Hi all, last I updated was last Monday when I had discovered a lump in my neck and just as I was posting it I got a call to go to the hospital to speak to the doctor. Once there I was brought to a side room and bloods were taken and just took a seat and read, couple of nurses I knew came in to see me which was nice, even with the mask on they knew me. After a while, the doc came in asked for an update, it was the lymphoma/haematology doctor so I hadn’t spoken to her for 5 weeks so updated her on how I’d been feeling the last couple of weeks and finding the lump on Saturday morning. The white cells were up but everything else seemed to be fine so points to an infection and put me on antibiotics and booking a CT to investigate further, she also mentioned that the lump was quite loose normally cancer lumps are more fixed.
I was already booked in for an appointment on Wednesday with the BMT doctor and again on Monday for a phone call with the lymphoma doctor. Wednesday I went up nice and early, bloods taken and went off for a walk to kill time until the results came back. I avoided taking my tablets that morning so that I would be able to describe exactly how I feel rather than trying to remember and the swelling and lump would be at full effect the walk wrecked me though compared to the last time. He didn’t bother having a feel at the lump or anything but he did say that he could clearly see the swelling. I was quite out of breath when speaking to him, but I had just been for a walk and back to the car maybe 5 mins and then rushing into the hospital, when I was going through everything I didn’t really give myself time to take a breath. Plus I’m not really used to talking to people so probably get a little bit excited when I do get the opportunity to haha.
Again he said that the only count that was out of sorts where the neutrophils which is unusual, but with the spleen removed and on steroids I would generally have a higher count but even this is high for me. Everything else was pretty much as expected. He was happy enough with being on the antibiotics and investigating further and he noticed that I have a CT scan on Monday morning. I hadn’t got the letter for this yet but when I got home it was there.
I took my tablets and sure enough, a couple of hours later I felt 100% better again. The next day I decided to run my own tests for which tablets are making me feel better, I was already sure it was limited to 2 I was taking and sure enough the ones I thought it was I took first alone and a couple of hours later was grand, they were the steroids so it could be an inflammation thing and the steroids are helping reduce it until the next morning. I took the rest of the tablets as soon as I’d perked up.
Thursday night after midnight I decided to get my steps in while I couldn’t sleep and felt pretty good, as I know the mornings I feel like shite and its more of a struggle. It wasn’t until Saturday morning when I was lying in bed with a sore neck, shoulder and arm and a tight chest that I realised… This is pericarditis.
Then it nearly all made sense, 6 weeks ago the steroids were reduced 1mg a week from 20 to 15mg a day and also stopped colchicine which I was put on for the pericarditis back in December. The swelling in the neck is the same as then and the general feelings which are “lymphy” like which are probably more blood vessels etc. Also started doing my blood pressure and heart rate more regularly rather than just in the morning and I noticed the heart rate is a LOT higher in the mornings about 100bpm and reduces to ~70 in afternoon and evenings. Once I picked up on this I decided I’d avoid the treadmill completely in the mornings and hold off till everything settles and then get my steps.
In a way this was a relief, I am now quite sure I know why I’m feeling rubbish, but even with the pericarditis it doesn’t explain the lump. Swelling and everything else it does though. And this is still all speculation until I get the tests done to confirm it. If I’m right though this will be the third time I’ll have had pericarditis, what this will mean long term I’m not sure. What this will mean short term and the BMT I’m really not sure. I know the current aim is to find out what this is and get it sorted, pretty frustrating that the final checks are being done prior to the BTM so I can just really hope it doesn’t delay things.
It does scare me a bit that I may have long term heart problems now though, remembering back to how I was in December of all the experiences I’ve had I can probably say that that was the scariest and worst of them all. Watching a needle being stuck into your chest and moved so close to your heart when it’s been pounding at 150bpm for 24hrs, I’m sure there are worse things though.
I’m dreading tomorrow, mostly because I’m not taking my tablets until after the CT scan so will feel like crap for longer than I would like to, I have my phone appointment first thing so I’ll be able to tell her my thinkings and see what they have to say, and with the CT scan also just to confirm things, it may even mean I may not have to go for a PET scan prior to the BMT doubtful though. I’ll be glad to get home and take my tablets.