Hi
Just heard that my paraprotein score is still stable at 2 – good news, though weirdly enough, for the first time, not a massive relief for some reason.
I think partly as the sesion with him on Tues was one of the MASSIVELY ANNOYING ones – him blathering on about how cells have behaved over three hundred million years and what ancient dogs are like, and me asking him a straight but unanswered question about why the word ‘atypical’ had popped up on my blood results for the first time. Never a word to want to see and seemingly too concrete for him to be able to answer straight.
Cue – me being very grumpy, having a paddy about my name still being wrong on the hospital forms and wanting to get out of there as fast as humanly possible.
Its such a bizarre thing to do – you go, pee in a pot, take bloods, read the Telegraph in the waiting room, have a cup of machine tea, pretend you can’t see the other poor sods in there in their varying states of wellness/illness/emotional meltdown, in that truly British way of trying to be polite / make yourself an island.
We talk to Prof about holidays and the merits of going to Myanmar, he takes a call on his mobile and leaves the room, I get up and look at my notes in the ever-expanding file and make it very obvious that I’m doing so, as I don’t move when he returns into the room. I find some drivel in there about ‘Scotty now seems to accept that her myeloma will be back in the short term’ which I fully know, but just hate, hate, hate to read in black & white, also feeling pissed off that he thinks he really knows what goes in my head.
So I then ask him about setting a context for me to understand my results, the sort of thing that he’ll never helpfully bring up, but which you have to rip out of him with a claw hammer. And he says of my being in partial remission 3 years and 1 month post-transplant, that ‘your situation is relatively rare’.
Which I know, because I can see how many people are back on treatment or have died since they’ve been through the same as me. And I know full well that for whatever reason or stroke of luck, that I am in the top – who knows – 10%? – of patients who get more than the average remission. But this time it doesn’t make me feel massively perked up.
Partly as I know that it’s all the more bloody likely that the day he says ‘ ah, results not so good this time’ is getting closer. Will it be the next appt in April? The one after June? Before that, if something goes wrong? What if the funny sore bit in my mouth turns out to be bloody myeloma returning in the jaw, which apparently it can do, and which now makes what’s probably just a sore bit where I’ve chewed a frigging crisp onto a bit of exposed gum, a big deal rather than a tiny inconsequential thing.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR.
Had personal trainer yesterday and gave the boxing gloves a total thrashing in the gym. In my mind, looking like Tyson on acid. Millionaire Dollar Baby meets Rocky. Lara Croft Goes Batshit. In reality, more like a fat middle aged baity fishwife who forgot her hairband and water bottle, Waynetta Slob Does Battle with her Chip Wrappers, more like.
So, of course obviously relieved that I have two months grace, but wish the whole bloody thing would pack up and fuck off. Back to gym tomorrow and hockey on Sat – let the violence commence! Sx
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Glad to hear all still on a level, I’m sure I speak for all of us when I say I was on tenterhooks for that post too, simply because you were so nervous about it – but how bloody annoying it must be to not know any more than just ‘this week’s score’. Delighted you are beating the odds, never mind 10%, I think you can be in the top 0.001%. Let’s face it, you are that for Boggle scores, games competitiveness, cocktail knowledge, air miles traveled, etc etc. Just add MM to the list. Anytime you want dinner/cocktails/gym buddy/cinema escapism let me know… xxxxx