I remember just how crap it was the last time I was on treatment to 'feel different' to everyone else. I've had many flashes of this in the last 2 months since all this medical crap really heated up again, and got a whopper of a dose yesterday evening and much of last night, for some reason. Guess it's been boiling up and yesterday there she (gently) blew.
Had dinner out with Vicki and Nicky for their birthdays, plus Hawksey, Jules and Tina usually 'nice'for me, but was not so much and it should have been. We were the Jolly Gardeners on Garratt Lane, food made by some Masterchef finalist so very, very good actually, a decent table (albeit too cold for me by the windows, when was the last time I ever ate a meal with long sleeves on, clearly not quite up to my usual fighting standard). I'd had an afternoon kip to make sure I was on form, but had evokes up with a raging red face due to the first ever double dose of 20 steroids in one day, sadly not delivering their usual energy but instead a bit of a 'looking onto everyone else's world' via a sad perspective as mine feels just like shit right now.
It's so hard not to 'feel different' when everyone else is in their normal lives and my own is hanging by a messy thread of IV drugs, injections, tablets, consultants who may or may not get it right for me, endless days at hospital, strings of nurses and an impending stem cell harvest process and the ultimate 'will it or won't it work?' transplant. All the girls' chat about training for uber cycling, swimming, coaching etc sport events here, in the Lakes, in Majorca, France etc was clearly way over my head, as it always has been to be fair, but it isolates me even more now. I can't get to the loo and back without my breathing going batshit a lot of the time now. That's a pretty big gap between me and me friends that at the moment just feels like it's getting ever bigger and more scary, not closer.
And yes, everyone always has their own problems snd shit to deal with, but without playing the 'mines bigger than your one' game, mine is – increasingly annoyingly, frighteningly, never-endingly – bigger than theirs. And most people's right now. It makes that 'difference' a fucking huge chasm with me on one side an everyone else rushing about doing their thing on the other side. And cock all chance of me crossing the divide to join them, for months, if ever again.
And no, it's not to say that it was the girls' 'fault' or anything last night, and I don't mean in the slightest to do down any of the huge number of kindnesses, gifts, visits, nice phone calls etc etc that you have all so kindly given. (Although I have been told by Hawksey and Janine to say no more chocolate and sugar gifts as that's not helping the weight management. If I bury the comment deeply enough in here maybe no one will see it..)
It's the isolation. The fear. The thing I try so hard to keep pushed well away at bay but is obviously the fucking great hairy, sabre-toothed, jaws dripping, foul-breathed, ground-pawing, evil-eyed monster elephant that lives in every room I'm in, following me just to remind me how much of shit creek I am up, and that only the fit girls can probably paddle their way out of it. If even they can..
I re-did the timetable (my wipe off huge A1 2016 calendar that has all my likely treatment cycles plus H's knee replacement in may and his recovery timings on it), and yes – it just goes on forever. For sodding Ever. Again, still depending on how long it takes me to get my PP down to zero from the 2.86 it was at last count, I think I am looking at the SCT as happening in July at least. And every goddamn day is so effort right now, let alone each week, let alone the many months that still stand between me and getting home to lick my wounds post transplant.
Funk, fuckeddy fuck. I really felt I 'did my illness bit' back in 2008-9 and it is massively sucking that 2015 was the year of everything going increasingly wrong, and 2016 is now the year of trying to put things right. But with so little success at all so far. Yes, there's being patient (never a core skill as you'll know) but also the logic that after a tonne of treatment so far, and this is over more than 16 months, yes a year and a half nearly, practically nothing has shown any improvement, barring the carpal tunnel ops and the back vertaebra op. Just two small things on a long list of 'please can you fix this' – Patience is one thing, foolhardy mindless hope that never gets any rewards is another.
So yeah, feeling a bit gutted that it had to be my – otherwise pretty blessed, exciting, normal, wonderful and so much missed – life with possibilities that is now stuck here, in a world of misery, fear, pain and 'not sure just how much I'm kidding myself' hope.
I can't walk. I can't get my clothes on. I can't put my shoes onto my swollen, fluid-filled feet. I can't recognise my own shiny round foul face in the mirror. I can't predict if I can go out, or will be feeling like poo. I can't plan ahead. I can't bear being the one that has to impact on people's plans. I feel utterly on my own, despite everyone's wonderful loveliness. I can't remotely guess whether the end of 2016 will see me back to 'being me' again or if I will be on the end of a failed transplant and looking at a new horror world of 'final stage' treatments that I know nothing about right now, but sure as hell don't want to be heading towards.
So yeah, I guess no-one wants to feel different in this kind of way. It's great when you are master if your own destiny and personal style, but sitting with a canula in your arm doesn't quite rock that feeling for me.
Sorry for the monologue – the result of being awake, sweating, finding it hard to breathe with my puffy feet elevated on pillows under the duvet and having my first ever near panic attack at the puffing and panting resulting. I have however scouted some potential new coasters for the coffee table for H to check out when he finally surfaces, so the entire night wasn't lost…
Love to you all. This feeling will hopefully be 'put away-able in its box' where I try to keep it, and I'll keep cracking on, as let's face it, I've got precisely zero other options. Feeling different and Fucking cancer – yep, it's fair to say they both majorly suck.
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