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.