First of all, I can't quite believe that John Spencer is no longer around...he was such a source of encouragement and support when I first joined this forum in late 2011.....I feel awful that I haven't even checked in for probably more than a year...although I have been thinking about the forum and MCF and have got my quilt group making a quilt which we intend to raffle....I gave them details of MCF MacMillan and our local hospice and whilst I said that I wanted them to choose which charity should benefit, I did confirm that the support I'd received on the site had helped me through some really hard times, so...watch this space...hopefully I'll be able to confirm a donation in the next couple of months...if I can work out how, I'll also put on a pic of the quilt. It's only half done at the moment..47 blocks out of 80, but it should be lovely when it's finished.
Anyway, now to the reason for my return to the forum....
I'm really struggling with the various limitations that my illness and the treatment have left me with....physical, emotional and financial.
Although I had my peg removed, I still can't really eat much. Certainly not a healthy diet...no big lumps, no bread, potatoes, pasta, rice, meat, fruit...except strawberries....nothing remotely seasoned. Although I can eat some veg, I can't taste them...can only really taste sweet things...so I generally eat porridge or trifle type puddings with extra cream to aid swallowing. As a consequence my cholesterol has soared and so has my weight...which is almost funny given that a year ago I was severely underweight and undernourished.
I have got used to this up satisfying diet, but the problem is that my jaw is getting more and more stiff and tight, reducing the amount I can open my mouth. I do use a therabite regularly, but it isn't enabling a wider stretch, just slowing the ankylosis (seizing up) of the jaw.
Has anyone had to have surgery to free up the jaw...I'm told the jaw joint itself is not the problem...the issue is the scarring caused by the radiotherapy. Although the idea is to remove the scar tissue and replace with undamaged tissue via live flap....the downside is further facial scarring (2 or 3 inches) in the nasolabial fold....no guarantee that it will work, a possibility that it could get worse and a strong possibility of increased pain (although I reduced my morphine needs, I have significant neuropathic pain as well as ongoing general pain in neck, around ears and jaw)
I am really really fed up. It's been almost three years since I finished treatment, but I still have little energy, I catch every bug going and deteriorate fast, the problems with eating have isolated me socially and even within the family, I'm now facing further invasive surgery, im broke...I dread the future. What's the point in surviving when there's so little enjoyment to be had left in life....I don't want to scare anyone and I don't want to seem as though I'm whining....I've just had enough...