Sunday 11th April 2021
Home From Home
Hi everyone, hope you are all keeping well. Things didn’t quite go to plan, which is pretty normal, my tummy had been playing up a bit since the Thursday before I wrote the last post but nothing too bad just a bit uncomfortable. Monday evening I got home home which was nice being able to relax properly on my own sofa and in my own bed. Tuesday I was having a lazy day to settle in a bit and things were going well.
After lunch though things started to change my stomach started to get really bad and I think by 4 I was up in bed and running to the loo way too often, the uncomfortableness turned to pain. I had an appointment up at the hospital the following morning so decided to wait till then and by that stage I hadn't had too much sleep and had lost a lot of fluids and was completely drained and out of sorts. It was pretty obvious to look at me that I wasn’t right.
The doc wanted to keep an eye on me and get fluids into me as I’d lost another 5kg in only a couple of days. They ran a few tests for infections, viral and bacterial, by Thursday the bacterial ones had all come back and with no one else showing any signs they had pretty much ruled out any viral infections which would leave a graft vs host reaction. This is normally accompanied with a skin rash and doesn’t happen by itself but then when do normal things ever happen to me!? And so they went ahead and treated it as GvH and gave me a bunch of steroids and wanted a biopsy done as well.
The next morning I had the biopsy, wasn’t peasant at all and glad it was over and done with pretty quickly the results won't be back for a week or two though. The Doc said that by the looks of things it’s quite likely to be GvH and nothing else and so they’ve kept me on the high dose of steroids since. They haven’t been too bad on me, I’m a bit restless and not sleeping great but then I’d probably be like that anyway here as apart from the runs I’m feeling pretty much ok. The time between having to go to the loo has increased and the pains aren’t as bad but still get uncomfortable when I need to go to the loo.
They are still keeping an eye on me but things are improving, I’m hoping to get home soon, the next day or two but I’ll not hold my breath, they may keep me here till things settle completely and not really sure what the plan is with the steroids and tablets and what way that’s going to work as the steroids are currently IV, obviously they can change them to tablets though.
Again apart from that very little is happening, I’ve just been watching tv and a little bit of reading, catching up on shows that I’ve recorded on the box but obviously Friday screwed up all my series links and didn’t show the shows, so when they’ll be repeated I’ve no idea or unless they show them next Friday, I dunno.
The room I’m in in hospital is at least three times the size of the room I was in the last time but it’s all a lot of wasted space that you can’t really do much with, the view is into the courtyard where people just go to smoke so not much of a view and only the paid tv which doesn’t really matter as I just use the laptop and tether from my phone. I upgraded my contract to 5g, no extra cost and there’s only like 2 places in NI that actually can give me 5g but at least when it does roll out properly I’ll already have it set up. It has increased the speed of my 4g+ though up to 80Mbps so that’s something at least.
Anyway not much else to talk about apart from the IPL starting up again which has been fun enough so far, so something to watch in the afternoons.
Hope you are all doing well.Monday 5th April 2021
Almost Home
Hi everyone, how are you all keeping? Tuesday was my second visit up to the hospital and the counts have stayed stable and seem to be settling, I thought that at one of the visits I would have needed to get platelets or even RBCs but thankfully that hasn’t been the case. This has meant they’ve just pretty much been similar to the regular checkups that I was getting before. Getting the bloods taken and then waiting out in the car till it’s time to see the doctor.
Tuesday was much busier than the Friday and seemed to take forever to get the bloods taken but this was made up for by not waiting as long to see the doc, normally it’s about an hour for that but wasn’t even 30 mins this time. The fitness is getting better, but still not great, stairs are the main issue, I seem to be mostly ok on the flat, but there was one time going to the house when I was carrying a bag and noticed a big difference from when I wasn’t, it was a lot more tiring, even though there wasn’t much in the bag. But that will improve considerably once I get home and start on the treadmill and exercise bike a bit and build it up.
It has been nice sitting out in the garden and bit and getting fresh air, I’ve not really been able to do that since last summer, but at the same time I’m not overly keen on the sun so I’ve still been wearing a jumper and hat to cover up and keep it off me as much as possible. Apart from that I really haven’t done anything at all. I’m sitting around like a vegetable but again once I get home I’ll be able to do my own thing. I had planned to go home on Saturday but apparently it’s bad luck so I’m assuming it’s bad luck to go home on the weekend so I’ll be going home on Monday. Saturday I had a Tesco delivery so I was able to get home for a while and sit there waiting for it to arrive which was nice getting a bit of peace and quiet.
Really have little else to write about so I guess that will do till the next time.
Hope you all keep well.