Into the third week after treatment and I’ve been beginning to see some positive signs. Slowly, gradually, I’ve begun to notice there have been changes for the better. The most noticeable one has been that my neck now looks like a normal kind of neck, even a neck with a bit of a tan. certainly not the open wound it was two weeks ago.
And my mouth, though it hurts, is definitely not quite so painful. I’m still taking a fair amount of pain relief, but I’ve put the liquid morphine away and cut back on the codeine. It’s mostly just paracetamol and brufen (liquid ibuprofen) plus the anaesthetic mouthwash.
I’ve also been getting a bit of strength back. No more falls, after the fallorama of the first week, and I’m able to transfer from chair to bed and on and off the toilet with a bit more confidence. Carers are still coming in to help morning (nice and early) and evening (usually too late) and I still need that help, but I’m beginning to think there’ll be a time pretty soon when I’ll be carer-free. I even managed to get into bed unaided last night.
So there are lots of positives. I’m even finding I’m sleeping less during the day and am generally a bit more alert.
I went back to the radiotherapy department after three weeks, scheduled to meet with Dr B. He wasn’t there, he was off doing important consultant stuff. But his registrar (Dr C) felt I’d recovered enough to be referred back to EN&T, who would be doing the checking to see how well the treatment had worked (physical examination and maybe scans). So an appointment there in the next few weeks.
But after the meeting with Dr C it was off to the dietitian, who wanted to find out how much I’d been able to eat. I was able to triumphantly declare that in addition to five or six of the lovely energy drinks a day I’d also managed some custard and small bowls of Ready Brek and chicken soup. I could tell she was impressed.
I said I’d been able to taste the chicken soup but not the Ready Brek. She said this was a sign my savoury taste buds were recovering better than my sweet ones. She also said that if I continued to up my eating then the RIG (the stomach feeding tube) might come out when I went to EN&T next. And that will be a huge relief. I’ve been constantly aware of the tube, worried I’ll accidentally pull it out, unable to sleep in any position exept on my back.
She sent me away with a ‘Soft Diet’ factsheet, which has all sorts of advice on what foods to eat and how to make them more eatable. So to start with it’s basically stuff that’s liquidy, like rice pudding, soup, custard. Kind of where I am now. Then moving up to foods which remain a fair way beyond me at the moment, like pasta with white sauce (no tomatos with their evil fruit acid) or jacket potato. Not yet.
But I can maybe see me tackling a bit of fish in white sauce some time soon. That’s of course if I have the appetite for food, which though improved is far from where it should be.
I am getting impatient for things to return to normal. It seems to be taking a long long time, and I’ve read all sorts of horror stories of peole taking months and years to recover from radio/chemotherapy. Maybe I haven’t quite realised how big a deal the treatment was.
I want to get back my appetite, taste, and I want to get my mouth back. I want a mouth that feels unulcerated, one that doesn’t hurt when I move food round in it, or swallow. I’m told I just have to wait, that everyone is different and recovers at a different rate and there are no set timescales they can give.
This thing has been going on for a while now though. It’s actually just a week under six months since I first went to my GP with a lumpy neck. It’s been a long six months.