Wednesday 17th February 2021
Day 520
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.
Until next time...Wednesday 10th February 2021
Go time?
Hi everyone, and to the story called life continues, back to Friday I guess, all starts getting a bit lost in the fog from here on in. The x-ray came back and there were no new fractures, it did show an old fracture on the right hand side which I never knew about, can’t even think of what it could have been. So that rules out the pain being a clot, pericarditis and a fracture, the major things. The next thing they had mentioned was another MRI of the heart but one doc was going to speak to the other about that. And later the other doc came round and was saying that he was happy to go ahead with Monday and asked if I was too, which of course I am, I’m only reducing the colchicine because they wanted me to. And so the other doc is going to speak to one doc.
That was pretty much the last I heard for a while, on Saturday while I was at the toilet apparently the doctors came round, I generally don’t take long on the toilet so pretty annoying. But the nurse told me they had said they didn’t want me to go home as I was still having the chest pains which is a bit annoying as the chest in reality is not the main source of pain as my back is much worse but as it’s caused by the drug they want me off, which is no longer the case, it’s all a pain in the ass, actually chest but incredibly irritating. I can understand them being cautious, it would have been nice to have actually been told this though and maybe discussed that I’d probably be safer at home for a few hours than in the ward with so many other people, but hey ho.
Sunday morning came and a nurse came in to tell me that my bed is ready for me and they need a couple of tests done before I’ll be able to move up once I get the all clear, I’d mentioned about getting home for a couple of hours to get everything all organised, but thinking about it while she was away I didn’t think they would as they do the test, I go out and it pretty much nulls the test, so I doubted I’d get home at this stage. Which is grand it just would have made things so much easier than explaining to someone else where and what I’m after and doing.
This turned out to be the case and I wasn’t able to get home, but at least I was told this time and not left in the dark. In the afternoon I was moved up to my room, it’s a mirror of the room I was in for the last transplant and it looks over North Belfast, last time it was over East which was nice as I got a bit of sun in the mornings and was able to see places I knew a lot better. North Belfast I don’t know quite as well but at least there’s always something going on with the motorway and trains and pretty much always flashing blue lights somewhere.
Nothing much else happened on Sunday, I was just getting settled in and hadn’t heard anything new. Monday I finally got some proper information, I won't be getting the MRI, the chemo won't be as bad as the BEAM chemo I got before but the whole procedure will probably be worse and I’ll probably be in longer and there are a lot more risks and test that will need to be done, aftercare will also be a lot more rigorous as I’ll at least have to come to hospital twice a week for a considerable amount of time, and then a long list of things that can go wrong or more not smoothly rather than wrong and then thing that can go wrong, knowing me a few of them will not go to plan.
I wasn’t convinced about the sugar coated “It won't be as bad” and “you’ll only be in 3 or 4 weeks”. I had imagined it would be worse than the last time and be longer and best case scenario the whole procedure was the exact same, I’m older and my body has been through a lot more and will take it longer to recover and that is even without the added risks of it being someone else's bone marrow. But that’s all ahead and I’m ready for the challenge, what I’m not ready for is doing a video call with my mum to get my stuff organised, that is going to be annoying as hell. It turned out it wasn’t that bad, although my mum thought that everything I mentioned I wanted up straight away which wasn’t the case and wanted it in cycles so there are 3 sets of clothes, one of which will always be up here, which I have and we can cycle them around to get them cleaned. And some nibbles and drinks and to clear out any food I had, a fair amount was all pretty much fresh for this week which I didn’t get to eat.
Tuesday morning the physio came to get some info from me, nothing really new except that I do a lot more than I should with my osteoporosis and wasn’t even going to mention the avascular necrosis or history of pericarditis and ITP, I’d be made so sit still all day and not move. Now I have an exercise bike in the room with a lovely view over North Belfast. Not allowed to use any resistance, normally, nevermind when the treatment starts and not allowed to go on it for long periods. By her estimate I wouldn’t be able to go on the exercise bike for the length of time it took me to cycle to work, nevermind the added risks of an actual bike rather than an exercise bike. The main thing for me is that I'll be able to get on it and be able to get a bit of circulation and warm my feet up a bit more rather than having cold feet with sitting around so much. She also gave me a couple of other exercises and told her about my back which she’s going to have a think about and see if there is anything that could help with that.
Tuesday afternoon came and it was PICC line time, it was initially booked for 3.30 but at 12 just as lunch was arriving they came to get me, when going through the paperwork they discovered I had clexane that morning and they have to wait 6 hours after that before they can do any work, but we got the paperwork all done and I have to go back again later at 3.30…
One of the staff on the ward saw me coming in and asked me what I wanted for lunch as I had missed it, I’m not much of an eater and knew there wouldn’t be any hot food and the sandwiches aren’t the greatest here, I spoil myself at home. I’d told him a couple of jelly and a round of toast would do me and he comes back with 2 rounds of toast and spaghetti, gotta say probably one of the nicest meals I had in a very long time. It. Was. great!! And devoured. I fell asleep and then went back down to get the PICC in, was straight in and on the bed, they started and all was going fine until they were putting the line in but with whatever way the vein is it kept making the line turn back on itself. They tried over and over, putting me at different angles to try and open it up but nothing was working and eventually had to go to the left arm.
Everything got switched round and found a couple of really good veins to use, but ya know why would I make it easy for them. They couldn’t get the needle into the vein, after a fair amount of time and multiple attempts it was finally through, all they have to do now is get the line into the right place… and bingo, that was the easy part. It was the most work they had done in a very long time, they did warn me earlier that I better behave myself and I warned them that I would but my body rarely listens. But at least with it going into place so easily on the left arm to me it seems promising that there won't be any blockages or kinks in the line and will hopefully work really well. Despite the hiccups it was all quite entertaining and I even got to see a nice sunset my last for a while as this will probably be the last time I’ll get out of my room for a while.
Just as I was getting back to the ward dinner was coming round, I ordered turkey leg with stuffing, mash potatoes and gravy also very nice, I hit it lucky today food wise. The hospital food isn’t bad and very edible, it’s just not as flavoursome as the stuff I would take at home and just tastes a little bland. But we spoil ourselves, especially me as I’m not much of an eater and need to give myself incentives to go to the bother of making something to eat. Otherwise I just wouldn’t bother.
Tuesday evening I just played on the computer with the tv on in the background, I had the football on for a bit but seemed a pretty boring match so switched it over, sleep wasn’t too bad, still getting used to the different bed and room but was a bit of a broken sleep.
And finally now to Wednesday, so far nothing has happened, I expect the docs to come with the consent forms and then the ball to get rolling with the new chemos which I’ve been told, if correct are fludarabine and melphalan I’d say in drip form. So just have to wait for that, I’m in the right place and the ball is about to get rolling which is daunting in a way I guess as I know the next while is going to be rough but I’m looking forward to it and the challenge.
Until next time.Friday 5th February 2021
Ups and Downs
Hi everyone, I wrote some stuff the other day but I ended up just deleting it but I’m pretty much gonna regurgitate it today. I’ve been reducing the colchicine for the last while and seemed to get to a point where it was starting to have a physical effect on me. Last Wednesday my heart rate was very high and rather than waiting the 3 days to take the colchicine I did the 2 and a half and took it on Wednesday evening instead, it did seem to ease the heart rate a bit a few hours later and so the next one would be due Saturday morning. When I woke up on Saturday I was wrecked with a sore chest and sore back. The back I’m not overly concerned about but the chest I am, more so than most things, it’s very similar to some of the pain when I had the pericarditis but I’m not having the numb arm or sore neck which is obviously a good thing but the tight chest is concerning.
I’ve never really had heart issues and it’s not something I’m comfortable with, who would be really. I worry about it more than anything else I suppose. So by Wednesday I had reverted back to the colchicine every 2 days as things hadn’t improved much or at all and I didn’t want to take any risks so I phoned the hospital, one as we had never discussed what to do if I was to get the symptoms again and two I didn’t want to leave it to next week and screw up the plans for the bone marrow transplant. They wanted me over to have a few checks, which was grand although I wasn’t really expecting to stay in but I brought stuff just in case, using my fancy new bag with wheels!! I’m very pleased I got this. I wouldn’t have managed to carry my stuff in with my back and chest.
So I got an echo completed and all looked to be fine and the same with the x-ray, it didn’t show anything. They ran a few blood tests also to check for markers for pericarditis and clots and both of them were clear also. They wanted to keep me in to get a CT scan to be sure about the clot and would have to get this the next day. I don’t mind staying in as I’ve got the laptop and I remembered my good headphones and also brought the two chargers with me this week so I could charge the laptop and phone at the same time so I can tether and stream both with no concerns of running out of power on either. Not that I did have the prob when I had the one charger but it gives that extra reassurance that I’ve always plenty of power.
By Wednesday night the pain had eased a fair bit compared to what it was, but this is generally the case, mornings are by far the worst and as the day goes on things seem to settle for me. Saying that it’s still sore but reduced from a 7 or 8 down to a 4 or 5. What doesn’t help in the mornings is the grogginess and cough, it’s absolute agony coughing lying down. The most bearable way to cough is when I’m sitting and leaning forward, it still hurts but the pain is much less reduced and not as sharp.
Thursday I wasn’t too bad, I got down to get the CT scan which didn’t last long at all, took me longer getting back out of the bed than the scan itself. I feel so useless at times especially when getting up from lying down, very much like a turtle on its back. The scan came back clear which is obviously a good thing… but doesn’t help with us finding out what the cause is. So it’s not pericarditis and it’s not a clot, they are checking with radiology to see if it is maybe a break or a fracture in the ribs. This would probably be the best case scenario as it won’t delay anything with the BMT, but if that comes back clear they may want to do another MRI scan which could potentially delay things. I always do find a way to screw things up and normally in the least obvious ways too.
Friday morning came along and I got a decent sleep, everyone in the ward went to bed fairly early and I stayed up for a couple of hours 10pm bed is just too early even if we do get woke up about 8am, so I watched some tv and started playing Tomb Raider 2, I completed Tomb Raider over the last week, was nice to remember probably the first game I ever properly got in to way back, I remember the first time seeing it, if I remember correctly I had got home from hospital and was watching my dad play on it, he was showing me it and it was the level with the TRex and raptors were you had to get the cogs. St Francis Folly was always the one I found quite tricky. But at least on the PC you have unlimited saves rather than having to find the save crystals. Thankfully the PS4 controller was just plug and play for TR1 but for TR2 I had to map the keys for it to work although the 2nd time going on when I jumped with the pistols out, rather than just jumping, she jumped, put the pistols away and got out the grenade launcher, which I got with getting the 3 secrets in the first level so remapped them again, haven’t been on a third time to see if it’s sorted or I may have to do it again. Doesn’t take too long but time I’d prefer just playing the game.
So back to Friday morning, I am rough, the cough is bad, chest is bad and back is bad, didn’t help that there was a crowd of about 800 people stormed into the ward (slight exaggeration) for breakfast and to do the beds and meds while I was still asleep which obviously woke me up. Although was nice to see one of the nurses I know quite well, I know them all tbh as I was with them for 3 months at the end of 2019 and then again last week but I knew her from the Bridgewater Suit even before then and when I was admitted times before quite a few years ago.
I was hoping the colchicine would ease the chest a bit and the MST too, I left it a few hours to see if it would settle before taking anything else and rolled out of bed and sat on the seat, still very sore and whatever way the air is in here it makes my eyes dry/water, I need to blink more than normal. Probably doesn’t help that I’m quite tired of sitting around too and not doing much. The heart rate was quite high again this morning and at about 12 I had gotten to see the doctor to see what they were now planning. Firstly it's obviously a good thing there is no clot or pericarditis. She had been in touch with cardiology who seemed to be happy that it’s not long term pericarditis as I’ve only 1 of the 5 symptoms of it which is also quite good and they are chasing up with radiology/radiography? To check about a possible fracture or break, it does seem to be the one rib which I hadn’t picked up on before so it would be good if that was to be what it is and then maybe be able to do something about it and it shouldn’t interfere with the BMT also.
Otherwise I may have to wait for another MRI which could delay things. The BMT nurse got in touch and had said about maybe needing to come in on Monday evening, which would be great, they have a bed ready for me, I’d prefer things weren’t delayed at all and really got the ball rolling. Just need to get to the bottom of this chest pain. I need to get a couple of test done before coming in on Monday, covid test and a viral test, I pretty much need to wait as long as possible before getting them on Saturday, would be good if I was to get home for a bit on Saturday evening and be able to pack properly for the long stay and then come back in on the Monday, but everything is sort of up in the air at the moment and no one is really sure what’s happening. Just the usual really.
At about 1230 I took some paracetamol and now at 130 things have settled a fair bit compared to what they were, not sure if its the colchicine, MST, paracetamol, sitting out or eating or most likely a combination of the above but I’m not as bad, still sore but a lot better than what I had been earlier and the heart rate is reduced also, hopefully have a better idea soon.
For now though I’m gonna stick on a few shows and maybe play TR2 and hopefully hear I’ve a fractured rib lol.
Until next time.