Hi all only a couple of days again since the last post but it’s all go at the moment. Wednesday morning I went up to hospital and gave bloods and told the nurse I was going for the heart trace in between then and seeing the doctor and that he knew about it but I should be finished in time anyway and shouldn’t interfere with anything.
At the outpatients I stood waiting outside the wing as I didn’t want to loiter inside and there was no one about so I thought maybe I was their first patient, which I think I was anyway. Waited about 20-25 mins and still no one at reception, it was still before my appointment time, but eventually, a nurse went past and spoke to me and asked if I’d been told to wait out there, which I hadn’t and told her that there was no one about or at reception and didn’t want to loiter in a tight corridor. She took me down to the far end of the corridor and asked to wait outside a room, not exactly sure how anyone was to know to go there.
I got called in and said to the nurse about the potential pericarditis, more so that it would be looked for than just doing usual checks and maybe not taken note of but I’m sure it’s probably something they would have, better safe than sorry. After I asked how long it would be for the results expecting it to be a couple of days but she said about 10 mins it would be on the system and that my doc would be able to see it. Excellent.
Went back to Bridgewater and said to the nurse I was back and just waited in the waiting area out of the way for a change rather than going to the car, I wasn’t expecting to be waiting too long and only about 30 mins later I got a phone call to come in. While I was waiting my original haematologist from the city seen me and came over to ask how I was. I hadn’t seen her for quite a long time. Notable encounters of meeting her when I wasn’t her patient are when she was visiting a relative in bed beside me the day I was initially diagnosed with lymphoma, another I was going to Slieve Croob and she was at a funeral just outside Dromara. It had been so long since I’d spoken to her she thought I was still teaching and she was pleased that I’d left it, generally with the risk of infection nevermind covid. It’s always nice to see her though.
She said a few things that at the time, didn’t seem out of context but looking back make more sense. She had obviously been in the meeting with the doctor I was about to see. I got the call and went into the doctor, and I’d said about how I’d been feeling the last week and my thoughts and that I’d the ECHO that morning and should be on the system. The ECHO didn’t show any fluid around the heart which is obviously a good thing and we thought best to start back on the colchicine to see if that would help settle things and leave the steroids as they are.
That morning the results from the CT hadn’t been posted and they had to chase it up and got them through not that long ago. They showed there were a number of swollen nodes in my neck and armpit, where I’ve been getting the pains, the largest being 1cm in the arm and 0.9cm in the neck, and a small one close to the bone in my leg too. They are normally not overly concerned about swollen nodes unless they are 1cm or bigger, so there is one, but as only 2 months ago they were all ok and with my history, they want to chase it up urgently. In the past any of my cancers have been very slow in development so getting something so quick is unlike me. So for this, they want to get me booked in to get a PET scan urgently, how soon that will be I’m not sure but everything has been very manic the last couple of weeks and I’ve been pretty lucky that some tests required had already been booked in for for the BMT, PET scan being one but hadn’t heard about it yet. Just have to wait and see. The swollen nodes were one of the reasons they didn’t want to increase the steroids as it may affect them and hide what we are looking for in the scans and give a tainted result.
There was also something in my throat they are referring me to ENT for, I’m not really sure what this is, inflammation or something, I’m not sure but that’s getting urgently booked as well. I got a call from my haematologist later that day and she went over the results in a lot more detail than what I had been told face to face, things I mentioned in the previous paragraph, this was more of a why we’re doing this that and the other whereas the one in the morning was this is what we’re going to do, I like knowing the whys.
After the appointment in the hospital with doc he wanted me to get an ECG as well just to double-check about the pericarditis and completeness but one of the nurses there was able to do that so got it sorted pretty quick, that is except for the problems of getting the patches stuck to my hairy chest.
Basically the results from today mean I need more tests, it’s narrowing things down to find exactly what the issue is. I think the main part was there was no fluid around the heart, but I definitely was getting heart pains and I started the colchicine once I got home and today I don’t seem to have the heart pain but still the sore neck, arm and chest, it’s not a great day to judge though as I had my tablets in between the echo and seeing the doctor, later than normal and then again more or less today so it’s not really a valid day to judge it on, tomorrow will be more telling and it may be a completely mental thing maybe because I thought it was x I focused more on have x’s side effects.
Anyway there ya go, despite everything on paper probably being “bad” it didn’t feel like a bad day, I was happy, getting closer to answers and felt pretty decent compared to what I have been generally lately, rough this morning though but that’ll die down soon when the tablets kick in.