I thought a bit of a summery(play on the word summary) of the last 11+ months, would be pretty apt with the way things are standing at the moment.
It all really goes back to the start of 2019 or soon after, I had a few “feelings” that just reminded me of the previous time I had cancer and after a few checks all seemed to be grand, it was good that they took the initiative and went on my word to get things looked into. A few months after that I did get a lump, a small lump but again, because of my history they wanted it biopsied, which came back all clear. But the feelings I was having never really shifted, especially since, around the time I had the lump a cough had started and just wasn’t shifting.
I went onto antibiotics numerous times and it still seemed to get progressively worse. I kept everything very low key in 2019 because of the coughing and general feelings I was having, This even lead to getting a TV and TV license. I remember one of my last proper adventures to Glenariff Forest in June, I was pretty much in a constant coughing fit. After there I didn’t take any chances.
The last time I was in a pub was the 16th of August with Tim for a few birthday drinks that was the previous week, but with the cough, I really wasn’t up for much. I do miss those nights though.
I was consistently cycling into work still at this stage and then September came and the cough was still playing up, I had a week off work on annual leave and the day before going back to work we went to the Golf place in Yorkgate, It was nice but… but it was horrible, all I done was cough and cough and cough and then there was blood.
I’m trying to remember the exact order of things, it was either the start of the holiday I started coughing up the blood or the end but the following day I went to hospital and they got me booked in for a CT scan that day to check for clots which came back clear but they did find swollen nodes and needed them checked out so booked another CT for the following Monday. On the Wednesday I was up at hospital and they got the results of the CT and it showed pockets of possible infectious cavities or lesions. I was able to go home and get a bag and then back to hospital and was put into isolation.
They checked for everything over the next month and I mean everything and pretty much didn’t have a notion of what it was and had to book a biopsy. If I remember right I got out of hospital for a week before going into the Royal, the biopsy itself, I didn’t think much of at the time, but looking back it was a lot worse than what I thought it was going to be. They had a cavity that they were aiming for but they weren’t able to get a good enough sample from it and had to go for another one meaning they had to cut out a lot more than was initially planned. Looking at the scar now you can tell it was a quare procedure.
The recovery from the operation was pretty bad and knowing what I know now I think there was more to it than just the surgery recovery. While I was still in the Royal the results came back for the biopsy and it was the lymphoma again. At this stage, I recovered enough from the surgery and was in less pain, enough where I was able to get up and walk around and do well at the breathing exercises and was transferred to the city hospital again. Now to get a plan and everything organised to start chemotherapy treatment, I was very lucky to get funding for bendamustine and it was just a waiting game of getting that all organised.
About the 14th December or about then I was sitting on the chair playing football manager and watched a film, got up and went into bed to sleep, during the night I woke up in agony, the left of my neck was incredibly sore and getting worse and worse, this continued and by the next day it was unbearable, even with all the pain killers I was on, nothing was helping, spreading down my arm and chest and heart rate was stupidly high. I went for a CT scan or MRI, can’t remember which and trying to move from the bed into the scanner made me sick I was so short on breath and my heart was going mad. After this I got an ECHO scan to confirm their findings and turned out to be pericarditis, fluid build-up around the heart. As I said earlier at the start of the previous paragraph that I think there was more than just recovering from the surgery I think I had started to experience this then also.
I can’t really remember the whole time concept of everything but I think it was CT one day ECHO the next, my parents were told to come up the morning of the ECHO and apparently I looked in a really bad way, not long after the echo they were rushing me into surgery to get the fluid removed. It wasn’t a pleasant experience, I was in awe of the incredible screen they had that they could swivel around and I was able to see what was happening on it, they couldn’t put me to sleep or anything with the operation they were doing but basically it was a needle going in below my ribs and up into the cavity around the heart which by this stage had been sitting around 130-150 bpm for over 24hrs. They got it in and started draining the fluid, if I remember correctly from the surgery and the drain after there was a total of 900 odd ml, I think, not certain though but it was a surprisingly large amount.
Well it helped and was also put back on the steroids, but a couple of weeks later reducing them and the pericarditis returned and they put me back up again on the steroids and it seemed to stop it. Spent Christmas in hospital and was surprisingly enjoyable, chemo had started and it all seemed to be grand, I do remember a couple of times having minor issues but nothing too bad.
And finally, the new year, I was sitting on the loo for midnight! I think it was the 9th of January I finally got out of hospital, I was getting chemo pretty much once a month and getting the bloods checked in between to make sure all was ok. I was able to get out for a few walks and cycles but not much, I wasn’t really up for much and physically not able. My 5th cycle (of 6 initially planned) was on the 28th of March was my last due to Covid and having to cancel the last one but they were happy that 5 cycles should be more than enough. Just a lot of waiting until the PET scan at the start of June which came back that I was in remission from the lymphoma, which is obviously great news, but I’d still the bone marrow transplant ahead which I know will be a pretty bad experience and I’m expecting this one to be worse than the previous one.
So to the last few weeks, I’ve pretty much had a consistent cough from the surgery but it does seem to be gradually getting worse and worst in the mornings. Over the last 2-3 weeks the mornings have been feeling generally like rubbish which has also been gradually getting worse and Saturday week ago I discovered the lump, it was still there the next day and phoned hospital, and booked in for a CT scan which was on Monday. Over the last weekend, I come to realise that the general feeling like rubbish I’m quite sure is the pericarditis again but it doesn’t explain the lump in my neck and the WBCs being high.
Tomorrow (at least when writing most of this) I will be at hospital, give bloods, go for an ECHO scan and then speak to both my doctors together. I don’t know what to expect, the priority is getting whatever this is sorted so we can go ahead with the Bone Marrow Transplant. But we still need to work out what this is.
I’m almost certain there’s the pericarditis, but there’s something else too and I hope it’s just an infection and we can get both under control quickly. Everything all just seems too familiar and comparing now to a year ago, similar but different. I have a bad cough, most likely a completely different type of cough but probably just as bad, and my general feeling is absolutely rubbish, the weekend and especially yesterday was very tough, with having my tablets late they didn’t ease things as much but today has been better due to the overlap, the last few weeks have been rough and getting worse. At least tomorrow there should be some answers or we’ll have a better idea of which direction to go.
No matter what the outcome is I’m still gonna end up feeling like shite for a few months at some point and better things screw up now than during or after the BMT.
I say tomorrow, today, yesterday but you’ll be reading this the day after I’ve written it at least so take that into account lol