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 :D