Rubbish night, again. Got about two hour's kip then was up watching Let It Shine and various other bits of iPlayer late night time fill while scratching like buggery. Strange that I needed to sleep in the buff (the head covering, not the nude) as my head is now like Velcro until the last tiny fuzz goes – if I turn over, the Velcro sticks to the pillow, so a cover is required. All part of a surreal learning curve.<\/p>\n
Am still very much a head to toe Itchy Beast – funny how my knuckles are yellow while everything else is red or purple. Legs are fully deep purple. Face might be a bit less red though. All waxing and waning. Had to ask the nurse at the 2am obs check to open my Evian bottle as the little ridges in the cap dug in too much to my poor old skin. Bet this will be the last thing to resolve (well, hair excluded) as it's still pretty much furious (angry? Livid!) all over.<\/p>\n
Feels like there really has to be less than a week in here to go now. My hopeful self is thinking 'maybe it'll only be 18 days this time instead of 19 – I could be washing off this horrible time in my own lovely bath and then on my sofa and finally getting to stroke Scrumpy and Mojo, by Saturday, just maybe'. Am trying hard to be a good patient and not to bring up that conversation till they do. Clearly I will inevitably fail at this, the only question is how long my desperate urge holds out for…<\/p>\n
I managed a sit down shower by myself, then Claire dropped in this morning and I had actual tea with her.<\/p>\n
Ray dropped in while Claire was here and said 'do you know, you might be ready to go home after a couple more days'. Which could mean as soon as this Thursday!! Whoop whoop, that would be miles better than what I was anticipating. I'm trying not to get my hopes up, as the main requirements now in his terms are 'blood recovery and mobility'. Funnily enough, I'd written the para below before Ray came, but it makes extra sense now…<\/p>\n
I finally felt just about ok enough to do some very low level stuff with the physios today. They are a big part of the key to the exit door, so time to stop thinking 'last thing I bloody fancy – who wants to pedal the foot bike for ten mins in their jimjams, or roll the gym ball up and down the wall, or do sit to stand like an obedient puppy'? Answer not me, but it is a necessary evil. I'll have to be able to show I can walk up and down two flights of stairs to move forward to my passing out parade, so yeah, got to suck up the embarrassment of being the bald old bag with no breath and wobbly legs just to get one step nearer the door…<\/p>\n
Also emailed Ray's main lady Linda to get an idea of what's required in the coming months:
– how frequently I need Ray check ups and when. I think it's twice a week to begin with but need to know more
– When the monthly Dara chemo maintenance doses will start
– What other treatment is needed in the next 6 months, such as a monthly nebuliser
– And how we start trying to solve the breathing conundrum as this is still as crap as 2 years ago<\/p>\n
Every time I look down as I write this, I can see rather a lot of my peeling face, captured on my pyjama top. Crusty eyebrows, dry chunks nose, flaky forehead, desiccated ears, peeling lips, I am indeed a catch. If you like a bald overweight woman, who's purple from head to toe, swollen in parts, only managed to brush her teeth for the first time in 5 days this morning, is glowing eerily from the re-moisturising gel and now leaving a trail of dead skin in her wake.<\/p>\n
Have had two more bags of platelets today plus a bag of regular blood, which again, I think is a first. Please help keep growing my good stuff, so I can indeed get home soon.<\/p>\n
Janine and Sarah T popped in together briefly in tonight. Good to see them although the irony that usually I am out swigging cocktails with them was not lost on me, as I went mad and had not just one but two banana Nesquik milks while they were here, mostly to help get the evening tabs down my neck.<\/p>\n
Mr H was up and down as usual and took the cool box home plus some other bits I won't need in these next few days, another little positive step towards the Great Escape.<\/p>\n
Right, must switch off hopes or won't get a wink tonight. Either way, it was a magical chink of bonus possibility and will let you know how it goes<\/p>\n
Mrs Purple Peeler x x <\/p>\n","protected":false},"excerpt":{"rendered":"
Rubbish night, again. Got about two hour's kip then was up watching Let It Shine and various other bits of iPlayer late night time fill while scratching like buggery. Strange that I needed to sleep in the buff (the head covering, not the nude) as my head is now like Velcro until the last tiny […]<\/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-739","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n