe as a treat of side effects as far as six pages of printed literature could tell me. Then the hair loss. Definitely guaranteed with this combination of drugs. I could try cold capping but that doesn’t offer any guarantees either. I still don’t know whether I want to do that. In amongst the catalogue of information being provided I had bloods taken by a nurse who couldn’t have been more bored. Then returned to sign a consent form saying that I consent to sickness, diarrhoea, ulcers, shakes, red hands, acne, ruined nails, hair loss, bruising, nose bleeds, conjunctivitis, joint pain, headaches. This is a form I really want to sign!!

But I got a date, chemo will start on the 28/11/18 – two weeks!! Why would it not be two weeks! I like to keep things standard! I will have to come in for blood tests on the 26/11/18 and meet the nurses from the Chemo ward. I might have an idea then of what the next four months of my life will entail.

We walked out in a blur again, but found ourselves in the Macmillan hub in the waiting area. The lovely Maggie chatted to us and that’s when I find it hard. Talking to strangers is actually a lot harder than talking to friends. I find myself closer to tears at that point. Maybe because I feel like I need to be brave when its talking to those closest. We picked up a few leaflets and flipping through the hair loss one  and it did advise to cut hair short. The unnamed person above will feel vindicated!

I got back to work two hours later and spent the afternoon putting on my work face. But the back of my mind was spinning in circles about whether I wanted to go bald. I mean, by choice I wouldn’t. But if I just do it, do I own it and do it on my terms. So I made the decision on my way to get the cub to pop into the hairdressers and change my appointment to a restyle. And I’m terrified. Now I don’t know what to do but start searching for new hairstyles!

Its funny still to me that now when Cancer is out of my body I feel worse. I think it might be because I can’t actually hide this bit. I am going to be bloody bald! But I won’t be ‘technically’ ill. Just medically induced illness. The gift that keeps on giving, this cancer.

But I’ve got this. I’m going to do this.

Limbo – its a weird place!

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30/10/18

I’ve said this before, but I will repeat, the waiting game has quite possibly got to be the worst part of the big C journey. There is nothing so brutal as waiting for an appointment letter to come or for the next appointment. Tomorrow will be a week since I heard I was ‘cancer clear’ and I am still yet to spot the golden envelope come through the door, beckoning me for the next red carpet of chemo! However, today was an interesting day on the FB group I follow and I had a little bit of hope about being able to work through chemo. Maybe my life won’t stop and I can pretend that this chemo bit is just a side journey.

31/10/18

Whoop! The golden letter arrived! Guess what – two weeks time I get to meet the oncology consultant – booked for the 13/11 at 12. I knew it. And booked for the middle of the day. Perfect bloody time to disrupt my working life. But two weeks bizarrely felt comforting. We’re following the same journey.

Although today, I have again been brought down to earth with this cancer journey, I’ve just read something that says I can’t give blood anymore. Now I did not know that was going to happen, and although I totally get it now I know it, I just never thought about it. It’s been a few years since I have gone to have a 30min lie down and a cup of tea and biscuits afterwards! I’ve had a flash back to my last lump removal a good few years ago now, and remember they said I couldn’t do it for a while, I also couldn’t when we returned from Sri Lanka, and then again when I was pregnant. During that time my dad got old and was told he couldn’t donate anymore (not just because of old age!). I remember how devastated he was about it but didn’t really pay it more attention than acknowledgement. And for no good reason I haven’t got round to going back to a session (non-good reasons constitute ‘too busy’, ‘wrong times’, ‘too tired’, ‘can’t be bothered’, and many other ridiculous excuses). I now wish I had don’t it every time I could. So if you can, please do. Don’t regret something so easy. When I look back now, I could have probably well done with a 30min nap followed by a hot cup of tea and biscuit in peace!!

I can’t wallow long on this issue though as I have a glitter infestation. Last night (bad mama bear had to do a last minute shop) a sparkly, glittery, ridiculous Halloween outfit was purchased for school and trick or treating. Which has meant that my house is covered from top to toe in glitter. But I have the happiest cub, with her twirly dress and horns. We’ve also bought enough sweets to feed the street (adults and kids) and it’s been a quiet trick or treat night so the cub and I are in for a real treat!!

Jumping forward – 08/11/18

I am back to normal. No random appointments, work is mental, and every day since the last golden letter and now has been a version of my old normality. There is no discernible difference now. Why should there be? I don’t ‘have’ cancer. I am cancer free. I only have to deal with chemo to dispel any pesky micro cells. So technically, why should life be different?

Normality has returned to the exterior of my life with such ease. I am working full time, mama bearing full time, housewiving full time and holding it together full time. I am holding it together like I always do, like I always have, and like I always will. My family need me, and my work (might) need me. But a part of my brain still takes me down rabbit holes now and again.

I’ve been reading more of the FB group I am in and devouring any post that relates to chemo, drugs and outcome. I am not a fan of going down a rabbit hole with google as you already know, but this feels like I’m researching without doing the actual research. I’m getting real ladies life experiences and that somehow feels better. (I also appreciate it’s a lot like being on trip adviser and wondering what the hell people have written about when you’ve had a good experience of a location that they hated!!). From what I can work out, chemo has some weird and wonderful side effects. Hair loss seems more prominent with some drugs regardless of cold capping, and everyone is different.

Maybe that’s why I feel so blasé about it at the moment. My ‘clear’ cancer day seems a million years ago. I can’t keep wallowing in my own self pity. I have a parents evening to contend with and a game face to plaster on. I am my cubs mama and I will show that teacher that we have it all together to support her.

10/11/18

Real life whoop – it is a rugby weekend, Autumn Internationals for those not in the know (and Union – apologies to Karens husband Dan for that!!). We’ve had a Saturday of chills, but a clingy cub. I swear she knows sometimes that I need a hug, but also doesn’t know how to just do one – so turns into a hugging monster! Super clingy and needy. And while I try and temper that with knowledge that five year olds aren’t equipped to have all the understanding of an adult, when I’m followed to the toilet for the tenth time that day my actual temper is tested!!

BUT! Tonight, I have had the most awe inspiring night. I noticed that a friend had shared a cancer walk that she might be interested in (apologies Jill – you started this!!). I couldn’t (didn’t want to) let her do that alone so I decided to pop a little note on my FB page about the fact that I had signed up to do a similar walk in the Lake District (with an awesome colleague from work). Within three hours fifteen people who I have worked with over the last few years, friends and family, had all declared their interest. I can’t actually describe how this makes me feel. But I know I am honoured. To have the best of people around me (some may be further away from me now than others, but they are still around me). This has been inspiring to me, and while I know that walking twenty-six miles may be brutal just four months after chemo, I know that these amazing people will keep me going, keep me strong and keep me sane. And to be honest that’s what they do without realising every day. Whether near or far, I am inspired by them all and they will continue to do that for me.

I still have this fight. I’ve got this.

The aftermath of the result…

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25/10/18

So cancer is out, I am back at work and the world keeps spinning. In all fairness, of course it does, that is the natural way of life. Something bad happens, we process it, we move on. At no point do I think that should be different. But living that different world is something I am not used too.

I woke up flat and can’t shake it. It doesn’t seem real somehow. I thought I’d be euphoric but I don’t really feel anything. I want to get the chemo started, but that’s another wait I’m sure (probably two weeks!!), I keep thinking that once the chemo is over I’ll feel relief, but now I know that I’ll have a decision to make following genetics results, a decision either way. And then radiotherapy. So it won’t be finished then even.

And then other thoughts creep in. Cancer has crept into my body once. It could easily happen again. Even in the most innocuous moments, that funny little headspace keeps opening up and flip me into the dark demon space. The cub asks for a hug ‘on the good booby’ and I am reminded all over again that she is also affected by this. She asks whether the scar still hurts (she sees this because I am also the mama bear who has zero private space ever!) and gets upset that the scar won’t disappear. My life is now irreversibly defined by this goddamn cancer.

Today, however, was the longest day I managed to spend at work since my operation which was defining but ruining. An 8 – 5 and it was tiring as, but I also felt real again. I knocked doors out of windows and it was a good distraction, this was me at my best and full on function.

26/10/18

So after a full day yesterday, I returned to my usual sporadic presence at work and buggered off on a half day so the man cub and I could get our flu jabs. Another side product of cancer that the whole family should be flu jabbed to the hilt. I’ve never been one to research / avoid vaccinations (don’t judge me) as I’ve always been a believer in common good, but for once I did take a second to think about whether this was another reason to down modern medicine and join the masses who believe in earthly healing (and I probably offend at this point but I am a uneducated cretin in that regard). Do you know what – who knows what really works, because all of the millions that goes into cancer research, aids recovery, drug rehabilitation, stroke recovery, dementia, Parkinsons (the list goes on); do we know if it is working up towards a cure? Cynical minds (and drunken minds) have always discussed a monopoly market. But do we really know? To be honest my mind is to full to deal with processing more than it can at the moment – I’ll save that thought for another day.

As we sit in the doctors surgery as a family of three, the cub is bouncing about like a lunatic – it’s a public space and she has a sitting audience which panders to a five year olds needs like no other. Luckily, the man cub gets called first and much as I try to keep the cub with me waiting, she wants to know ‘whats going on’ so wanders off with him. Literally twenty seconds later (and a full waiting room of old folk) I get a shout out ‘Kirsty, you can take your top off now and get a pin’ from a very excited five year olds voice. I wanted to sink into the chair and pretend I didn’t know what was going on, but the five year old cub had other idea. ‘Mama, MAMA’, was then shouted very loudly. As if it wasn’t enough that she was yelling, I was sat in the furthest corner of the waiting room and had to do quite a walk of shame to get to the yelling cub and usher her up the corridor to the nurses room. I mean I love her, but she can take me down in a heartbeat!

27/10/18

Woohoo – PJ day! And I didn’t even suggest it. Cub rocks in to wake us up (as is standard Saturday morning crack!) and immediately suggest that today is a PJ day and she is off to get into her super warm, cosy, fluffy PJ’s! At this point, who am I to argue! I’m all over a PJ day!! I love the normality that a cub brings to proceedings. By 4pm (as my OCD broke me and I tried to get control of the household cleanliness routine!) the hoover appeared and I got a helping hand with that too (I say helping, I mean hindering, I mean I re-hoovered – she will never know!!).

My days are made up of memories – random little chats (mama, are you older than me – erm yes!), belly aching laughs, hiccups, bruises (not caused by us! Bouncing off god knows what!). My sensible head says I’ll be here for all of those  future memories. That demon head tells me I won’t.

My message to my cub is to live every day as if it was your first. Drink in every new experience, act like a newborn experiencing the first drink, the first smell, the first kiss, the first hug. The last seems too final, a way out. And we aren’t looking for a way out. We need to find a way in – to peoples hearts, minds and souls. We need to define a way to break cancer – and anyone can join!

Is cancer out?

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Walking in a daze from the Genetics appointment to head to the hospital, I thought my head was going to explode. If I hadn’t been in turmoil about getting the result, I was now! Thoughts spun through about implications of all of this, whether my cub would have to endure difficult conversations and actions to take when she was eighteen, whether wider family would be affected and how it would affect them. I nearly turned back round at one point, walked back into the hospital, saw the lady and told her to ‘sod it’ I don’t want to know. As we both got in the car, we were silent. It was the most bizarre journey to get the next lot of news. We had nothing to say but dwell in our own thoughts and potential outcomes.

Once we had parked up we made our way in to an empty waiting room, and waiting Pauline. It was the quietest I have ever seen the waiting room, and after Pauline had checked that my lovely consultant was free she tool me through to check the wound initially. Dressing removed and that was all fine, but a blip of a moment when she said had I noticed the pea lump where the original biopsy had been taken. I had, but was naively ignoring it as just part of the healing process. When she called the consultant into the room, while there was slight panic in me, I was also assessing whether he had good or bad news. I mean, its difficult to tell when someone is poking about at you boob level whether they have good or bad news I discovered!

After declarations that it seemed to be scar tissue, and would be fine (no surgery needed – I mean if there had been my head would have exploded!) I was lead through to the clinical office. I have never been praying so hard in my life and I’ve not thought that praying would work since I was thirteen years old and worked out that church was a bit hypocritical.

‘There were clear margins this time’ were the next words I heard. I should have leapt off the chair and hugged him. I should have felt ecstatic. I should have been grinning from ear to ear. I should have done a lot of things. But I sat, as per usual, nodding. So the Cancer is out. That lump is gone. There was a recap of the previous surgery around the nodes – two out of seven cancerous. Less than three is acceptable. Still bugs me a little bit that the line has been drawn at three. And all I continued to think was I should be feeling happier than I was. This was the news I had waited just over three months for. This was absolutely the best result I could have hoped for. Cancer was out of my body. It was gone. I was clear. Why wasn’t I feeling wonderful.

Well, maybe the next ten minutes shadowed it a bit. A discussion about chemo, there would be six lots, every three weeks. Starting likely four to six weeks after the operation so the wound could heal. I would get a letter through the post to meet the Oncologist at a closer hospital to home. I would return to see Pauline and my lovely consultant in February to talk about next steps as I would have Genetic results by then. I could talk about those results and depending on the news I can consider mastectomy or just get them sorted out to match! I had a little internal giggle again. There was a lot of time mentioned, and head mathematics clearly worked out that Christmas this year is going to be a little bit f**ked. Also likely to be finishing chemo at my big Birthday in March. Oh, then I’d forgotten, there was radiotherapy. And to be honest I haven’t got a bloody clue what that actually entails. At least I kind of know that chemo is injected full of some fancy drugs that ruin your immune system while attacking the bad cells. Radiotherapy – not a clue. I’m going to live in blissful ignorance for a while yet.

My poor head (and the man cubs) is battered by the time we leave the hospital to head home. And we have to explain it all to the parentals who are looking after the cub. I honestly think we need a dictaphone to these conversations as we never remember half of it, and I always get asked questions that I don’t have the answers too. ‘When will you start chemo?’ – I don’t know.  ‘So cancer won’t come back?’ – I don’t know. ‘What happens if you do have BRAC gene?’ – I don’t know (might piss off a lot of people?). And on it went. Until I had closed down completely.

But at the end of the day, Cancer was gone. Today was the end of one long journey, and the start of the new journey. Cancer may be out of my body, but this journey has utterly changed me already and I’m sure it will continue to do so for some time.

Genetics Analysis… phew… brutal!

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24/10/18

Well today is the day, second time round. Has my lovely soft voiced, limp handshake consultant got this damn cancer out of my body. That’s going to have to wait a while, as I need to go to work! It is school half term, so I escape in early light with the car and leave the cub and her daddy sleeping like angels. All the while I am silently bricking it. I had no meetings / commitments to be going in for other than the fact that I had taken the last two days off as leave to see my best friend and her family; and that I work full time, which means I actually need to do some work! I had totally loved my two days with the bestie though, we had spent time together, laughed, joked and were happy – watching our cubs enjoying life as they always do and none the wiser of what the next stage may hold. And that had been fine.

The drive to work was the most brutal I have ever felt in terms of turmoil of emotions. I knew by the end of the day I would have a result. I just didn’t know how I would cope with either. Don’t get me wrong, cancer being out would be the preferred result; but would I feel better. I didn’t know yet.

What I kept dismissing was the little Genetics appointment in between. I had no pre-conceived ideas on that appointment at all. After bailing work early I picked the man cub up and passed over actual cub responsibilities to her Nannan and Daddit (affectionate names for the parentals).

We arrived at our little Community Hospital and before long we were in a small cupboard (which appeared to constitute an adequate environment to discuss serious Cancer conversations!), with a lady who decided that her first question would be ‘do you know why you’re here’. At that point I was caught on the back foot. Erm, I was surely there because I had Cancer, and I was under 40 and I had no family history. None. Which still confuses me. So I said just that!

Thereafter, the lady launched into a twenty minute spiel, with no pause for breath – I didn’t even get a moment to do my usual nod and ‘mmm’. There was a barrage of words, half that I didn’t understand, Angelina Jolie was mentioned more than three times, seventy percentage points were raised in varying degrees of severity against certain scenarios. She mentioned I was triple negative a couple of times which I need to go and look at. They want to look for the BRAC 1 and 2 gene and another M?? Gene. Ovarian Cancer and full removal of all associated body parts was mentioned. There was a 50% chance of something that would lead to that. And then the absolute punch paragraph in her ending speech was that I might upset relatives if I did have a dodgy gene as my sister would need to be checked, my cub could opt to get checked at 18, the parentals could be checked to see where it came from so then it could spread to wider cousins. And I could cause a lot of upset. Because all of those folk who could possibly be affected could end up making a decision about a full mastectomy.

Final question – did I really want to get checked?

By this point my head was exploding again. I was staring at Ryan willing him to say just anything, but he looked equally as shell shocked as I did. I mean, what should I say, is there a right or wrong way to deal with this. As we paused for breath, the charming lady (I mean I hadn’t even caught her profession!) was talking again. I could wait until all treatment was done, it was going to take at least three months to get the results anyway, I could wait another ten years, the offer was on the table and wouldn’t be retracted, legislation could change in testing and even if it did they couldn’t retract it as they’d offered it now. These head explosions were off again!

In all honesty, by this point it felt like she was trying to convince me NOT to go through with it. She mentioned again about upsetting folk. She mentioned that the cub would have to live with whatever decision I made. But surely she had a right to know what she was living with.

Honestly, this appointment in my journey was the worst by far. I was so confused with what was required of me, but what I wanted to require. I would quite like to know whether I have a gene, or it is just my lifestyle that might have caused this cancer. If it is the former, my cub needs to know this, if it is the latter, then my cub also needs to know that.

After finally agreeing (I mean, I just said take the bloody blood sample) to be tested, I had the actual blood sample taken and we were done. Walking out of the cupboard, in a daze, done. I’ve never been so confused in my life. I have no idea what has just happened. But my head now needs to process whether I have got cancer out of my body. I can’t dwell on this. But I am damn sure I will return to this craziness and try and deal with it in the future.

I’ve still got this.

The insanity (and emotions) of waiting AGAIN!

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11/10/18

Wound check booked in for the 12/10. And follow up booked for 24/10 (two weeks – again. 2 weeks. Just the natural timescale of things in this bloody cancer journey).

How is it possible that two small weeks, 14 small days, can break every faucet of your sanity and have you wishing time away more than usual. Its just so hard. And I am certainly more than bored with this now. I am also feeling significantly better. I haven’t taken any painkillers today which would have been unheard of last time. What a difference not having those pesky lymph nodes out.

I feel quite flat today still. I still can’t quite believe it might be out. I’ve put a good face on it, but I’ve no where to turn. The FB group I joined is a baffling arena. A lot of words I don’t understand and if I Googled I probably would, but that rabbit hole isn’t worth exploring. Someone did say that they were at the end of their treatment, and that was when emotions hit. When will that be me? Although I did have a chuckle with someone when they said their hair was growing back brown and curly after being blonde and straight. I told her I hoped to go the other way!

Fuelled by a bit  (make that quite a bit!) of dutch courage, tonight is the night I have shared my FB blog page onto my personal page, with my FB friends (which includes real friends!). It was the first time that I felt like I could share the word and be strong enough to deal with the fall out. It felt like I could own this, even though I was feeling a bit down. I needed some positivity and I wanted to share the message. It was also quite cathartic.

12/10/18

Received the nicest gift from a beautiful soul – a book entitled ‘F*** you Cancer’ and a wee acorn bracelet. I’m going to use the picture on an older related post which I am about to release, as it’s appropriate, but the absolute sentiment nearly broke me. My breathing started getting out of control again. And I had dark thoughts early doors about those damn lymph nodes. Why does your mind do that to you? Sneak negative thoughts when you want to feel a bit happier.

I had the wound check today and had to take my mother. She was not invited in to meet the lovely Pauline though! All positive at the check, and still another possible empty promise that I might get results back quicker (this is me remember, I will not hold my breath!). I still have cording which I need to keep doing exercises for, and I am still numb under my armpit. Its still the weirdest feeling putting deodorant on but apart from that I don’t even notice it.

13/10/18

I am off to a wedding. And I am really excited, but also couldn’t feel less attractive or more tired. The child got a last minute invite which I am grateful for as she will keep me distracted, and I cannot wait to see the dress. As work colleagues we have lived the planning of this wedding over the last few weeks, and I’m sure this is dress number 7! Could be more! The lead up to going to the wedding was also hilarious as the cub asked me why her daddy hadn’t married me. Then asked him why! And said that if he loved me he should and she would like a wedding! She might break him yet!!

P.S The dress was gorgeous, I mean absolutely stunning. Perfect night for a perfect couple.

17/10/18

I’m back at work. I feel better, and it is constantly on the back of my mind that I am using up sickness absence that I may need with chemo. Its all fair and well the hospital saying ‘take months off’ but it doesn’t pay the bills. Plus I am absolutely demented and need the distraction. Work is so busy at this time of year and I thrive on that. I wouldn’t have it any other way. I spend my days dealing with the most bizarre situations that I would need another blog to deal with! But the social interaction and daily chuckles keep me from sinking into a hole of self doubt, a wallowing place where I doubt everything I feel and could get close to Googling the life out of my symptoms. I have avoided that so far and I am determined to keep doing so! (I so avoid it, that when pregnant I was no where near prepared for the actual labour bit, when they check how far along you are. Any other mama bear knows what I mean, but I still remain in complete shock about that situation!).

20/10/18

I’m starting to feel like a fraud. I don’t have a visible disability. I don’t feel unwell (now). I am functioning physically as I always have done. I am mentally a bit battered, but for all sense and purpose nothing has changed. Which means when I see friends, I struggle to articulate how I feel. The answer to everything is ‘I’m fine’, but that isn’t really the case. I am changed. I have changed. I have a scar that will remind me always that cancer was taken out of my body. And I have a numb armpit! That wasn’t something I ever expected at the start of this journey!! And at some point I will need to tap into counselling. Something I never thought I would do, but something I now know I will need. It does feel like the psychological impact of cancer is underestimated in its entirety. I don’t know if I would get it if I asked for it. I may well. But it hasn’t been offered (apart from a nod to it in case we wanted to consider fertility issues at the start and that I might get it when chemo starts). At this moment we are dealing with the ‘cancer’. Which is good and I am happy with that. But reading the FB group page I joined, it seems common that second surgery is a thing. Which is devastating for all concerned.

23/10/18

The night before the consultant appointment. It doesn’t really have the same ring as the Night before Christmas does it?!! I also have the genetics appointment tomorrow so it’s going to be a busy day of information overload! I feel mad at Cancer tonight. Annoyed that I am living this damn journey and some self pity is creeping in, which isn’t something I need. Even if the Cancer is all gone tomorrow, I still have to go through chemo. Which I still can’t get my head round that this is when I will ‘look’ ill, but actually be Cancer free. What do I say to the cub then? I am fine – just dealing with a gruelling regime to make sure it doesn’t ever come back. Again, I don’t fully understand it

But I’ve got this. Always!

The conversation piece!

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P.S. Up front! Which is the wrong way round but after much deliberation I have decided to put this main script up front. Purely because I do not want to cause offence, but need to clarify why I have had a laugh with this post.

All of the below makes me sound ungrateful. A complete b**ch towards those people that actually ask the question. And I probably need to put some context to some of it. Cancer is a funny one, people have not known what to ask and I can see them struggle with it. And in all honesty, I would probably have fallen into at least one or two categories below before I became ‘that person with cancer’. It’s the fact that my brain isn’t in that sane place that everyone usually is (if you ever could have said I was sane!).

Where usually you do your usual pass in a corridor or on the stairs, someone says ”Morning, you alright’ and to be fair you could have either had the best morning in the world, or a raging fight with everyone in your life and your response will still be typically British, ‘yeah, fine, how are you?’. That’s just what we do isn’t it, but as I have found, cancer changes everything. I never thought it could, but by god it does. It delves into every part of you and my head is in a strange place where jealousy is becoming like the green eyed monster.

I’ve never thought jealousy was a good trait, I still don’t. And lets be fair, we all have moments (when someone has splashed the cash you don’t have and got the dress/shoes/bag/item that you really wanted), but its usually dashing. However, it is now a little more permanent. I am jealous of everyone being carefree, cancer free, not worrying, continuing life. And my life is permanently changed now. This leads to a much bigger conversation but for the moment, I’ll just leave these conversation snapshots out there as a reminder – for me. People do care. They just do it in their own way. And in all honesty I wouldn’t want it any other way. If anything it helps my inner demon release itself in inventive ways! Which is quite fun!! (as mention, I may not be sane!).

For those who do ask – I’ve still got this. And I’m ok! (Ask me – and I will reply!!)

 

Betty: how are you feeling?

Me: Great, thanks.

Inner me: How the f**k do you think I’m feeling?!

 

Mabel: how are you holding up?

Me: Just fine thanks.

Inner me: Holding up what – the broken left tit? With the usual boulder slingers thanks!

 

Gwen: You’re looking well.

Me: Thanks

Inner me: Should I look like something else? Should I be crying constantly? Or actually, should I just take that as a random compliment that I look better than I usually do?

 

Dorothy: Oh you know, my husbands sisters husbands aunty had it. And she was fine.

Me: Ah, good to hear. How is she now?

Dorothy: Ah, she died a few years later with secondary cancer.

Me: Ah, sorry to her that.

Inner me: WTAF, do you think that is helpful to me in any way, shape or form. NO. No it is not.

 

Bertha: Ah, are you ok?

Me: Yeah. Fine thanks.

Bertha: Are you sure?

Me: Yep, all good.

Bertha: But are you really sure?

Me: Yep (as I leave).

Inner me: Leave me the f**k alone Bertha, I answered the first time, and the second. The third was a joke. Just drop it. Unless you’re a first grade counsellor you are the last person I am talking too.

 

Johnny: Hows the bairn doing?

Me: Yeah, shes fine thanks.

Johnny: You sure?

Inner me: Well I’m not bloody sure now thanks Johnny, I was 2mins ago, but not now. Cheers!

 

Miles: You know they’ve made great inroads into recovery for cancer patients now?

Me: Is that right?

Inner self: What do you read in your spare time Miles, f**king medical journals. Or The Sun? Stop trying to be a clever bastard and just ask Bettys question!

 

Jenny: How are you doing psychologically?

Me: OK

Jenny: I know it can be hard on you.

Inner self: do you Jenny, you haven’t had cancer (I do know that before you ask), so how the actual s**t do you know it can be hard on you. I am psychologically thinking about a murder and that might not be good for me at this moment of time.

 

Eva: how you doing (with a raised eyebrow)

Me: Just great thank you

Inner me: Would it help you if I was a crying, snivelling wreck? Would you then believe I was ill?

 

Jane: You know, you might be one of the lucky ones where your hair doesn’t fall out.

Me: Thanks Jane.

Inner me: Jeez Jane, you’re a real treasure to be around. Full of joy. I am already b****rding unlucky to have cancer, you telling me I might be a lucky one not to lose my hair isn’t f**king helpful!

 

Followed by

Jane: so when will you actually start losing your hair?

Inner me: that’s it Jane, you are going the same route as Jenny and I am having murderous thoughts. Drop it!

 

Ben: I didn’t like to ask, but, you know, I heard.

Me: Yeah, I’m ok.

Ben: I’m sure you are.

Inner me: One of the most sincere conversations I have ever had. (N.B. He knows who he is!)

 

P.P.S. All of these questions have been asked, responded too and inner thoughts have been the truthful version. All names have been changed to protect identities (I mean if I worked with Betty, Mabel, Gwen, Dorothy and Bertha I’d think I was working in a 60’s admin office for Miles!!). But no longstanding offence has ever been taken as per original P.S.

Second operation – GET IT OUT PLEASE!

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09/10/18

I have had the worst bloody nights sleep. So tired. And it is my own Mama Bears birthday and her cub is off to hospital to get cancer removed for the second time. Happy Birthday Mam!!

My poor dad comes to pick me up in darkness to get me to the hospital and I leave my cub sleeping. Oblivious to the fact her mama is still fighting for her. The car conversation was usual between my dad and I – quiet! I adore my dad but he well knows I am not a morning person. (One of my first jobs entailed me working in the same place as him, and we used to walk for the bus in silence, and some days sat in different locations once we got on it!!) By the time he dropped me off (I had to give him directions again as he has the memory of a sieve these days!) we had started some random football chat – mainly so I could make him feel better!!

Now this time, I didn’t get the nurse who had annoyed me calling me through – this one was equivalent of me in my morning silence. She did what she needed to do. Checked me in. Front and back facing gowns were on and I was sat waiting. And then it started. The old dears (male to the right, female straight facing) started up a chat as their curtains were still open. And the chat went on. And on. And on. They did a quick preview of whole life stories. And then delved into the stories that led them to be sat in the hospital that day. By the time my consultant came round I’ve never been so grateful to be told I was first up for surgery! Although the distraction was quite hysterical, I wasn’t quite in the mood. They were a lovely pair though! I’m just not that bloody sociable! Especially at 7am!!

I was down for surgery before 9am, and messaging Ryan by 11am to say I was out and eating biscuits. It still makes me chuckle that biscuits must be cheaper than toast now and saving the NHS fortunes! I was woken up this time in a big recovery room (I cried again – for no reason!) and then  got wheeled on the bed back to the surgery rooms. That was an experience lying flat on a bed being wheeled at speed down the corridors! But I could already tell the difference in that op to the one before. I didn’t feel quite as fragile, I wasn’t in as much pain. But I was translucent. I went home and had another nana nap.

Then realised I had forgotten to get a sick note. Spoke to Pauline and she said to go to the doctors the next day, but also it would be a good idea to get the flu jabs for all of us. Just another reminder that something isn’t right with my body and everyone else needs to get in line with that. I am booked in for Friday to get the wound checked, and next consultant appointment would be on 24 October. Another two weeks to wait. The natural course of time in this bloody journey – two weeks. I was told it was possible that as it was small I may get results early. But hey, this is me we’re talking about! I won’t hold my breath. I was pale as can be by the time I fell into bed.

10/10/18

I had a bad sleep last night. I woke up, decided I wasn’t ready to get up and went back to sleep. But had the worst disjointed sleep, dreaming bizarre thoughts (not so vivid this time that I can remember them like last!), but I woke up screaming crying again. I pulled it together quickly before I collapsed. I need to focus on the getting better and my cub is home tonight. I can’t be a snivelling wreck. I just don’t know how to deal with it yet.

I also don’t know how I feel today. I don’t know why I don’t feel different. I don’t know that I can believe the cancer is out. I thought I might be relieved. I don’t. I am a bit flat. Its funny that life continues around you. People were on the ball the first time checking in, but in reality its boring for them to remember the second time. Why should they? Their lives are continuing and I don’t hold that against them. I just have envy that I was living that naïve life not so long ago and now I am changed. Forever different in that this secret killer was in my body and still could be again. Its funny what a hidden, unseen horror can do in the depths of soul.

I decide to do something relatively positive in accepting the situation I am in and join a secret FB group for those poor buggers on the same journey as I am. They seem really nice, as I got a warm welcome. But I haven’t made it as far as reading through any posts yet. That seems too far just yet. But I made the first step. And for me that was a massive achievement.

I’ve still got this. I am fighting and am strong.

The waiting game continues…

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27/09/18

Well I might have woken up with a wee hangover and headed into work with what felt like the weight of the world on my shoulders. Drinking and dark thoughts are not a good idea, even less so the next morning with a headache and dark thoughts. I was in a stinking mood. My poor work colleagues didn’t ask any tricky questions thankfully and allowed me to pull myself together before I dropped the news that the cancer was still there. I needed another operation and was still in amongst this crazy journey of being a cancer patient.

After making it to 2pm, I finally bailed it (thankfully my employer is awesome!) and went home. I crawled into bed for an afternoon nap, still feeling so annoyed and frustrated. This was definitely the worst I had felt in this whole sorry journey so far. I didn’t even feel this bad after the initial diagnosis, but I think the fact that cancer is still part of my body is preying on my mind the longer it is in there. Also found out today that a friend has skin cancer. God, that bloody word. I hate it.

30/09/18

Last night was a funny one – I went to a friends birthday gathering and it was one of those where everyone asks ‘how are you’ with a raised eyebrow and a look. I mean, my answer was ‘I’m fine’. But what else do you say in that situation – you can’t start blubbing and breaking down. But that’s the issue – I don’t ‘look’ like a cancer patient. Which is bizarre isn’t it, you don’t look like a cancer patient when the actual cancer is in your body. You only start looking like one when you have chemo, which in most cases is after cancer has been removed from your body (I mean I say most cases, I am not an expert on this, that is just me; some people do have chemo first before surgery to shrink the cancer tumour but they just tried to get mine out – and when I say tried, they didn’t try hard enough!!). I do wonder whether people would deal with it better if I was a mess?

01/10/18

It doesn’t feel like it was just last week that I got told I’m back in for surgery and that cancer is still invading my body and soul. The cording in my armpit is killing me still (but I am a bit lax with the exercises as keep forgetting to do them!!). The bloody waiting game is an absolute pain, but thankfully as I work with University students it is FRESHERS!! Our busiest week of the calendar year and I am back to buzzing about it. It is also an amazing distraction for me as I am not a patient mama bear. Although the workload is brutal for the week (and I forget a few times that I can’t lift and carry as was witnessed by a few folk as I chucked a chair across the room when the pain in my arm reminded me), I am back in my happy, normal, me place. I am back to being the usual  stubborn pain in the backside that my lovely team and colleagues have to deal with. I’m a little bit shouty again, which is what they know and expect!

06/10/18

Hen Do time! After a brutal week, I made the decision to go to a colleague and friends hen do. It also got me out of another childs party but meant I had to do the next day! I had an amazing time, and as I didn’t know the majority of company it was refreshing not being eyed up with pity. I felt a lot more like me again. I can’t say that I was my freshest self the next day at the first party I have had to do this year, but it felt ok finally taking the cub to a party where she loves every minute of it. I worked hard on my crazy anxiety and sat with other mams, making small talk, supping a coffee and at no point saying anything about the internal hell that we as a family were living. Its not a conversation opener that’s for sure!

08/10/18

After a long and tiring Freshers week, I am ready for this surgery. I need it. Tomorrow I need to go back to sleep in a hospital gown and pray (hmmm) that my lovely surgeon gets the last bit of this cancer out. I need it out of my body now. My mind is all over the place, every pain in my body starts my brain going into overload. Has the cancer spread. Is it seeping into my body. My sane mind knows this isn’t a thing (I haven’t started any googling yet so that’s still a good sign!). The cancer cloud still hangs over though and it is relentless in its mission to break you.

But I’ve still got this. I’m still fighting and I’m still waiting!!

F**ty, F**k, F**k, F**K

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26/09/18

Today my world fell apart. This time much more than it did before at initial diagnosis of cancer. Which is weird right? But honestly, I took this news internally worse than I did the first time.

I need to rewind a little bit. I was in to see the consultant again today. I was already in a bit of a weird mood after my dark thoughts the last few days, but Ryan and I were bantering again in the waiting room. I mean there is only so many times we can share and read the ‘Caravanning Club’ magazine!!! We literally at this point had read / scanned every twenty-hand magazine in there!! (P.S. I should buy them some mags or pass on the cubs RSPB ones to give some new life to the place!!).

By the time we got called I was chilled. It was fine as I was about to get the next plan. Two weeks post op and I was first seen by our lovely Pauline. She checked the wound and removed the dressing, ugh (still a lower armpit wax and it ripped lovely!). It’s not a bad sight but its still a scar right under my armpit. Which will be interesting trying to ever wear a summer dress or a bikini. (To be honest this is also pretty slim option for me – we go camping in the British Isles – there is rarely any bikini wearing! And a summer dress, well its knocking on winter so everything is going to be covered lovely, so what I am worried about at this point is beyond me!). I also spoke to her about the weird tendons that I believed were popping out of my armpit. No, no, they had a medical term. Cording. That happens to 5% of folk (of course that would be me), and is a tightening of the lymphatic fluid solidifies (by this point I was in a blur so maybe that isn’t the right wording) and causes the skin to cord. I can do exercises but possibly that won’t help and I will have to live with. Oh joy! Lets start weird arm exercises. The numbness I was still experiencing was also discussed – that could very well be permanent – I’m telling you, it is the most bizarre feeling in the world!

Then we trotted out of the medical room into the consultant room –  I mean they are both concrete in their humanity. They have no windows, more doors than a room should have and reek of clinical oppression.

So my consultant started talking. With his beautifully low toned voice he caresses you into a calm space. Then he delivered the blow. The news. The real facts of bloody cancer. They had taken seven lymph nodes from my armpit (no wonder I was in bloody agony and appreciate I am numb now). From those seven lymph nodes two were cancerous. My mind was blown at that point – at no point when they did previous tests did they say this had spread to lymph nodes. In fact I’m sure when I had the crazy mammogram day they had taken a sample and it was clear.  So think sparklers going off in my head at this moment.

Then the Catherine Wheel went off – ‘so Kirsty, one side out of six of the breast lump wasn’t clear of cancer, so we need to re-operate’.

BOOM. My head exploded. My thoughts exploded. My world exploded. And I still sat there, just nodding nicely at the nice consultant, the lovely Pauline, some random trainee, the man cub who was clutching my knee by this point. AND I JUST NODDED. As if we were discussing a lovely situation, a holiday perhaps, a nice bit of news. I kept nodding even as the paperwork was filled in again for the next operation. As I was asked if I consented and understood. As the date was set for 9 October, another two weeks later. I signed paperwork, I wrote down the date. And the whole time I didn’t say a word, just kept nodding.

Further news from the consultant – that he had moved ‘things” about in the boob so they weren’t as lopsided (I mean they already were so I don’t know why you tried – but do I say thank you? And also – WTF did he move?). I was so conflicted by this point it was ridiculous. I just wanted this current situation to end.

The man cub and I walked out of the room, did what we do best, and bantered. Could only happen to us, we said. Of course it wasn’t all out, we said. We laughed as we exited the corridor of doom and into the waiting room which was full for the afternoon clinic. They must have thought we had good news. They couldn’t be further from the truth.

Then off we went to my parentals – which is exactly what both of us did not need or want. But exactly what they needed. As a child to an parent, this is the worst conversation you want to have. As a parent, I do never want to hear those words out of my child’s mouth and kind of appreciate that the parentals are freaking the absolute shit out! We chatted with the usual outcome – I am waiting for the next stage, I know nothing, I am living it, I am sorry you are living it. And then we had to pick the cub up. Pretend we were both ok. Play, act, dance, read – the routines stay the same even though the world is imploding. Or is that exploding. I don’t even know anymore.

The alcoholic drinks started pouring at 7pm, and we tried to put it to one side and pretend that this was ok. We were ok. But this was the first time I really knew it wasn’t. I couldn’t ignore this anymore. There was an odd tear, but I still kept the floodgates closed. I know that if I open them they’ll erupt, and I don’t know how I’ll close them again. I know that I’ll end up down a rabbit hole of irrational thoughts and fears that I can’t realistically do anything about. So I maintain steel. It might not be the best way, it probably isn’t, but its my way. And for the moment its what keeps me getting out of bed in the morning.

I still have this. It is a blip in the road. But I’ve still got it.

Mixing up all the emotions!

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21/09/18

Genetics sent me a letter. And requested an appointment. WTAF. I was utterly convinced that it would go nowhere. I’ve read that 90% of breast cancer isn’t hereditary. So I have no idea what I would possibly need to see them for. Although I don’t doubt they are clever folk, I really don’t know what I am going to say to them. I then rang the lovely folk upwards of twenty times to make the ‘actual’ appointment and bounced between an answer machine and ringing out. That wasn’t annoying much!

22/09/18

So I’m missing another childs party. It was a long day and I did a bit of wallowing today. Left alone in the house, after a second week off work. I had no cleaning, no ironing, no hoovering. So I sat with cabin fever. I am desperate to start the next phase of this journey and be done with. Come on time and waiting, bring it on!

24/09/18

I went back to work today and I was tired by 11am. My arm was bloody killing as well still and I was popping codeine like they were sweets (only prescription level!). I was absolutely well in my whole self (apart from the nagging pain under my armpit, down the back of my arm, the two tendons that looked like they were popping out of my armpit were definitely odd and my boob was sore).

Genetics ring back midday finally and offer me an appointment locally on 24/10. Really?! A whole month later. There is no urgency in this whole journey that’s for sure! I asked for one at their main centre, they offered the day after. I took the one local!! (More waiting).

I made it through work until 2pm, went on a mission for the bus, got halfway and realised I had no house keys! What a bloody rookie error. I was furious! I did the lived experience of handing the keys I locked the house with to man cub as the driver as they usually live in the car, blatantly forgetting that I didn’t have my own in my bag. Foresight is a wonderful invention and if someone could make it kick in more than twenty minutes before you actually need it, it would be worth a bloody fortune. Frantic message to a friend and neighbour and after a wander round the town centre and spending money on clothes to make me happy (!), I finally got a lift to said neighbours, and then waited until the man and cub came home. I was tired again!

 

I was searching a few blogs tonight. And didn’t immediately feel bad reading them. I always thought I would. I still haven’t googled anything. I never have (ask anyone who was around me during pregnancy and they will tell you I valiantly avoided any ‘training’ about what would happen! It took me 18 hours to realise I was having contractions!!). The problem with reading blogs though is that they aren’t at the same stage as you. In some instances I don’t even know what the terminology is referring too. There seems to be a lot of chemo terminology and I know I’m going to end up down a google warren sooner or later as clever consultants are notoriously bad at the human touch!

 

25/09//18

Bored, bored, bored with the pain now. It is somewhat annoying, shooting in an area that in the normal days of life you never feel! Like seriously, have a think about the last time you appreciated you could feel anything in your armpit and down the back of your arm. You never do. Shaving an area that has no feeling is also the weirdest feeling.

 

I’ve got the consultant tomorrow and dark thoughts are still there and growing. I don’t want to be beaten by this. My baby needs me, the man cub needs me (I think!), but I NEED THEM. My world is too short – I want every day to last 12 hours longer. I read today that 84% of women with breast cancer are not told about the possibility of developing long term anxiety and depression by healthcare professionals (Breast Cancer Care) and it struck a chord. I got it. I actually really got it. This damn cancer does make you doubt your place on earth. Counsellors have only been mentioned twice in this whole journey, firstly in case I wanted to have more kids (I hadn’t and don’t – but by heck it gets you thinking when you know you might not be able to), and secondly after surgery when chemo had started (probably for the body image, but I am guessing). It all felt a bit blasé, after the fact, I might appear to be the strongest, feistiest mama bear, and I probably would clam up in a room with a stranger, but I do think there’s a case for something further here. Its something I need to come back to when my head is straighter.

 

Consultant appointment tomorrow. I may have had a couple of drinks while I scribbled my heady thoughts and I am dreading it. It feels like it will be ‘move forward or stay put’. And now my head is in a negative place (damn cancer and damn drink!). Aaaagh!!

 

I still got this though. Game face ready for work again tomorrow. I am on it, I am ready and I am still fighting this.

Post op – the Cancer is out….

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So its out. The Cancer is out. And I am tired. More tired than I felt having a new born five years ago. Absolutely dog tired.

12/09/18

I wake up absolutely exhausted and I slept fairly well (I mean as well as you can do with a bra still on and a pain riding down my arm rendering it numb. I decided in my wisdom that a walk on our lovely fells would do me a treat. Well, that was a mistake! Was probably too much as the next day I slept until 11.30am and woke up just as exhausted again. This was not what I expected at all. I did get a lot of flowers though from my thoughtful friends, they made me smile – which girl doesn’t like getting flowers!

The child returned home and I was overjoyed. She has no idea what is going on apart from that my left booby is broken. I think that adequately describes it for her! She keeps asking to be reminded which side she can hug me on and every time it annoys me that this damn cancer is making life a little bit more difficult. I mean, in the grand scheme of things its not that big a deal, but why should my five year old be affected like this. Ugh.

14/09/18

I return to hospital for a wound check with the lovely Pauline. She removes the huge dressing (which was like a lovely painful wax!) and checked it out, but I didn’t really feel like looking at it. I’m not quite prepared for whether it looks a bit weird. But if I’m honest, regardless of the scar, the rest of the boob looks pretty much the same. It doesn’t feel smaller than it was. I mean, it is still smaller than the other one but it doesn’t look different in the main. Although now, I think my relationship with them has totally changed. For anyone that is a mother, I think you change your concept when you’ve breastfed and to be honest it took me a long time to love them after their practicality then. I wonder how long it will take me now to accept them again?

Pauline examined me and although I have a wonderful amount of bruising and numbness in my armpit and down the back of my arm (think the feeling of a trapped nerve constantly) and some water retention, I was declared fairly well! We talked about chemo, which now sounds a lot more scary and an absolute ball ache. Hair loss was mentioned (I am determined that I am coming back blonde and straight!), however there is an ice thing (need to look into that probably) that can help prevent the hair loss. Maybe the dentist had been right when she mentioned that!

Then I was blindsided. We talked about the histology that was going on, and the mention of clear tissue needing to be found round the cancer removed (the analogy was that of a peach stone too close to the surface. If there wasn’t clear peach round the outside of the stone it was bad). In reality this equated to going back under the knife. Ryan and I walked out of there a little bit dazed. We hadn’t thought about that. It wasn’t a thing in my head at all and I didn’t much fancy the idea of another operation before getting started with chemo. I also didn’t want to think about cancer still being in my body. So I parked that thought to deal with at another space and time.  I had a waiting game to deal with and tiredness to knock on the head until 26/09. It was going to be a long week and a half. The bloody ‘long game’ is what cancer treatment should be called. I can only guess if you have more aggressive cancer then it might go quicker. Maybe that is reassuring.

20/09/18

Well, 2am this morning and I nearly broke the floodgates and let all the tears come. It was the most bizarre situation. I was having the weirdest dream with old and new friends, ex work colleagues, snow (? Its still summer!), a basement party, Home & Away stars (even more bizarre), then I was trying to get out a train station and my friend and the Police were there, and I stole a passport from a locker to get through the gates so they arrested me. I mean all that there sounds like I was on a weird trip! But when they told me I would get jailed for six years, I broke to my knees and wailed. I woke up abruptly with silent tears streaming down my face, and after a loo trip I was in the sobbing phase. After sitting in my living room pulling it together, I knew I didn’t want this to be the point I broke. I know that I don’t want to break yet, if ever. I need to fight this with clear head and at this moment in time I don’t need to get into my negative head. I need to be strong. There will be plenty time when this finishes (I hope) that I can cry and look back on it and deal with it. But at this moment in time I am fighting.

At 8am watching some rubbish on TV, the postcode lottery advert was on with their catchy slogan ‘it could happen to anyone’. Well – that felt much like this bloody cancer. It happened to me and I am living it.

I’ve got this. Still waiting, but still strong.

C Day……

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11/09/18

Today is the day. It is 6am and I am up and ready,waiting for a lift to the hospital. I feel pumped (although a little grumpy as it is early to be fair). I am ready for this and have been waiting a long time to get this lump out. It is the start of something now, and I have been ready for it for the last two months. The car journey (with my dad) is very quiet. We have no words to deal with this. Which daddy ever wants to take his daughter into hospital to get an operation to get rid of cancer. That entire sentence doesn’t need to be in any bodies vocabulary does it? We are a traditional daddy, daughter pair and I don’t want to be the person who is bringing such pain to his heart.

7.15: At the hospital the call comes out for me and I am led through to the surgical centre by a nurse who felt like false cheer was what I needed this morning. I wasn’t buying it and my grumpus mood probably showed. I wanted to get this done, it was something I needed to do, but I didn’t need to make light of it or inane small chat with a complete stranger. (I was worse than hormonal!). What did perk me up was the fact that the first nurse swapped out and was replaced by a young nurse who had completed the Great North Run two days prior! She was walking like John Wayne and I honestly had empathy with that having done the run a few times, so my mood perked a little bit. (My little wicked self also chuckled at the first nurse having to sweetheart a colleague to deal with me as she couldn’t!!).

8.00: I’m waiting in my two hospital gowns (one front facing, one back facing – the glamour), thrombosis socks and the cheapest pair of totes socks, for the anaesthetist and consultant to come round. I’m harbouring the remnants of a cough from the cold and desperately trying hard to hide it. The anaesthetist came in first and spotted my skulduggary straight away. After a run through of the mandatory questions (how much do you drink? Not enough!!) he brought up the ‘cough’. Thankfully, after a good listen to my lungs he prescribed me well enough to have the op. I have never sighed a bigger sigh of relief. My consultant was in next and again, the limpest hand shake in the world preceded him asking me a lot of the same questions again. But he did confirm I was second up for surgery and the first one in front of me wouldn’t take long. I was on my way! I was getting a lot of messages from friends and family and to be honest time has never passed so fast. I was welcome for the distraction, and in no time I was being called to have a walk by the tallest female I have ever had to walk alongside in my life. I’m little, but she made me feel tiny!

9.15: I was walked along a maze of corridors. Medical equipment and beds lying all over the place, the bowels of the hospital, all the while in the fetching gowns and totes until I entered the outer chamber of the surgical room (I’d imagine there is a proper term for that) where I would be put to sleep. The female nurse who walked me along was lovely and didn’t try to over chatter which considering my mood by that point was a blessing. As I laid on my back, staring at the minute hand of the clock ticking round I breathed deeply waiting for the sleep to come and knowing that when I came round I would be ‘cancer’ free. The lump would be out.

12.30: I was back in the surgical ward pod, and blubbing. Why do I always wake up from anaesthetic blubbing?! It wasn’t even because I was aware of anything at that point, it just appears to be my thing! The poor nurse was still struggling with the act of walking. My blubbing didn’t help her day!! I haven’t cried a single tear about this whole craziness, not one. And I knew this would be the first tear I cried as it appears I am making this my thing. But it still annoyed me that it was involuntary and I didn’t want to yet. This damn cancer wasn’t going to make me cry.

The next thing I knew, as time flew by quickly, I was getting picked up after a cup of coffee and an Hovis biscuit (gone are the slices of toast!). All I knew was my armpit, boob and arm were all in agony. I had a brief look and the plaster was over half of my armpit hair. That was going to feel like a pretty wax when it got taken off. I made it home, entertained the parentals for an hour so they could check I was still alive, then went to bed from 3pm to 7pm. I woke up in terror that I hadn’t said goodnight to my baby (she was at the parentals for the night). Reassured that I hadn’t missed it, I rang and had a lovely crazy chat that involved a lot of questions by me, unanswered by her and requests for me to sing Edeilby (Edelweiss from Sound of Music!) over the phone. I’ve never been so happy.

That night though I finally have the realisation that the Cancer is out!! I might feel battered. But I am relieved, the Cancer IS OUT! I know its only the start of a journey, but by god it feels good that the actual pesky cancer lump is out of my body. Its extremely psychologically positive and I am going to hold onto this feeling for a while…

5, 4, 3, 2, ……

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30/08/18

So the referral to Genetics must have finally hit their desk, as I received a significant pack asking for a lot of information that I just didn’t have. This required the parentals who were busy worrying their little hearts out in the Austrian hills, pretending to have a relaxing two week walking holiday. That would have to wait until they returned. I didn’t think it would amount to much anyway as there wasn’t any links in my immediate family to cancer that I was aware of, so I parked that little bit paperwork.

06/09/18

The next step closer to the operation was the pre-op assessment, and helpfully I was loaded with cold. And I mean loaded. Full on phlegm and snot all over and I spent the morning drugged up with paracetamol and flu tablets to try and hide the fact! But in seriousness I wasn’t hiding it from anyone. The nurse was lovely and after asking how long I had the cold for (three days at that point) she said I should be fine for the op in five days. After some blood tests, DNA tests (who knew?!) the first nurse knocks in that she is eleven years clear. Why? I don’t think I understand yet that everyone has a story that they want to share with a cancer patient. Maybe its like that time when you said if you become a mam you won’t talk about your kids 24/7 then you proceed to do exactly that and become the worst hypocrite alive!

After a ECG before I could be released from the assessment, I then went to the dentist where I casually asked if my pearly whites (as pearly as they can be but they are all mine) would be ok in chemo, and she then proceeded to tell me a tale about her mother-in-law and aunty who both had cancer. Why?! Why? However, she did mention that the aunty had used a cooling head pack thingy that had helped her keep her hair through chemo. That might be one thing I google.

08/09/18

Dark thoughts today. Why did I bloody do it? Read an article about someone with Stage four cancer a few days ago, and then read today that she had died and had written birthday cards to her son for all his birthdays. I DO NOT WANT TO LEAVE MY BABY. God, I want to see her grow up. I carried her, I had her (albeit an emergency c-section), I want to see how she turns out. I’ve only had five years with her, that’s not enough. I want those arguments when she’s a stroppy teenager (maybe sooner I hear, and I also might need to read this to myself a few times when I have to live it!). I shut it down. I cannot think like this.

09/09/18

The parentals help with the genetics form. Who knew that my paternal great aunties both had cancer and one had a removal (but we don’t know why – that side of the family barely know any DOB’s!). My maternal great grandfather had bowel cancer, and I didn’t know that was related but it was asked for so must be. I posted the form off, again with the thought that nothing would come of it.

10/09/18

Its getting more real now. One day to go and I spend the morning frantically finishing work stuff off and warning my team that I am off grid from that afternoon. For once I am not planning on sneakily checking my emails. I do not need any Whatsapp messages ‘filling me in’ on the gossip when I can’t do anything about it. I am determined to focus on me, my family and my recovery. I am positive I won’t be off two weeks. I even pack my work laptop to bring home so I can pick it up and crack on with some work second week in.

That afternoon, I also need to get radiation put in my breast where it will work its way through to my lymph nodes (the cleverness of this blows my mind). Once I’ve escaped work, I wait in the x-ray department watching Judge Rinder (help me) and waiting in another windowless hole (why are all the waiting rooms in an hospital windowless – its as if they purposefully want you to feel more depressed than you were). Then called into a further hole down a longer corridor. The male nurse was the most awkward man ever, who asked me to ‘cover up’. After lopping them out for every other person, someone trying to cover me up with a bit kitchen towel was the most ridiculous feeling in the wold. I felt like saying ‘mate, these have been seen by everyone, I’ve also had a baby, my body is not my own’!

One day to go. One last sleep then I would be rid of the lump, the cancer. It would be out of my body and I could get on with the rest of the preventative stuff and deal with life again! I’ve got this.

More appointments and waiting………

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22/08/18

I am not a patient bunny… we had got back from our holiday on the 18 August, and the first appointment back at the hospital in the post was for a further ultrasound on the 22 August.

The ultrasound went smoothly. More boobs out while the clever doctor examined every blip that had flagged up on the MRI. Three areas were dense tissue and nothing to worry about, one area was my previous scar tissue again and the cancer was still there. But at least it was still only the one lump. A larger lump in my head but still just one. It was a small comfort.

I also took some comfort from the fact that I had decided that I would take part in a research programme, a trial to understand the impact of cancer diagnosis and treatment on everyday life.  It is a long term programme, running throughout cancer treatment and then for a few years afterwards. And while I think I’m quite a unique little introverted bunny, maybe it might help someone down the line dealing with their everyday life when they get the diagnosis. Hopefully the care that other people get will change as a result of this and improve for a wider understanding for workplaces. A lot is made of mental health awareness in workplaces, and although thoughts around cancer from the patient could fall into this, I think there is some differentiation in approach to it. I just haven’t worked that out yet!

The next week was the longest by far. And I took to writing a lot down. It was something I needed to get my thoughts out as they were eating away at me. I didn’t feel I could talk to anyone, no-one I know is living it and I don’t do well with strangers and baring my soul! I am the most introverted person!

I felt different at this point. Was I physically different – no. But the definition of cancer hung above my head every day. I could see it in the way people looked at me at work. My friends were rallying round. And yet I still hadn’t told one of my close friends as life had got in the way, the usual chaos of weekend plans, parties, arrangements to meet the grandparents and no time to actually sit down and chat with her. We arranged to meet up for coffee and after half an hour of discussing anything but, I dropped the news. I hated it, because it always leaves me with more questions that I can’t answer. As I am waiting.. And waiting… And still waiting. By this stage my breathing is out of control. I have a pain in my shoulder as I am forcing my breaths, I don’t ever feel like I can get enough air in my lungs and it is terrifying. I have feelings of guilt that I am letting everyone down and that I need to power on, and secretly I am uttering ‘Why me?’. Not helpful at all.

27/08/18

Bank Holiday aims – spend quality time with my baby girl. Just the two of us as the man cub was at work. So we lazed about, barely making it into baths and showers by midday. We didn’t have an aim, we just went with the flow. We made a mess, we baked, we went to the park and we chattered all day long. My girl can chat. And I absolutely bloody love her. With every part of me. Selfishly, I want to see how she turns out! As I already think she’s pretty amazing.

29/08/18

Finally the consultant appointment. He made me feel more confident now, that they would get this cancer out and apart from preventative measures of chemo, I could go back to living my life. But I still had a longer waiting game to play – the operation wasn’t booked in until the 11 September, two full months since they did the first biopsy. I had several appointments booked in before the op could go ahead  a pre assessment check (to make sure I was fit and healthy) and a sentinal node marker appointment where they put something in your boob to make its way to the lymph nodes for the actual day of the operation. It was all getting real now, and I just wanted it over and done with.

There was another breast cancer nurse in the room that day. My Pauline was busy with another lady (delivering bad news to some other poor soul I’d imagine). I was taken into the bad news room again after the chat with the consultant, told me I needed to read the green book (I don’t want too!) with certain pages identified so I could understand what was happening. I still don’t feel the need to read anything about this craziness. I will need a supportive bra for after surgery (ha – where can you find supportive when you have wonky boobs already?!), mention of a counsellor for after the fact (why would that help after the fact I thought?) and then that I would need at least two weeks off work to recover (aaagh – I did not like that mention).

I was still on the journey.  And although we weren’t going quickly we had a plan. And I had this.

Holiday with a cloud…

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05/08/18

We were off. On our holidays as a family.

But we also had to tell my best friend. We usually see them every year and the cub is bang in the middle age wise between her two. We met at Uni, living together as strangers, and leaving as a quirky friendship that has weathered distance, time and life changes. We always make our way back to each other, but I can’t think I’ve dreaded telling her anything more. It kind of felt like it was going to be worse than telling the parentals.

We arrived in the wilds of Scotland, pitched the tent in my home of birth, and set about enjoying ourselves while resolutely ignoring anything that might be going on in the real world. The downfall of that was the phone call the first day in, to say that the MRI had flagged up some ‘sensitive’ areas that would need another ultrasound! Well of course it bloody did. I could have written that chapter. I would have to wait until I got home for the letters to confirm when this would happen and when I possibly might then have surgery. More waiting.

The next sticking point was the meet up with the most beautiful girl in the wold and tell her horrible news. I managed to do it in the rain, in the woods, while the children ran feral. I mean you can’t really choose a good location to drop that bomb shell! So that set a tone for the whole holiday every time we met as it just hung over every conversation – what did I need to do next, when would that happen. And I just couldn’t get away from the situation anymore that this was really happening to me.

I’m not going to lie, I had a couple of dark days on holiday. I was a bit ratty (that does happen in a tent over two weeks usually anyway! But this was a level up!), I was convinced the skin was different in the area of the lump, I was also convinced it was bigger. But campsite communal showers aren’t really conducive for having a good inspection in good light. Neither is a tent, while a child runs about wondering why you’re flashing boobs at her daddy! We aren’t that weird!!

However, I was determined that for the majority of the time, I would make the most of being away from home. We stayed up late, we slept in late. We had lazy days where we went to the beach, park, back to the beach. We went for a lot of strolls in gorgeous woodland. We visited a treetop adventure park which was an amazing day. And while we didn’t experience the hot weather that we had previously had in the summer (I mean that is just our luck – have I explained our luck already, its hilarious!), we didn’t get soaking wet (always a bonus in a tent) and we laughed. As always, we laughed and laughed a lot. Its what we do. And it felt good. Really good.

18/08/18

The long journey home was hard. We had gone to sleep in a gale and woke up in not much better conditions. Getting a car packed, tent down and keeping a five year old from losing it was somewhat of a challenge. And then the kicker… as we all went to get a shower I decided to take the car up to the shower block. The battery was dead!! You couldn’t make it up – the previous year the exact same thing had happened, on the exact same campsite at the exact point in our journey to go home. And we had blamed the child for it! Thinking she had faffed with too many buttons and caused it to go flat, that year we had ran round like lunatics trying to find jump leads. This time, we had been prepared (although they were packed quite far down in the boot!), but a quick chat to some friendly camping neighbours and we had an engine running while we took turns to sit keeping it running while the other showered. That ended the holiday with more laughter!

It was then a long journey home. Seven hours where we persevered with seventy billion versions of I Spy until I did hand my phone over for the last hour. Thank goodness for data!! We were all exhausted on the arrival back home.

And there they were – the letters. A further ultrasound appointment on the 22 August, and another week later the consultant, eight and a half weeks since I had first found a lump, six weeks since they had confirmed it was cancer. And all the while I had to live with cancer in my body. And I could feel it eating my soul a little now. I wanted it out. I really just wanted it out, and to deal with the next part of the journey.

I had this. I had too.

Random thoughts …..

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25/07/18

  • Got to say denial is the best form of survival at first. Its easy to fall into, ignore the facts, avoid Google articles, but then social media / standard media seem to know. And I mean know. All articles I see are related, someone who is in end stage cancer, writing letters to her child. What am I supposed to do with that information.
  • Why are other people seeming to be more upset than I am? I’m still ignoring its happening. Everyone else is treating it for real. I don’t quite know how to deal with that.
  • The lump is huge. I mean huge. How did I not even feel it before. It feels deformed. Much more pronounced. How did Ryan not feel it. Why?
  • Who do you tell? I’m going to be off work, I’m going to be unavailable, I’m going to meet people who I used to know and look different. How do you announce it? How do you drop it into random conversation.
  • Other people are quick to tell you about their troubles / the person / friend / aunt / cousin who had breast cancer. They got well / wasn’t a bother / chemo was a breeze / didn’t lose their hair / died (WTAF). Why do I need to hear this? It’s the eggshells that I feel like I’m walking on. I end up apologising for giving people bad news. And nodding that it will be all ok. Of course it will be. IT ISN’T – what would have been ok would have been this never happening.
  • I’m worried about the historical issues I’ve had with surgery, the healing, bruises, bleeding,  the scars that more surgery will give (I’ve already got enough, I don’t need anymore!).
  • My breathing is out of control. For the last couple of years, I have started showing stress n my breathing, the worse my stress the more my breathing becomes out of control and I end up gasping for breath. This has not helped that situation whatsoever and where previous stress was usually related to work or the child, now it is random.
  • I feel like an outsider looking in on my own body, my own life, my families life. I keep getting thoughts on what life would look like if I wasn’t here. Would they all just end up forgetting me, would the child get enough love from all those around her without me? Would she grow up to be the most amazing human being that I want to her to be? Does she even need me for that?
  • My family, my baby, my world. This is the thought that does break me every day. I love them more than life itself. I couldn’t live without them, but they might have to live without me. I don’t want to miss a thing.
  • I wrote down Cancer for the first time. In my little black book that I’ve started to use to document the journey I’m on. This was in the middle of my list of random thoughts and I finally wrote the word down. When do you ever imagine that you have to write the word about yourself?
  • I ran Race for Life a few years ago for a close family friend who was fighting cancer at the time. Its now bizarre that I could be running it in the future for my left boob! Is this for real?
  • A work colleague gave me books. This was the most thoughtful gift. No meaning, no grand gesture, but a gesture non the less. And it meant the world to me. As an avid reader I hope to at least make use of some time off and read.
  • Cancer – the word spreads fear and dread doesn’t it? Spells heartbreak in just on word. You always assume ‘it’ll never happen to me’. Naivety is a beautiful thing. I HATE IT.
  • Five weeks and no crying, I haven’t cried once. I nearly broke a couple of times saying the word out loud, but now I’m like stone with it. I probably do need to cry. A lot. But I know if I started I might not stop. I’m too stubborn to start though. I’m not a cryer by nature (but reflecting back I do usually wake up from anaesthetic crying!) and I don’t want to cry as then I’ll feel like I’m broken. And I am not broken. I am a fighter and to me fighting means I am not going to cry.

I don’t like a journey without a plan (well, apart from our holidays! I like them to be unplanned as it’s the only time we don’t have too!). My entire life is planned otherwise, but now my journey is in other peoples hands. Strangers to me. I am putting my life in their hands and I am not sure how I feel about that.

But I’m still here and I’m fighting it. I’ve got this!!

The natural progression of appointments..

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20/07/18

So after the initial shock and denial of the biopsy results, I had to still prepare for the childs birthday party and actual birthday at the weekend. But the worst thing I had to do was actually tell the parentals. After a ridiculously tense phone call where I quizzed them on their daily activity and worked out when they were free, I arranged to pop round. I could tell the mother was a bit weird about what I wanted (am sure she probably had thoughts that I was going to announce another shock pregnancy!) but I finally arranged to meet them on the Friday, while being off work to do the last bits of arranging for a party for twenty the next day. Well , life continues doesn’t it.

I arrived at the parentals and just blurted out the news. As expected the mother asked a lot of questions that I didn’t have answers too, a bollacking for not telling them sooner, all the while with my dad looking like he’d just been hit by a ten tonne truck. It was brutal. Because who ever needs to hear that news? Its not something that a parent ever wants to hear about their baby no matter how old they are. I’m pretty sure if they could both of them would have just cut it out of me there and put it in themselves. I know I would with my own baby.

While we discussed the next steps I mentioned about our upcoming holiday on 5 August. They said that I needed to do what the hospital said, I said I was going on holiday. It wasn’t even a thought in my head that I wouldn’t go on holiday. I needed to be alone with my family, my world.

21/07/18

The childs party came, happened and went. I was never going to enjoy it apart from seeing her happy little face overjoyed at all her little friends playing in ‘her’ park with her. I couldn’t have been happier for her, but I was hiding under a cloud that probably made me look more anti social and stuck up than I usually manage to achieve!

25/07/18

My next hospital visit was for a mammogram to try and identify the size of the cancer from all angles. It was a quiet waiting room and while I had a mammogram years back when I had my previous lumps, I had absolutely blocked out the craziness of the whole process. For the uninitiated, the process is not by any stretch glamorous. Now after having a child and everyone and their granny seeing your under parts, you’d think that I’d have given up on feeling like a prude. But when a young nurse manipulates every part of your boob to squeeze between two vice plates and then goes to x-ray them, I squirmed a little bit inside. And its bloody painful as these two plates squeeze your boobies at a level just short of tear inducing. I then had to have a tracker injected in which would show up on any further mammogram scans to enable the people in the know who were analysing to make sure they were looking at the right thing. Then I went back in again for round two of the mammogram. I came back out into the waiting room half an hour later feeling a bit battered. Hoping that would do the trick though in showing up the little bugger and surgery booked for when I came back from hols.

27/07/18

‘Kirsty, the mammogram didn’t show anything as the tissue was too dense. We need to do an MRI’ said Pauline, the Breast Care Nurse.

FML. Why? Just why? So a bloody MRI was the next thing. I remembered that well (funny isn’t it that you can forget some aspects of your memory and vividly remember others). I remembered that it was bloody noisy and that I had chosen my sleeping position to lie in (while lying on my stomach with my boobs essentially hanging in a pit below me – like I said, all the glamour!). I had got cramp in my arms half way through and had counted to many thousands before the experience came to an end.

1/8/18

At least this time I was pre-prepared. But I needn’t have worried. There was a new fancy bed for the machine! It held your arms up! They gave you headphones to block out some of the noise. However, this time as they put the headphones on me while I’m face down with boobs floating about in a pit, I didn’t move the hair that was wafting in my face. And then as I put my face in what looks like a massage table support (it is not as comfortable) three little random hairs just tickled my face. And proceeded to do so for the next thirty minutes as the clunking noise of the machine did its thing. Again – I was uncomfortable and learned more lessons! When they shut the machine down, the announcement over my headphones was not to worry about the fire alarm I could hear that had gone off while I was in there – the department wasn’t under an imminent threat and they would come and get me shortly. I could have laughed it was that surreal. I reappeared in the waiting room to a half asleep Ryan who had thought I’d disappeared down a rabbit warren he’d been waiting that long. But we had a consultant meeting straight after (first time introduction) so I could maybe get my holiday confirmed!

The consultant has a weak handshake, like not even touching handshake. I don’t care – he needs those hands to operate on me. Ryan wants a bloody man shake! But that aside.. We talked about the possible results of the MRI (it is super sensitive so could show up any other lump and I would need more ultrasounds – I was already convinced that would happen!), and then the next steps of surgery. Ryan asked about our holiday (I was sending every vibe in my body at the consultant at that point to say GO!). The consultant said GO! There was no indication in the lump, the biopsy results etc that would mean a big difference in me being operated on in three weeks or four. And because the consultant said it now Ryan was happy and the parentals got off my back about it.

We were going on holiday – 5 August to 18 August. And I was going to do my damndest to forget about it, love my family every day and make memories as we always do. This was in my control and I was taking it back.

The Verdict – world changer in one word

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Nineteen days since I found my lump and seven days since the hospital found the other lump, and I was back at the hospital hoping it would soon be the last visit.

I’d spent the last week not even thinking about boobs and lumps. I was now in the mindset that it was Pash, I would need an operation (no biggie), a couple of weeks recovery, and then it would be over. I would return to stubborn, feisty work boss, pushover mama bear, partner in crime to the man cub; all of this would be a little blip.

So Ryan came with me this time, he was a bit more worried than I was I think, but I still hadn’t told the parentals. Didn’t really see the point in worrying them. Nothing to tell means nothing to worry about in my book. I sometimes wonder who brought who up as when I do this kind of thing I get absolute grief but I am the most pragmatic person in the world.

At least the waiting room was a bit more tolerable having another person there (and not having a BBC2 programme about breast cancer on in the background – well, it was all about Brexit, so I’m not sure of the worst evil!). We tried to make a shopping list for when we were done as it was the childs 5th Birthday Party on the Saturday. Fifteen children confirmed, no plan for the actual two hours apart from hope it was sunny and scatter them in the park at the top of the village! While I hid somewhere and pretended I wasn’t the most anti social person in the world!! Then we had her Birthday on the Sunday. I was far to busy for this waiting around!! We also needed to sort our holiday in a couple of weeks – that had taken a back burner while we sorted a party and attended these bloody appointments. But still a blip. We had this!

The wait wasn’t so long for an afternoon appointment – it’s the results appointments, so they are either good news or bad news and no-one hangs around. People were getting called at a rate, so fingers crossed it would be over soon. I got called through by one of the nurses and taken into one of the consultants room (all medical, clinical and like someone had sterilised it within an inch of its life). I was met by Pauline one of the Breast Care Nurses. Apologies were made for the consultant as he had been called away but they wanted me to know the results of the biopsy. Still calm I waited for the next words.

‘Its Cancer Kirsty’

Its what now? My body went into shutdown as I tried to grasp what she had just said. Ryan was holding my hand so tight and my first words were ‘what do I tell my child’. My first words.

I was numb. I had no words after that. I had Cancer. Tears started falling without me even knowing, I was passed tissues. Then one of the other nurses in the room offered a cup of tea. I mean, I nearly laughed at that point. The good old British solution to any problem, have a cup of tea. No I didn’t want a cup of tea, I wanted a vat of vodka to dive head first into.

We moved rooms into a smaller space with comfortable sofas and bucket chairs; much less clinical and I realised that I hadn’t been in one of these before. These were the ‘bad news’ rooms. Where your world changes forever and can never go back to what it was.

How is it that one word can tip you off a ravine, never to return to the position you were in before? The word alone has such an awful finality to it.

That next half hour was an absolute blur. I was given a green folder with a tick list at the front, a long tick list. There wasn’t going to be any speed about this journey. Then I was given a book that I could read to the child. All I knew when I left was that I  was to have a mammogram imminently to see if they could get more of a picture of the lump.

We walked out of there like empty shells. The confident jaunt in had been replaced by leaden steps, taking us into the unknown.

But typical us, by the time we got to the car I was jesting with Ryan that if I lost my hair I wanted it to come back ginger! Then I mentioned that I didn’t have a will. We laughed, but it seemed empty now.

We then went to buy party bag gifts like a normal couple. Yet we weren’t normal anymore. It felt like we had a black cloud just hanging over our heads. Following us. And we had to be normal. We were about to pick the child up from school. We couldn’t be anything else but normal. A friends partner was popping round after that to drop her present off for her birthday. We had to be normal.

The tears had stopped by then. There was no point. My baby girl needed a party organised, presents for her birthday sorted and a mammy who was 100% committed to her first week of six weeks holidays after her Reception year of school that I had pre arranged to spend with her.

We still had this. It was just a different ‘this’. But we had it, and with everything in my body I knew I would fight it.

First Hospital Visit

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11/07/18

Wednesday finally came round – twelve days after finding the lump.

I got the bus to the hospital. That was how relaxed we had become about the situation. I still strong held the belief that it was a cyst or Pash. Both results would be fine.

I arrived at the hospital with no nerves, and remembered immediately the utter dismal waiting room, all women (some with partners, some with friends) filling every chair at 9.30 in the morning. Then the wait, and wait, and wait. It also wasn’t brilliant that BBC2 were running a show that kept mentioning someone with breast cancer. I don’t even remember who it was now, but I do remember thinking I should maybe tell the Receptionists to change the channel.

But then I got called in. Into a private room by a nurse and asked to remove all upper clothing. Then you sit their by yourself, staring at four walls with the boobs out and chilly! The cheeriest female consultant then rocked into the room, a proper smiler which totally jarred with the situation but I went with it. I confirmed again, that yes, the right boob is always bigger and saggier than the left. She confirmed the lump I found and circled it, then said she’d do a check of the rest of me. No worries, there was nothing else there.

But then she circled a lump where I’d had previous surgery, and then checked the left, where she circled another lump at the top centre. What on earth? What I had been checking and how had I done it that badly?

Then comes the next stage of waiting. Gown on so at least the boobs are covered, the internal waiting room where we all wait for the ultrasound / mammogram, whichever you’re waiting for. I was waiting for an ultrasound and again this wasn’t an unknown. I remembered the last time I had an ultrasound was a happier occasion when I saw my baby on the screen. This time, the screen isn’t turned your way to take joy in the view.

When I finally saw the ultrasound guy (I’d imagine he has a much more professional job title) I was utterly bored. He’d read my file, as he said he had seen me last time when they’d found the Pash. This was the first time I heard the acronym and it made me think that it must be a bit more common now if it had an acronym to label it. So he started scanning on the lump I had found – yes, it was just a cyst and would need drained which was duly done (a little bit painful with a very long needle which I tried to avoid looking at). Then the other lump at the site of the previous surgery was confirmed as scar tissue. Phew.

Then he started checking the left boob, and checking, and checking. Finally he said that it looked like the Pash had, but he would need to do a wide needle biopsy to get some tissue and send off for checking. But he said it looked like Pash, so that was OK in my mind. Then I was a bit more distracted with the biopsy needle. It bloody hurt and I gritted my teeth through it and tried to be a big girl and not blub!

And that was it. I would have an appointment sent in the post for the next Wednesday to return and get the results.

I walked out of the hospital, rang Ryan to tell him the hilarity that I had found a cyst but there was another lump, not to worry as it was likely Pash, and jumped on the bus back to work.

I still had this.

The journey begins here…..

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30/06/18

A journey started this day that I wasn’t even aware of at the time.

It was a usual Saturday morning in our house, two slightly hungover parents were lying in bed half awake, listening to the cub through the monitor in her room chattering away with teddies and waking herself up to a suitable level that she could arrive in our bedroom with a ‘good morning all’ serenade. Happens every week. This one seemed no different.

But as the man cub rolled over for a hug and an arm went round my back for a quick grope (like I said – usual Saturday morning), there wasn’t the usual noise of satisfaction but an ‘oh’ that followed. I mean, if the child is a passion killer, an ‘oh’ surely is a close second.

‘Theres a lump there – have you felt it?’

Well, no, was the short answer. Followed by a quick grope of my own. Yep, definitely a lump on the outside right boob, and a fairly sizeable one at that. I frantically scoured my memory for when I had last had a good check. I couldn’t think. But surely I would have noticed it? Surely he might have noticed it?

I should mention at this point that I am usually (not on this occasion!) quite good at checking the boobs. Twelve ish years ago I had a pseudoangiomatous stromal hyperplasia (Pash) lump removed along with, over the following couple of years, a few cysts drained. At the time Pash was relatively unknown – my consultant had sought advice from American colleagues – and it is still rare to this day , a rare, benign, non-cancerous lesion that once removed should cause no further issues. Even then, I never once heard my consultant refer to it as Pash, only as its full name.

As with previous lumps, I moved into my usual pragmatic self – I mean you can’t do much else when the next voice you hear is the five year old duly following her usual routine with ‘good morning all’. I showered later, had a good feel around elsewhere and satisfied myself that this was the only lump and it would be fine. Of course it would be fine, at best it would be a cyst, quick appointment to get drained and all done and dusted. At worst it would be Pash, not an unknown entity, but simple enough surgery, removal, job done.

However this time round I hadn’t anticipated that being a mama would play on my mind quite as much, I was ratty as hell and when the parentals returned from their two week holiday and met us for Sunday lunch the next day, both the man cub and I were in the foulest of moods and snapping at everything. To the point the parentals offered to take the cub for a couple of hours to give us some ‘time’. Now this would usually elicit some joy and delight that we could fall into bed, fool around and shut out the world for a bit, returning to the childless years for a short period of time. Not so – we sat in silence, for the next two hours and awaited the return of the cub.

I never realised how long a weekend could feel at that point. From that Saturday morning to the Sunday night felt like a week, all just waiting to be able to put wheels in motion. Ring the doctors, get a referral to the breast care unit, attend the breast care unit, wait inordinate amount of time in main waiting room, wait some more in internal waiting room in a gown, get ultrasound, confirm diagnosis (cyst – drain, Pash – surgery), get dressed, leave. I had it all planned out by that Sunday night and was utterly convinced that the journey was set.

Monday morning, and I didn’t even make the phone call to the doctors until 11am – I was far too busy with work and very important meetings and catching up on the gossip off everyone about their weekend activities. Normality had returned. By the time I made the appointment for the Wednesday with a lady doctor, I was blasé. I had this.

04/07/18

I sometimes hate the bureaucracy of getting a hospital appointment. Sitting in the doctors waiting room, I knew I was about to waste her time with something that I could have booked myself straight into at the breast screening unit. A quick undress (confirm that your right boob is bigger and saggier and always has been so compared to the left – yes!), and feel of said lump confirmed that it was a lump (shocker!). Then a quick tap away on the computer and five minutes later I walk away with an appointment for said Breast Screening Unit (Purple Zone!) the following Wednesday. Another week to wait. By then twelve days since I had felt that lump.

But still I continued my pragmatic approach. This was no big deal.

I had this.

Just putting this out there – cathartic

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So the Instagram world went wild on Sunday night as Bree (Marcia Cross from Desperate Housewives – an amazing actor and female icon) posted a pic of her losing her hair due to chemo. It was a moment that threw me more than it would have two months ago. A moment that had me thinking about every decision that I had made in the last two months. Also a moment that had me thinking about every decision I am about to make in the next two months (and more).

And it got me really thinking.

When do you announce to the world that you have gone through, are going through, are about to go through the scariest, most ridiculous period of time in your life? Is there a right time? Is it anybody’s business but your own (family)? Do you want Facebook ‘friends’ offering condolences? Do you actually want to open yourself up to this (I am ridiculously anti social)? But then should you share? Should I make this a platform for others to learn from? Would this help?

All the questions.

And this also got me thinking, what do I actually need at this moment in time. Post surgery (pre results – lets hope they got it all out), do I need anything? Do I want anything? Here’s the answer – I think I do. I think I want to spread the word that this Breast Cancer can affect anyone. And I mean anyone. Mothers, sisters, grandmothers, daughters, step-daughters, step-mothers. And all others. It really can.

That is the message.

I don’t want sympathy, or pity, or knowing looks, or condolences, or stories of others. I feel like I want to spread the real word. I want every woman to be on high alert. I want everyone to be on the look out for this sneaky little body invader , who creeps into your bed and body and can attempt to break the steeliest resolve in a heartbeat. The invader that can bring a mother to her knees without a moments thought for herself or partner but her child is paramount.

Lets get onto me:

I am the most stubborn person (ask Jon who I sit next too at work) in the world. Accepting all management training speak and a lot of work over the years, I still make an effort on a daily basis not to lose my s**t daily with sub standard actions.

Cancer, however, doesn’t really comply with me losing my s**t and yelling at it. It is already in my body, haunting my tissue, making an attempt on my soul. And I can do jack about it, but comply with all medical appointments in the natural order of things. Which can feel bloody slow and long and winding. But I tell you what – steely resolve is still intact and I am fighting with every part of my body and soul. Not just for my beautiful child and family, but for the world of women. I have already signed up to a research programme (which I passionately feel is positive), I am determined that the next Race for Life I feel well enough for I will be running ‘for my left tit’, and I have promised myself I will document the full journey from actual start to ultimate finish for the child. She is my world. And I will do everything to keep being her world.

Next step is chemo – guaranteed hair loss. BRING IT ON! (while I also revisit and document the journey so far – it feels epic up to this point, but I’ll keep looking forward)