Forgot to say yesterday that Prof continues to be happy with my post transplant scores on the doors. No sign of the paraprotein in my bloods but a slim band of Dara (the good drug) can still be seen, which is what we'd like. All a bit weird really as while the first transplant was all about getting my PP down from 8 to zero, I went into this one with a PP of zero.<\/p>\n
So what we are hoping it will do, is to keep me in 'remission' for as long as possible. Which is, with luck, a long game to watch and see what happens. No discussion yet as to me starting Dara as a maintenance drug, the current focus is getting this back problem identified and treated. Good job too as there's no way I could sit in a chemo chair for 6 hours to have Dara, until the back is better.<\/p>\n
Feels like SUCH a bloody long haul. 2 years of shit health, undergoing the transplant and now crawling out of the back end of it, not into new good health, but into this unexpected back problem instead. And now it's the 1st March and only today is the back biopsy going ahead.<\/p>\n
Just had my 'light breakfast' and am now on water till the procedure goes ahead around 3.30\/4pm this afternoon. God I wish all this hospital shit wasn't my life, as soon as you get anywhere close to 'being better' the bloody goalposts shift backwards again – like now, with the back stuff – and another month, or longer, gets added to the endless list. It's definitely time for steps forward, firstly hopefully the back and then more strengthening and overall fitness once the back is under control and I can walk and drive etc again. And then we tackle the breathing, that one's firmly on the back burner till I can move fast enough to actually trigger the breathing, and then do something about it. Still hopeful, despite the last 2 years of sweet cock all progress.<\/p>\n
So, hello March, let's see if you can step change matters.<\/p>\n
Got a lovely letter from our Harrogate chums just now. Funnily it picks up on just this, how long everything is dragging on for and how hard it must be (and is) to keep dealing with it all. Thanks Mands, you've got it exactly. And very good to hear other news from 'up North' – delighted things looking positive on all fronts for the extended Brigham families.<\/p>\n
Now perched on the bed at Mount Alvernia, waiting for the biopsy procedure to get underway. Feeling really antsy as remembered that this is where I had an anaesthetic that made me scream when it went in – I thought they'd missed the vein, it hurt so much. Anaesthetist is running late… my paper pants and I are not happy.<\/p>\n
6pm – biopsy done at last, I have rather a sore back but am making up for it with biscuits and tea before the recuperative tuna sandwich gets delivered. As ever they catch you out with shit that's nowhere to be seen on the arrival instructions 'oh you'll need to stay 4-6 hours afterwards as you've had a general'. Sod that, we'll be off by 8pm I reckon, once I've eaten, peed and ripped out my own cannula if needs be.<\/p>\n
Bloke said he doesn't think anything will get cultured in the next week – he's still in the 'you've got degenerative disease' camp. I'm thinking infection is now an appealing option as it can be treated and could go, unlike degenerative disease. Will keep you updated as soon as I hear.<\/p>\n
Oh and today's 'surprise surprise' email has just come from Linda. I'm now seeing some rheumatologist called Axford at Parkside tomorrow at 9.20am before seeing Prof at 11am. Good job I haven't got anything else booked in, beyond watching yet another dire episode of Homes Under the Hammer…<\/p>\n
On that note, if anyone's around for a cuppa at some point do let me know. I've been a bit hesitant at asking people to come but I'd love some visitors in the morning or afternoons. Diary empty, roll up and see the baldy x <\/p>\n","protected":false},"excerpt":{"rendered":"
Forgot to say yesterday that Prof continues to be happy with my post transplant scores on the doors. No sign of the paraprotein in my bloods but a slim band of Dara (the good drug) can still be seen, which is what we'd like. All a bit weird really as while the first transplant was […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-710","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n