Phlurgh.
\nIt's funny how the impending week off treatment – there's a break in the cycle – feels like an annoying waste of time rather than a nice little break.
\nI am very fed up with where things are at. 5 months into chemo and my Paraprotein score is the same now as it was in bloody March. The new drug might be working or might not be working, there's actually no way of knowing as its role isn't to bring down the PP, but to provide longer progression-free remission. But no one knows how long you need to take the drug for, to max your chances of a longer remission, so there's no way of knowing when enough is enough.
\nI feel revolting. Fat, uncomfortable in my skin, uncomfortable in my clothes, uncomfortable in my house as we are a month into 3-4 months of building work and the place is a veritable shithole. And grummmmmmmmmpy. Feeling sick of feeling 'different' – the C word and all its threats are never far from the front of my mind and there's no sign of me being able to put it back in its box for at least 6 months, what with more treatment and transplant still ahead, if I can ever fully wrap it up and put it away ever again.
\nHighly likely that I will need what is called 'maintenance' treatment even after the damn transplant, this is basically being on chemo forever. Maybe at a reduced dose, maybe the same dose less frequently, maybe some other kind of set up. But not being able to go 'yep, that was a shocker of a year but it's past now' – ever. Won't know the ins and outs of this till a few months time but it's a miserable cloud in the horizon already.
\nWill be talking to Prof on 18\/19 July re moving forward towards transplant and stopping chemo. Hopefully then we can get a bit of a timetable sorted do Aug, Sept, Oct etc can at least be part planned. This bloody hanging around middle ground is shitsville and I've really had enough.
\nBored, pissed off, hot, fed up, frustrated and generally out of sorts. Would bite my arm off to be getting up tomorrow to face an 'average week at work' rather than my lonely shitty isolating never ending incurable parallel crappy universe.
\nHave been so patient and for what? All this week heralds is some facet joint back injections, more waiting for more useless inconclusive tests from the ineffectual lung\/breathing chap and clawing my way 7 days closer to seeing Prof again and hopefully moving forwards – into the shitty hell that is Stem Cell Transplant land.
\nNot much more to say really. No need for any of you kind readers to do anything, just wanted to tell it like it is, because this really is how it is, living with this.
\nNight all, must be the football making it worse, this Euro thingy was a shocking waste of a Sunday night….. X<\/p>\n","protected":false},"excerpt":{"rendered":"
Phlurgh. It's funny how the impending week off treatment – there's a break in the cycle – feels like an annoying waste of time rather than a nice little break. I am very fed up with where things are at. 5 months into chemo and my Paraprotein score is the same now as it 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-812","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n