Sunday 29th August 2021
The First Step
Hi everyone, hope all’s well with you. It’s been an eventful enough week for me and not including some things that have happened that are not my story to tell, but I’m sure it will all be ok.
Saturday went on as Saturdays do, some sport, tv and a couple of films. Sunday I was nearing the end of a few books I was reading so I decided to finish them off and try to not read quite as many books at the same time. I had planned to start back on the treadmill on the Monday but decided why just wait when I can start now, I put on my Fitbit, aligned my tablet holder over the treadmill and started walking and reading.
The walking will take a bit of getting used to, it’s not easy and there are a few different pains that I need to overcome. Initially there is a stiffness pain in the back but once I start moving around it eases which is great but then there is another pain that comes along which makes my stomach muscles tense up which then also adds to the pain. There also seems to be a pain in my hip, if I raise my left leg higher than you would in a normal walk it doesn’t seem to hurt but then it’s not a normal walk and uncomfortable to do.
I was “able” to do my 10k steps, it was not easy and had to do it in segments the let the pain ease, I know I may be pushing it and being a bit too optimistic with the goal levels but there’s no point doing half a job and not finding my limits of what I can and can’t do. I would be happy getting 5k steps, anything really is better than what I was getting with just sitting around. I was able to do the 10k on the Monday and Tuesday although I did have a technical hiccup on the Sunday, as I hadn’t synced since back in about March so 6k of the steps were reset to 0 when I synced, but at least I know I got the 10k that day, looking back over the data, if I ever do I’ll probably not remember.
Tuesday I was up at hospital and had to make my own way over, this would be the first time I’ll have been out in the car since about February or something, I seemed to be able to manage ok, I don’t think I caused any accidents. I think I’m generally a pretty laid-back driver and just toodle along, I’m never really in that much of a rush to get anywhere and don’t really let other drivers annoy me too much.
The only parts I really struggled with was going over ramps, it’s pretty sore the sudden jolt in the back, even going slow catches it but just going along is grand. I do have a cushion to sit on so I can see out ok but with the warmer weather and usage it’s not lifting me up as much and with losing some height too, at least and inch, I’ll need to get a new one to feel a bit more comfortable driving, mentally that is.
At hospital: I went in, bit of a wait and gave bloods, then had to go back and give more bloods as they forgot to take a couple of extra ones. A bit more of a wait with some reading and then in to see the doctor, of course the lovely nurse that called me in said I’d put on a bit of weight, which was a compliment, although I think most of it is fluid retention. I lost about 4kg last week with taking the diuretic but once I stop taking them it just comes back again. It can be very uncomfortable and if I put on socks the indents that are made are ridiculous.
The counts where all very good, either stable or improved from the previous visit, the platelets are up to 70 odd the RBCs are up a little and the WBCs are staying low (in a good way) and the liver functions are all improving too. Everything seems to be going well, also mentioned about being able to get the flu and covid jab but I’d have to speak with my GP to get that sorted. I’ll not be getting any of the other jabs you get when you’re younger until I’m off the IVIG which I’m still getting once a month and will be another while before I’m off.
We were also talking about the back and that being the only thing that is really “wrong” at the moment everything else seems to feel and be going ok, nothing he can really do about it but I do have the appointment with my osteoporosis doc in September so it’s pretty much just pain relief until then. I said to him codeine rather than co-codamol and he gave me a script for the codeine but that will not be a bad thing, I’m trying to take as few pain killers as I can so the step down to codeine if it helps will be a good thing.
I’m back again in a week to sync up with the IVIG infusion and then back to every two weeks, the rest of Tuesday I got a few steps in and a few films. I had a look on my old hard drive for what films I had there, specifically for Final Destination, as that’s the only one of the series I can’t get on tv or streaming, unfortunately I didn’t have it so I ordered a cheap second hand one.
I also wanted to test the 3d on the projector and got the Jurassic Park trilogy on Bluray, the first of which was also in 3d. Had a look initially on the PSVR, which worked but the quality isn’t the greatest on it. Then had a look on the projector and looking forward to watching a few films on that, the quality seems pretty sharp on it but I don’t have the projector set up in the house properly yet.
Wednesday I had to leave the house for a while as there was a survey being done so I UVed the house before leaving, and again when I got back again. I decided that I’d go to Currys in Bangor as there is a speaker there I’m thinking of getting and wanted to see the size of it, I’m waiting on a decent price drop on it though before I properly contemplate getting it. After Currys I still had a decent amount of time to kill, as it was turning into a lovely day, I was thinking of driving round the peninsula but thought that would be too much and I went to the beach in Milisle, I sat in the car for a while reading and a short walk along the beach and then watched the seals and the tide come in. It was nice just sitting there and the world going on around me.
I did feel quite rough on Wednesday nothing I could quite put my finger on but I think I was dehydrated as I didn’t have a drink with me, so apart from a coffee in the morning I didn’t drink anything until tea time about 4ish. Was a bit more sore than normal too and this was the same on the Thursday so I didn’t push it getting the steps in either day, but I did get on to the treadmill even just for 30 mins which I was happy with.
I got in touch with the pharmacist in the GP surgery to update them on the tablets that I was taking as I’ll have to start going through them to get the tablets as the frequency up at the hospital increases. I also got in touch with the GP about getting the covid and flu jab, so need to get in touch with the trust about the covid jab and the new flu jab isn’t out till about October through the GP. I was only able to find an email for the trust but they got back and have forwarded it to the correct department, hopefully hear back soon about that to get it sorted.
Friday evening I felt a lot better so I decided to go on the treadmill and get the steps back in but I didn’t push it too much and ended up just shy of the 10k. The Saturday I watched the football and waited for a few deliveries and then round to my parents for a while. When I got home watched a couple of films and was dozing off towards the end to Final Destination 3 so decided to watch the rest up in bed and then sleep.
So far today I’ve just wrote this with the tv on in the background. Now I’ll get a bite to eat, watch tv and maybe a bit of a read on the treadmill before the football comes on.
I hope you all have a good day and speak to you next week.Saturday 21st August 2021
False Start
Hi everyone, hope you’re all doing well still, been an interesting enough couple of weeks, the back continued to improve over the weekend and I was starting to get pretty able and spending more time back at home home. On the Sunday my sister organised a bit of a birthday treat for me to get to see some of my friends, first time in 2 years getting to see them together.
The Monday was my actual birthday, I had been looking at the Yorkshire Vikings cricket top but something stopped me from ordering it, turned out that my aunt who lives in Yorkshire bought me one for my birthday, was a pleasant, unexpected surprise, thank you very much!!
Everything was going pretty well, but when this happens, I always get doubts in my head as I know things always even out and is always pretty consistent with me so something was bound to happen soon enough. One of the reasons why I never get too excited about things or look forward to things to much, not in a downer way just in a realistic way, good things never last for too long, but then neither do the bad things.
I went to bed that night and up at hospital the following morning. It had been a whole week since my last visit there as things were all pretty stable and have been for a while now. They want to reduce the risk factors of catching anything (not just covid) they would prefer I wasn’t up there as much or out doing too much with other people so I wasn’t surprised when they said that it would be two weeks before I had to come back again. They also didn’t feel the need to give me the anti-fungal infusion, Ambisome, and so rather than spending an extra two hours at hospital each week (increasing infection risk) I get to go home instead.
It would be another week till the reduction of the Microphenolate which would mean that I’m completely off it. The Microphenalate is an immunosuppressant and affects the blood counts quite a bit, the platelets have been consistently about 20 something or others, a “normal” person is about 150-300 although with having ITP anything over 50 was good enough for me. When everything was “fine” for me my normal counts where about 120 if I remember correctly.
It will be another 6 months before the effects of the Microphenolate completely wear off, it will be interesting to see what the counts all stabilize at. I’m able to manage ok with the lower platelet counts, it’s not something I’m unused to and similarly with a lower RBC count, I’d obviously prefer to have a more normal count so I don’t have to limit myself on things I can and cannot do, although wouldn’t surprise me if the WBCs were the next thing my body decided to attack.
So in regards to the whole Lymphoma and Bone Marrow Transplant everything has gone pretty well, counts are stable, drugs reduced, no real reactions to things and able to cope ok. The next step in regards to these things is the fitness, muscles and fluid retention. This will come in time when I start to get moving around more and start doing a bit of walking, exercising and general day to day things.
Although as already mentioned I don’t get too excited about things, the above is all great and everything but… there’s always a but, although mine is pretty non-existent with having minimal to no muscle at the moment… I woke up on the Tuesday and was sore, the back again and the whole time at hospital I just couldn’t get comfortable at all. What doesn’t help are the seats in the hospital, they aren’t the most comfortable of seats and the curve on the backrest just hits my ribs the wrong way, and the bottom part isn’t exactly comfortable either. I dunno if it actually made it worse at all but there was a definite gradual increase in pain in my back, even when I got home it was gradually getting worse and worse and by the evening was as bad as it has been.
This continued for a few days, I pretty much lived on pain killers and lying down but then the sofa was too hard and hit the ribs at the wrong parts and got uncomfortable, in bed the bumps just hit the wrong places and wasn’t comfortable. Sitting was grand for a while but the pressure on my tummy then got uncomfortable. Pretty much anywhere or way I sat was grand for a short period and then got sore or uncomfortable. The worst part is moving from one of these positions to the next, getting the right technique where it is least painful or timing the pain meds is key to being able to move around freely for a bit. Not easy though.
Friday I was hoping to get to a wedding ceremony but everything was way too bad and still getting worse. I decided to go home home as the chair there gives me more sitting options and the bed doesn’t dig into me as much. The massage on the chair helps loosen the back up a bit too. The lift round to the house was pretty damn sore with the movement in the back so I was quite pleased that alone that I had decided not to go to the wedding as I would have been in the car for over 30 mins which I just couldn’t have coped with, sitting and moving around there would have been impossible. I was thankfully able to watch a stream of the ceremony and seen a few of the speeches too which was great to see, just a pity I didn’t get to see everyone.
The Friday evening, I went to bed fairly early and just relaxed not having to move around too much, similarly on the Saturday and Sunday, the back stopped getting any worse but was pretty sore. I was starting to get techniques of getting out of bed, shuffling in the chair and getting up out of the chair that were less painful and sometimes not painful at all on the rare occasion, but most of the time it was pretty bad and lingers for a while after too.
On the Monday I think it was, my back was pretty stiff so I lay down on the sofa to stretch it out and straighten it out a bit as I’m really slouching to help reduce the pains, with bones sticking out awkwardly. It was nice stretching but I knew getting up was going to be an absolute nightmare and would take a while for me to do so and most likely not be able to without causing a lot of pain. It was grand until I fell asleep and woke up bursting to go to the toilet, if I hadn’t have fallen asleep I would have been able to give myself some time to gradually get up but as I REALLY needed to go I didn’t have the time.
I wasn’t able to push myself straight up to a sitting position, it was way too sore, I managed to push myself off and ended up kneeling with my arms on the sofa and knees on the ground. At this point any movement I made was absolute agony, if I lifted an arm or a leg it was as if something was pulling my back apart, I was only able to slide side to side a bit. I got to a point where the choice was, wet yourself and stay like this or go for it and fight through the pain. I knew that if I took option one, I’d still have to go through option 2 so I went for it and OMG!! Ouch. I can’t remember how exactly I done it the pain probably blanked it out but I managed to get up and get to the toilet ok. I then got some painkillers, for the next hour or two the pain was a throbbing in my back.
Thankfully from the following day things have been improving, the pain has gradually been reducing and been loosening up and been able to get onto the treadmill a bit too. I will gradually build that up and then hopefully soon enough have the confidence to go walking outside without having to worry about distances, and if planning on going for a 20-minute walk, going for a 20-minute walk without having to push myself to finish it. At least with the treadmill at the moment if I plan on going for a 20-minute walk and decide 10 is enough I can just stop. Can’t do that when you decide you’ve had enough and you’re still 10 minutes from the house.
I do see the back being an ongoing issue, and I wouldn’t be surprised if I end up in a chair because of it. The rate and how often things have been going, there’s only so much the back can take before it’s too much. I’m not really too sure what the options are long term in regards to treatment and/or surgery. I have an appointment in September with my osteoporosis doctor and should find out more then.
It’s been a long time coming, with the long-term steroids causing most of the damage but the straw that broke the camel’s back, literally, was with the graft vs host reaction I took and having to go on the really high dosage of steroids. Not only did it set things back about 4 months or so, and make me go a bit crazy for a while, it was the tipping point for my bones to really cause that weakness and start causing the fractures.
I’ve been finding ways to adapt to things, mostly around shopping so far. I needed a bag to go around shopping with so I won’t have to carry anything and then there was getting that bag into the car, I’ve came up with a winch type thing that I can use my foot and weight to lift it into the car and out. Have yet to try it but think it should work.
I also need to get a string to hang down from the boot door so I can close it as it was a struggle enough before but now I’m a bit shorter and “more fragile” I don’t want to stretch and cause more issues, I had a look yesterday but there didn’t seem to be anywhere I could attach it to, I’ll find a way though I’m good at adapting.
The only other thing of note is the fluid retention, I’ve not been taking any diuretics for a few weeks but things were building up. A few days ago I started taking them again and each day since I’ve been loosing about 1Kg each day, today though things seem to have settled and haven’t been running to the loo every 15 mins so I think I’ve got rid of the worst of the fluid. Again once I start walking and doing a bit of exercise it will help with this too.
That’s pretty much all for now, I can see things starting to get back to normal again the only thing holding me back at the moment is the back, if it wasn’t for that I think I would be up and about and out walking already, but with the last couple of weeks and it playing up it’s been holding me back. Hopefully the next update will be about me being able to get out and things starting to build up, but let’s play it by ear and see how things go.
Until next time.Friday 6th August 2021
Routine
Hi everyone, hope you’re all doing well and the change in the weather, here anyway hasn’t made it a downer of a week. Again here unsurprisingly nothing too much has happened, certainly nothing much different from what has been happening.
The main thing I’ve been doing is getting a bit more organised, nothing that really helps with much but it makes me feel a bit better. What I’ve been doing is getting my games organised so I know what I have and how long roughly it’ll take to complete them and which platform I have them on. There are quite a few games that just get lost in the library and would never get played otherwise.
It would be nice to get absolutely absorbed into a game, the last one that happened with I think was Metal Gear Solid V which was about a year ago, since then, a lot of things have been going on and not really been able to get into much but that’s no real “excuse” as such. What I do have is way too many games and I really need to get through some of them before I should even think about getting any more but when I see a good deal I just can’t resist.
This is the same with books, I keep checking the daily deals and keep adding to the collection despite having enough books to easily last me a few years. Similar to the games, I should just stop checking the deals websites but then what if I miss something I REALLY like.
I’ve started to spend a bit more time at home home which is really nice although it will be much nicer to just be there and not have to “plan things” of what I can do before I get picked up again, it’s incredibly nice being there but it just doesn’t last long enough. Everything is better, chair is more comfortable, bed is much better, I eat when and what I want and not have to divulge in small talk. Just do whatever, whenever and it won’t interfere with anything, at the moment I can’t fully relax as such. I’m gradually moving things back there, not that I have loads to bring round and could be brought round in a couple of trips but just bringing a little at a time.
I was at hospital on Tuesday as usual, it was the long day of the month as I get the two infusions, the normal one I get on a Tuesday takes an hour and the other I get once a month takes about two hours, but the speed of that is increasing each time. I thought the last time it was at its maximum speed, turned out it was increased again this time and so was just over an hour.
All the blood counts and everything were all pretty stable again, which is what I’m after, not overly concerned about counts being a bit low or high, as long as they are not dropping or jumping around all over the place. They are writing again to my osteoporosis doc about the aches from my back to get advice and maybe get them to have a chat with me and another scan for the bone density, the last one was in November but I’m sure with everything going on it has changed.
Apart from that, watching TV, reading and a bit of gaming, is pretty much how things are going. I’m always sore or when I take my pain killers then I’m tired, very rare were I actually feel normal which is pretty rubbish, I’m only awake about 3 hours now and feel I could go for a good sleep and then I’d wake up and be sore then take painkillers and then need sleep again. I’m looking forward to the day I can just wake up and just go and do something without feeling so weak, sore or tired. Everything is such a struggle, I have progressed loads since the last drop in tablets but I feel like I’ve hit a wall again and not progressing any more but another week or so and the tablets will be reduced again and I think at that stage I’ll be able to make more progress. I know it’ll be slow and it is getting there, but it would be nice to have that miracle bounce back.
By then I hope the aches will be a lot better too and be able to move a bit better and not have the constant fear of any click or crack I hear thinking I’ve broken something again. I’m finding ways to be able to do things so they are not as sore but I’d prefer it being that I just wasn’t sore at all.
Over the next while I’m going to try while watching films stick on French subtitles to maybe pick up a little bit and start learning French again. I Did it with a film last night and was surprised at how much I understood not to say I would have known the full sentence and the english audio certainly helped but it was recognisable. I’ve downloaded a few French textbooks also so brush up on a bit of KS3 French which I should know ok, once I get to GCSE level though, which I did do back in the day, I’ll probably not remember most of it. Will be nice to scratch up on it.
Anyway, until next time, I hope you have a nice week.