Thursday 29th February 2024
Well Now, Well...Now
Hey everyone I hope you're doing well, I have very mixed news and I'm not really sure it's been processed or not to the full extent.
Saturday came and I popped in to hospital to give the bloods a little early but I wasn't going to be late. Sat in the car a while and then in. All went how I had expected it to the day before and was there maybe 15 minutes, had no milk or food in the house so popped to the shop to get a small carton of milk and a meal for that night.
Pretty much everything was ready for me to go the next day, I would spend the night before at my parents before heading in to hospital the next morning.
They didn't say about stopping some of the tablets like they had for the previous one so I stopped them anyway to minimise hiccups. Came in and all was going grand, I was first in the afternoon and not too much of a wait. Taken down for the op and then out cold. I think it was about an hour and a half, I'm not certain on that though.
And was brought round to recovery, I think I remember being brought there so I must have woken up after the surgery before leaving there. Eventually I was brought round to the ward, it was one of the bays which I'm not really used to with my superbug and risk of infection, but there was only one other person there and he seemed ok.
My legs were still numb but it was gradually wearing off mostly on the right leg. Had an issue, as always, with the blood pressure being low. My normal is 90/60 and after anyone ever takes it they're "you need to drink more water" and so you're drinking gallons of water with no real affect and then they started pumping fluids into me, "are you dizzy? Light headed?" Nope... Anyway they ended up stopping my beta blocker and it went up to their normal.
Of course with all the fluids going in it also has to come out, I said no to the catheter so that it would mean I would be up and about sooner but with the low blood pressure and numbness I was bedbound and needed to use a bottle. They didn't tell me how to use it when lying down but I've already nailed that technique with previous experience.
Had a bit of a chat with the guy beside me but more formalities than becoming best buddies, seemed quite a nice guy and hope he's already home hopping about! The nurses were also very nice and helpful, I had been told they were quite strict and bossy but nothing like that.
That night was pretty horrible, new bed, surgery, fluids and BP's being done. It was just constant and little sleep was bad.
The following or continuing on into what would be when people wake up I noticed my left leg was still very numb in parts and I'd noticed the foot coming back and part of the thigh but it just stopped and it was the stopping was more concerning than the numbness itself.
I told the nurses and doctor and they were happy enough that it could still be time for it to come back.
I was brought out of bed with the physios and was able to walk and went to the loo as well, although there were a few times were my left knee gave way and if it wasn't for the crutches and them holding me I'd have been on the ground, but most of the time I was able to lock the knee and put weight on it and back to the bed, but could only leave with someone
At that point things started to go pair shaped, I was told I'd be moving wards, then I was told I'd be going for an x-ray and back another ward, then I was taken for an x-ray and back to the same ward to be moved after lunch, and then wasn't moved at all, which was grand, I knew the nurses and the layout and at that point I was the only person there.
That soon changed when the ones having surgery that day started turning up, first guy was grand, but the second person had a really bad phlegmy cough and I was instantly concerned, and had to say to the nurse about being immunosuppressed. After a while they ended up moving me to my own bay, but it was at least two hours and by that stage...
The surgeon came round that evening, he told me it had all went really well, minimal blood loss and the x-ray looked good, then I told him about the numbness and it hadn't changed from that morning that was a bit of a shock to him and he felt around where it was and said about the femural nerve possibly being bruised.
Skip on a bit to the morning the nurse was with me and I was moving from the bed to the chair and I didn't lock my knee properly and it gave way, down I went. I'm not really sure what way I fell but I was concerned about twisting my new hip, I think I was fast enough with my right leg to move it back and with the crutches to push me back, not that I was thinking to do any of that but I ended up with my head and shoulders on the bed and my right leg holding me up and then the nurse holding my waste up. I was stable enough that she could let go briefly to get help from the others to get me in to bed. I tried to relax to feel if I banged or hurt anything but I seemed to be really lucky and not hurt anything and the hip seemed ok, a little more tender but I think it would have been like that anyway.
"Was it the blood pressure, were you light headed?" *facepalm*
After that the knee thing was escalated and more people rather than just the surgeon were looking into it. The surgeon explained it all really well but basically during the surgery they need to move stuff out of the way and in doing so it agitated the femural nerve and it has refused to work since, there's no actual damage so should make a full recovery but it's not really known how long that'll take, by the sounds at least a month. But they have got me a brace for the leg which prevents it from collapsing so I'm able to move around with it on, but I can't put it on or take it off by myself and getting in and out of bed is a struggle but possible. Sitting is very uncomfortable and for a few hours after wearing it it still feels like it's on me. It's weird that I can move my foot and toes ok but the muscles around me knee are useless, when the foot dangles the feeling is what I would imagine the part in Harry Potter when the bone gets magiced out of the arm and it's all floppy.
Today the bed manager wanted me moved but the nurses were quite adamant that I wasn't going into a bay and wouldn't let me go. Eventually there seemed to be a bit of a compromise and the bay was empty before moving me to it as I'm now scheduled to be going home tomorrow. I was able to manage the exercises and obstacles with the brace on but it does take it out of me but that'll just take time.
The last couple of days I've noticed a few early signs of infection, it doesn't sound like much but I'm a big hyper paranoid and pick up on things as they normally end up being something, I had the early stages of a fever yesterday, having the jitters and the heat being centralised, but a couple of paracetamol sorted it, the temp ended being up a bit from normal. And today I had a similar feeling at a similar time and again later in the day and both times paracetamol has settled it, I've also had a tingly nose and I've sneezed twice and just the general urgh feeling. I just hope it's not the start of something and the next thing already, it would be nice for this to all settle a bit first.
That's this all up to date happy 29th of Feb it's a special day.Friday 23rd February 2024
How is this Even Possible?
I was pleasantly surprised to get the phone call on Monday from the secretary and even happier that they are going ahead as planned, I’ve to go on Friday morning to give bloods and then in on Monday to get the surgery done, that is the plan but again they say a lot of stuff but it never seems to go how it’s supposed to.
Stupidly and my own doing I got my dates for the cardiology appointment mixed up, I had it in my head that it was Monday when it was in fact Tuesday, despite knowing it was the 20th and that Monday was the 19th for some reason I still thought it was the Monday. The thing with it though is that it didn’t change anything, it was just a phone call and I didn’t have to do anything to prepare, so I was just sitting doing what I normally do with my phone beside me.
On the Tuesday when they did phone there was nothing to change, just updates from the last year, being more tired and fatigued and putting on a weight slowly, the aches from my legs, surgery(possibly) and being in hospital last year. But all my problems are more a combination of things than anything in particular.
Like the fatigue, not only is there the reduction in steroids, there’s the lung surgery, the infection last year, the lack of exercise with the legs being sore and also the beta blockers they are all playing factors in the lack of energy and being tired and can’t be pinned down on one or the other and most likely a combination. This is the same for all my problems, it’s a combination rather than anything specific.
He was surprised that the surgeons hadn’t been in contact with him to make sure it was all ok to go ahead but that doesn’t really surprise me, but he is happy for it to go ahead and after it’s all done, which he is being optimistic of it being in 6 months for both legs that there is a new medication that he is going to put me on to. I didn’t bother finding out the name cause there’s no point, it is at least 6 months away.
The rest of the week has been very low key, I only left the house on Wednesday morning to pick up a few things from Argos and then get in more food supplies to last me, playing Metal Gear Solid 2 and the new Tomb Raider remastered release.
So this morning I woke up early got all sorted and had planned to do a bin run after hospital as I was expecting to go in get blood taken and away, 15-20 mins tops. With getting up early I decided rather than just waiting around I’d go ahead, left to go to the dump and then headed over to the appointment, I got there on time and was there at 10.30 and was asked to take a seat in one of the wards.
While I was sitting there I could overhear half a conversation on the phone, in short it’s too soon to take the bloods and they can’t do it today…
The nurse came in and told me and explained the shelf life of the blood is only 72 hours and if they take it today it will have expired come Monday when it’s needed and that I would be best having the surgery on a Tuesday or Wednesday… I’m was lost for words, what can you say to that? Anyway she tries to go get something organised so that maybe the surgery can go ahead on Monday.
She made calls and emails and went away off somewhere to chase something up, she said a few names, I don’t know the people or what they said, but I’ve to come back again tomorrow to another ward to get the bloods done and they send it off and she’s emailed someone else who’s to make sure it’s definitely done for Monday, whether it will be or not I have no idea.
I’m starting to think that maybe getting this surgery is maybe a really bad idea, there’s so many things that have went wrong and only one appointment has went ahead as planned throughout the whole process…
6th Nov – Pre-Op - goes ahead as planned
7th Dec – Appointment with new surgeon – cancelled
18th Jan – Appointment with new surgeon – cancelled
25th Jan – Appointment with new surgeon – Reception not putting out notes and not getting xray
9th Feb – Surgery – Cancelled, misreading notes about being in hospital was 23 and not 24
9th Feb – Surgery – Cancelled, haemolysing bloods and not getting irradiated bloods in time
23rd Feb – Bloods for Surgery – Too far from date
24th Feb – Bloods for Surgery - ???
26th Feb – Surgery - ???
And the thing is, this is just the start, nothing has actually been done and not only is there to be another leg to be done but the whole follow-up appointments and therapy too.
How can there possibly be so many screwups? I’m just completely dumbfounded.
Monday 19th February 2024
Waiting on a Call
Hey all, hope it's going well.
I got to watch the Super Bowl!! It was a good game one of the better ones I've watched over the years and the half time show was a bit meh as usual, it was Usher who I can only really think of one of his songs and even when it was on I didn't really know any of them and to me similar dancing throughout. Not saying he isn't good, it's just very not my thing.
It did remind of of the days I worked in the IMAX in the Odyssey, when I was in school and uni doing my homeworks in the projection booth and heading to Precious and the Beach Club after work and a gravy half and half for dinner. Good times, different times and a lifetime ago.
Anyway, back to the modern world a lot less happens these days and a lot more sitting around and lot more aches and pains. I have kept it incredibly low key, intentionally, as I just wanted to stick my head in the sand and disappear and really didn’t want to interact with people, nothing to do with other people as such, I just wanted to be in my own head and do my own thing.
I was upset with how the whole process had gone on with the surgery and being around other people wouldn’t feel authentic and I would be acting how I would feel others would see fit rather than how I would want to be and if I wanted to be annoyed or sad I could just be that without other people being there to feel like they should do something and so I would hide how I’m actually feeling.
Not that I did get annoyed or sad but I had that option there if I wanted to be. In the end it was actually a nice weekend and most of the time since then, well maybe not nice but not bad. A lot of tv and films and have been gaming as well, playing Metal Gear Solid 1 and 2 have 3 to still start but been grinding achievements and items in each one before going onto the next and on Wednesday the original Tomb Raider Remastered Trilogy came out which I’ve made a start on too.
The first time I left the house was on the Thursday when I needed to get supplies in to survive, so while I was out, I decided to go to the cinema, the afternoons are normally pretty quiet but the schools were off and it was busier than normal. A lot of kids in seeing some animated show but I was going to see Madame Web (awful film, don’t bother) which was a bit busier than normal but not too bad. As I sit at the front there wasn’t may around me and they were all at the back. Went to the shop on the way home and that was me content for another while.
More sport, more tv, more films, more gaming. It’s a nice time of the year to get out for a crisp walk but that’s not an option for me as getting up to go to the loo is hard enough and that’s only a few meters away. The aches have been pretty bad, and its really noticeable week on week how it’s deteriorating, I’m still trying my basic exercises but all I can hope for is that it doesn’t make things worse, it certainly doesn’t make things any better.
On Sunday I was feeling pretty good and I thought I would try the exercise bike for a short bit, when I first went up I wasn’t quite ready, the pain killers hadn’t quite taken effect and I was struggling getting on to it so I decided to wait, An hour later I went again and had a bit more success, I was at least able to get onto it and just a slow movement for fifteen minutes or so.
That evening I decided to go to the cinema again to see The Iron Claw, wasn’t expecting much but was a decent show, wouldn’t rush to see it again though as I now know the story of the Von Erics. During the show and others previously for a few months now, I’ve found it really hard to get comfortable and am really, really sore at times and it’s just unbearable and have to shuffle in my seat loads to try and get a position I’m comfortable in.
I have been enjoying going to the cinema but it’s really tainted it the last few months and I think I may cancel it for the end of this month, hopefully another reason for this will be getting the surgery done too and I’ll not be able to go anyway. I will go back again once everything has settled again.
And so to today, the surgeons secretary is supposed to be back again today and she is supposed to phone me today… the surgeon said about the surgery being the 26th which is next Monday and have to go the weekday before to give bloods so that would be this Friday. That is what I’ve been told, but until it actually happens I won’t believe a word of it. So I’m just doing what I do.
I do have another call from cardiology later which I suspect will actually happen because they have actually kept to time with every appointment they’ve made with me so there’s no reason to doubt them. I think it’s just a check up to make sure everything is as it should be.
Anyway there goes for now, just waiting on a call…Saturday 10th February 2024
Missed A Post
So I forgot to write a post when I found out about the appointment that was made, I was booked in for the 9th to get my surgery, I didn’t have much that needed to be done. All I had to do prior was to get a list of meds and not to take one of my tablets from the day before.
As before I was expecting something to happen to get it postponed like every other appointment with them but as time went on and closer to the date I got a more and more hopeful that it was actually going ahead.
I had my hospital bag all ready but needed to add some more stuff as I’d be staying at my parents afterwards. On Tuesday I was at my normal hospital appointment and it seemed to go smoothly enough, gave bloods and then round to get my infusion. Although at that stage there was a bit of a hiccup. After the cannula came out I went round to the waiting area again before seeing the doctor and my arm felt wet, I went into the toilets and had a look and the hole for the cannula hadn’t clotted and was pouring down my arm. I spent a bit of time cleaning that up and by the time I was done it had clotted so didn’t need another plaster.
Went back and sat down and a few mins later was called, just a quick chat and told them about getting the hip replacement on Friday, which they were pleased about and then booked in for the next appointment in 4 weeks. I normally go to my parents, which I did but this time I brought the hospital bag with the extra clothes and had a load of stuff for the dump too.
I decided that I would stay over at my parents early to make sure that I had everything that I needed, rather than coming down on the Thursday night and then finding out that I didn’t have x,y or z and not being able to get it myself. Because of this I had to head home to get the last few things that I knew I needed and on the way there I called to the dump.
I picked up my stuff and on the way back to the parents I called into Burger King. First one I’ve had in quite a while and used the voucher on the app.
All was going grand although sitting on a different seat than I’m used to, I found it hard to get comfortable and was sore and the bed was obviously different too which will take a bit of getting used to.
Thursday I got a call from a private number and I thought great here we go… but thankfully it was the pharmacist checking what tablets and doses I was on and not a cancellation.
And now Friday the day of the surgery, I got up washed ready and had everything all sorted and my mum took me over, waited a little and then was brought up to the ward. In the lift there was a crowd all going to the same place, 5a and the nurse said “turn left, then right”. So I was first out of the lift and turned left and that was 6a/b and I turned right 180 degrees and there it was 5a rolls eyes, on into the ward and was taken to my bay, thankfully I was in a side room by myself, seemed warm enough but the chair was a bit too high and was hurting my legs but it was bearable. Bloods were taken and was told I was third on the list and would be getting operated at about 12.
Now it was just a matter of waiting, my mum stayed for a while and then headed on and about 11 the nurse came in to tell me to get changed into the gown and in to bed which I done, a bit more waiting and then at 11.25 the surgeon came in…
“I have some bad news, with your admission into hospital in January…”
“Err when? Last year?”
“Oh 23 not 24?”
“No it was over a year ago I was last in hospital, I was there on Tuesday to get my IGG but not admitted”
The surgeon rushes out and I hear him shouting “Hold the phone!!”
I didn’t hear anything more for over half an hour so wasn’t really sure what was going on but when he eventually came back he popped his head in the door and gave me a thumbs up and said it was a mix up with the dates and we were still going ahead
Maybe I am actually going to get this done today!!
But as it was well after 12 and as I was waiting on him coming back there was someone already taken away in the bed, guessed I’m no longer 3rd on the list and each was roughly 2 hours so I thought it would be 2 at the earliest to get brought down.
Time went on and no word and eventually at about 1.50 the porter came in “Hi I’m here to take you down to surgery”. Great!! He put up the side rails and raised the bed, “I’m just waiting on (insert name) to help bring you down”, as he was saying that the nurse came in and said that the bloods that were taken before 8am, 6 hrs ago, had hemolyzed and they would have to be redone. These bloods were for irradiated blood which I need as I’ve had a bone marrow transplant and stem cell transplant.
The bloods need to be sent to another hospital and the irradiated bloods made and sent over so that would take quite a while and they aren’t going to do the surgery without it being there. By this stage the porter had left and it was after 2 so my hopes of getting it done then had vanished and diminishing that I’d get the surgery at all that day along with them.
Eventually after 2.30 the surgeon and anesthetist came in and I knew what was going to happen, even without all the priors the look on their faces told me. The surgery was canceled. Despite knowing and playing out the whole charade it still took a minute to process it and then it hit me, I don’t think that it was the fact that it was canceled I think it was the whole being let down, again by them, every appointment I’ve had with them has been postponed and I actually thought when the porter was there to actually take me to surgery that it was going to be the first appointment that actually went ahead.
But no.
I’m not angry or annoyed at anyone, but the whole process. I’m just fed up with it, and not exactly the time wasted but the false hope and inability to trust anything they say or do. I had already lost that from the previous appointment but to still believe that maybe just maybe there was a bit of redemption to be made…
I just really couldn’t be assed with it all, but it’s a means to an end and I don’t have any other realistic alternatives. It’s just another thing on a long list of things.
The next possible available slot is on the 26th, which isn’t too far away but it’s not when I was booked in and waited for 8 hours. And even that is just a possibility as his secretary is off until the 19th and there may not even be any space. I don’t think I should store any faith in that being the case and will just wait, again.
Just to add to my great luck with hospitals I had a check to make sure the date was right for my next normal appointment and instead of it being the requested 4 weeks, they’ve booked me in in 5 weeks and will have to chase that up as I’m booked in to get treatment on the 4th week and there’s absolutely no way I’m wasting a different morning just to get bloods taken and asked if I’m ok and be sent on.
My parents came and picked me up and we headed back to theirs, I just wanted silence and peace to process things. I just wanted home, to sit comfortably in my chair and watch what I wanted on tv with no interruptions and despite their good intentions of trying to distract me from silence, it was not how I wanted it and after saying over and over that I was going home my mum was insistent that I was staying. I had packed and everything brought down and was sitting in my coat and she was still, “what do you want in the chippy?”, “but this”, “but that”.
Anyway I got home and didn’t have to spend a second day packing while I was recovering from that busy day. I was already suffering by that stage with a sore head, caused by the lack of fluids and medications.
This continued this morning but a lot worse, it was like a severe hangover despite it being over 14 months now since my last drink. It is easing now though with things starting to return to normal with getting my meds and plenty of fluids in me.
Well that’s everything with me my end for now, I have a feeling though that something will happen in the next couple of weeks that’ll put off the surgery on the 26th but hopefully the next you hear I have that appointment ready to go ahead.
But now it’s a weekend of sport and I get to watch the Arsenal game and the Super Bowl!