Thursday 27th August 2020
Not Another Bloomin Post
Hi all only a couple of days again since the last post but it’s all go at the moment. Wednesday morning I went up to hospital and gave bloods and told the nurse I was going for the heart trace in between then and seeing the doctor and that he knew about it but I should be finished in time anyway and shouldn’t interfere with anything.
At the outpatients I stood waiting outside the wing as I didn’t want to loiter inside and there was no one about so I thought maybe I was their first patient, which I think I was anyway. Waited about 20-25 mins and still no one at reception, it was still before my appointment time, but eventually, a nurse went past and spoke to me and asked if I’d been told to wait out there, which I hadn’t and told her that there was no one about or at reception and didn’t want to loiter in a tight corridor. She took me down to the far end of the corridor and asked to wait outside a room, not exactly sure how anyone was to know to go there.
I got called in and said to the nurse about the potential pericarditis, more so that it would be looked for than just doing usual checks and maybe not taken note of but I’m sure it’s probably something they would have, better safe than sorry. After I asked how long it would be for the results expecting it to be a couple of days but she said about 10 mins it would be on the system and that my doc would be able to see it. Excellent.
Went back to Bridgewater and said to the nurse I was back and just waited in the waiting area out of the way for a change rather than going to the car, I wasn’t expecting to be waiting too long and only about 30 mins later I got a phone call to come in. While I was waiting my original haematologist from the city seen me and came over to ask how I was. I hadn’t seen her for quite a long time. Notable encounters of meeting her when I wasn’t her patient are when she was visiting a relative in bed beside me the day I was initially diagnosed with lymphoma, another I was going to Slieve Croob and she was at a funeral just outside Dromara. It had been so long since I’d spoken to her she thought I was still teaching and she was pleased that I’d left it, generally with the risk of infection nevermind covid. It’s always nice to see her though.
She said a few things that at the time, didn’t seem out of context but looking back make more sense. She had obviously been in the meeting with the doctor I was about to see. I got the call and went into the doctor, and I’d said about how I’d been feeling the last week and my thoughts and that I’d the ECHO that morning and should be on the system. The ECHO didn’t show any fluid around the heart which is obviously a good thing and we thought best to start back on the colchicine to see if that would help settle things and leave the steroids as they are.
That morning the results from the CT hadn’t been posted and they had to chase it up and got them through not that long ago. They showed there were a number of swollen nodes in my neck and armpit, where I’ve been getting the pains, the largest being 1cm in the arm and 0.9cm in the neck, and a small one close to the bone in my leg too. They are normally not overly concerned about swollen nodes unless they are 1cm or bigger, so there is one, but as only 2 months ago they were all ok and with my history, they want to chase it up urgently. In the past any of my cancers have been very slow in development so getting something so quick is unlike me. So for this, they want to get me booked in to get a PET scan urgently, how soon that will be I’m not sure but everything has been very manic the last couple of weeks and I’ve been pretty lucky that some tests required had already been booked in for for the BMT, PET scan being one but hadn’t heard about it yet. Just have to wait and see. The swollen nodes were one of the reasons they didn’t want to increase the steroids as it may affect them and hide what we are looking for in the scans and give a tainted result.
There was also something in my throat they are referring me to ENT for, I’m not really sure what this is, inflammation or something, I’m not sure but that’s getting urgently booked as well. I got a call from my haematologist later that day and she went over the results in a lot more detail than what I had been told face to face, things I mentioned in the previous paragraph, this was more of a why we’re doing this that and the other whereas the one in the morning was this is what we’re going to do, I like knowing the whys.
After the appointment in the hospital with doc he wanted me to get an ECG as well just to double-check about the pericarditis and completeness but one of the nurses there was able to do that so got it sorted pretty quick, that is except for the problems of getting the patches stuck to my hairy chest.
Basically the results from today mean I need more tests, it’s narrowing things down to find exactly what the issue is. I think the main part was there was no fluid around the heart, but I definitely was getting heart pains and I started the colchicine once I got home and today I don’t seem to have the heart pain but still the sore neck, arm and chest, it’s not a great day to judge though as I had my tablets in between the echo and seeing the doctor, later than normal and then again more or less today so it’s not really a valid day to judge it on, tomorrow will be more telling and it may be a completely mental thing maybe because I thought it was x I focused more on have x’s side effects.
Anyway there ya go, despite everything on paper probably being “bad” it didn’t feel like a bad day, I was happy, getting closer to answers and felt pretty decent compared to what I have been generally lately, rough this morning though but that’ll die down soon when the tablets kick in.Tuesday 25th August 2020
Summery
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 lolSunday 23rd August 2020
Rock, Fire, Hard Place and Frying Pan
Hi all, last I updated was last Monday when I had discovered a lump in my neck and just as I was posting it I got a call to go to the hospital to speak to the doctor. Once there I was brought to a side room and bloods were taken and just took a seat and read, couple of nurses I knew came in to see me which was nice, even with the mask on they knew me. After a while, the doc came in asked for an update, it was the lymphoma/haematology doctor so I hadn’t spoken to her for 5 weeks so updated her on how I’d been feeling the last couple of weeks and finding the lump on Saturday morning. The white cells were up but everything else seemed to be fine so points to an infection and put me on antibiotics and booking a CT to investigate further, she also mentioned that the lump was quite loose normally cancer lumps are more fixed.
I was already booked in for an appointment on Wednesday with the BMT doctor and again on Monday for a phone call with the lymphoma doctor. Wednesday I went up nice and early, bloods taken and went off for a walk to kill time until the results came back. I avoided taking my tablets that morning so that I would be able to describe exactly how I feel rather than trying to remember and the swelling and lump would be at full effect the walk wrecked me though compared to the last time. He didn’t bother having a feel at the lump or anything but he did say that he could clearly see the swelling. I was quite out of breath when speaking to him, but I had just been for a walk and back to the car maybe 5 mins and then rushing into the hospital, when I was going through everything I didn’t really give myself time to take a breath. Plus I’m not really used to talking to people so probably get a little bit excited when I do get the opportunity to haha.
Again he said that the only count that was out of sorts where the neutrophils which is unusual, but with the spleen removed and on steroids I would generally have a higher count but even this is high for me. Everything else was pretty much as expected. He was happy enough with being on the antibiotics and investigating further and he noticed that I have a CT scan on Monday morning. I hadn’t got the letter for this yet but when I got home it was there.
I took my tablets and sure enough, a couple of hours later I felt 100% better again. The next day I decided to run my own tests for which tablets are making me feel better, I was already sure it was limited to 2 I was taking and sure enough the ones I thought it was I took first alone and a couple of hours later was grand, they were the steroids so it could be an inflammation thing and the steroids are helping reduce it until the next morning. I took the rest of the tablets as soon as I’d perked up.
Thursday night after midnight I decided to get my steps in while I couldn’t sleep and felt pretty good, as I know the mornings I feel like shite and its more of a struggle. It wasn’t until Saturday morning when I was lying in bed with a sore neck, shoulder and arm and a tight chest that I realised… This is pericarditis.
Then it nearly all made sense, 6 weeks ago the steroids were reduced 1mg a week from 20 to 15mg a day and also stopped colchicine which I was put on for the pericarditis back in December. The swelling in the neck is the same as then and the general feelings which are “lymphy” like which are probably more blood vessels etc. Also started doing my blood pressure and heart rate more regularly rather than just in the morning and I noticed the heart rate is a LOT higher in the mornings about 100bpm and reduces to ~70 in afternoon and evenings. Once I picked up on this I decided I’d avoid the treadmill completely in the mornings and hold off till everything settles and then get my steps.
In a way this was a relief, I am now quite sure I know why I’m feeling rubbish, but even with the pericarditis it doesn’t explain the lump. Swelling and everything else it does though. And this is still all speculation until I get the tests done to confirm it. If I’m right though this will be the third time I’ll have had pericarditis, what this will mean long term I’m not sure. What this will mean short term and the BMT I’m really not sure. I know the current aim is to find out what this is and get it sorted, pretty frustrating that the final checks are being done prior to the BTM so I can just really hope it doesn’t delay things.
It does scare me a bit that I may have long term heart problems now though, remembering back to how I was in December of all the experiences I’ve had I can probably say that that was the scariest and worst of them all. Watching a needle being stuck into your chest and moved so close to your heart when it’s been pounding at 150bpm for 24hrs, I’m sure there are worse things though.
I’m dreading tomorrow, mostly because I’m not taking my tablets until after the CT scan so will feel like crap for longer than I would like to, I have my phone appointment first thing so I’ll be able to tell her my thinkings and see what they have to say, and with the CT scan also just to confirm things, it may even mean I may not have to go for a PET scan prior to the BMT doubtful though. I’ll be glad to get home and take my tablets.
Busy week though, important week.
Until next post!Monday 17th August 2020
11 Months
Hi everyone, hope you are all enjoying the lovely Summer we’re having, well, to be honest, I’m really not sure if it has been or not. I do know that today it’s raining. I always enjoyed a walk in the rain though, especially on summer days, when it stops apart from it getting very humid the smells are lovely. The last few days have been pretty warm which I noticed more when I was on the treadmill but if I open the windows at the front and back there’s a nice breeze that comes through the house and even seems to make the house cooler than outside, and on a warm day that’s welcomed.
Similar to the previous blog I’ve mostly kept to my routine, I’ve done my daily step goal now consistently each day for a few months now and have been able to read while on it too so been able to increase my reading again which I’m more than pleased about. Reading is always something I want to do more of but just never really seem to read as much as I’d like too, for no real reason. I think what “slowed me down” for a while there was that I was reading Catcher in the Rye which I struggled with again for no real reason just didn’t enjoy it much for some reason and despite going to other books and back again it just put a bore on books for a while. Then I read an underwater murder mystery one and it spurred the reading back into life again so have read a few books over the last couple of weeks again. Of course, the one this morning that I’m on is about bank robberies, I just got to a really good point when the time was up on the treadmill and will no doubt spend extra time reading today to get through the good part.
I picked up a load of books from a local charity shop back in Feb so I’ve plenty to get through and a few I know I’m after which I’ve still to order through a friends bookshop but it’s a bit more out of the way, will order them eventually, but I know when I go into hospital I’ll not be able to do much reading if it’s anything like the last time getting the transplant. Will most likely spend the time watching TV and films thankfully with Virgin I’ll be able to access everything through the Tablet and Chromebook tethering through my phone.
I got a call about coming up to the hospital to get the first of a few tests for the build-up to the BMT, I had to order some more of the anti-fungal tablets and ended up getting the liquid form. A couple of days after getting that I “worked out” how long it would last and I read the 40mg/ml and 15 ml x3 a day I worked it to be the 4 bottles would only last the 10 days or so. But after ordering more and getting the tablets I discovered that the bottle was lasting longer than a couple of days then read it properly and it actually contains 100ml or something in each bottle and will last for a week, numpty, at least the tablets will last longer and they will be used anyway. Still, numpty.
So I got the tablets while I was getting the BTM tests done, one was a covid test and another tissue match test and something else as well, there were 4 bottles and the swabs for covid. It’s been near a week and I haven’t heard anything so I can only guess that it came back as all clear. On Wednesday I did say to the nurse about my neck, on the Saturday I felt a tweak possibly, or just noticed a pain/uncomfortableness in my neck and since then it’s been more and more noticeable and by Tuesday I had noticed there was swelling. The mornings, I can’t remember from exactly when I’ve been feeling a bit rough and seemingly after taking my tablets it seems to settle and seem to be ok the rest of the day, but this seems to be getting gradually worse and worse. Last Saturday I woke up and whatever angle I was lying in I just seemed to feel my neck and noticed a swollen node, it wasn’t massive, pea-sized but very noticeable and the swelling in my neck was a lot worse than what it had been and very visible even without actually looking for it.
Saturday morning I felt very rough compared to what I had been. I was toying with the idea of phoning the hospital but thought it would be best holding fire to see how it progressed through the day and again after taking my tablets the aches and unwellness seemed to settled as normal and by the evening felt grand again. The lump stayed and also the swelling, Sunday morning the same again lump still there and the swelling still and felt rough again, I thought it best to phone the hospital and see what they had to say, very little they can do on a normal day nevermind on a Sunday so it was more a heads up for them before I went up on Wednesday for the normal appointment and that was the case, they are going to have a chat about it today and let me know if there is anything I need to do but haven’t heard anything. There is very little they would want to do without getting an idea of it first and getting a feel at it so doubt anything will happen before Wed, which I was expecting anyway, but at least they know now.
The feelings in the morning are similar to what I felt a year ago, I had a few swollen nodes over the months but none showed as cancerous when tested, so it could just be a node that keeps getting blocked and making me feel that way. After my tablets maybe an hour or two, I get a wave of heat rushing through me and get a lot warmer. I can only describe it very badly, that it’s like inside is the oven and my body’s the kitchen, the oven is on and warm and when I take my tablets it opens the oven door and then the kitchen warms up. I’m sure there’s a better analogy than that. The accumulation of sore neck, sore back, sore chest, dodgy stomach, drowsiness and fatigue, it’s all a bit meh at best.
It’s quite annoying that it’s happening now so close to the BMT, but then better now than closer or during, but at the same time I’m getting a lot of tests done which will be able to rule out some things. At this point, it’s a waiting game. Hopefully I’ll feel a wee pop and then a sense of relief and it’s just a blocked node, but I very much doubt it will be as simple as that, wishful thinking though.
Until next time.
PS just as I was about to post this I got a call from the hospital and they’d like to get a feel at it so I’ll be heading up to hospital this afternoon to get it checked out.Sunday 2nd August 2020
3-2-1
Hello ello,
So it’s been a few weeks since the last blog, but in fairness, I really haven’t been up to much so not much to write about. I’ve pretty much got a nice routine going on now, I get up and go on the treadmill and read, no risk of walking into any lampposts. Usually there’s some Australian sport on in the morning so stick that on and then have a shower it’s nice being able to do this each day again with the PICC line out. I’ve been really trying to get my walking done each day but just on the treadmill and not outside.
The afternoon I usually catch up on what I’ve got recorded. I go through the Radio Times each week and set up new series links and to record one-off shows and just work through them. Unless it ends up they’re rubbish and I just cancel them but that doesn’t happen often. There’s normally a lot of documentaries and with the two new sky channels Sky Documentary and Sky Nature they normally have a few good shows on each week, and also BBC Four. I pretty much always need a sleep, quite a lot of the time it’s not long after I eat but I always end up completely shattered and if I don’t get my sleep I’m a real grump, so the sleep is pretty essential.
The evenings are more a relax time, sticking on a film or two, entertainment programs and on the computer or whatever football is on. Weekends are pretty much just all sport, football, cricket, rugby, F1, superbikes, MotoGP anything really. Most of the time I end up either reading or on the computer at the same time.
I’m trying to keep things structured so that I at least keep a decent sleeping schedule. The odd time I get a horrible sleep which is usually caused by my stomach playing up or my cough and sometimes even both, which is a nightmare.
Haven’t been able to work out what is causing the issues with my stomach, I’ve been cutting out different foods for a while but nothing seems to change.
The only real thing of note over the last few weeks was that I was at hospital on Wednesday, I booked it early which was good I was in and pretty much got my bloods taken straight away and then I went out to avoid the waiting area. I ended up just going for a walk and when I got back to wait in the car a few minutes later I got a call from the doctor to come back.
Each time I go to the hospital over the last few months it’s either in a different place or the layout has all changed with Covid. There’s now a one-way system in place but at least now I don’t have to use the main lifts to get to the Bridgewater Suit but I do have to walk past them on the way out, but it was generally very quiet that early. When speaking with the doctor I said about the stomach and he had a look to see if it could be any of the tablets that I’m on but I’ve pretty much been on the same tablets for much longer than it’s been going on so I’d already ruled that out. That was about it for that matter and said again about the persistent cough and guck coming up, it’s been over 8 months and the pain is still there and the cough is as bad as it’s been. I guess on a positive it’s not as bad as it was a year ago but still it’s constant and the crackling of it too urgh, it’s annoying. They took a sample of the sputum but I’m quite sure there won’t be anything there. I think I may be stuck with it for good. I doubt there’s much they can do about it.
I got to speak with the nurse about the Bone Marrow Transplant (BMT), so the ball will be starting to roll with that soon enough, my bro will be doing his part of the next couple of weeks then it’s pretty much just a waiting game for a bed to free up for me. They can take 6 people at a time and asked if there was a space opened up early would I be willing to take it which I certainly would be, the sooner it starts the sooner I get sorted really and less chance of any screw-ups prior with infections and the like.
Yesterday the 1st was when I said to myself back in March that I would allow myself to start to get out and about again, which ended up being the government end of lockdown for the vulnerable too, but I’m not going to change anything till after the BMT, not really with the risk of infections, more the mental side of things, I’m content and happy as things are. I think that if I was to go out for walks and fresh air that I would enjoy it too much and start adventuring but knowing that in a few weeks I’ll be back to being stuck in a room not able to leave it I feel it would be too much of challenge to settle back into the swing of things.
So I’m going to continue as things are and make the most of the isolation for longer, get more books read, films I should have watched and games to play. It’s not often you get the chance to just completely switch off, I’m trying to put a positive swing on it obviously it’s not ideal, I’d certainly prefer to be out and about building up my energy properly and being able to see people. I guess maybe Christmas I might be able to get some normality again but... Just have to wait and see and even the outcome of the BMT who knows how that is going to go.
For now, I’m relaxing and trying not to think too much of what’s ahead. Today is the 321st day since I first went into hospital and there’s still a while to go yet. At least things seem to be going the right direction.
Well until next time, I’m gonna get a bit of shut-eye zzz again before my Tesco delivery arrives and then some food.