I’ve been reading Philip Gould’s astounding memoir ‘When I Die – Lessons FromThe Death Zone’, which believe me is nowhere near as depressing as it sounds. Towards the end he makes a suggestion that more research needs to be done into the intestinal consequences of radio and chemotherapy.
And I couldn’t agree more. The treatment and the anti-emetic drugs you get prescribed seem to create a very uneasy balance between nausea and constipation. It feels as if I constantly have a kettle in my guts that’s nearly coming to the boil, but it never does.
At least week two is over. Though to be honest I’m finding it hard to deal in whole weeks. Like the football cliche I’m taking one day at a time. So when I got back after radiotherapy on Monday I crossed the day off on my schedule, saw that Tuesday was going to be a hard day of chemo and radio and I didn’t look any further ahead. It was only Monday but I was already tired. I just got something to eat, watched some TV footballers running about in the rain, went to bed.
I should note here that eating is becoming a less pleasant experience than normal these days. My sense of taste seems to have left me. If I do taste food it’s more and more like chewed cardboard.
But Tuesday was spent back on the cancer ward. The chap who had said two weeks ago he would only be leaving the ward when he died wasn’t there. I was given ‘his’ bed, though I chose to stay in my chair.
The chemo was ok. Only two gos to get the canula in and I actually managed to be asleep when the alarm went off to say the drip had gone through. I’m finding it so easy to just drift off, in fact it’s probably true to say fatigue is becoming a big factor in the treatment. I’m finding it hard to get going at the start of the day, and to keep going during it. It doesn’t help that fatigue is a one of MS’s major symptoms for me.
I’d had a brief discussion with Dr B as to how chemo would impact on my MS, if at all. He said, rather honestly I thought, that he didn’t know. He said it could be bad, but it could be good. Now I’m aware that certain chemo drugs (though not any I’ve been on) have been used as possible treatment for MS, with seemingly mixed results, so on the face of it there might be room for some optimism there. But I can’t say I’ve noticed anything so far.
What I have noticed, apart from the fatigue, is that my mouth is starting to hurt. And my throat. Not real pain, not anything like when you have a tonsil taken out, but it’s a fairly strong discomfort. I suppose they did warn me that it was an inevitable side-effect of radiotherapy.
I’ve not used the stomach feeding tube yet, so it remains hanging there in front of me, like one of those familiars out of The Golden Compass, just waiting faithfully to play its part. I’m starting to get used to sleeping exclusively on my back, though as I’m sure you can imagine, that does feel a bit uncomfortable, and I’m fearful of pulling the tube out by an accident, something that Philip Gould did more than once.
A nurse comes round every day to flush water through the tube, just to ensure it’s not getting blocked, which thankfully it hasn’t.
On the positive side, I have at least managed to break the constipation barrier. I’d been prescribed the Dynorod-like Movacol,but before I started to take that I found a Tesco own-brand lasagne did the job just fine.