Finishing chemo was harder than starting it
And starting it was pretty bad.
When you find out you’ve got cancer, most of the things you’re frightened of (death, aside) are actually to do with the treatment, usually the chemo. As soon as you start having the regular infusions of poison into your veins, delivered over hours in a regular ordeal, you start to day dream about when it will be over. You moan about going. Sometimes you cry the night before as you can’t face that Chemo Day has come around again. So, it seems a bit strange for me to say that I really struggled when it was over. But I really, really did.
I cried more in the weeks after my last chemo than I have in the 8 or so months since my diagnosis, combined. More than when I found out I had cancer. More than when my hair fell out. More than when I watched the first ten minutes of Up (brace yourself, it’s worse than when Mufasa bites it in the stampede). I’ll try and explain.
My last chemo regime was an infusion for 2–4 hours every single Friday for 12 weeks. I had a few weeks where chemo was cancelled because I was too ill, but this usually happened after I’d already waited in the hospital for a few hours. So I’d had nearly 20 consecutive weeks of turning up at the hospital for chemo, whether I actually had it or not. About two weeks before the end, the booking team added two extra appointments in my appointment book. While cancer treatment is very high tech, the booking system still works like a building society in the 1990s. By this, I mean I carry around a paper book with all my appointments and side effects in it. I hand it in at every chemo appointment (where it gets taken to the Place Where They Dole Out Next Appointments) and, at some point while I’m having my chemo, someone calls out my name and returns my increasingly tattered book with my next appointment miraculously in it.
At my penultimate appointment, due to a clerical error, I was given three more appointments. This meant that when I turned up the following week, I didn’t know for sure if I was actually having my last chemo. In the end, as I came to the end of that session a nurse called to tell me I was, in fact, Done. It was great and I cried a little bit and apologised to the nurses in the ward for not bringing them cake.
I got home, felt alright, cooked dinner and went to bed.
I was 16 chemotherapies in, so my body was at it’s most fragile and my brain, which up to now knew it just had to plough on, seemed to have finally had enough. So, the side effects kicked in and kicked pretty hard.
It seems somewhat unfair that I started getting a whole new set of side effects after my chemo had finished, but they could have started at any time so I should count myself lucky that I hadn’t suffered any worse (and any sooner). My finger nails started to split and go black. Not really black and obvious so that someone would easily be able to tell that it was a medical complaint, but grey and dirty looking, as if I’d been gardening (ha, I live in London, who has a garden? And if they do, why haven’t they turned it into off-street parking?) and forgotten to clean under my fingernails.
My fingers were aching, too. Like that feeling when you haven’t worn gloves in the snow and then you come inside and all the blood rushes to your fingers and you’re all “Ouch. That’s why my mother said not to play outside without my gloves…” On the other hand (but on the actual same hand), parts of my hands and wrists felt like I had sunburn. Or rather, they felt like your skin feels when you get in a hot bath after a picnic and you realise you should have worn sun tan lotion. Just a bit…sore. But there was nothing to see.
My legs felt like I’d just done one of those circuits classes you do in your twenties where some bloke with power issues goes “3 more! 3,2,1. Okay I lied, 3 more” on repeat. I just hurt.
I also developed a weird sort of psoriasis on the backs of my hands. Strange hard dots that crusted over, cracked and bled when I knocked them or got them wet (which is a lot of the time when you’ve got a baby, what with rushing and the never ending hand washing, yours and theirs).
As I slowly started to come out of the fog, I was trying to make surgical decisions and failing so we decided to sneak away to Majorca for the weekend. I say ‘sneak’ because it felt like something we shouldn’t be doing. Even though my doctor thought it was a good idea, I just didn’t feel like I could manage it. We went and it was lovely but I cried for two hours while I tried to pack because I couldn’t decide what baby wipes to pack.
It wasn’t just side effects though. I was suddenly so, so sad. Chemo gives you something to do. Something to think about. A purpose. You are On Chemo. When it finished, I felt cut loose. I had no idea what was next. Yes, I knew that now I’d have surgery, but which surgery? How will I recover? How will my daughter settle in to nursery in the short time beforehand?
I was such a regular on the chemo ward. The nurses all knew me. The phlebotomists (the people who take blood beforehand) all knew me. The receptionists used to ask about my daughter. Moving on to surgery seemed like such a big, uncertain step.
Once again, I had to immerse myself in reading about my cancer. Making decisions when I was only sort of certain about what I wanted. Facing up to survival statistics, recurrence rates, my chances of a secondary cancer. All when I was so, so tired.
And everyone is texting and calling to say how happy you must be that chemo is over. And you are, and you don’t want to sound like a complete moany bitch to now complain that it’s over, so you just don’t reply, or you lie or you make excuses.
So I haven’t written. And I haven’t called. And I haven’t written.
Or actually I have, but I haven’t pressed ‘Publish’ or ‘Post’. Because telling everyone you’re having an awful time invites people to comment and offer to help because (contrary to what you’ve heard), people are decent (and usually more than decent), and I just needed to have an awful time on my own.
Surgery is next and I’m not really ready. But I will be, I guess. There’s not much of an alternative.
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