INITIATION INTO NEW CHEMO

So I started my new chemo last week, at the beginning of September. As I said, one drug is given intravenously once every 3 weeks, the other I take in tablet form twice a day for 2 weeks out of every 3. 

I've always had mixed feelings about having company at the hospital while I'm having chemo - it's great having a distraction from both the nerves and the inevitable waiting around, yet I also prefer to rest, or zone out listening to music, while the infusion is going in, and to do positive visualisations of the treatment being effective. Because I find it hard not to slip into social conversation mode when I'm with other people, I've been concerned that having someone there with me would mean not being able to do what I truly want. But this time I was lucky to find the perfect compromise: my lovely cousin Amanda met me beforehand for a morale-boosting cup of tea, came with me to the hospital and stayed with me till I was all hooked up, then left me to my internal rituals - it made the experience much more pleasant, yet still allowed me to handle the process how I wanted to. 

The infusion itself was fine (I think they usually are, unless you have an allergic reaction to the drugs) and although I felt tired afterwards I felt pretty much OK. Until the steroids wore off the following day - and then, my God, I was completely wiped out. I remember I was a bit tired after chemo last time round, but this was on a scale I've never experienced before: this was bone-crushing exhaustion. It felt like flu (without the flu symptoms), where I could barely drag myself from my bed to the sofa, and even when I was lying down I felt an overwhelming weariness. I was mentally very "foggy", and could only just summon up the energy to eat, deal with the odd pressing email or phone call, and stare glazedly at the TV for a bit before collapsing back into sleep. Luckily I'd been super-organised and stocked up on a week's worth of food, and had left my diary pretty empty, so I spent 3 days almost entirely horizontal, sleeping or barely awake for 15 or 16 hours a day. Even lying propped up on cushions on the sofa was too tiring and I had to be totally flat. 

Perfect illustration of me last week

One bit of good news was that I didn't feel unwell - not a trace of nausea which was a huge relief - so the 8-a-day anti-sickness tablets were clearly doing their job. On the Friday I managed to make it to an acupuncture appointment (with my eyes closed for the whole journey there and back), and that helped to clear the fog to quite a large degree. By the weekend I started feeling more like myself again, able to stay up and about for most of the day, and to concentrate well enough to read or listen to music or talk on the phone. I still don't have huge amounts of energy but I feel a million times better than last week.

The other side-effects, to the nerve pathways, have been rather weird (although exactly as I was warned). For the first few days, when I touched anything cold, sometimes even through gloves, I got a strong tingling in my fingers, as if I'd touched extremely cold metal. Even washing my hands in normal tap water was  too cold, so I had to use the hot tap. I've also had some pins and needles in my toes without any exposure to cold; both of these have been a bit unpleasant but not painful. More discomfiting was nerve pain in my jaw and salivary glands when I ate - not every time, and only lasting 5 seconds or so, but like an electric current in its intensity. I've had a few tingling or numb sensations in my lips and thumbs which aren't exactly painful but feel as though an electric current is contracting my muscles involuntarily - very odd and disconcerting, but fortunately again wearing off a few days after the treatment. To my relief I haven't had the (rarer but much more serious) experience of being unable to breathe or swallow - I've been assiduously avoiding eating or drinking anything chilled, which is what precipitates it, and am very glad not to have had to deal with that.

From all this, I think I need to be very careful to continue to take things easy, not overdo things, and get plenty of rest, even during the points in the cycle when I feel better. It's sobering to realise just how much my body's clearly having to deal with, and I can see that the first time round I didn't really make all that much concession to the chemo. It's true that I had a relatively easy time with the first drug combination, but with hindsight I think I was also terrified of being "ill" and determined not to let it stop me doing things. All very admirable no doubt, but it meant that, for example, I wouldn't let myself have a rest in the daytime, scared it would be a slippery slope from that to becoming a permanent invalid, and as a result I frequently did too much and over-tired myself, which wasn't good. 

Over the past couple of weeks, preparing myself for this new phase of treatment, I've realised that I'd confused being ill from cancer (as in, symptoms related to the position or size or pressure of the tumours) and being ill from chemo (the side-effects of the drugs, which can be horrible, but which stop when the treatment finishes). Because I was terrified of the first, I couldn't allow myself to acknowledge the second. I'm not talking about a healthy still-doing-things-you-enjoy mentality, but denial: I could not allow the possibility of being ill and it felt imperative that I must not let it happen to me, otherwise it would mean it was all over. (It's partly why I found being admitted to hospital last summer so devastating - the illusion that I could stop this happening to me completely fell apart, along with the realisation that I couldn't actually keep myself invulnerable by willpower.) Making that distinction has really helped me to understand that although I felt worse last week than I did before starting treatment, that doesn't in itself mean the cancer's getting worse - on the contrary, I hope the chemo's blasting the tumours at least as hard as it's blasting the rest of me! 

So now that I'm not so scared of what it might mean if I'm feeling under the weather, and not so desperate to convince myself and everyone else that it isn't actually happening and I'm fine really and there's no reason not to keep up my former levels of activity, it feels much easier to accept the side-effects with some equanimity. It was horrible to have such crushing fatigue, but at least I wasn't fighting against it saying "no, no this mustn't happen!", and it no longer feels unthinkable to slow down and rest. I suppose it now feels possible to be kind to myself instead of having to drive myself onwards the whole time. All the same, it's been a big shock to experience such overwhelming debilitation, and to face needing to pare down my life for a while. One week on, I feel like I'm re-emerging into the world, but rather cautiously!