Hi everyone, I hope you’re all doing as well as can be. Today is my Day 520 or now officially Day Zero, today I get my stem cell transplant and expect to be rough, I am preempting this and writing it yesterday as I’m just going to take it easy and do as little as possible including thinking, hopefully I’ll be in a state that I would have been able to write this but I’ll not know until now which is too late as I’ve already got it completed and posted.
Anyway jumping back into history and having a look from last Wednesday… Wednesday came and went and nothing more. Thursday was a fun enough day, generally they’re not bad, busier than at home with people in and out every few hours doing one thing or another, even at night. I haven’t been sleeping well, probably with a load of different things, change of room, room temperature, noises, lights, interruptions and I’m sure I have a worry subconsciously as well of what’s ahead, and all the drugs too that I’m on and the new ones too.
Most of Thursday passed with nothing too much to report, early in the day I was told that the doc had asked for my height and weight which is what they need to order up the chemo so it looked promising from an early stage but waiting and waiting and nothing so may just have been nothing more than getting the info for another time. That is until about 4 the doc came in and went over things and got the consent forms sorted and a rough long term plan, loooong term plan. I thought 4 was a bit late to start chemo but shortly after he left the nurses came in with it and got it started by 4.30, it only runs for 30 mins so not a long infusion and then the flush after. All went grand no issues with it and all fairly comfortable. And so that was day -6, 5 days of the fludarabine, 1 of the melphalan then the stem cell transplant on Day Zero.
I asked about removing the dressing on the failed picc line earlier in the day and the nurses said it would be ok. I left it until the evening and had a good wash and went to peel it off but the scab had hardened into the dressing and came off too and started to bleed. I called the nurse who ermm overreacted? She ran out and said to the others that my picc line was bleeding and caused a bit of a panic, a more senior nurse came in with some more gauze and I put pressure on it just after she realised that it was the failed picc line rather than the actual picc line and really not that big a deal. I kept pressure on it for a while and the nurse came and put a fresh dressing on it, again more pressure and kept the arm raised and all seemed to stop ok.
Friday I had the fludarabine again, although slightly earlier at 2, Similar on Saturday and again Sunday. The chemo I haven’t noticed much from, I’m eating and drinking ok and not feeling much different from normal, so I don’t seem to be reacting badly to it at all, the melphalan though I’m expecting to be different, I had that as part of my BEAM conditioning last transplant and that was the one that wrecked my tongue and all that carry on. That was unpleasant, losing appetite and not being able to eat for a while. The pictures I have of my tongue you really dont wanna see. Hopefully not be as bad this time though but will take it as it comes.
Sunday after the chemo I said to the nurse about the dressing that it appeared to attached to the scab again and so if I was to try and take it off it’d bleed again so I got them to do it and well, they didn’t really put any extra care into it and took it off with the scab and started bleeding, but a bit of pressure and then a decent dressing put on it and that was that, for now.
During the night I was sleeping a bit better than I had been, got up to go to the loo a few times as usual and the general noises and interruptions but all ok. I did notice I was a bit sweaty under one of my armpits or I thought I did, an hour or two later I noticed I was quite sweaty and it was a bit dark to be sweat. I went into the toilet to get a good look at it and it was definitely blood. The bandage was soaked through and had seeped onto my shirt too, I was lying on my left side so none of it went on the bed and just the shirt. I called the nurse and they came in and took off the old bandage and put on the compression tape to try and stem the bleeding.
Monday I got my chemo again. Everything was grand with the arm until I got up and moved around and started to bleed again, I could see on the bandage a bit of blood coming through and when we opened up the compression tape it was all drenched again. They ripped off the tape maybe a bit too enthusiastically and ripped off a load of skin and left a bit of a bruise too, it was pretty sore though where they ripped the skin off and has been seeping fluid since but starting to harden now and looks more of a cut, not as bad as the hole in the arm though. They put on another dressing and compression tape to try and stop it again.
Tuesday things are a bit different, I’m on the melphalan, a much stronger chemo. I was woken up and put on fluids to prepare the kidneys for the chemo later. That went in over a couple of hours and I went on the bike to get my daily 30 mins while I knew I could, I’ve been reading The Jungle Book while I've been on it. I got to 21 mins and had to stop to get blood pressure etc done but by the time I got back to the machine it had whipped the data so I started again and did another 30 mins to get a picture of that. The other 20 minutes doesn’t count. I got a new bag put up and was given the diuretic, start of the run to the loo, although it needs to be measured, so rather than unplugging and moving everything out of the way to go pee in a bottle in the bathroom the nurse just brought the bottle out. I am in my own room after all and ended up going every 10 or 15 mins for a while. So it would have been annoying going in there all the time. At about 1130 I got the chemo, it was only going in over 30 mins, not long, but it was referred to as paintstripper. Felt the build up of water in me though which is uncomfortable, but not too bad.
After all that I got another bag of fluid and my picc line changed, all working well. The nurse had a look at the failed picc line that had been bleeding and took the dressing off, the bleeding had stopped and scabbed over this time and no blood about, looking good. After dinner and off the fluids now she came back to change the 2nd lumen. She asked about the small dressing she had put on the right arm and I’d mentioned about having to be careful with it that if I was to move too fast or tweek it it might open up again. She had suggested putting on a bit of compression dressing just to be sure it doesn’t leak overnight and thought that was probably a better idea rather than just a small bit of gauze which won't help if it does decide to bleed again.
As Tuesday went on I just got more and more drained and so a lazy night sitting watching tv and dozing off. I may even just stick on a film so I don’t have to change channels or streams, that’s the plan.
As I’m writing this yesterday; tomorrow, today, Wednesday is Day Zero, transplant day so here goes, something to do, it’ll pass the time and keep me busy for a while, I’ll not say it’ll keep me out of trouble nothing ever does. I’m hoping for the best but prepared for the worst, but I'm sure it will be somewhere in between, I’ll take it as it comes.