Sunday 31st January 2021
Flip Turn
Hi everyone, things have almost certainly improved from last week for me but are all a different type of mess today compared to what they were, we’ll get to that towards the end of this post though.
After Sunday in the hospital nothing too much was really being done, just some paracetamol to keep things at bay, I was laying down a lot but the head was still sore. On Monday the docs were more under the impression that I would probably be better at home, but with how I was feeling with the blood pressure and not really being able to get up for any length of time I didn’t feel home would be a wise idea. During the day though I did spend more time sitting up doing things rather than lying around which improved the blood pressure compared to what it was and come Tuesday I also felt that I would be better at home and be able to cope now. I had organised to get a lift home at 2 and ten minutes to, I got a phone call from Musgrave about my bones, I had a bone density scan a couple of months ago but had never got an appointment letter which turned out had just been delivered that morning to the house.
The scan showed that I have osteoporosis which we already knew but that it was a little worse in my lower back and thigh than it had been in the last scan. He seemed a bit surprised that I hadn’t broken any bones. In fact the only bones I’ve ever broke were when I kicked the ground playing football with my nephew, all pretty stupid, I broke two of my toes which to this day are still a bit sore especially when it’s a bit colder. The doc wants me to increase one of my tablets and also wants me to get an infusion which I haven’t had in a few years. There were some blood tests that he wanted done too, I think it was vitamin D he wanted checked, so rather than having to go and get the bloods taken another time it could be done while I’m at the hospital.
While I was on the phone to him I was trying to cancel my lift home as I knew I’d be running late now, thankfully I was able to get a message to my mum to phone my dad. While I was still on the phone to the doctor I got another message through which said there was a porter on their way to pick me up to take me for the lung function test. It was all go, the nurse came in to tell me about the lung function test too, but was still on the phone. Once off the phone I was able to speak with the nurse and tell her about the blood tests the doc wanted done and then the porter came and took me down to the respiratory center. It was tough and had to repeat a few of the tests as they weren’t completed correctly, this aggravated my chest a fair bit. It’s been generally sore since the wedge biopsy in November 2019 but this has made it worse and the pain has increased, and am also more wheezy, but that could be a good thing to help clear out the lungs a bit too. It all seems to be a long term thing which is a bit rubbish as I know it’s gonna restrict me from being able to do a lot of things I used to be able to do.
I got back to the ward and had a couple of missed calls on my mobile and so I called the number back but no answer, they called a couple mins later again and it was the Royal Hospital offering me the covid vaccine, but I was to go on the Wednesday to go get it, couple of issues with this, one was I already have an appointment in the City and two I dunno if there is any point in me getting the jab before the BMT as I’m under the impression that the BMT will destroy any effect that it has on me. I keep asking the docs and nurses but no one's really sure, and the fact that I’m isolating either way. I also feel there would be a risk that if I was to get it before and then if I was to need to get it again after the BMT they may not give me it. So I feel it would be best just waiting for now.
I got the blood test done and then I asked if there was anything else that was still to be done, they laughed, I laughed.., we didn’t know, but we didn’t hear anything from any other doctors so it seemed safe enough to organise the lift home a few hours later than initially planned. My dad was able to go and get me some Dr Pepper on the way home as the docs keep saying about caffeine and that it’s probably just an old wives tale, there’s normally a bit of truth to them so why not do something that might help with the sore head.
Wednesday morning I had the heart trace to attend, as I was leaving the house I got a call from them asking if I was coming to it, I think with me leaving the hospital they may have thought I wouldn’t be back for it. I dropped the letter to the GP and then on to the hospital. I was pretty much straight into the appointment, it’s never very nice getting the scanner jabbed into your ribs but apart from that it’s not too bad, holding the breath is probably the only other part that’s annoying, my lungs aren’t great. I got back to the car and went home.
The adventure was close to being too much. With lying around the last few days to moving around as I had that morning wrecked me. My heart rate was really high and I felt out of sorts it wasn’t till later that I had realised that this could be to do with reducing the colchicine, over the last week or so I’ve increased the gap from 2 days to 3 days but it just seemed a bit too much and so I took it on the Wednesday evening which would be 2 and a half days. A few hours after taking it the heart rate did start to settle down. The blood pressure had settled and was more acceptable and normal.
Thursday and Friday I kept everything very low key, keeping an eye on the blood pressure and heart rate. It all seemed to settle into something a bit more normal and have been able to sit up and do things a bit more and also getting onto the treadmill a little. I’ve not been to the toilet properly since Sunday and have been on the laxatives for a few days to try and ease things but there’s no sign of things letting up and things are just building up and I’m a bit concerned about eating too much cause I know how bad it can get. I hope it settles soon and I’m able to get a good clear out soon. My chest is also still sore from the lung function test and coughing a lot more, this could also be with being home, not that the house is cold but it’s cooler than it was in hospital, I’ve never been one to have the heating blasting and prefer it being a little cooler, not cold, cooler, which could maybe add to the coughing.
Saturday morning I woke up after a decent enough sleep. I've been sleeping fairly well lately. My chest is sore from the lung function test my heart is sore which I’m guessing is from the colchicine, my stomach is bunged up, thankfully my head has now improved and the blood pressure is pretty much back to normal, but there is also a new back pain, lower back the last time I had something like this was when I got the spare wheel for the can and I tweaked my back putting it into the car. Although this time unless I’d been sleep walking and doing that again it was caused by lying in bed. It didn’t seem too bad until a bit later, I had ordered a couple of things, a bag with wheels for me for going into hospital and also generally it would be quite handy carting the bag along rather than carrying it on my back as I know the back is generally not as sturdy as it used to be. And coincidentally my back is playing up now… I had also ordered one of those walkers that have a seat on them. I got this for my mum as she’s having issues with her knees and I knew she would never have ordered one herself even if it would be incredibly helpful for her. To be honest I will probably end up using it as well at times I could certainly do with it today. Putting it together really didn’t help my back, it was a real struggle but I got it done and that was pretty much the extent of what I was able to do that day.
I think my stomach may also be adding to the back pain but still no considerable movement. I lay down on the sofa and couldn’t get up for a while, I was genuinely stuck there, thankfully there was no necessity to move which was lucky enough otherwise there would be a bit of trouble. I was finally able to shuffle round and roll and finally get up. Everything is just a mess, the cramps got really bad as well, it always seems to be about 3.30-4 that they start to play up, mostly my tongue and hands but also my lungs, all really annoying. But at least Sunday is the last day of the chemo cycle and Tuesday the cramps will hopefully have settled again, hopefully this will also be the case with the stomach too. As for the heart it’s still a bit sensitive I think I’ll go back to the 2 days for a bit and then try increase to 2,3 days alternatively to try and increase it, I’ve never really been told what to do rather than reduce the dose so not really sure what to do when things don’t exactly go to plan.
My hearing is also really weird I seem to be hearing double, sort of how you hear robots on scifi shows, I done a few tests to see if it was the tv or box or what but it’s definitely my ears, one ear seems to hear faster than the other. Strange.
Now for the good part I got a message on Friday from the BMT nurse and they are hoping that Tuesday week they will get me in to hospital and start the prep on Wednesday and PICC line in too for the transplant. Finally getting to the main goal of what we’ve been trying to do. I’m pencilling this in though as anything can happen in the next week but all looking pretty promising, nice to have a bit of a target to go towards.
For now though I need to keep the head down and get through the next week without any major issues, hopefully the heart and chest improve and I get a good visit to the loo, for a good clear out. I have a few things I’d like to get done over the next few days that I was hoping to have done over the last week or so but things keep getting in the way.
Until next time, I hope you’re all doing well. Today shall be spent lazing in front of the tv with pain killers hoping the back settles.Sunday 24th January 2021
The Pause
Hi everyone, hope all is still going well for you. The last time I wrote on this was when I was up at hospital a couple of weeks ago getting the rituximab, it was a long day sitting in the car and so it spurred me on to make the car that little bit more comfortable. I’ve ordered in a few things so that I’ll be able to sit, open the boot and look out and be comfortable and even sleep if needs be. Sort of like a metal tent, I’m looking forward to parking up in Portrush looking out over the water reading a book. Will be even nicer when the sun comes back again and gets a bit warmer.
That was pretty much all I did that week looking up different things and getting ideas of what would be the best way to go about it. I didn’t want anything permanent as I’d still like to use the car as a car and something that wouldn’t take long to get set up. So What I’ve come up with fits in the boot and I just need to drop the back seat and open it out. Have yet to actually try it but It all should work as such.
The cramps came back pretty much the next day after starting back on the chemo and needed to go back on the hospital the next day to pick up some things and speak with the nurse about the Bone Marrow Transplant (BMT), Things are moving along fast with this and I’m pretty much next in line to come in and get that started. The good news is that It’s not going to be as bad as the previous transplant, as they’re hoping that my new immune system does most of the work rather than completely destroying the old one and just regrowing the new one. And should only be 3-4 weeks, maybe…
It was planned to get a bone marrow sample and a lumbar puncture taken the following Monday and just need to get a heart scan and lung function test which shouldn’t take long to come through and then depending on availability I’ll be into the hospital to get started.
Monday came and got the lumbar puncture and bone marrow test, I was told that caffeine would help reduce the symptoms of the LP so I went and got a 2L bottle of Dr Pepper as it’s full of caffeine. Was a bit stiff and uncomfortable on Monday night but nothing too bad. Similar on Tuesday and Wednesday with the worst of headaches despite drinking buckets of fluids. Thursday I thought things were improving and after having a late lunch I was sick and everything just started running out of me.
This was a real tipping point and I ended up just lying in bed the rest of the day. Friday morning I really struggled and any time I sat up or tried to get up I got light headed and my head was excruciating. I ended up phoning the hospital, who wanted me up. There was no way I was able to drive over so I got a lift and some help making sure I didn’t fall in the house. Once in hospital they gave me pain killers and fluids. Now Sunday things have improved a bit although, my head is still sore, stomach has settled but still not 100%.
We’re not quite certain on the sore head still being there but it does seem to stem from the LP, it seems to be causing the muscles to spasm and tighten so if I am sitting up or standing for very long, a couple of minutes, it gets really sore. Lying down seems to help most, relaxing the muscles and pain killers help too, but I prefer not to take any if I can ease it without them. I just hope that it settles soon and I can maybe get a bit of normality for a few days before coming back into hospital again. Bit of a nightmare having the hangover from hell for a week now. I do like finding the worst possible way to do things. Need to lie down again now to try and ease this as it’s building up again.
Until next time.