Third chemo blues..

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

‘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!

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!

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!

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!

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.

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.