Wednesday 9 October 2019

Reality check

One thought I keep coming back to, and again this morning (01:15) after Sue's understandable and emotional reaction to sympathy yesterday: have I really, fully, faced up to this yet?

The standard answer is yes, I had a year with MGUS knowing that development into Myeloma was possible (if unlikely, and I didn't expect it this soon!) But at least the thought was in the back of my mind so the diagnosis wasn't a bolt from the blue. It was rather more like that for Sue, because, well, she didn't have the MGUS. It was a couple of reality levels further away for her, therefore a bigger shock when the time came to jump those levels.

When I voiced some of these thoughts to my GP Dr.Ku he just said "Still in denial?" I hadn't thought of it quite that way, but he has something of a knack for getting to the heart of a point.

I don't think it's denial. I'm not rejecting the diagnosis or challenging the validity of the test results, or the treatment plan I've been given or anything like that. But maybe it's a bit more subtle. Maybe I'm concentrating on "one step at a time" to the point of refusing to see the big picture and where this is heading.

Again, I don't think so. I've said before that I'm almost relieved to know what will most probably be on my death certificate. And I'm sure that some of the alternatives could be a lot worse. I've said to several people that we all know where we're going in the end, I just know a bit more than most about what my path to that place is likely to be. That's a gift I might prefer not to have, but the cards have been dealt and I'm happy with the ones I've got.

Maybe the one thing that would make a difference  would be if I were told that I couldn't have a transplant after all and that my likely lifespan were to be reduced to just a few years and most of them in a bad way with one infection after another and all the rest of myeloma - bone pain, fatigue, fractures, a non-functional gut, and a compromised immune system. Given all that, I might well be looking into the train timetables for a one-way ticket to Switzerland, But we're not there yet. Not by a long way. There's a long road to follow, and I aim to make the best I can of every inch of it.

But that nagging mind-worm of doubt is still there. Have I really, truly, taken in what this means for both of us? Maybe the answer will only become clear further along...

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