Terrible first night. Dozed off around 10pm, always massively disappointing to wake up and find its 11.10pm and it's still the same day.. Couldn't get the bloody bed to go fully flat, so tried sleeping leaning uphill but failed. Two hopeless night staff had no idea how to remedy it, so ended up chucking pillows to the bottom of the bed and trying to kip with my head flat and feet slightly up in the air. Verdict: 3 hours sleep.
Woken 6.30am to get into the ever strangulous hospital gown and to get wheeled down to Theatre 1. Sadly not showing a nice new musical, unless the sound of me saying 'lots of sedation please' counts.
Had my neck line put in at 8am. Luckily the chap whacked two stinging local anaesthetics into my neck, as the post-procedure words 'hmm, the IV sedation didn't seem to work for you, even though we used three doses' aren't exactly comforting.. I now have one entry line in the right side of my neck, with 4 access tubes sprouting charmingly from it. So far these been used for both 'in' and 'out' processes, i.e. Taking blood and giving me the anti-emetic (stop you puking) drug, steroids and massive bag of saline before the Melphalan is given.
It's now 12.30 and I'm sucking on ice cubes and fruit ice lollies for 20 mins before the Melphalan is hooked up. The theory is that the cold restricts the blood vessels in my mouth, so less of the Melphalan will get there. Hopefully meaning less breakdown of the good bacteria and a lower likelihood of me getting the horror mucositis this time.
I also have 4 different types of mouth protecting stuff 'swill and spit this one, swill and swallow that one, spray this one' – plus toothpaste and dental sticks – all to be wielded 4 times a day. If that doesn't work, my gob is clearly where bugs and bacteria go to paaaaarty.
The pain management chap Paddy has been in. As has the nutritionist lady, as there's a load of stuff I'm not allowed once my neutrophils (immune system) drop – soft cheese, seafood, salad, fruit, pate etc, which then extends to weird stuff like slush puppies, baklava, Mr Whippy and Bombay mix (?!) once the neutrophils get totally wiped out by the evil chemo. Shame, I was just looking forward to a shawarma, stuffed vine leaves and some olives – not!
It's now 2pm and I my insides are now the new home for a large black-clad, Grim Reaper bag of Melphalan. Main question in my mind is how long it will take for my hair to start to fall out. You know it's going to happen but there's still something so odd and surprising about rubbing your head and finding a fistful of hair in it. Bollocks, shit, piss, not looking forward to that in the slightest. I suspect final hairwash and dry will be tomorrow but we will see.
And to add insult to injury, the main course option for dinner today is bloody liver. WTF? Wonder which floor of the hospital they harvested that from….. Goats cheese and spinach parcel for me, can't believe I am reduced to the veggie option but liver is second only to kidney in the gross meaty stakes.
Had a short kip, but having to wee every hour due to the vast amount of liquid still being dropped into me. And I have to measure all liquids in and out. So far I am on average a 450ml girl, by the time I finally drag myself into the bathroom. Am aiming for a 600ml horse pee at some point but not brave enough to wait that long so far.
Physio has also been. Bringing a mini cycle with her that I am meant to sit in a chair and pedal three times a day. Just need to get off the IV as of course I can't actually reach the chair from here..
H came back and we walked up and down the corridor, did the stairs twice and then 10 mins on the pedalling machine. Trying to keep a small degree of fitness, though it's amazing how you can feel weaker after just 24 hours in bed.
Apparently there are 4 hours worth of fluids to be pumped into me from 9.15am, before the stem cells are returned from around 1.30pm, which should take around 4 hours as well, as there are 8 bags of the little suckers to contend with.
My first non-marital visitor is due tomorrow eve – major hurrah.. Need some entertainment, even if it's what you've just bought in Waitrose or something equally thrilling. The captive audience awaits! X
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Kidney defo worse than liver. Not sure anyone would want to eat MY liver tho.