23rd May and crawling forwards..

So here's a pretty typical day:
– up and dressed, feeling bit zonked from another pants night sleep
– stuff 20mg of Dex steroids down throat before 8am plus rest of tabs to ensure no delays with chemo today
– check H has what he needs so he can install himself downstairs on the sofa – knee ice pack and bucket, iPad, phone, drink, tv controls, Decanter magazine, padded knee rest etc.
– drop prescription request to GP as helpfully some drugs come from PS but others have to go via NHS, a ball ache to keep on top of it
– bloods, canula, pee – make sure ok to go ahead with today's treatment
– see Prof. Talk about breathing issues for the 1000th time, I see two other consultants this week but hold out little hope of them getting inspired with an actual bloody way forward. Feels more like they are just reaping in their consultation fees… But will pressure them as its beyond a joke and something has to change
– see Prof who says that I will prob need 4 lots/weeks of the new US drug to see a drop in my PP. unusual, as most drugs have a slow but continual effect. Still, if this drop could be to something less than 1 point, it would be worth waiting for.
– install myself in the Chemo Lounge, have tea.
– nurse whacks in canula on try 1, much better than the 3 huge gougings they inflicted last Mon, will try and get the lovely Christine again
– spend couple of hours sorting 2016 photos across old PC and MacBook. Old PC eventually dies and memory stick mysteriously fills up even though I am deleting all photos as I go … Am sure there's a better way of doing this – any ideas?
– realise have cocked up on my chemo visitor as she thinks it's Tues, and with good reason as my email was chemo brain unintelligible, sigh
– manage not to eat her piece of cake as well as my own with afternoon tea
– amazed to escape by 4.15, better than 6pm last week
– take Scrumpy to vet. She refuses to go into the examining room and does 'dead dog' impression brilliantly, then squirts wees with abandon. Paw is fine.
– refill H's ice, drinks etc, he's doing ok but it's going to be a long recovery just as they explained it would be. Massively regretting accepting the 8.30am hydrotherapy appt. tomorrow, waaaaaay too early
– J brings dinner round, bless her. Delicious porky paprika little number to which I manage to attach 3 jacket spuds, get me and my hostessing
– I feel bit miserable, body just doesn't feel like your own when on treatment and I have no idea if the greatly hoped for Miami trip is going to happen (and go well, not with me scared every day that my health will go tits up or being unable to do any of the things we so treasure) or if it's pie in the sky. And it's only three weeks away. Could be the best perk up in ages or the most foolish decision I ever make, impossible to know yet
– another crappy sleepless night. Try Breaking Bad, not sure I fancy it. Tried The Killimg in English only to twig halfway through Episode 1 it was a translation of the possibly better Scandi series I've already seen. Started The Good Wife – haven't seen the lead woman since she was George Clooney's love interest in my adored ER. That might have potential.
– got worried that no time to make lunch tomorrow as busy morning – went down and chopped a butternut squash and prepped it for roasting, first time I've hit the kitchen at night (other than to make saddo hot milk and pinch a choc from the inside fridge door)…
– and here I am now, 4.19am, updating this puppy….
God I want my life back. I am treading water and have been for about 18 very long, hard, frustrating, scary months now, since my bones, pain levels and overall health degraded. It's month 4 of chemo now and that doesn't help, obviously. And still a very long way ahead with no guarantees of changing my breathing/energy situation (biggest issue right now as it holds me back from so, so much – even climbing the stairs is again a big effort) or getting back to 'proper health' post SCT.
Each day feels so long and there are a lot ahead. Know my only choice is to keep on, keeping on, but it's bloody hard. Even nice things lack their usual flavour – am seeing the hockey girls this Fri but am more worried about being on form, able to join in naturally rather than feeling distanced by my shitty situation, able to stay up long enough for our 8.30pm booking, able to meet Soph's new 25 year old girlfriend without feeling either like her mother as could be expected (or her granny, as I actually feel!) etc etc… Nothing is simple any more.
Sigh. And back to The Good Wife, will bring all those ER memories flooding back, nice X