Latest Prof – All OK

Well, the inevitable shitty day came and went yesterday – having avoided Prof like the Plague (almost as bad as the Big C) I finally had to succumb to a trip to soggy Parkside for a check up, blood test, pee in a cup, dance on a pin head etc.

Pretty torrid session – my results are actually the best they've been since transplant – which should be brilliant and really great to hear, but all I can actually feel is the impending terror of it all going wrong. It's just so crap when you know that the bloody disease is going to come back, and statistically that will be in Jan 2011, a mere 4 time-speeding months away now, if I hit the median remission time.

Obviously am desperately, desperately hoping that I'll get more remission than this, but there's nothing in my results which can predict when it will happen, nor suggest that I am doing better/worse than the average person. So its just a hideous waiting game. Like when you know that a massive runaway train is absolutely definitely careering towards you but you just don't know which corner it's going to belt round and splatter you into oblivion.

And not helped by Prof being his usually elusive self when I ask questions – he couldn't even tell me whether I am more at risk than an average person in contracting things like chesty coughs or other illnesses, given my situation. I just don't get this bloody disease – one minute they're chasing you at the slightest temperature, and the next you're just the same – maybe – as the next person. But who knows? I certainly don't.

Ended up shouting at him as he then said I was being a hypochondriac of all things!!!! I mean HELLO – either I have got the fucking C-nasty, or I haven't! Last time I looked it seemed to still be INCURABLE and therefore TERMINAL and those are two utterly appalling words that no-one would ever want to hear. So I think the fact that I 'still seem to be on the edge of tears' shouldn't be that much of a surprise to a bloody Oncology professor when you're sat there in front of them and they have absolutely ZERO fucking hope to offer.

He keeps giving examples of 'there was X who had Myeloma for 15 years and was still going' = but doesn't ever say, 'oh yeah, of course 500 other patients of course died during this period'. This guy was just the one very lucky sod who did way better than the odds – but of course EVERY SINGLE person coming through his doors wants to be that odds-cracking lucky guy .. of course, who woudn't?

Amazes me how someone as senior as him has so little understanding of what it's like to live like this, shitting yourself that it will go wrong sooner rather than later, that you'll end up with endless broken bones, unable to walk, with kidney failure, plasmacytomas, in a wheelchair, bald & shrunken, dying in a strange bleach-smelling hospice…. It's not a great future to have before you. And of course I am DESPERATELY appreciative of feeling so well at the moment – but it doesn't ever shake off the big dark cloud of 'IT'S COMING' that hangs over Hawksey and me every single hour of every single day.

You just can't go through any day without some reminder slapping you in the chops – whether it's the Added Value 3 Year Plan (hmm, 3 years, wonder if I'll still be working/alive by then?), the newspapers blathering on about the retirement age going up (I should coco), clients who don't know about me asking if I haven't thought about leaving Added Value (yes, but I can't take the health cover, salary cover, death cover with me) etc etc. It really is like that ad of the guy who knocks down a kid in his car and the visual of it comes with him everywhere. You can tell your mind to pack it in, but the reality is a whole lot different. 

So – the lesson is I think to drag out the time between Prof appointments for as long as possible as it only makes it a whole load worse (and that's when the news is actually good!) and to keep hoping for a cure. Even the chance of 'being lucky' isn't the solution as I'll still spend every day wondering if tomorrow is that day it'll be back. So – heads down for a full house on a total cure, so this fucking nightmare might one day be lifted from our shoulders.

Sorry guys -know this isn't a full on cheery post but the old bugger really did put the cat among the Scotty pigeons yesterday. Thank god am not due back there till end of Oct – am sure I can string that out till at least mid-Nov, then remember to book myself for a night of ginormous cocktails and a huge dripping burger, to make it all feel just that little bit better.

Much love to all – next post more perky, promise! S x

 

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  1. Liz Tinlin Avatar
    Liz Tinlin
  2. Cathy, Emmanuel and Lily Rose Avatar
    Cathy, Emmanuel and Lily Rose