Some people with MS really like hot and humid weather. For them, the more sticky and sultry the conditions the better. But I’m not one of those people. The more hot and humid it is, the worse I am. Now you might say oh everyone feels like that and to an extent you’d be right.
But with MS, most people with MS, it really is seismically different. Imagine you’re wearing a thick rubber suit, maybe the most hideous gimp suit you can think of, and you’re trying to lift an arm, or a leg. You struggle, and you slowly do it, then you struggle again.The whole thing is tiring and a strain you eventually have to just give up on. The weather can be utterly draining and leaves you just feeling weak and unable to do much at all.
And in the heat this week, combined with the effects of over a month of treatment, it started to get a bit too much for me. These were what you might call the hard yards. Now I’ve run marathons, I know how tough it can get, and this felt like mile twenty-two when all of a sudden you hit the wall and your legs don’t work right and you realise you’re dehydrated and bang things are starting to fall apart.
So on Monday I had my bang moment and found myself sitting in the Day Centre with Dr B and his registrar and a nurse and we agreed (probably I was told but to be fair I genuinely did feel included and agreeing) to stop the chemo as the side-effects were just making things worse.
Unfortunately, by this time I’d already had blood taken for a pre-chemo test, and had five plasters scattered over my hands and arms. No change there.
Radiotherapy continues relentlessly on, and my neck is becoming increasingly flaky, red and inflamed. I’m beginning to look more and more like a Hiroshima victim, and of course Hiroshima was the scene of similar if cruder and more forceful technology than I’m being subjected to.
I’ve been given a more heavy duty cream to aply to my neck, and told that if the skin continues to decay it might be necessary to wear an attractive gauze bandage.
This would be changed by the District Nurses, who continue to visit me daily to flush my stomach feeding tube through with water (via a big old syringe) and generally check on how I am.
My other daily visitor is now a carer from the Council who helps me to get dressed, fed and medicated. This kind of support has been so useful over the last week or so as things have got rougher. I’m normally the type of person who is likely to get called ‘fiercely independent’ but some times you just have to know when to give in a bit. And this is definitely one of those times.
Music-wise this week there was more Take That and a little bit of light indie pop. Though one of the radiologists has declared a liking for thrash metal, so I’m expecting a drop of Anthrax next week.
I’m still managing to avoid using the feeding tube, though I’m now consuming almost entirely liquid food. I have a line of ‘milk shake style high energy drinks’ which come in a range of flavours (none of which I can really taste) including tropical fruit, strawberry, cappucchino and vanilla. I’m supposed to drink up to six of these a day, which is more of an ordeal than you might think.
At my end of the week meeting with Dr B he suggested a final chemo session next week, if I’m feeling strong enough. Well I’m not sure I do at the moment, though perhaps two days of watching Royals get wet will perk me up.