It's a while since I posted anything other than music stuff. I suppose I want to say, "I'm still here". I update my profile bio now and then, but I felt like posting here today, for no particular reason. Maybe this will help release something, some thought or idea or emotion, that's trapped inside me.
Like a lot of "incurables", I have no real idea how long I have left. About a year ago, my visits to my oncologist changed from 6-monthly to 2-monthly... I reckon that was an indication of where I am on the path.
Back in February, I asked for an updated prognosis. My onc was reluctant to say but I insisted. He said that he would not be surprised if I died within 12 months but it could be a few years (I can't recall his exact words). I was OK with that... it matched my own expectations at the time, given the visible growth of the bulge on the left side of my face during the preceding 12 months. During those 12 months I had gone from no bulge to something that felt like I had a cricket ball embedded in my face, and my left eye had been removed (eviscerated).
"Nine months later..." (say it with a French accent, a la Spongebob)... and I feel much the same. Maybe in six months I will be a lot worse, closer to the end (if not already gone).
So things _are_ definitely progressing, by small-ish increments. Month by month there are noticeable physical changes... that's a relatively new thing... it used to take a few months to notice anything.
And there's more pain now. It's manageable with morphine oral solution (10mg/5ml) and Pregabalin, but I try not to use much of these... morphine rarely and Pregabalin on a low dose (25mg twice a day). Paracetamol now and then, but not often. I may be going through a low-pain phase, but I prefer to use as little meds as possible, despite the advice from the local Hospice that I should take whatever I need to be comfortable... I appreciate they're trying to help, but sometimes I feel they tend to play too much on the safe side of things... I had terrible nausea and tiredness at one stage due to that encouragement to use morphine whenever I felt pain.
I don't want to die in the Hospice and I've told them that. I'm sure a lot of people feel as I do, that assisted dying should be available in the UK, but it isn't and that's a real bummer! Dying by suicide (a "DIY job", I call it) isn't the best way to go, particularly if I want to say goodbye to people... can't involve anyone in the final act, can't go peacefully surrounded by loved ones. It's not f***ing right!
But I'm not angry about it... resigned to my fate. I hope the law changes and soon, though I doubt it'll be in time for me.
Sometimes I get really down about this life and consider going soon. That feeling comes and goes, and I can't say I won't do it in the next month. I have no expectation of being around in the near future, three or four months from now. I hope the cancer kills me quickly, so I don't have to do it myself, but I doubt that will be how things go.
All that said, it would be nice to live another couple of years or so. The last three years have brought new joys into my life, including my involvement in community choirs and the friendships that have grown from that. I've mentioned singing in earlier posts and it is life-giving for me. It saddens me to think it will end sometime, but we all face an end... I just wish those newfound joys could last longer.
In a way, this post could be a last goodbye, or a "first draft" of one... much of what I have said here is what I want people to know about how things are for people in my situation, living with this disease, incurable.
I'll leave it at that, I think.
Bye for now,
Tom.
