Hey everyone hope you are all keeping well. I’ve had an interesting week, despite in reality doing very little an awful lot has happened. Wednesday morning I got up fairly early as I’d gone to bed early and done some steps on the treadmill. Got sorted and I went over to hopsital and round to the treatment area and got my own bed. They said it would be a long day, which I knew it would be but I keep forgetting that it takes so long to get the rituximab and with it being the first time I’ve had it in a while they need to start at a slow rate and gradually work up. Apart from a couple of times where the blood pressure went down all went pretty much to plan. They laying around for 6 or 7 hours isn’t exactly gonna help with the blood pressure but I wasn’t overly bothered. I was able to get it all in the one sitting. I asked about the subcut of it and whether I’d heard that right or not, but apparently there is, just a different formula, so it would be good if that was the case, certainly speed things up a lot faster.
I got home again about 5ish but was shattered as I’d had piriton which always knocks me for 6. I was given the new chemo tablets and clexane to take each evening, or at least that’s what I’ve planned, I was recommended taking the chemo in the evening as it can make you tired so may as well be tired when you’re asleep. Wednesday morning I also stopped taking the colchicine as was mentioned on the previous post, it’s only supposed to do any help for about 3 months and went on them about 11 months ago, although last time I tried coming off them was back in August and seemed to get some symptoms but was also the same time the lymphoma was picked up again but worth trying.
Thursday morning all was grand, took the new Perindopril tablets and all seemed to be going well, in the afternoon though I got quite tired and drowsy and dozed off for a while. Kept it low key and continued with the new evening routine. This was the same on Friday, maybe a bit more drowsy and my stomach started to play up again, so much for the colchicine possibly causing that.
Saturday morning I woke up at about three and had bad cramps in my feet/ankles, got up and had a drink and a bit of a walk around and back to sleep. At five I woke up again and this time it was my neck similar to when the pericarditis was starting up, I kept tossing and turning and by seven it was really bad, not just in my neck but my left armpit, across my chest, up my neck and into my face. The neck is quite painful and the rest is more a bunged up feeling, my cough was getting a lot worse too. By this stage I decided that I’d go back on the colchicine and hope it would ease things, but I was waiting till the proper time to take them. By eight when I did I was rough and obviously it didn't kick in straight away and took a few hours before things, not eased but stopped getting worse. I was completely drained too, I had started checking my blood pressure a couple days before and it’s considerably lower than what it normally is, this was expected though with the new tablets I’m on but considering the amount of sleep I’m getting and still being tired it's a bit shocking, and the cramps and the cold feet and hands.
Sunday things improved, a bit and again on Monday, still a LOT of sleeping and napping and dozing off, my stomach has settled again mostly and the neck and chest pains/uncomfortableness has settled but the cough has persisted and there are a couple more lumps in my neck that I hadn’t noticed before. Everything I do is completely draining and takes so much effort. If I breathe through my nose I seem to be mostly ok but if I breathe through my mouth it seems to catch and then I start coughing and going up the stairs can be a struggle.
I’m assuming and making presumptions, but I don’t think the docs would disagree, the colchicine appears to be doing more than what I was initially put on them for and as the three months may be for the heart, the anti inflammatory part of it was doing a lot for the lymphoma. I mentioned above that back in August I tried coming off them before and that was when we noticed the lymphoma well again this time it seems to have made things a lot worse coming off them, so I feel they are masking a lot of the issues from the lymphoma and tbh being off them a few days was too much, I couldn’t have coped much longer without them. It will certainly need to be something that’s highlighted with the doctors next time I’m up with them.
And finally today, Tuesday, I had an appointment about my bones, I was skeptical whether I’d be able to manage it or not, but after getting a good night’s sleep and then another hour or so in the afternoon I felt up for it ok and was able to get over. It was also just for the x rays rather than with the doctor as well, reducing the time I was out for, of course “Do you have a cough or shortness of breath?”, “yeah but it’s not covid” *Quizzing look* “It’s lymphoma”, “Oh ok” seems to be a regular convo lately.
I treated myself to a BK on the way home and stuck on the football while writing this. It’s draining, my eyes are stinging and the effort of typing is more than it should be, so I think I may just relocate up to bed and watch tv there or read, I read the Northern Lights last week and want to get The Subtle Knife finished and watch the first series of His Dark Materials before Sunday when the new series starts up. Already half way through the book and so I should get that done tomorrow, but holding the book is also a bit of a struggle and I keep dozing off too.
Election night too, I will not be staying up to watchin it as I’m pretty much asleep already, but when I wake up I’ll have a look, at least I don’t think there’ll be an armageddon with the outcome of the result, not immediately anyway.