Stem Cell Transplant Journal Day 4 – 4 December 2015 (Cancer and Me 45)

My sleep last night was even worse than the previous night. I can’t really understand it. The bed is comfortable, the room is fairly quiet, the nurses are not intrusive. I wonder if it’s just psychological, knowing that I’ll be woken at 2am and 6am and so I’m kept awake waiting for it to happen? The nurse this morning said it was due to “just being in here!” That’s also probably true.

But on the other hand, I can remember during the night thinking of the mild sickness I’d felt in the evening, knowing it will get worse over the next few days. “What have I let myself in for?” I was thinking, and then having to tell myself I didn’t really have a choice. Still, I wanted to cry out those immortal words…. “I’m a celebrity, get me out of here!!” Stop the train, I want to get off.

And again, in the cold light of the morning, I got a grip. I have to do this. It’s the only way to have a chance to avoid more disruptive and increasingly serious relapses in the future. And I’m in very good hands – in both a medical and spiritual sense.

The routine was much the same as yesterday, and it will be the same tomorrow and Sunday, from a treatment point of view anyway. Cytarabine in the morning, then Etopiside, a couple of hours break, have dinner, have some more free time, then more Cytarabine to finish the day off. Heidi came to see me as usual, and stayed a few hours. When she left at 2:30pm I wanted to go to sleep, but things kept getting in the way. Nurses changing the bag of Etopiside on the drip, flushing it through later as well; the tea lady; the nurse doing ‘obs’; then by the time all that was done and I got disconnected from the drip it wasn’t worth going to sleep before dinner, and I didn’t feel like sleeping any more anyway.

Hospital food, by the way, has been pretty good. Very tasty in fact. I know there will be days (in about a week’s time) when I won’t feel like eating. So I’m taking the opportunity to sample the menu now! And there is always regular tea and coffee on offer, for both me and any visitors I have (which so far has been only Heidi).

I have to keep a record of what I drink, and only pee in bottles, so that they can monitor my fluid intake and output. They look at my weight daily too, mainly to make sure I’m carrying the right level of hydration.

The other thing I have to do is to use two different mouthwashes four times a day to try and prevent ulcers when my immune system dies. There are also funny rules about running the shower for 3 minutes before I get in (to wash away any bacteria hiding in the nozzle), and I’m not allowed to wet shave. I have to use an electric razor, because my platelets will be so low next week that I will have a high risk of bleeding and bruising from the slightest knock.

I also have to enforce my neutropenic diet more strictly than ever before. Basically that means acting as if I’m in a foreign country – boil/filter the water, don’t eat fruit with skin on it (like unpeeled apples), don’t eat salad or anything off the delicatessen or sandwich bar – as well as avoiding potential salmonella sources like raw eggs and unpasteurised milk/cheese/pate, and pro-biotic live yoghurts.

And in case you were wondering, I have been doing those daily exercises the physio gave me, and going on the exercise bike for 10-15 minutes. I’m really conscious of trying not to sit in the same position for too long, especially as I know that I’ll not be wanting to get out of bed much after this time next week.

So far I’ve passed the time conversing with Heidi, keeping up with messages on facebook and email, writing this journal, writing my book, watching films and re-watching my ‘Walking Dead’ DVDs, as well as finishing my monthly business accounts and doing some online Christmas shopping!

It’s hard to believe I was at work on Monday morning, and it’s only Friday, but it feels like I’ve been in this room for ages. And I’m not even one fifth of the way through this adventure.