Sunday 22nd November 2020
And Over
Hi everyone, hope everything is going well. Been another quiet week here, energy levels are still dipping and have little to no motivation to do anything and dozing off quite a bit. Between waking up with cramps and coughing, the nights are pretty unpleasant. Unsurprisingly I didn’t do much this week, the only thing of note really is that I got some Warcraft gametime.
I need something to get a bit of an escape from reality, it’s a bit too hard to read and stay focused and watching tv is just sitting there staring into space so I need something that will work the mind a little bit at least. It’s been about 4 years or so since I last properly played it and so I have a couple of expansions to properly work through nevermind the one that’s coming out in a couple of days. I did get a realm first level 90 monk 8 years ago which may not seem like much but possibly one of my proudest achievements.
Even though that is just sitting at the computer there have been times when I haven’t had the energy to even go on that and end up just vegetating. I’ve been off dairy mostly for a couple of weeks now and the wind doesn’t seem quite as bad but getting a bit more blocked up and slow but all still working ok. There were two times I did take a little bit of dairy one was butter on pancakes and suffered a bit that evening and the other time was a bowl of ice cream, I don’t think it was a high milk content ice cream but I noticed it a bit later that evening and after a couple of days everything seemed to settle again. Main issue is just eating generally, my stomach seems to have shrunk and I struggle to eat any volume of food and so has to be little and more often. And much easier to take wet foods, not alcoholic but actual wet, damp foods like fruit or something with a good strong flavour that I’m in the mood for. Always really helps if it’s something I take a notion for.
On Monday morning I thought I would take the precaution of getting checked to see if I had covid, the main reason being that I really didn’t want to be that person that brought covid into the Bridgewater Suit and infect all the vulnerable people and staff. I’m pretty certain I don’t have it but just wanted to have it on paper that I didn’t. I booked it and an hour later I was sitting in the car with a stick up my nose, the worst part this time was the back of the throat, it really tickled and made me have a coughing fit. Didn’t hear anything back that day but the next morning got a text to say I was negative.
I’m starting to struggle to get out of bed in the mornings, I get so cozy and just lay there and then doze off again and then the next thing it’s near lunchtime, well not quite as bad as that, I think the latest has been 11, but that’s really not my normal thing, I like getting up and doing.
Thursday was hospital day and nice and early 8am aka as early as possible. Got bloods done and then out to the car to wait and about an hour later got a call to come up. I’ve given up using the stairs and started using the lift up, it’s only one floor but I struggled with it last week and I'm much worse now. Again not like me, I nearly always try to use the stairs. In to speak to the doctor, I say speak but on Saturday night I was coughing and lost my voice and since then I’ve been croaky at best, you can’t miss it, it’s pretty annoying as pretty much all my switches are voice controlled but one thing I have noticed with Alexa is that if you just emphasise the consonants it works ok which is good otherwise I’d struggle turning on the TV or any of the lights.
It was pretty noticeable when I was talking with her and the coughing too, told her the stomach wasn’t as bad but was more bunged up and about the cramps and about getting the covid test, she was very happy I’d done this and that I was so thoughtful, although I was more being thoughtful of me not wanting to get my name splashed all over the papers about being the person that infected all the vulnerable people lol, she was going to say about getting a test done, there doesn’t seem to be any sign of infection, mucus is either clear or creamy white, no temps or fevers, just a really bad cough. Thinking about it I’ve pretty much had a cough for maybe a year and a half, definitely for a year since the surgery and I think about June before then when everything started to go wrong. I just hope it doesn’t get to the stage where it starts bleeding again.
She sent me for an x ray to get my chest checked and my intestines too, the lungs are pretty much the same as how they were the last time they were scanned and x rayed but will stop the perindopril to see if that will help ease the cough over the next week, if not will be referred to ENT again to investigate. The intestines were, not surprisingly, bunged up so will take laxatives for a few days to help clear that. In regards to the cramps I pretty much just have to live with it as it’s to do with the lenalidomide and nothing can really be done about it, I do think a little of it has to do with the lack of exercise now too, I was just shy of 100 days in a row of doing the 10k steps then to doing nothing, certainly not going to help, but I’m really not going to take any chances, I’ve went on the exercise bike a few times but it's as much to just move the legs for a bit, and maybe only for 5 or 10 mins at a time if even that.
So after the scan and back to see the doc the retux was already there for me so went round to the treatment room took my seat and all the updates to paperwork and then the premeds, waited half an hour then got the subcut retux. It seems like sooo much that needs to be injected and considering it’s just under the skin too. They need to do it over about 5 minutes, starts off a bit stingy but then the brain gets used to it and ignores it and it’s ok after that. I needed to wait 15 minutes and then get the blood pressure, which has been generally lower lately as well which I’m sure doesn’t help with the cramps and tiredness too.
The subcut leaked a little bit, not loads but it went over my shirt, didn’t help with where the nurse injected it as there seemed to be a bit of pressure from the beltline, sort of pinching it out. It stopped and was grand by the time I got home. On the way home I treated myself to a Mcdonalds, well the saver chips and cheese burger, was in the mood for the salty chips and gherkin. That evening I was shattered which I normally am on Thursdays and went to bed about 7ish I think and that was me watching tv, dozing and sleeping properly by 3, woke up a few times with cramps and then coughing. I almost forgot I had to go back to hospital today to pick up some tablets. I was dreading it to be honest. I was still shattered and coughing badly, but it needed done. I went over and parked near the bus stop on Lisburn Road and walked up the path between the Cancer Center and hospital. I had to stop at the top for a bit to get my breath back and settle my breathing, I went on in and round to the treatment room again with just about enough croaks making enough sense that I was there to pick up the tablets, well injections it was the clexane I was getting. Have plenty of dots and bruises on my belly now after 3 weeks of injections, still another 5 months of that. I needed to leave a letter to the GP about it, the last time I didn’t do it straight away and was constantly on my mind until I got it done the week after so I thought best getting it done straight away.
I was so glad to finally get home, I got a message to say a parcel had arrived, that wasn’t supposed to until Saturday but thankfully the neighbour took it in, I called in straight away and they were going to hand it to me but I didn’t want them getting close with my cough and well I try to stay away from people so I got them to set it on their doorstep and went and picked it up, seemed a bit rude in a way but I’m sure they’ve heard me coughing and I don’t want the blame if they start coughing too. Sprayed it when I got in and changed into the lounge wear again. Typical that I leave the house for less than an hour and that’s the time something gets delivered, only mentioning this as it’s the first Christmas pressy bought and of course that can’t be done without treating yourself too. Pretty much everything I get people is something I would like if I was them, sometimes it’s hard to pass it on knowing I want it too.
Before getting properly settled I made lunch, I say made, I chopped up some fruit and put it in a bowl, banana, orange and strawberries, sprinkled some sugar and then poured some milk over. Always loved banana, milk and sugar when I was younger and very much still do. It was a bit of a test too for milk and my stomach, despite enjoying it so much it may cause some real issues later, which it did. The cough was pretty bad all day and just generally felt crap, it wasn’t until later that I realised that I didn’t cramp up the night before and only a couple of times today, my muscles might have wasted away enough that they’ve given up on even cramping.
Stomach ended up being really bad, I was dreading going to bed as I knew I’d get a couple of hours then wake up choking or having cramps and go into a coughing fit. I got about 3 hours sleep and of course half an hour of coughing then half an hour on the loo, by that stage I’d given up on the idea of going back to sleep and just went downstairs and stuck on some tv and looked around for some more Christmas stuff. Shopping local seems to be the new going to the gym, it never happened unless you tell everyone about it, which would be grand if they advertised the shop they bought it from, but they aren’t they just tell everyone about their “good deed”. Mention the shop, give them a good review, recommend them to others, comment and share their posts to increase the reach etc, that will help them more.
With starting to play on the computer a bit more I needed to reshuffle things a little so I could get comfy and still be able to watch tv with the footy on or a film or something. I always had the two monitors but only using the one now so have moved the desk and sofa a bit, more squeezed together but as it’s only me in the room it doesn’t really matter, as long as I can see the TV and lay on the sofa for a nap etc, so works better for me. Plenty of football on again on tv with the PPV being cancelled so the weekend is pretty much sport from start to finish again.
I had a nap in the late morning to make up for the lack of sleep the night before, again that night dreading going to bed as I really don’t like waking up choking so I didn’t I stayed up, not late or anything but instead of going to bed I just lay on the sofa and slept there got a few hours then coughing, lots of coughing, I done some breathing exercises to try and clear the chest a bit and thankfully dozed back off again for a few more hours. And that pretty much brings things to now.
Not really sure how the chest is doing, at times I think it’s better, then other times it's worse, pretty much certain now that I have an intolerance to dairy, hopefully no other foods but will keep an eye on things over the next few weeks and come off dairy again and hope that things settle quickly. Lunch time now but not sure what to have.
Until next time enjoy.Saturday 14th November 2020
Over and Over
Hi everyone, hope you are all doing well, I’m not really sure what’s going on outside if there’s a lockdown or what, the only thing that seems to be closed are the pubs and restaurants everything else seems to be going ahead. Makes no difference to me though as I’m staying cooped up in the house.
Continuing on from the last blog, I was back up to the hospital on the Thursday, got the bloods taken and went to see one of the docs, all good and she gave me stuff for my stomach to try and help ease that, so will have to take the script to the GP on the way home. I was due to get the subcut version of the Rituximab which will be a lot quicker than the infusion which takes a few hours to get and with gradual increases in speed can throw a few issues into the mix too.
Finally after a long wait to get the subcut version delivered to the treatment room and getting the pre meds they were doing their final checks and realised the last week I didn't quite get to the maximum rate, the blood pressure had lowered and they kept it going at the same pace for a bit longer rather than increasing the rate. They know me quite well and know it’s best not to take any chances and so wanted to get the maximum rate first before going to the subcut. This would mean I’d have to come back again tomorrow as there wouldn’t be time today to get it ordered and infused. I was ok with this as I also know if something is going to go wrong, it’s going to go wrong for me.
Following day went back again and got the infusion and all seemed to go grand, that evening my stomach started to play up again, this continued for a few days and reached a peak on Sunday even being sick with it and the tiredness of going up the stairs. The cough is also pretty bad. On Friday I got tablets delivered and came with a note to get my BP and bloods taken at the GP, although it wasn't very clear what was needed to be done so I phoned them up and got an appointment booked for the next morning. That was straightforward, just a quick visit and was nice to stand outside for a little bit and get some fresh air.
I’ve started to get really bad cramps as well now, I’m ok if I’m sitting but once I lie down after a short while I get them, I move a bit and get another in my chest, stretch that and get another on the opposite side it’s constant and really annoying in the middle of the night when it’s waking you up every hour. My stomach seemed to settle by wednesday and was mostly ok and grand again on Thursday.
Thursday hospital day again went up and checked in at reception but I wasn’t on the list… it was the same person that had “booked” me in last week so I asked when my next appointment was supposed to be and it was next Tuesday, not really sure why he booked me in for then. Of course he tried to make it out to be someone elses fault, no point getting in to an argument about something stupid though. I ended up just going round to the treatment room and getting my bloods done there and waiting till it was time to see the doc. Told her about the stomach again and the cough, apparently there is a protein that can build up in people with MZL and can cause issues, so she’s organising an endoscopy to get checked for that, it would be nice to get a reason behind it as I’ve been off milk and dairy for over a week now and until yesterday was still playing up. Forgot to mention the cramps but she did say that the cough could be caused by one of the new drugs I’m on, timewise it lines up and could be that, I was blaming coming off the colchicine. After the appointment I went to the car, got my bag, a drink from the shop and then back to the treatment room and waited there till the subcut Retuximab arrived, there was a lot more than I was expecting and surprised it was all able to be given just under the skin. It leaked out a little bit while we were waiting to get the final checks done but was only a little bit and nothing concerning.
Thursday continued well, apart from the cramps and being tired everything was grand stomach was doing well and it was nice not to have to worry about that. I watched the Northern Ireland game that night and just lay in bed watching tv. And finally Friday the cough was annoying and the cramps too so got up early and watched some of my recordings, a spot of breakfast and eventually a nap. Everything was going well and feeling pretty good compared to what I had for a while. Then at 6 my stomach started to play up, the only thing I think I had that was different today compared to other days was that I had pancakes for lunch so I won’t have any of them tomorrow and hope it settles again. Friday night I was in bed from 8, again the cramps being a real bugger but not as bad as they had been on other nights. The cough is certainly a LOT worse. I can barely breathe without coughing and it has been nonstop and it’s not as if I’ve been coughing up anything.
It’s all just so draining and there’s so little I can do about it.Tuesday 3rd November 2020
Prelection
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.
Anyway, before that, I’m off to bed.