Today marks 979 days since I was diagnosed with leukaemia, a word I still rely on spellchecker to get right for me! In 121 days I will take what I hope will be my last chemo tablets, the end of treatment is nigh.
Why then am I not feeling as excited as everyone else? Well I do still have 2 rounds of ‘quarterly nasties’ to get through. Later this morning I will have an IV of chemo, AKA poison, and start 5 days of steroids. By late afternoon the chemo will be wiping my blood cells, taking everything good along with anything bad, although hopefully after all this treatment there isn’t any of the latter to take. This evening I‘ll go to bed as normal, but come 2.00am the steroids will make themselves known and keep me awake until about 5.00am. By tomorrow’s school run I’ll be tired and grumpy, but keen to get some steps in while I still can, as by Saturday unloading the dishwasher will leave me breathless, which is as good a reason as any not to do it!
Saturday is the day chemo brain will be at its worst. It’s like thinking through treacle, the dark really sticky variety. I can try to read a book, nothing too taxing, fiddle with a jigsaw, lie on the sofa, but don’t expect me to do anything else at all, just leave me alone, I’m fighting a mental battle as well as a physical one and I simply can’t deal with anything or anyone else.
Come Sunday I’ll be feeling a bit less sludgy, but by then I’ll be 3 nights in to those steroids, and have lost the equivalent of a full night’s sleep. By Sunday night I’m so tired things normally start to improve a bit, and I should sleep until 5am. Wednesday is a strange day as I can feel the steroid levels dropping. It starts with a stiff neck that becomes tender to the touch. The sensation works its way down my chest and stomach, thankfully it doesn’t go any further down than that, I’m always grateful for such small mercies. My vision will be bit blurred all day, but that night I sleep! Come Thursday I’ll start to feel better, and I rebuild back up, get back to ‘normality’, and carry on until I do it all again in October.
The difference in October is it’s my last treatment. When I bounce back to ‘normality’ I know that in a few weeks I’ll be released in to the world. I’ll no longer be taking the chemo that has kept anything potentially dodgy at bay. My body will be let loose to do what it wants. What will happen? No one knows.
Since 12th November 2016 my life has revolved around medical appointments and treatment. Bar occasional tests that framework will be removed. In that time I’ll have swallowed over 10,000 tablets designed to keep me in remission and keep germs at bay. They too will be removed. The scaffolding will be taken away and I will need to stand on my own two feet. Now, of course, I’ll still be going back for blood tests every few weeks, I get that pleasure for another 5 years, there is a safety net. The further I get in to that time without relapsing the less likely it is to happen. But every time I get a cough or a cold I’ll wonder, ‘Is it back?’, that’s something I’m going to have to learn to live with.
I also need to create a new framework in which to live life, and right now that is the hardest part of this whole experience.
The thing is I don’t really like the world we live in, in fact I find much of it abhorrent. I’m not talking about Brexit, or Trump, or ISIS, or plastic in our oceans, although they aren’t helping. I’m talking about materialism, lack of social responsibility, loss of community, the belief we can write what we like on Twitter regardless and that what is written becomes what people think, or at lest it’s what they’re told they think. I don’t drink alcohol any more, simply because the chemo has killed off my tastebuds as well as my ovaries. I don’t care about my grey hairs, I’m just grateful to have hair again. I like to make a bit of an effort, but I could easily dispose of most of my wardrobe and not miss it. I object to being bombarded with advertisements trying to convince me that I need bigger and better versions of everything I own. The one thing you can’t buy on the internet is love, and generally speaking you can’t buy people, funny that.
Last week I hit a serious mental low. I think it was triggered by low blood pressure that meant an ECG being done on the bed in outpatients normally reserved for the really poorly ones. Not a bed I’d lain on for over 2 years, but back in that corner with sticky pads and wires being applied I was right back there in the the grim days of treatment. The fragility of life reared it’s ugly head. What if? What if? What if? I don’t know about you but going to the labour ward to have my second child was way more scary than the first, I knew what was about to happen. The same is true of cancer. If I ever get told it’s back it will be way worse than the first time as I know what to expect, and I know my chances of finding remission a second time will be lower than the first. Hopefully it won’t happen but having faced my mortality the thought never leaves me.
When I feel low I turn in on myself, I hide away, I have to work my way through it. I bought and read Matt Haig’s ‘Reasons to Stay Alive’, not because I was suicidal, I just wanted to remind myself of the good things, and remind myself that I too have come back from the brink before and I could, if necessary, do it again. There’s a quote in the book that resonated with me:
“Once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in” (Haruki Murakami, ‘Kafka on the Shore’)
Cancer has changed me, in some ways for the better, in some ways not. My friends have supported me throughout, but the world they live in suddenly seems very different. They have jobs, and hobbies, they appear, at least, to have a direction and purpose in life that I’ve lost along the way. Last week I reached out to the Macmillan community, one reply suggested I find something completely new to learn, answers as to what on a postcard please! Genuinely, all ideas gratefully received.
Cancer survivors talk about a ‘new normal’. It’s time to start thinking about mine, but may be I’ll leave it until next Thursday - it’s time to hunker down, take the medicine, and worry about tomorrow another time.
