Chemo

When I was given my diagnosis on January 13th, I was given a choice – have chemotherapy or not. I was told that this was ‘life extending’, not a cure – very clearly. But the decision was a simple one to me. The hope was that the chemo would shrink the tumours that I had in my liver, and even make them go dormant for some time. This would give me the longest time of survival possible given my prognosis, and it was for me an obvious choice to go for the treatment.

It started the next week, and I want to give my account of my experience of it – it’s a term that people obviously hear and use all the time, but like cancer itself, each treatment is personalised, and everyone’s experience will be different. For some people it’s a walk in the park, and a gateway to years or even decades of good health. Others… not so much.

For me, treatment consisted of one hospital day – during which I was given two different treatments via IV – and then two days of taking pills (which were a pill form of one of the treatments I’d had on day 1). When you have the treatment, you go into the unit, you’re sat in a big, comfy chair, and a cannula is fitted for the IV medication to be given via. It’s tested with saline, and then the treatment begins. In my case, this would take a couple of hours – an hour for one, a break for a flush and then another treatment. And it hurt. There is the option for a heated blanket for the cannula site, which I took, and that took the edge off the pain, but it was painful – painful in your bones sort of a pain. I read during this time, and T was with me all the time, holding my hand and generally being a comforting presence. You get offered biscuits or similar and drinks as well during this time, and you can get up and go to the loo (which I did as I was drinking a lot of fluids).

Once you’re done, you can go. They advise you that you’ll be tired afterwards, and they weren’t kidding. I went home, went to bed and then just slept for hours. T was really worried (I was unaware of this as I was asleep!), but I slept for something like 6 hours. Had a meal, and then pretty much slept the rest of the night.

Over the next couple of days, I had chemo pills to take. These have to be taken an hour after you’ve eaten anything, and you can’t eat for another 2 hours. There are plenty of warnings (as they are poisonous, after all!), and they are massive. The biggest pills I’ve ever had to take. I described them as ‘huge sausage bastards’ (they looked like sausage meat), and had 4 of them a day for 2 days.

And that’s the treatment over with. You then have other drugs to take which are to help deal with the negative effects of having chemo – whether that’s steroids or to boost your white blood cell count or whatever. So you’re pretty much doing something at every meal time (in addition to the usual stuff I have to take anyway with every meal). Checklists with tick boxes were the only way to keep track for me, and I’m happy to say I only missed two pills over the entire time I was having chemo, so not too bad.

During week 2 I had 7 days of injections to boost white blood cell count, which I’d been told were often really painful as they set your bone marrow into overdrive. They’re injected into tissue, so done in my case into my belly. I’d had practice at this as I had 30 days worth when I was in and then left hospital (so had done a week or so myself), but the first one went badly. Just managed to hit something painful, which was awful. T was being really supportive (every completed injection was accompanied by a high five) and her cheerleading helped me a lot. The other injections went generally OK, but I’d say one in 5 was painful to get the needle into, and maybe 1 in 7 was painful while injecting – one in particular was unbelievably painful. To get to the end of the 7 days injections was a real win as I hated them so much. We celebrated that injection more than the others, each time it happened.

So that’s the practical part of the chemo, which ran on 3 week cycles.

But the other side of it is how it affects you. And that isn’t really covered in the (copious) literature you’re given before you start. It’s crazily tiring – it just takes the energy completely out of you. For weeks, sometimes. Each cycle was different.

Cycle 1, the first 3-4 days were really tiring. Just as I was starting to feel a bit better, we had to take my Mum to hospital, which involved me driving (otherwise Mum would have had to wait hours for an ambulance), but managed that OK. But I felt really drained for all of week 1 and week 2. Slept more than usual, and just didn’t feel like doing much at all. Towards the end of week 2, I was really down. Just felt beaten by it, and it’s the first time during this when I’ve been falling asleep and thought it would be OK if I didn’t wake up after this. And that’s a new thought for me, no matter what’s been happening. In week 2 you’re most immunocompromised, so you should avoid contact with other people as much as possible. Which is mostly possible, but not always, and I had to wear a mask when in public (one time coincided with the creon nightmare I recounted elsewhere)

Week 3, you start to feel better, and it’s generally OK to see people. But in hindsight, I still felt pretty bad – very little energy and even a 5 minute walk was a lot to manage. We tried to do it as much as possible, but I couldn’t face it a lot of the time. One thing I’d noticed was that my scalp was getting really sensitive. If I caught my hair the wrong way on the pillow or any other fabric, then it would feel sore, a bit like it was sunburnt.

It was just before Cycle 2 that my hair started falling out. And it wasn’t just a few bits here and there. I was on the phone to my mum and reached into my hairline in a fairly normal way, and a huge clump of hair came out with it. I was shocked. Same action, same again. All of the hair on the top my my head was doing the same thing. So after some denial (me) and discussion (T), it was grade 2 all over as then there wouldn’t be hair everywhere. Now Iooked like I had cancer. It continued to fall out over the rest of the period, although thankfully not my eyebrows. Less thankfully, not where I’d want it to fall out, like my nostrils! Also, some of the hair on my body went, and still hasn’t come back to this day.

Cycle 2 was – I think 11 days of feeling terrible – really, profoundly terrible – with no energy and not wanting to do anything at all. Mentally a real low point, and really struggling to drink enough to feel mentally clear by the end of the day. There’s a thing called ‘chemo brain’ which is brain fog – you just feel as if everything is too hard to think about, and I described it as ‘behind’ – just half a second behind everything, and definitely not fit to drive a car or anything like that. And in cycle 1, week 1 and 2 this usually cleared by lunchtime. But cycle 2 – I wasn’t ‘clearing’ it by bedtime at first, and it was only about 10 days in that I got that to lunchtime or so. So I mentioned this to the chemo hotline (who were excellent – every time I called I was taken seriously, and spoken to with care and compassion) who arranged a blood test, which meant going to the hospital. Scheduling conflicts meant I had to get a taxi back from there, but it was OK. But I was convinced I was going downhill quickly, so made sure I worked on the lovely lego Milky Way I’d been bought by the wonderful staff at Damers (where Tammie used to work and I used to provide ICT and other tech support), as I had become slightly obsessed with finishing it before I was incapable of doing so. I remember opening bag 18 in tears and slowly working through it, and getting a phone call an hour later to say my bloods looked fine, so it was just a severe case of brain fog.

Cycle 3 wasn’t as bad. Not as good as Cycle 1, but better than 2 by a long way. But still felt done in most of the time. Managed a 15 minute walk one day but that was the limit. Bear in mind that until all of this I would walk for 30-45 minutes every morning first thing when I got up, and cycle 50k+ on a weekend with Paul. And now going up and down the road was too much for me. Accepting this has been very difficult – I’ve still not come to terms with it, really. I used to be active, fit and capable. Now I am none of these things.

When you go for chemo, there is a two hour presentation with a booklet and staff telling you what to expect and what to do. It’s very well done, and fortunately I managed to avoid any of the significant (i.e. taking you to hospital) side effects. But you’re tired, and in my case the mental side of things was the worst. I’ve never felt so low and broken by anything. Generally when things go wrong, I’ll have a bit of a strop about it and half an hour later be over it and have some kind of a plan to execute. But here it was just down, down down. I’d heard through a friend of my daughter’s that the mental side is difficult, and he was not wrong. It’s really, really tough. It may be more so as this is not a fix, just kicking the can down the road. But either way, if you know someone who is having chemo, cut them more slack than you might think you need to. They might be feeling worse than they ever have, both mentally and physically.

One side effect that was mentioned but didn’t turn up until much later was brittle nails. Makes sense as the growth takes weeks to get through, but about 3 months in, my nails started breaking very easily, and painfully as they would break up the nail bed, so I had to near-daily trim and file them to try to stop this happening – mostly to some good, but not always.

Chemo really takes it out of you. It is a controlled poisoning of the body which damages cells which are dividing (which cancer cells do a lot of, hence the treatment). So you can’t have it when you’re healing from an operation. And it really takes it out of your bone marrow, hence the limits on how much you can have, and how you are immunocompromised amongst other things.

I’m still not over it. I think I’m more susceptible to illness (when I had a covid jab I had two days of really being ill, and thinking this was the beginning of the end), and definitely can’t tolerate the sun as I used to be able to – this is a known side effect at the time but it appears to last afterwards. There are probably lots of other ways it hits you, but it’s difficult to say if it’s the cancer or the treatment, so I can’t say for sure what’s what. But for sure it was difficult, and much more difficult than I thought it would be. This might be coloured by the fact that my cancer is chemo-resistant so I didn’t get the benefit I was hoping for – the scan after 3 cycles showed it wasn’t having the right effect, so the choice was taken to stop treatment (particularly as the second 3 cycles are much more likely to have side effects as you’re more drained by the treatment) – I was offered another treatment course but there was no solid evidence that it would work, and the side effects were reportedly worse than the treatment I’d been on, and I felt it would take away 9 weeks of the best health I have left – whatever that looked like. Looking back now, I think I made the right choice, as I felt much better for several weeks than I had done since starting chemo, and it’s only now that I’m starting to feel worse again. In that time we’ve been to Tenerife, Torquay, Belgium and Ibiza. I don’t have fixed medical appointments – which you have several a week when you’re on chemo, so you couldn’t go anywhere even if you wanted to.

There’s no good solution for this. I know there’s no way out of this for me. But I did hope that chemo would extend the time I had left, but even if it had done, it would not have come without a cost – I know that now much more than I did in early January. I’m glad I took the decision I did – to have it – as I need to know that I’ve done everything I can. But there was no beating this, ultimately, and I’m in the unfortunately tiny number of people who have this rare cancer that is both aggressive and chemo-resistant.

Throughout all of this there has been one constant. T has been immense. She’s always been there to pick me up when I’m crying, to support me when I didn’t want to do another bloody injection, been with me to every appointment and test that I’ve needed to have and supported my decisions that I’ve made. Together we’ve made sure we’ve done everything we needed to do, when we needed to do it, and made sure that I had the best chance of the best outcome. Her resolve and depths of resources and infinite capacity for love constantly astound me. I wouldn’t have made it through one cycle without her, let alone 3, another crap diagnosis and all the other stuff that has been bad since August.