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.