Busy night, waking up at midnight, 1am then 3.20am when I finally decided to have some milk, squash and get today's diary underway as sleep is a touch elusive.
Back is very, very painful if I move into the wrong position so am debating how best to handle this with Prof. If he's making positive noises about switching the three doses of IV aciclovir to tablet format, then I don't want to rock that apple cart by adding back issues to the pile.
However, unless something miraculous happens, I also don't want to be carrying this amount of pain into the weekend. Will see what Prof says and if I can get either an appointment with the back surgeon next week (although I bet he's away for half term) or an injection or something that will deal with the pain for a decent while.
Just seen Prof: Talk about half a step forward and twenty steps back……
First of all, we have the Aciclovir conversation. It seems it's not as simple as switching from the IV format back to tablets. Prof asks me to continue on this three times a day exhausting Aciclovir by drip rigmarole till Sunday. He hasn't even read my blood results, that I oh so carefully made sure were done at 7am, so they'd be ready for his visit, but somehow he is adamant this is the best way forward.
Oh fucking great, that means 3 more shit days of being in and out of Parkside, another cannula as this one's had 3 days use, not being able to have a bath (tricky with the cannula and when only home in daytime hours, means getting up and down the stairs and having to dress/undress an extra time otherwise). And man, do I need a bath…
So now I've got H summarising the conversation with Prof, which basically make it sound like I'm making 'stroppy choices' when both Prof and H think I should do the highly sensible Fri/Sat/Sun of three more doses each day of Aciclovir. Easy for them, they're not the tired and emotional loser having to go through it all, feeling utterly incarcerated and sleep here for yet more nights.
So I make the call that even if moving back to Aciclovir in tablet format may not be as effective as the IV, I need a couple of nights of something nice, which I've looked forward to, after the hell of the last month. So, happy decision made, two nights at the cottage coming up, where I can relax, kip and will take Aciclovir in tablet format. Already starting to feel good..
But no. Ten seconds later the plan is ruined.
Every time you think you're on the up, something else somehow comes along to shit on your rainbow. Let's recap:
– I'm let out of PS post-SCT so think, great, now I can get stronger every day, then bang, along come the mouth ulcers and mucous which floor me for 2 weeks
– These finally clear after far too many miserable groundhog days of no eating, no tea etc, then bang, I get readmitted anyway, this time to get fluids into me
– I'm rehydrated after 2 more days as an in-patient and am ready to move around more as part of getting better, then bang, here comes shooting back pain out of nowhere to drag me back down
– I get given painkillers for the back pain, then just now it was bang, 'you've got to stop taking the back painkillers (as Prof has now just read my bloods) 'as you could be a day from kidney failure' (so frigging over dramatic). 'And we need to get fluids into you, give your kidneys an ultrasound' etc etc.
So now the cottage trip has gone up in a puff of smoke, I'm back in my PS bed, chained to the clunky IV, having loads of fluids for my kidneys. Ironically, the Aciclovir has shot from the 'so massively important that you have to stay in all weekend' podium to the 'you can't have any, fluid is now what matters' back seat – def not having any more today and who knows what the plan is for tomorrow. Mind fuck.
It feels like every time I manage to tentatively creep up a nice ladder towards something better, healthier and more positive, some fucking great snake is waiting right there to pull me backwards down its big slimy tail, to somewhere worse than where I started. You honestly couldn't make this shit up.
Just back from an ultrasound on the Ground floor, on my kidneys (oh what a surprise, they're bloody fine) – pretty depressing that I am now the sad looking middle aged woman with no hair, in a wheelchair. What the hell happened??!
Only good thing is that the fluids, which normally take 12 hours to go in, and which Prof promised by way of consoling the snotty crying woman in front of him, could be run over 8 hours, actually seem to be set to run for 'only' 4 hours. So I checked if there's a second bag, and there isn't.
Which means that in 23 minutes, the IV will be done. At which point they do another blood test, to see if my creatinine level is down. And we wait an hour for the results. Which someone 'in power' will at some point read and tell me if we can go home. Just for tonight. For the whole weekend. Or not at all, because that mother fucker of a snake could be slithering its 15 foot tail towards me with some other unexpected buggeration on board.
Part 2 to follow, when the shit stops hitting the proverbial…. or at least I have some idea what it smells of and which way, this time, it's heading…. x