Well they said it would get worse and they were right. I’m apparently now in the grip of a post-radiotherapy flare that should last about ten days. This week has without doubt been the worst so far. Not only have I been exhausted and more asleep than awake, but also feeling really weak and struggling to get dressed, move about, do anything really.
In fact I’ve had two falls, one when moving from wheelchair to bed that left me spending an uncomfortable night on a sofa and the other when transferring from toilet to wheelchair which led to me being rescued by my carer and a team of ambulance men and women. It wasn’t as exciting as you might think, though they do wear uniforms just like the ones in Casualty.
There has been a bit of improvement over the last couple of days though. The burn scar on my neck is looking much less angry and there have been times when I’ve felt a bit more together, though it still feels like I’m having to make my way through a very thick fog.
The carers have been a huge help. They come in morning and evening now, to get me up or put me to bed. They help with a whole range of everyday tasks that you wouldn’t realise you needed assistance with until you do.
The only downside is that I’m tied to their timescale. Which has meant that I’ve had to go to bed at about 7.30 most nights. Now this has not been such a problem because I’ve been so tired that quite frankly I’ve welcomed the early night. It has though meant I’ve had to record the second Euro 2012 match.
And I’ve been a bit inundated with equipment. The NHS seem to like nothing more than letting a patient have a new piece of kit. So far I have acquired a belt with handles to help carers with transfers, a transfer board, a super-supportive wheelchair seat, a pressure-relieving mattress and a self-propelling commode.
I also of course have my Immobilisation Shield, the mould that covered my face during radiotherapy. This is sitting in the corner of the room, staring at me in a slightly scary, slightly sad way. I might end up having it put on the wall as a sort of memento mori.
There’s little sign of my appetite returning yet, so I’m still surviving on a diet of liquid ‘nutritionally complete high energy drinks’. Obviously these are not the best thing you’ll ever consume, and six of them a day can be a bit of an ordeal. But I’m persisting, waiting for my flare to come to an end.
And I’m also hoping for some taste changes. Not that I’ll develop a sudden passion for the Proclaimers, but that I’ll get my taste buds back. How good it would be to eat and appreciate food again. But even more, how good it would be to get rid of the taste of radiotherapy in my mouth. I can best describe this as the combination of an unfamiliar metal and bad honey.