Sunday 20th September 2020
Breaking the Norm
Hey all, I’ve been leaving things to settle and to get my head around things a little and do some self-reflection, I allowed myself to be annoyed and feel a bit sorry for myself, it never really lasts long, I think with everything that I’ve been through before has my brain programmed a certain way where you let things get to you for a while, evaluate and bounce back.
Mornings are still rough and I’ve allowed my sleep pattern to go to pot, I’m more reluctant to go to bed because I know in a few hours I’m going to feel rough again and I normally feel best in the late evenings, and so a few times after midnight I would go on the treadmill and get my steps in and do some reading or when the MLS is on I’d stick it on to watch, haven’t really got to the stage where there’s a specific team that I prefer but if I was made to pick one it would be New York City FC, only because there is a player Moralez that reminds me of players I would make in football games like me, obviously he’s a fantastic player his passing is impressive and he’s only a cm or two taller than me. So it’s nice to see what I would look like running around a football pitch with six-foot odd players.
Most mornings, no matter how late I go to bed I end up getting up at a fairly decent time between 8 and 10, get a coffee, banana and a couple of clementines although I don’t always have the stomach for the food and have to wait a few hours before I can face them. One thing I’ve noticed and I’ve had this for a long time, just never mentioned before, when I first taste something anything really my saliva glands seems to explode and it hurts a bit, nothing bad but it’s noticeable almost as if they’re blocked and then burst open. This has been happening for years though so nothing new.
Sunday was a nice day and I thought, why not. I’ve been hiding in the house for months to keep my head right for the BMT and avoid COVID, but now it’ll be months before the BMT and a few weeks before any treatment why shouldn’t I get some fresh air, so out on the bike I went, not sure how far I went or how long it took but I’m guessing about 45 mins or so, really not sure. It was nice to feel the wind in my face.
Monday morning came and time to find out what the options ahead are. I was expecting to go up and just see the doc, but for some reason they wanted the bloods done again which annoyed me, what was the point last Wednesday if I was just up to give bloods then? I decided to put it behind me no point getting annoyed. I just sat in the car rather than going for a walk, which worked out well as I don’t think they even waited for the results to come back and got the call to see the doc.
It was properly confirmed that the cancer is back again there were more lumps than what the previous doctor had mentioned, they are in my neck, armpit, groin which I had been told about but they are also above and below my diaphragm, I asked if that’s what could be causing my stomach problems but they said it shouldn’t be. The most active lump is in my throat, I dunno exactly where and they haven’t been able to tell me anything more than it’s on the left, my left their left dunno but it’s most active. I have an appointment with ENT the following Tuesday which is the next step. I’ve jumped ahead a little, there are two options but we need to know more first before jumping in, the first is going on ESHAP, I was on this the first time I had cancer the third chemo I had then and if I remember correctly this one made me hold on to a lot of water until I took some diuretics and then ended up running to the toilet for 24hrs. I think I was in hospital a week and then home for 3 and repeat, I felt rough a few days with this one for the first weekend home, then after that, I was pretty much back to normal, that is if I remember right.
The other option is a tablet based chemo that you take for 3 weeks and then off for one, this isn’t supposed to give you as many side effects and not as rough as it’s spread out over a longer period but accumulatively stronger. Which of these depends on what cancer I have, we’re 99.9% certain it’s lymphoma again, but the last 2 times it’s been Diffuse Lage B-Cell Lymphoma which is a fairly slow and nonactive lymphoma but we need to find out if it is this one again. The current one seems to have come on pretty fast compared to before so could potentially be a more active lymphoma.
If the same as the previous I’ll go on the ESHAP otherwise it will be the tablet based one. Which leads on to the ENT appointment, at this I should find out more about a biopsy and the lump in the throat. Find out about when that may be, I’ll probably need to stay in overnight for that so will need to be tested for COVID first most likely so I doubt this would be done next week, would be nice if it was though, maybe just the needle biopsy rather than chopping it all out and could be that day, if chopped out it would be a scar on top of a scar as I got a node taken out at the place where there’s a swollen node this time, again whether they go for that one again I’ll just have to see.
So pretty much the next step is the biopsy and taking it from there. I’d assume once the biopsy is done things will move pretty fast to get the treatment started. My consultant had been in touch again with a doctor over in Cambridge she knows, she was in touch with him the last time about the Bendamustine and apparently he is something like the leading lymphoma doctor person in the UK, so I’m in pretty good hands. I do have a lot of faith in the doctors that look after me. I have known then for 15+ years even before the lymphoma with the blood conditions and they’ve always done a fantastic job, I just like throwing them curveballs, there’s no doubt I’ve been used in a fair few of their papers.
After the hospital I went round to my parents for a while, after phoning them first of course. Didn’t really do much out of the ordinary until Tuesday night, Wednesday morning, I had fell asleep watching the football and so knew I wasn’t going to get back to sleep any time soon and so I decided to go for a walk, I went for my medium walk which is only a few steps shy of the 10k, surprising how samish it is each time. I stuck on an audiobook and stepped out. It was really nice, it was still quite warm and was clear so nice when going through the dark areas being able to see the stars. Home and had a bite to eat then finally to bed.
I had hoped that maybe the next morning I wouldn’t be feeling too rough but I was probably worse, although some days it’s just worse than others, could’ve just been one of those days. The next notable event was Saturday morning, I was tired on Friday and went to be really early and woke up about 5 and decided I’d go for my walk. I’ve been toying for quite a long time to get a sewing machine and even more lately with the whole mask thing, I’ve always wanted to make the most of my old clothes rather than just sending them to charity. I’d seen my friend had bought one from Lidl and thought I could go for my walk home, showered, then down to try and pick one up. Went for my walk which was lovely, it was just prior to dawn and Venus was lovely and bright (insert life on venus thing), and Mars was up too it was lovely and red (like the wee red dots on Venus lol), it’s as close as it’ll be for 30 odd years so good to see.
As the walk went on it got gradually brighter and brighter and then a lovely sunrise and a nice clear sun pillar. Once home I got a coffee and shower, had a bit of time before Lidl opened so had a bite to eat, but by this stage, I was feeling rough, I was warm but cold, like the main room in the house was roasting and the rest of the house with the windows open and I’m the house. And so I didn’t bother with Lidl especially since it was a stab in the dark too. Took a while for things to settle for me and don’t think I really settled properly all day and went to bed again pretty early even after falling asleep watching a film.
I slept from about 11 right through till about 9ish and finally got up about 10 to have a coffee, haven’t bothered with the fruit yet but will eat that now.
So that’s all pretty much caught up, just need to wait for the biopsy and take it from there. Plenty of football on and the IPL has started again. The Sun's out and I've plenty to read,watch,listen to so despite feeling rough, even more so than normal today, it’s not all bad.
Until next time.Thursday 10th September 2020
Backside 360 Sit
Hi everyone today is the 360th day from I first went into hospital and everything pretty much has gone a full 360 since then. After the previous post, it was waiting around for the PET scan, the colchicine seems to have eased the worst of the heart pains, still getting niggles but nothing as bad as it had been. The next Wednesday I had my normal hospital appointment with BMT to keep an eye on things and later I was due to go and get a lung function test, but the BMT doc wanted me to cancel it, he didn’t want me rupturing or breaking anything as the lung test can be quite stressful and would be easy enough to get it rescheduled rather than taking the risk.
The next morning on the Thursday I got up as usual and just as I was about to take my tablets I heard ringing, thought it was an alarm from next door but turned out to be my phone that I’d left in the other room, thankfully was able to get it before they hung up and it was the PET scan people asking if I could come up to get the scan right away. Two minutes later I wouldn’t have been able to, so I jumped at it, very quick wash and over to the Royal. This time I was more prepared and kept my headphone in and was able to listen to my audiobook which is currently A Storm of Swords. Lay there for an hour and then lay in the scanner for another 20 mins and then on home. At least now it’s done and dusted. On the way home I phoned the hospital to let them know that the PET scan had been done as they were going to keep an eye on it and the Lymphoma doc wanted to know when it was so she could get an appointment booked.
A bit later I missed a call but they phoned my parents and it was the Lymphoma doc booking an appointment for Monday week. I’m up at the hospital the Wednesday so should find out more then. On the Saturday I thought I’d try using the treadmill in the morning to get my routine I had back again but I felt my heart playing up so stopped and waited to later to get my steps in, I’m now on a 94-day streak. Later in the day it seems a lot easier and not as stressful on the body but it really knocks me.
I had ordered the remastered Tony Hawks which was due to be delivered on the Friday but got an email about 4 to say it wouldn’t be delivered till next week which miffed me off so I canceled it and went through ok so hadn’t even been despatched and then just bought the digital version, downloaded and an hour later I was playing away, and haven’t really stopped since.
Fast forward to Wednesday where I was going up to hospital to see the BMT doctor, went in to give bloods and the nurse said I was just up to give bloods today and got him to check as I was supposed to be seeing the doctor too. The appointment with the BMT doctor was canceled which pretty much told me everything I needed to know without being told, will only be seeing the Lymphoma doctor on Monday. So rather than going home I went on my usual hospital walk down Lisburn Road cut through to Malone, down to Botanic Gardens, through there and back to the car, was very tempted to get in somewhere and get a coffee but never bothered, I didn’t particularly want to be asked if I’d been crying.
Just as I was getting back to the hospital I got a phone call, just at the entrance between the Cancer Center and hospital, I was standing at the wall talking to the BMT doctor when this wee head pops out of the bushes in front of me and starts sniffing my direction, it was a wee brown rat, it stayed there for a bit before someone was going past and scared it off. It was almost as if it knew something was wrong and it wanted to comfort me like a dog would, obviously it’s a rat and was just out looking for food but the other way helps me more and makes for a better story.
So the doctor pretty much told me what I had already assumed with the lack of appointment, the cancer is back but will need to get a biopsy to be certain, the lymphoma doctor already has a treatment plan for me, I won’t hear about that until I get to speak to her on Monday. The doctor also said that the echo scan showed that the left ventricle was “slow” and he’d forward it to cardiology to have a look at and find out if they want to investigate it further.
On the way home I called into my parents to tell them, after phoning them first to make sure it was ok to call round, can’t moan about others doing it and then do it myself. It was the first time I’ve been in someone else’s house since February and was finally able to give my mum her birthday hug after a 6 month wait. It was nice to be somewhere else apart from home or hospital. Stayed there for a couple of hours before coming home and getting some food and properly digest everything that had happened that day.
Today I feel crap, bunged up and waiting for my tablets to kick in, felt my heart a bit but should settle soon enough. Lungs also seem extra bunged up, a bit short on breath and nose running away, it’s been tough to write this but it needed to be done for my sake as much as anything, I never really got upset about me being unwell before but this time it really has, it’s just one thing after another, constantly and I’m running out of things to classify as silver linings.
I’ll hopefully know more on Monday for going forward and what it means. For now as far as restrictions I may loosen up a bit the reason I hadn’t gone out for walks or see anyone was because of the BMT and being comfortable and not rocking the boat, restricting this for a couple of months till that was done. Now I can only guess it’ll be another 6 months for the chemo or whatever and then again for the BMT, it’s too long so I think I may start to go out for walks or a cycle. I just don’t know, right at this very moment I am not moving and won’t be till I pick up somewhat.