Pooh

Hmm, ever had one of those decisions to make where you kind of think you're damned if you do and you're damned if you don't?

Well, I have been meaning to admit since my last Prof visit that actually all wasn't quite as good as it could have been and my paraprotein score (yes, that stupidly named thing that sounds like a measure of how many chicken breasts you've eaten in a week) had actually, unfortunately, gone up. And up is not the good way for it to go.

But of course, this being the mindfuck world of Myeloma, scores are never definitive or easy to interpret so the rise from it being 'apostrophes 1' to 'apostrophes 2' on the last visit could be any of the following:

1. A weeny blip in the results, as its such a low amount that its hard to read accurately

2. A temporary raising which could be attributed to, say, an infection when my bloods were taken (although I know I was, annoyingly, fine at the time)

3. An actual doubling of the presence of the PP….. which means the disease is on its way back

So – have basically been shitting it for the last 8 weeks until today's appointment and next blood test. Am more than worried that in the world of Sod's fucking Law, I am signed up against option 3 and all the hideous crap of the Myeloma being back is about to be unleashed on me.

Which made for an 'interesting' appointment this morning. Went in, had bloods taken, peed in a pot, all as usual. And had Prof explaining the options above, ending up with him saying that he thought it was a 50/50 chance of the disease being back vs it either going back to A-1, or staying stable at A-2.

So with the wedding 4 weeks on Friday, what do I do? Is it better to know the next score which could possibly, just possibly be in the first 50% of chances, ie okayish (though I suspect he was being generous on the odds). Or, in so doing, to run the risk of getting an even worse score back?

And of course, if there was no wedding, there would be no discussion at all about whether to run the results, we'd have gone ahead as normal – which also leads me to think (well, come on, its only natural isn't it) that Prof is trying to protect me – temporarily – from the discovery that the shit is about to hit the fan again. At least until the wedding's happened and we're back – now you can see where the phrase 'the honeymoon's well and truly over' actucally comes from. My, that one's ringing all a bit too true right now.

Which then makes me think, rather than worrying all honeymoon about 'how many days it it left now till I find out just how much shit I am back in again', I should get the score now. But then again – if its bad news that will wreck the wedding too. So there you have it – damned if you do and if you don't.

For now, Prof has suggested we 'throw away the bloods' and cancel the tests on them. Which means no more results till I have to go back there (kicking, screaming.. well, probably more like very quiet and wide-eyed with fear) and see him then.

Let's face it, there's never a good time for bad news. And even though there is some chance (as above, I think 50 was a tad optimistic) that it will all be back to 'normal', I've known this time would come since the day I left Parkside after the stem cell transplant. It was always a matter of 'when', not 'if', sadly. And as you know, I am already past the average amount of remission time post-transplant – 2 years was up in January 2011. So, I have the very much appreciated benefit of making it past the average – which does also tend to be an indicator for overall prognosis. And is a whole lot better than the very funny Amanda Skelton in my Under 50s who didn't even get into remission and has, utterly crappily, already died. But – I was hoping to be well above that average, like my other friend Phil in the Under 50s who got 4 years from his SCT. Swings, roundabouts, ups and downs. Nothing does unpredictable rollercoaster in the world of cancer as god-damned Myeloma.

And maybe, just maybe it will all go back down and this post will be me just over-reacting because I hate going to Parkside and being sucked back into that bloody terrible world, surrounded by bald people, desperately thin people, scared and sad people, people with stoic and supportive other halves sitting next to them in the waiting room, people whose lives were never meant to pan out that way…. but just did.

So, bloody bollocks on the timing and bloodier bollocks to the whole damn thing.

I think today will be a day of licking metaphorical wounds, trying to coax Mojo out from under the garden bush (she's not very well and the camellias seem to be giving her love) and checking the kitchen cupboards again and again, in case something really treaty can be discovered within.

Normal Scotty service hopefully (please oh please) will be resumed again soon, Sx