Hi everyone, happy new year although all that really means is that you need to remember to write a 1 instead of a 0 at the end of the date. I had a New Year exactly as I had planned and wanted it, I went to bed about 9ish and woke up soon before midnight and went to the loo, same as I did last year, except I was in hospital last year and thankfully at home this year.
The last day of 2019 was my first dose of chemo again and again this year finishing off 2020 on chemo, hopefully not finishing 2021 on chemo and actually have all this behind me by then, but knowing me it will be short lived before the next thing comes along. Need to make the most of the times you can… and can’t.
I finished the course of chemo on Monday and had hoped things would have picked up, they did to an extent, the cramps improved and wasn’t quite as tired, but my stomach is still playing up badly. When I was off milk completely it seemed to be ok but after a week or so of being on the lactose free milk it seemed to start up again and hasn’t settled since, even with coming off it completely again.
I can’t seem to eat much at all but am continuously thirsty, same happened last year when I went off food, can only seem to eat a little and very picky with what I can eat. Things I quite like, I have a couple of mouth fulls then just not able to eat any more and feel sick cause it’s not what my stomach wants. Might start blending food to try and get a bit more in me consistently and make it a bit easier, will try it and see how that goes.
I have been getting onto the treadmill for at least 30 mins each day, some days a bit more if I can. I have noticed a few times my heart getting tight and have stopped straight away. It’s happened a few times at night also and have had to get up and get a drink to ease it a bit which so far has seemed to have helped.
Another thing is the cough, it has gradually been getting worse... still, pretty much since Christmas so I’m putting it down to the tablets which we had a bit of an idea could be the case but there are other options but I think they would prefer I didn’t go onto them. As long as it’s not the infection back again but will find out when the bloods are taken and get a better Idea.
Just before Christmas I got a letter about getting a PET scan on the 7th, I had to phone up the hospital to make sure that it was ok to go ahead with it as they had said about getting it done after cycle 3 rather than cycle 2 which it is booked for. They were happy enough to go ahead with that, I suppose it could speed things up after cycle 3 to get things sorted for the BMT but with the way things with COVID are going this might not be as straightforward as initially hoped. Will have to just wait and see at least there is something that is currently helping and could continue on that for another 3 months while waiting to get into hospital. I stayed up a bit later watching tv and reading so I’d be able to doze off while waiting for the chemicals and scan, it’s an hour and a half of just laying there which goes in a lot faster if you’re asleep. Unfortunately I didn’t sleep and ended up just staring at the back of my eyelids. Didn’t help the rest of the day and seemed to be more of a zombie than normal the rest of the day.
I zombied on through and Monday morning, back to hospital for the check up and hopefully starting cycle 3, bloods taken and obs done and out to the car to wait, back in to see the doctor. PET scan results are back and have shown that there is nothing to see so all has cleared up, but let's not forget this happened last year as well and in the wait to get the BMT it had came back, thankfully this time we have a bit more wiggle room as there are potentially 4 more cycles I can have while we wait for a bed to open up, to keep it cleared, initially the pharma company gave us the go ahead for 3 cycles but gave us the all clear to fund us for 6 a few weeks ago with the scan results in December. There does seem to be a lot of concern about things being held back with covid as some of the staff look likely to be moved to covid wards over the next few weeks. Hopefully not be too long a wait and be within the next couple of months.
Said to the doctor about the stomach, cough and tiredness, nothing really unusual as such and certainly nothing new, but things that would be best settled. There were no signs of infection so the cough is quite likely with the tablets, the stomach I’m still pretty sure its something I’m eating is the main issue of why it’s playing up and making me not want to eat and with the tiredness it’s no surprise as the amount of meds I’m on they are bound to cause issues.
She was happy I wasn’t losing a load of weight, cough not really productive, certainly with nothing nasty and that I was taking it carefully with the walking and not taking any stupid risks. Obviously she doesn’t want me taking any chances with covid either as best case scenario will push things back and stop all treatment so for the sake of a few months there’s no point taking any stupid risks. I’m pretty much back to where I was in July again now, but most of the tests have already been carried out and will hopefully see the transplant doctor again soon to get that ball rolling and see what needs to be done again.
Apart from that, there really hasn’t been much going on, I’ve started reading a bit more again and already finished 4 books this year. I’ve been getting tired quite early in the evenings so have been going to bed after I’ve taken my tablets, sometimes even before then and getting up later to take them. Only problem with this is that the bed gets too warm for me. I like a cold bed, I sleep better, but if I'm spending more time in bed I have more time to get half as good a sleep and so the sleep quality score is about the same.
I’m hoping over the next week or so that the stomach settles again and I can build up enough energy to maybe get out of the house for a bit to go for a walk, just a short one for even 15 mins to get a bit of fresh air. I like getting out early though and with the ice and frost it puts me off, dodgy enough if it was decent weather so no point taking any extra risks.
I do need to try and start something that requires the brain to work a little, I did start Insyplex, I plan to build up about 100 tv shows for some content then just adding books and films that I’ve read or watched this year and tv shows that would be worth noting, but doesn’t require much thinking after the initial coding. I was thinking about book binding, would require a bit of thinking and would actually be doing something too, could be an interesting hobby. I just need something new to keep me busy, I’m sure I’ll find something, or I could just get obsessed with gaming but would prefer to find something maybe a bit more “productive”. It would be pretty good to get the car converted into a bit of a mobile home so I may spend a bit of time looking into that and getting ideas and then never actually doing it. Shadow boxing (as in the artsy box and pictures) is another thing that I picked up on that I might try, or will at least look into, at least if not trying the things I can do a bit of research and learn a bit about them.
Despite being a bit grumpy this morning with lack of sleep it’s been a pretty good day so far, I normally treat myself to something on the way home after hospital but I dunno if I will or not today, don’t particularly want to waste money on something I’ll have a couple of mouth fulls of and end up binning the rest, but if i take a notion for something I’ll get it and hopefully be able to eat it. But for now I'm sitting waiting in the car to get the call to come and get the rituximab and pick up the tablets I need. So I've a bit of time to kill.