Blog 7/2021

Wednesday 28th July 2021

Standing at the Door Looking Out

Hi everyone, hope you’re all still doing well, the last week has been quite nice for me despite not really doing too much. With the nicer weather I’ve been able to sit out in the garden and get some fresh air, covered in sunscreen, long sleeves and sitting in the shade but fresh air! I got into a nice routine of going out first thing, about 8 or 9 and having breakfast, at about 12 I needed to get the parasol out as the sun would be high enough to start getting me over the house. I’d then have lunch, by about 2 I start to get really tired and need a sleep, so I either struggle on for a couple of hours with the head drooping or go inside to lie down. The latest I would stay out would be 4 at that stage the sun has moved round enough to get me past the parasol and it also just gets that bit too warm.

Now the sun is away again and there is the potential of rain, it isn’t as pleasing as before, sitting in the rain and it being a bit cooler doesn’t quite have the same appeal. While outside I would pretty much do the same as what I would normally do. The WiFi doesn’t reach out there well so I just use my phone to tether, which is great on 4G but I have 5G in the garden so very few to no issues.

The mornings I would focus on catch up TV, after lunch would be streaming tv shows and the evenings would be films, not always like that but pretty much something similar. I’d also do some reading and playing on the Switch and done a bit of work on one of my websites, Insyplex although I think I mentioned it before that no one goes on to it and it’s mostly for my own reference anyway and even I barely go onto it except to check I haven’t broke it.

A couple of things that have changed this week is the start of The Hundred, it’s pretty much T20 cricket but with a bowl less each over so it’s a bit faster and generally more likely to be closer scores towards the end making it a bit more exciting. It’s very much aimed towards people who don’t know much about cricket and makes things a little easier to understand.

BBC were doing tutorials during it which explained different things that were happening and why. Although I prefer the Sky commentary, Kevin Pietersen is very knowledgeable about the sport and is incredibly enthusiastic which certainly adds to the enjoyment of it and you always get a good laugh.

The other thing is the Olympics, to be honest I thought I would have been watching this more but I’ve only been scrolling the highlights in the mornings and watching the odd thing. So far I’ve been watching Street Skating, Archery and Cross Country Cycling.

In regards to the aches and pains they have been gradually improving as the week has gone on, I’m not taking as many pain killers but it certainly helps when I do take them and makes movements so much easier and helps to loosen up. I’m starting to find it much easier to get up the stairs than what it was like and getting better techniques for getting up out of seats and from lying down. With using the muscles a bit more they have got sore but certainly not as bad as what the back was like. I still get sore when leaning certain ways, there are a couple of spots on my back where the bone sticks out and they are quite sensitive and when sitting or lying down the pressure on those spots builds up and it gets quite sore.

I’d also absolutely love a back rub, any time I’m getting changed taking off my shirt just does enough of a scratch on different spots and I start to reach round and scratch and that’s me standing there for 10 mins scratching my own back. I have the numb patch right around the bottom of my ribs and I think, and hope that it's maybe the feeling coming back and getting tingly.

I am still getting a lot of fluid retention so have been taking diuretics to try and release some of that, the amount that gathers around my ankles has decreased and rather than being about 6 inches up my leg it's maybe only 3 inches, it’s really strange that you can actually move it around and push it up your leg. I’m really not sure how that works, it's almost as if the fluid is in between things like the skin and… whatever is below the skin.

Last Tuesday at the hospital the mycophenolate was reduced from 250mg twice a day to 250mg just in the morning. I feel this has made a big difference, I generally just feel much better and muscles seem to be building up again. I feel it’s almost the start of things finally coming together. I’ll be on this dosage for at least a month and all going well off it at which point I hope I’ll notice more improvements.

It was mentioned a few weeks ago about not having to come up on a Friday as at the moment it’s just more for reassurance more than anything now as the counts are mostly stable and so now I no longer have to go to hospital then, still up on the Tuesdays though to get the anti-fungal and next week will be extra long getting the IVIG too, apparently its some newer one and takes longer than the normal one that people get. They also changed one of my drugs again from the co-trimoxazole to the yellow-paint-stripper-expensive-fluid thing. I looked up the cost of it and it's roughly £350 a bottle, that’s £7 a spoonful!! Over the next few weeks I plan to get out walking a bit more again and build up the energy levels. I'll start to get back on the treadmill and spend some time on that, obviously not overdoing it and pushing things back. It will be nice to get to the point where I can manage by myself again, which I don’t think I’m too far off, the pain levels are just a bit too much at the moment but I’m needing less and less assistance each day and mentally I could do with being in my own place again. Soon enough...

Positive steps this week anyway despite nothing much being done, it’s certainly going the right way. Hope you all have a nice week and speak to you later.

Sunday 18th July 2021

Fractured

Hi everyone, how is everyone doing in the heat? I’m quite liking it, my circulation is pretty poor so the warm air is making it easier to keep my hands and feet warm, nice to be able to sit outside comfortably and not be freezing every time the sun goes behind a cloud.

Last Wednesday I was sitting out in the sun writing the blog and I’m doing the same today before the cricket comes on, international and then the Blast T20, I’m waiting for the prices of the Yorkshire Vikings top to be reduced before getting it like I done last year, hopefully tomorrow this will happen as it’s the end of the groups games today and into the knockout stages, which they’re through to but the next games aren’t until the end of August. Save me a few pennies and anyone who knows me knows I rarely pay full price for anything, rarely… There is the odd exception.

Lost track a bit there, so I’m sitting out under a parasol in the sun again today like I was last Wednesday. I was on plenty of pain meds and taking paracetamol pretty much every four hours and codeine every four hours, some form of pain relief every two hours while I was awake pretty much but sticking to the every four hours and only eight tablets a day rules they have. This seemed to help with the pain a fair bit and certainly felt a lot more comfortable. On Thursday I didn’t take quite as many tablets as it had seemed to relax things around my back and abdomen.

On Wed and Thurs I didn’t get up to too much, I updated the Insyplex with a load of films, I’ve been watching a lot more of them lately than what I had been the rest of the year and now reaching the 100 mark for the year. I’m probably putting a bit more effort into the site than I should be and copying a synopsis from Wiki and image, rather than just making a list of films I’ve watched which is the whole purpose of it. And no one goes onto it which I don’t mind, again as it’s for my record and it’s just online so other people can see and maybe think “oh I haven’t seen that in a while I might watch that”. It also eats up a lot of space on the Pi unnecessarily so I may do a fair bit of culling and cutting it down.

I’m guessing once the Olympics comes on I’ll be glued to that like I was with the Euros, the only thing with the Olympics is that it’s during the night but I'm sure there will be some sort of catch up or replay of it somewhere for during the day.

Friday came along and hospital day, expecting a nice quick one today or at least hoping, I know I’ll have to go back to pick up tablets later. The counts and all that carry on were all good and/or going the right direction. The reports of the MRI I got two weeks ago came back and the x-ray from Tuesday; The MRI showed that I had three fractures on my vertebrae; T3, T4 and I'm not sure if it was a C or L, but one of them is also fractured. C is the top 7 vertebrae, then there are 12 Ts in the middle and 5 Ls at the bottom. This would explain the diaphragm pains and numbness.

Then the results of the x-ray which was after I threw out my back last week and the week after the MRI, it showed there were two more fractures, this time in T10 and T11. It’s nice to know what exactly is wrong but then at the same time it’s not very good, five fractures in my back and reading up on it it seems serious enough, they’re to be treated like any other bone break and can take three months or longer to heal up.

With the BMT it increases the risk of breaks and so forth but I also have osteoporosis which has made them incredibly weak as is quite evident that I can only guess I fractured the first three by coughing and the last batch by picking up a bag. The doctor has said that I’m not allowed to pick up anything and I’ve to move house in a month so that will be fun.

The doctor was going to increase my morphine but I'm not overly keen on that as I turn into a bit of a vegetable and morphine doesn’t really seem to be that great for this type of pain relief for me for some reason. Instead he has put me on co-codamol rather than taking the paracetamol and codeine, it seems to be working quite well but does make me drowsy and in turn a bit grumpy and short tempered when drowsy.

Saturday came along and nothing special, sat outside for a while and went in to watch a film and the cricket as the sun comes round and I’m no longer in the shade after about 3.30. I could move to another spot in the garden but was also getting a touch too warm. I came out a couple times later just to get a bit of fresh air but not out sitting in it, although it would have been a nice evening to do so, especially with the clear skies.

Saturday night I was lying on the sofa watching Crouching Tiger, Hidden Dragon (film 98) and got quite comfortable and pain free so didn’t particularly want to move, eventually I did and went up to bed. While in bed I was on my back and I leant slightly to the left to tighten up my tablet holder which had come a bit loose and just this sharp pain on one of my ribs and then couldn’t move, then the tablet holder came off and fell on top of me. It has a cable wrapped round it so it’s not the most maneuverable object and I ended up just throwing it on the ground and trying to get up without triggering my rib any more, almost like a tortoise trying to get off its back.

I was eventually able to get sitting up at which point my back is always sore and now the rib on the left again at the diaphragm was extra sore with a sharp stinging pain, I got the tablet mount reattached properly and everything I needed sorted and lay down again, but I couldn't lie flat on my back like I have been able to and had to learn more on the right so the rib on the left wasn’t being touched or moved. I can feel exactly which one it is as it's quite tender to touch and when you do you feel the sharp pain. Thankfully I was still able to fall asleep.

Sunday morning and the usual struggle to get out of bed in regards to trying to not hurt myself, now with the added pain of leaning on the rib, I seem to have weakened it more as I believe it's the same one that is already damaged, one of the T3 or T4s. Pain meds seem to help well with the back, but the new rib pain doesn’t ease much, if at all, sitting how I am now there is a bit of pressure on the rib at the back and getting sore and uncomfortable so I will have to find a better way to sit.

I guess that’s everything for now, bit more overcast today which is nicer than the sun beating down. Hope you’re all using your suncream and the precautions etc, until next time.

Wednesday 14th July 2021

Trapped

Hi everyone, hope you are all doing well. Jumping back straight away to the end of the last blog when I was having the issues with what was possibly the heart. There were a few signs that gave me the impression it wasn’t pericarditis as the day went on, such as it eased when I lay down and when I leant forward. I finally discovered where the actual pain was coming from, which turned out to be my back, I think, but it eased and was quite relieved.

Monday came and went and was still having the pains around the diaphragm, no meds seem to be able to ease it, be it paracetamol or morphine, I just need to bear it till it goes away. The only thing I can do that eases it is lying down but then if I do that I’m not using any muscles and will get weaker which I'm not too willing to do as I'm a) weak enough and b) it’s been a struggle to get to where I am.

Tuesday again at the hospital, this week after seeing the doc I was getting the extra infusion, Zometa along with the usual antifungal, AmBisome, which I get each Tuesday. In regards to the BMT everything is going great, the counts have stabilized and the immunosuppressants are being reduced. I’m on my usual 15mg of steroids which I was on long term and on 250mg twice a day of mycophenolate which will be the next thing that will start being reduced. There are also a lot of other drugs that I’m on antibiotics, calcium, magnesium and the newest one B12, I think in the morning there are about 14 tablets to take and slightly less in the evenings.

I had a conversation about cameras and it got me interested in my own ones again, having a look at them as I haven’t used them in a couple of years. At that stage I was starting to sway more to using the mobile and 360 camera rather than the DSLR or mirrorless cameras.

I’m a Canon man mostly because I initially got an EOS M and EF lenses and got a 2nd hand 7D and built up a full range of EF lenses from 8-400mm, I’ve also got a G9X as a point and click camera. Couple years after that I decided rather than using the above that a phone with a good camera would be better for convenience of not having to carry the cameras, lenses and tripod when out walking, and cut out the need to transfer over to the computer, put on a watermark and any editing, reduce the file size, then most of the time on to the phone. The phone can do most of this stuff anyway. Initially I had a P20 Pro and now P40 Pro, actually upgraded to be able to use 5G, both 2nd hand and dirt cheap especially the P40 Pro as people can’t seem to cope without the Play store and I plan to use the P20 Pro as a GPS tracker while walking or on the bike as it’ll save battery on my actual phone if I need to use it.

Most of my pictures are just going onto social media as well where the quality is greatly reduced (~70dpi), there is no need for anything quite as good quality as any of the cameras take and only would be needed in printing which is 300+dpi, I don’t use it too often but I have my own high quality A3 (surprisingly) Canon printer for any prints I need, or more would like. I need to use up the ink in the machine actually, in case it dries out, although I have been meaning to do this for over a year now.

Anyway, as you can tell I'm interested in cameras and pictures. The next day I woke up and my back was agony the same as when I pulled my back out lifting the spare wheel incorrectly into the boot of the car last year. I’ve had it a few times since then, that was when I really weakened it. I can only think that it was lifting the camera equipment that triggered it and during the night muscles tightened up. The one good thing is that the diaphragm pains have settled, or the back pain is so bad that I don’t notice the other pains, that’ll be another pain for a week or so, it’s really just one thing after another.

Friday was hospital day again. I was expecting this to be a nice quick one as it was only to see the doc. Thankfully the doc I was seeing turned up pretty early, about 10, rather than after 11 at the earliest. Counts were all good but the results of the scan last week of the spine weren't back and told him about pulling the muscle also and he had a look and few other checks of it.

Then he said about getting IVIG, it was four weeks since the last one that I got, I hadn't realised it had been that long and I now get that every four weeks. At least this time it would start at the higher rate and not take quite as long but still be a couple of hours for the infusion alone. I wasn't expecting this, I should have been, so it was a bit of a "damn" moment, mostly at myself and also at the thought of sitting there for probably 3 hours with the way my back is.

The back wasn't too bad, the chair I was on was comfortable enough and gave enough support so it was grand. All done and dusted and home, I was quite tired so ended up going to bed fairly early that night.

Sunday had the football which was the thing of note and went to bed shortly after it was over. The next day was lovely, I started to react to something in the house so I went to sit outside and pretty much stayed there until it was too warm and I was too tired and went in to lie down, watch a film and fall asleep.

Back at hospital again and pretty much the same as usual, the doc said to take paracetamol and codeine to help ease the back. I'm normally not one to take pain killers but on doctors orders I will. He also booked me an x-ray just to be on the safe side as the new pains started after the MRI, of which the report is still not back for. I had my AmBisome and then down to get the x-ray, I'd been particularly sore that day and really struggled with much movement and the worst part was I had to take my trousers off and lie down, two of the hardest movements to do at the moment but not as bad as putting on socks.

I got down on the bed ok and got into position, onto my side, then the getting up when it was done... I thought it would be a better idea to ask them for help getting sat up as it can be a real struggle and so they did, rather forcefully and painfully but I was up and able to get off the bed, they brought in my stuff so I didn't have to walk to the dressing room.

All done and home, that's when I found a lump on my chest where one of the nurses helped me up, I was expecting to look in the mirror and see a big purple bruise but thankfully there wasn't, I only noticed it because of a pain that was developing across my chest. This pain gradually increased but the lump decreased. I started taking the pain killers which seemed to help with the back a bit but not the chest.

And on to today, the back doesn't seem to be quite as bad nor the chest despite it being more widespread across the chest, I'm sure all the pain killers are helping with this. I've been sitting out in the sun for the last couple of hours reading and then doing this, starting to get a bit too warm though strangely at half five it feels warmer than it did at 3.

The back has been incredibly frustrating as I'm not able to get out for my walks with it. I really have a longing to get home-home. Things will be much more simple when I get there but I don't see it happening any time soon as I'm so weak, I am improving though... slowly.

Sunday 4th July 2021

Circle, Circle...

Hi everyone, how is everything going? It’s been another tough week and a bit. Since going on the diuretic last week the pain in my diaphragm just got gradually worse and worse. Despite the fluid reducing, the pain was too much and had to stop the diuretic to see if that would ease it up which it did to an extent.

I feel like I have damaged a couple of ribs, there is one at the bottom that originates from my side, there is a bit of swelling on the side where it seems to come from, I’m hoping it’s only because of when I lay on it it’s “bent” a bit and just needs some time to settle again. This is the same with the other rib which is about half way up my back, I had issues before with it and could feel a bit of a bump where it was sore, it seems to be playing up again but much worse than it had.

Both of these mean I can’t get comfortable when I lean back or on my side and even on my belly too. They are on my left hand side, but there is also a sensitivity on my right hand side too, so there is one position, if I lean on my back and just slightly to the right I’m ok, but you can only stay in that position for so long before it gets uncomfortable and you have to move.

I’m pretty much in constant pain with these two things and the pain in the diaphragm hasn’t exactly died down too much. Mentioned these on Friday to the doctor and got a call later that I’d be getting an x-ray and MRI to check on the muscles and bones.

The Tuesday in hospital I had a dose of Zometa which is for the bones, so hopefully that will help the ribs recover somewhat, and I got my anti fungal as usual. X-ray was organised for today but I just had to go down at any time to get it, when I had all finished for the day I went there on the way out. The doctor has put me onto some B12 tablets as the levels were starting to get low and a reduction again of the steroids, I’m back to the standard maintenance dose that I was sitting at before it all kicked off, now just to get off the Cellcept. The Cellcept seems to be the drug that is causing most of the counts to drop and the reason for the extra infusions like platelets and RBC and probably causing the swelling in my legs too.

By Thursday I had waited enough for the pains to ease and decided that I should start going out for a bit of a walk no matter what, I just seem to be going round in circles. The walk was only about 15 mins but it was nice to get out of the house and see a bit of nature, luckily there is a park right beside me and I’m able to go there. I can’t drive atm and being a passenger is bloody sore being thrown around in the car, even if the driver is careful there’s still a lot of movement. And there’s really no point in driving somewhere to spend a few minutes for a walk and just be sore and uncomfortable and then head back home, so I'm pretty lucky about the park. I’ve been going for the walk each day since then.

Thursday evening I received a call about getting an MRI on Friday morning, the same time as my appointment but they probably won’t even notice I’m late. At the MRI they were very rushed, but they were squeezing me in before anyone else, once it had finished they pretty much threw me out the door. I'd say it was seconds between lying on the bed and being back in the waiting room. But it was done, it lasted about 20 odd minutes and always reminds me of nightclubs, just the repetitive booming and screeching.

Then on round to get the bloods done wait and see the doc. Calcium was a bit low but apart from that all was pretty stable from the previous weeks. The x-ray of the lungs was the same as before so nothing of concern there but the full report is still to come back, same for the MRI although I very much doubted anything would be back within an hour or two of getting the scan done.

Saturday I was able to go out for a walk again and didn’t do much else, watched a couple of films and the football. The aches and pains weren’t too bad compared to the evening before when I just couldn’t shift them at all, it was an unpleasant evening. I lay down to watch a film at about ten but knew I was going to fall asleep and should have just went to bed. Within half an hour I was out cold and woke up again about one to have to relocate up to bed.

Today I’ve just got the usual aches and pains but to add to it I’ve a pain in my chest, initially I was thinking it was a referred pain but I’ve a real weakness in my left arm also and any time I try to pick up anything or use it the pain in the chest becomes sharper. The more I think about it the more I think it’s the pericarditis, it’s blooming bad though and hasn’t stopped since the second I got up. Before, lying down was the only relief I got from the rib pain but with that it normally gets worse when I lie down, so this is going to be fun.

Luckily or unluckily during the week I had a call with my cardiologist who is organising an ECHO for me, I say unluckily because everything was grand when I spoke to him and now only a few days later it starts to play up. With it being chest pains the hospital will tell me I have to phone 999 which I know isn’t needed so I need to think of a way that I can manage till Tuesday otherwise it’s back to hospital for me.

Hoping that’s not the case.

Oh before I forget again, I've set up an RSS, I think, I dunno how to work them exactly but there is a link beside the page title that I think you need to add to your RSS feed thingy, anyone who uses it will know what I mean, this should update you any time I post a new blog.