Tuesday 27th October 2020
Done and Done But Still Some
Hello everyone hope you are all keeping well.
Monday morning came along and I went for an early walk, it was a good walk. A little later than the normal early walks but was still pretty quiet, a few dog walkers about just as I was getting home but apart from that there was no one about. After the walk I’d a lazy day similarly on Tuesday. Pretty much all I do atm is watch recordings from the previous days and put the cricket on from 3 and watch any football, NFL or MLS with a Film Crowd show in the evenings.
Wednesday I received a call from the hospital about my appointment on Thursday, it had to be postponed until Monday as the biopsy results weren’t back yet, at least this will give them more time to not only go over the results but get the plan and the drugs sorted for next time I am up.
This sort of helped with a bit of a messy day on Thursday as I had to go to the GP to get the flu jab too. That all went grand, of course with all the coughing I was doing I was getting funny looks. I also got a call from a work colleague about getting things picked up from work, I thought it would have been nice to get one last visit to the office and to see him, and a good excuse to get out of the house for a bit too. That was pretty much the highlight of my week going there and clearing out my desk as the office is closing, I’ve got my glasses back again and paracetamol that expired in 2018 lol.
Unfortunately it went downhill after that for the day, I didn’t over do it exactly but I coughed and coughed and coughed and felt rotten the rest of the day and didn’t clear up the next day either, it wasn’t until Saturday evening when I started to feel better and I ended up feeling really good by the end of the day and not really wanting to go to bed. Generally I wake up feeling rough and so delaying the inevitable which turned out to be the case. I was a little rough but not really bad but never picked up which is normally the case when I take the tablets, not to be today.
Monday I was finally back to the hospital, went in and gave the bloods and went out to the car to wait, but they wouldn’t let me go down the stairs to go out and had to go out via the main lifts instead. Some of the rules in place are pretty stupid. Rather than using the stairs with the open space and very few people actually using it I had to go into one of the lifts and with one sealed it pretty much meant a third of the people that went to the hospital had been in that small enclosed space. Went out and waited in the car and a while later got a call to come in again.
The Biopsy results were back and it’s the same lymphoma as I had before, Diffuse Large B-Cell Lymphoma, which is a good thing. They had initially said to me about getting ESHAP if this was the case but the doctor has got organised to start on a different chemo I haven’t had before, Lenalidomide, it is tablet based and take them for 3 weeks off a week and repeat, each week for the first cycle I also take Rituximab and then I think it was only the first (and 2nd or 3rd) I think, I need to confirm this but that’s a month away so not a priority, I think she had said something about it being a subcut too but there was a lot of info all to take in.
The main risks with the new chemo is clots, rash and tiredness. For the clots I’ll be going on Clexane again, normally it was taken in the morning but I’ll see when this would be best with the way the chemo will be taken. For the tiredness the doc has said about taking them in the evening so that I’d be asleep and miss the tiredness, and if the rash occurs they can give me a cream although not sure what type of rash, hopefully not get it whatever it is.
So possibly one of the best things is that it’s starting on Wednesday, I thought she had said next week initially as she had said next wednesday, I think, but turned out to be in two days' time. So all in all a pretty good outcome, the preferred chemo with less time in hospital and the lymphoma not being any worse than what it was before.
After hospital I went home for a bit and cleaned up and then went to my parents, probably the last time I’ll be in someone else's house for 6 months and maybe even longer. So we celebrated Halloween, Christmas and new years with donuts, although I missed these last year as well so in reality it’s nothing new. It will be different though this time around as I’ll hopefully be at home rather than in hospital. I wonder if I’ll be sitting on the loo again for new years haha.
Once I got home though I was shattered and pretty much spent the rest of the day dozing off and sleeping. Tuesday I had my appointment with cardiology. It was in level nine in the Royal but I didn’t know there were 2 level nines, I went to the out patients one first and they directed me to the correct one which was down to the ground round the corner and then up in another almost hidden lift, a little confusing although once there I’d seen that I’d been there before for an ECG just before getting my wedge biopsy pretty much a year ago. First was another ECG and then in to see the doctor or professor, not sure what they’re referred to as now I think about it. And also reminds me that the nurse shaved half my chest for the stickies to go on and forgot to look at how much they took off, it seemed like a considerable amount at the time.
The doctor said there was evidence that the left ventricle was slower and just out of normal range but nothing to be concerned about, at the moment. It can be caused by recurring pericarditis and also by different chemotherapies, so take your pick which it is. Also that it would normally be 10-20 years after the chemos that it would really take effect, my first chemos were 6 years ago, but then I had multiple chemos that could cause it. He would like to put me on tablets to prevent it getting any worse rather than waiting for it to get worse and being a problem and then doing something about it. He would also like to keep a regular eye on me to make sure things are staying stable and keep me on the books. So add perindopril to the sound of rattles each morning. The side effect he highlighted was low blood pressure and could get light headed if I rush to get up the first few days but I’d get used to it and not be as bad after that. I’ve still to look it up and find out more details but I’m happy with the reasons for going on it and what I’ve been told.
Asked about the colchicine and he pretty much said after 3 months there’s no evidence that it really does any good and that it may actually be causing the stomach issues. I asked if it would be advisable to try and come off it again, which he was happy with. That would be great if I was to come off it and my stomach would ease. I miss my oranges in the mornings.
I’ve had another quiet evening and think I’ll head to bed fairly early and hopefully get a good rest for tomorrow. Worst comes to worst I’ll get up a bit early and have a walk on the treadmill before going over and even have a sleep while I’m at hospital. Will most likely listen to an audiobook then all the fun will start again. Hopefully it will go well and things will start to settle again or at least not get any worse, that would be nice.
But now I’ve an official diagnosis again for lymphoma, rubbish I guess but meh, third time’s a charm. I’m trying to think of ways to improve the house to make it more… can’t think of the term, complete? I can’t think of anything more to add to it though, apart from a rowing machine but I don’t think I would use it enough. Maybe though. I switch the room around every few months to mix it up a little but it’s still the same 4 walls.
So a couple of appointements done, 1 more this week and then 3 next week, ENT, Bones and Lymphoma stuff again. Busy busy.
Hope you all stay well and enjoy the Halloween weekend :DSunday 18th October 2020
400 Bad Request Error
Hi everyone and happy second lockdown!! I think, isn’t it? Technically when I’m writing this it’s day 399 for me but by the time I finish, upload, post and you read it, it’ll probably be closer to day 400 hence the name. It’s been a week and a week it has been, Monday I was due to have an appointment with oncology but was cancelled, not only did I have to isolate after the covid test but the reason for the appointment was to go over the results of the biopsy but I haven’t had that. It has now been changed to the week after, or this coming Thursday more precisely.
At the covid test center I was told I wouldn’t hear anything unless I tested positive and on Monday morning I received a call from an unknown number, my precise words when I saw this… “Ah crap”, I answered and “blah blah blah .... you’ve come back negative and your procedure on Wednesday can go ahead”. A bit of a relief though, I was a bit “hmm would having covid been better than lymphoma?”, better the enemy you know, strange feeling though that you might actually think you would prefer to have covid.
Then later on Monday I got another call from an unknown number.... Did they give me the wrong results!? Turned out it was ENT phoning me up to move my appointment forward from 11.30 to 7.30, this was better as I’m not allowed to eat or drink for 12 hours before. Easier waking up and going straight there than being tempted with a breakfast and having to wait around beforehand.
Wednesday came around and woke up, took my tablets and got a lift over to the hospital, had a bit of fun trying to find the place as I didn’t know how to use the lift. it seemed more like a service lift rather than one for people. I asked someone going past and it turned out to be someone I used to work with, I wasn’t quite sure they cottoned on to who I was initially but it was good to see them, it’s been a few years and always had good craic. I ended up taking the stairs up.. To the 3rd floor… this was a mistake, I had to stop a few times to try and get my breath back and stop coughing, it wrecked me. I finally got there and took a seat before anything else and had a look around, then a nurse went past and asked who I was etc and brought me through.
I got my bed, booked in and all sorted by about 8 and waited… I had been 2nd in the queue but was told that I may be moved up to first as the other guy needed to get a Covid test and mine was a quick procedure compared to his. He had been there overnight, but turned out he got his result back and was taken through first. After waiting and more waiting and 11.30 coming, going and still no further on than what I was at 8 and the ones coming in at the time I was supposed to initially, then one of them was sent home….
Finally a nurse came and said that I would definitely be getting sorted today, just no idea when, I dunno what the hold up was, I very much doubt they were doing it just to annoy me and if an emergency I think I’d prefer they got that sorted than something that just didn’t want to sit and wait in hospital rather than at home, priorities and all. I just sat and read, the room was roasting though and very unpleasant lying down on the plastic mattress. Ended up sitting on the side of the bed but as I was in the dodgy nightgown I had to have the blinds closed as I didn’t really want everyone seeing me sitting there half naked.
Eventually about 2 I was up in theater, they used a local anesthetic and it spread down to the top of my throat which made it so that I couldn’t swallow properly and kept choking and coughing. They kept giving me funny looks with the coughing though but what can you do? It wasn’t too bad, I felt most of what was going on, especially at the start, a few sharp jags and poking, it gradually eased and finally a sharp pain when they took the sample they were after, and I’m quite sure there were stitches too. More intrusive than I had been told, had worse experiences. Back to the ward and was told not to eat or drink for an hour by the surgery staff but the ward staff kept on asking if I wanted anything, they were quite insistent but I still felt the numbness and after about 50 mins it had worn off so said about food then and was able to eat it ok.
At this stage I was allowed to leave, got changed and phoned for a lift and was glad to get out of the room and get some fresh air. I had a quiet night and didn’t do too much. My nose was tingly but not sore or anything and was able to get my steps in on the treadmill. I didn’t want to go to bed too early as I’d pretty much been sleeping all day and had been warned about bleeding and building up pressure in my head. With ITP I’ve always got that caution of bleeding, so again after midnight I went on the treadmill and I think there was MLS on and watched that while getting my early steps rather than lying down and with the way things have been lately I think it would build up pressure and give more of a chance of bleeding.
Thursday was another quiet one, nose was still tingly but apart from that and the now usual early roughness all pretty much as expected and similarly on Friday, although kept going downhill and by the end of the day was ROUGH, I couldn’t sleep and ended up listening to music. Saturday morning I was horrible, my nose was constantly streaming and I was completely bunged up in my chest throat neck armpits, you name it, I felt rotten. The tablets didn’t help much or if they did it took ages for them to. It wasn’t till after 2 that I started to feel a bit normal again. Didn’t do too much and just read and tv, plenty of sport though.
The main thing I wanted to watch was the New Zealand - Australia rugby, but it was to be at 3am so a bit of a wait, nothing unusual there. I had the MLS on and then some rugby and 3am came and the rugby hadn’t started, I was getting a bit confused as I’d seen on facebook about the clocks going forward, same memes over and over, I had thought it was too early in the month for that but then the rugby started at 4 and even after checking it said it was to start at 3, but none of my devices had changed time so I was just confused.
Went on the treadmill waiting and was reading too, it was a Chinese based sci-fi, nice to not have America as the center of the universe and quite an interesting take. Next is a Japanese/North Korean story. Finally the rugby came on and I went up to bed to watch it and once done dreamland. Woke up briefly on Sunday morning and was almost relocating downstairs but decided to just lay on and fell asleep again. When I finally got up I felt surprisingly well, tablets were taken and all pretty good. Although my tummy is playing up again so not really sure what is up with that. I’m like 90% convinced it was a combination of fruit and tablets I’m on but I haven't had any fruit, unless it was the marmalade I had so I guess I’m off that too. Thankfully it wasn’t as bad as it had been before.
Sunday I stuck on the cricket on one screen and watched my recordings on the other and then the football. Both the cricket games went to super overs and the MI KXIP game went to a 2nd super over, enthralling stuff. So the rest of the night I will have NFL on and watch recordings. Although I am tempted to go out for a bit of a walk, I dunno if I'm completely up for that or not so I may just go on the treadmill and read or just go up to bed and watch the NFL, be lazy.
Well whatever I choose I choose, maybe a walk in the morning? Or a cycle, I sort of want to make the most of my time before I properly get diagnosed again on Thursday, at least pretend things are “normal” for a few days, not that I really can with the cough which is what's really stopping me from leaving the house. It’s not pleasant, I feel sorry for my neighbors, between coughing and the half deaf listening to tv at 2 in the morning and later.
Well happy 400, that’s a long bloomin time.Sunday 11th October 2020
Sllllooooooowwwwzzzzzzzzz
I everyone, it’s been a few weeks since I updated this but things have been moving a lot slower than I had been expecting and I guess slower than the oncologist thought as well. I’ve kept things low key still over the last three weeks, mostly because I feel rough and unpredictable, one minute I could be feeling great and 5 minutes later I could just get really drowsy and nauseous for no apparent reason. It’s strange I can go an hour on the treadmill and feel grand and yet stand doing the dishes and I’m falling asleep and losing all my energy.
There was one night I went to bed early just as I was really tired then woke up at stupid o’clock and sat around a while but wasn’t getting back to sleep so I decided to go for a walk and was back just after 7. It was the first time I’d been out when it was mizzly, I love walking in the rain especially when I’m prepared for it and it was so nice just doddling along listening to the rain and it hitting my face a little. It was just unfortunate that after I did feel rough but nothing much more than what I normally would have if I’d just stayed in and wouldn’t have had the pleasant experience. At least it meant I could have a lazy day and not have to think about going on the treadmill to get my steps.
Apart from that, I literally have been sitting around watching tv and reading, there’s a lot of sport on though, between football, cricket and NFL, then there’s the odd rugby game, speaking of which there was a fantastic game this morning between New Zealand and Australia, the last few minutes were incredible, I’ll not say anything about it but if you get a chance watch it from about 75 mins till the end.
I had an appointment with ENT a couple of weeks ago, but was a bit of waste as it was pretty much “we’re going to do a biopsy of the active region at the back of your nose” which is what we already knew, so the fact I had to go up to hospital and wait around to be told that seemed a waste and after that I got a letter out saying I had been put on the urgent list to get the procedure done.
Last week I got a call on Tuesday from the hospital saying I’d been referred by my cardiologist to get an MRI scan of my heart. First I’d heard I even had a cardiologist doc since December when I had the fluid drained from around my heart was the last time I'd seen one and that was in the City, this doc is in the Royal. Anyway they requested I was to get the scan and they had space the following day which I took up and on Wednesday afternoon I got my scan, have the appointment with the doc towards the end of the month so hopefully it will be a “we’ll keep an eye on it but we don’t need to do anything now”. I do still get a tightness and cramping in the area and did during the MRI too.
The morning of the MRI I got another call this time about getting the biopsy which will be next week, but also had to get a covid test before going in, I had that this morning which was grand have had the swab tests a few times before so I knew what to expect. The nose poke always makes my eyes water and didn’t help that I’ve already got a tingly nose at the best of times. Again hopefully won't hear anything about this tomorrow and will not have to reschedule all my appointments over the next few weeks, will be a nightmare if that was the case. As I’ve not been out interacting with anyone I’d be pretty shocked if I was to come back positive, the only time I think of when I could have got it would have been at the Mater getting the MRI.
For now I isolate… more… I suppose the next post will be for day 400, the last 127 of which I've got at least 10,000 steps, it’s the one thing I really aim for each day. Wednesday when I’m getting the biopsy may interfere with it, but as I’ve nearly lost all concept of a sleeping pattern I could get the steps in before going to sleep the night before.
Anyway, the waiting is coming to an end and should get some answers soon and get on to some treatment and start to feel a little bit better soon and definitely ease the coughing, it's starting to hurt each time I do and I don't want to end up like last year when I was coughing up blood as well.
Until next time.