Stem Cell Transplant Journal Day 2 – 2 December 2015 (Cancer and Me 43)
I slept ok on and off on the first night. It was pretty quiet, thankfully. And the nurses decided not to do their normal 4-hourly observations since I’d come in so late. Normally they do ‘obs’ at 2am and 6am, so I’ve got that to look forward tonight. But last night they let me sleep through until 8-ish. I was grateful since I didn’t settle down until after 1am after going through various booking-in routines.
In the morning I sat around wondering what to do for a while. They’d given me a bag of saline on the IV through the night, and that didn’t finish until around 9am. But I needed to be disconnected before I could have a shower, and they had to show me how to protect the end bits (lumens) of my Hickman line.
Sounds great in theory – they put the end bits of the line in a press-and-seal plastic bag, then tape the bag upside down on your shoulder. And then you get in the shower and of course it stays fixed in place while you wash yourself and the lumens are protected…. Except it didn’t quite work like that in practice! In practice the bag fell off after 2 seconds and would not stay on however many times I tried. So I just gave up and tried not to get it too wet.
Heidi came to see me for a few hours, battling the traffic again and the queue for the car park. She finally sorted out some long term discounted parking for the month I’m here. That will be £48 for the month – without that it would have been over £200 (which would have been on top of the £300 petrol costs for Heidi doing the 85-mile round trip every day).
The physio came to see me to give me my daily exercises, so that I don’t physically deteriorate too much stuck in my 8 by 10 room. And I managed to get hold of an exercise bike in my room, which will help me keep the muscles moving at least when I feel up to it.
I had a variety of pills to help manage side effects, and an injection of something to prevent excessive clotting. Once my platelet count deteriorates I won’t need the latter, as the risk will reverse to one of bleeding and bruising excessively.
Oh yes, and I mustn’t forget the first load of chemo! Carmustine. It came about 2pm and took an hour to go through. I slept the whole time, for about an hour-and-a-half. Apparently that is one of the immediate effects of the drug. I was very groggy when I woke up.
Perhaps it’s worth recapping exactly what this stem cell transplant involves, for new readers or those who missed my waffle in previous posts. I’ve included a diagram. Collection, processing and cryopreservation were the steps that happened in 2013, when I had the stem cell harvest.
This is, as I mentioned in a recent post, an autologous stem cell transplant. That means that the stem cells that will be given to me will be my own, ones that were harvested while I was in remission and put into the freezer (as my consultant puts it).
To confuse things, the medical team talk about the transplant date as being ‘Day Zero’.
Before getting to Day Zero I have to have high dose chemotherapy – what my doctor in Basingstoke described as a ‘lethal dose’, in other words it’s such a high dose that my immune system will not be able to recover on its own. That chemo takes six days, so today is Day -6.
I have written the schedule on the whiteboard in my room (and taken a picture of it!)… unfortunately I’m having problems uploading photos to the website, but when I do finally update this post with the picture you’ll notice that I haven’t put anything after Day 2, because it’s all recovery from then on. I get to go home when I’m eating and drinking without help, when my white cell count is on its way back up, and when I don’t need IV antibiotics. So I don’t want to get any hopes up. The normal stay is 22 days altogether, which would take us to the 24th December. But even 24 or 25 days would not be bad going, even though it’s the difference between going home before or after Christmas. Just need to take it day by day.