On Friday as was said on the previous blog the steroids were reduced and I was unsure about whether this was a good idea or not but it was a good opportunity to get off them straight away again rather than weaning off them over time like has been the case previously. This ended up being a massive factor over the weekend. Generally, Friday went ok, I went for a walk at about 7.30 and came back just in time for the porter to arrive and take me to X-ray. I noticed at some point around then that my shoulder was a bit sore, felt like referred pain, I was putting it down to doing the walk and that it would settle soon.
It didn’t, in fact, it just gradually got worse and by about 1am it was sore rather than irritating, I told the nurse and she informed the doctor about this, the heart rate had gradually been increasing as the day was going on which I didn’t take too much notice of at the time. The doctor came and I told him about what was wrong with the sore shoulder and starting to move into the neck a bit also, but that it was awful but was still gradually getting worse at this stage I already knew exactly what it was and what to do about it. It was spoken about earlier that if anything was to happen that I would increase on the steroids again, this was obviously not relayed on to the night staff but then their hands are tied to an extent. He completed a heart trace to make sure everything was fine with that and told him what was said earlier about the steroids, the last time cleared it up the pericarditis within a couple of hours and also that the only pain killer that gave any significant relief was oxynorm. He said he wasn’t going to increase the steroids which was fine and he would get me some pain relief too but not going to the extent of oxynorm.
Saturday the pain in the shoulder gradually increased even further, the consultant and ward doctor that was on that day spoke with cardiology, they started me on another drug which is supposed to help and was given some pain relief also. They have booked for an out of hours echo scan to see what is happening with the heart to check if there is any more fluid build-up that may be causing it or just inflammation, this is supposed to be tomorrow morning. Again it was said if this doesn’t help we’ll increase the steroids… neither did. The pain relief I was on before has been halved due to my loss in weight and it has never done anything when I was on 10mg so I doubted it would do anything at 5mg.
By 8pm the shoulder, neck and now chest too was unbearable, I told the nurse and was told that the tablets and pain relief would be coming around in about an hour, I waited. Of course, by 9.30 when it did come it didn’t do much and by this stage I was unable to move my left arm much, shoulder felt like it had a knife in it and my heart being squeezed in someone’s hand and getting tighter.
Again the doctor, the same as the previous night came and repeated the trace again from last night and again I repeated about the steroids and oxynorm. Eventually, after the pain gradually getting worse and worse, it had been unbearable by 8pm so you can imagine how it felt by 2am, I was really struggling with it even well before 2am, something had to be done and finally a dose of oxynorm, it didn’t ease it completely but it made it a hell of a lot more bearable and the best part was it made me incredibly drowsy and I was able to fall asleep.
The next morning when I got up the pain was still there, a dampened pain but there all the same. The ward doctor came about 1030 who was in the previous day also so knew what was going on, she went to see the cardiologist again to see exactly what would be the best thing to be done.
On her return, maybe it was a mix up of words or what but the echo was canceled until the next day which I had assumed was the main reason why they were keeping me off the steroids so they could see the inflammation. The cardiologist had said that there was no point going back on the steroids as it would have no effect and that the new drug might help but will take 2-3 days to have any effect… I was in disbelief the steroids had obviously worked the last time so how they have no effect I’m lost. Also the unwillingness to give me ample pain relief didn’t bode well for me that day.
So basically I’m currently left here with no steroids and pain relief that doesn’t relieve with the pain gradually increasing again already in the morning.
At 1 the main consultant came round with the ward doctor and by this stage the pain had already built up not to the really bad extent from the previous night but it was starting to edge that way much earlier. I made it incredibly clear that I was not willing to go through what I had the previous night and they decided to put me back on the steroids. I intentionally didn’t take any pain relief after this simply to prove to myself that the steroids do have an effect and do help. And sure enough, 2 hours later it was clearing up and by the evening was gone completely.
The following day, Monday, the ward doctor came round and there was a possibility that the chemo may be delayed, they want to get the results back from the echo before making any decisions. I obviously went for the echo and had an inkling that something wasn’t quite right. She finished then went back and took a couple of extra scans.
My main consultant came around later about 5ish, by this stage I knew I wouldn’t be getting the chemo today, she was impressed with the x-ray on Friday about how clear it looked compared to the previous one, I had been complaining about my lungs being sore on the right, but this is most likely just from the surgery and it healing up but she wanted to get an x-ray all the same. The weekend obviously didn’t go to plan but we decided that the next time we’re reducing the steroids we’ll go much slower. We talked about the pericarditis, the scan showed there was about 1.5cm of fluid build-up but that it wasn’t having an effect on how the heart was working and there could be a chance that I may have to use the steroids as a maintenance dose to keep this at bay which I found a bit amusing as only a month ago I was finally after 23 years or able to come off them and now on them again for another thing, which makes me think that maybe the pericarditis has been there for a long time but was never picked up as I was already on the steroids.
Then we spoke about the chemo, she gave me two options; option one was to go ahead with the chemo tomorrow, this would mean it would be 2 weeks until the next dose of bendamustine. Option 2 was to just skip the chemo this week and jump into cycle 2 next week where I would start the full doses earlier than the other option. I chose option 2 and she thought that was the better option also as I was coping with them so well, so New Year’s Eve and the day before will be bendamustine days and then the two Mondays after will be obinutuzumab.
Next thing that was mentioned was Christmas, she asked if it was ok if I was to stay in, I didn’t mind his one bit, I’ll have a Christmas like Christmas should be sitting about in my PJs doing very little.
Tuesday was Christmas Eve, and all very quiet, I finally got my hair cut it was probably as long as it has been for maybe 10 years and desperately needed cut the last 3 months or even longer, that was about the only thing that really happened. Ordered my Christmas dinner which I’m looking forward to.
Now it is Christmas Day and pretty much will be a nice quiet day with a lot of doing little, Christmas dinner was lovely. They gave me some Christmas crackers too so I’m currently sitting here with my paper hat on to keep my head warm a bit, always feel every breeze there is for a couple of days after getting it shaved.
Q: How does Good King Wenceslas like his pizzas?
A: One that’s deep pan, crisp and even.
Can anyone explain this one, it’s over my head no idea who Wenceslas is?