And so to the results of the biopsy it took me by surprise and I wasn't confident that it was the correct result but it came back as lymphoma after 2 months of all the testing that was done checking for everything under the sun and being told initially that it wasn't lymphoma, very frustrating.
Although over the time building up to this I had been told that it could come back as lymphoma but not actually be lymphoma it could be remnants of the last time I had it so I was sceptical.
I was moved back over to the city hospital as they would be able to treat me. Of course more frustration when there and getting my BP checked.. Your bp's low and your heart rate high... Doctor called, oh hi Alan, that's normal isn't it, yeah, that's grand.
And the same again later at change over with another nurse. I know they're doing what they are meant to do but it's just bloomin frustrating.
The doctor in charge I know well I have known her for I would say definitely at least 10 years. And was part of the team for my last lymphoma. She came to explain every option they were currently looking down be that a clinical trial, getting funding for specific drugs that may be best suited to the the situation, or using what is already on offer.
After a few days and speaking with specialists she came back to say what the plan will be there is a drug/chemo, I believe an old one, Bendamustine which they thought would be best for my specific condition, but it isn't supplied on the NHS and they will need to request funding for it but they didn't seem too concerned about this at all.
Everything seemed to be going fine I was able to go walking and not get short of breath, my chest was getting nice and clear and I was feeling pretty OK.
But then Saturday night after watching a film in the chair I got up and lay in bed to go to sleep then agony in my left lung nothing I could do would settle it, I asked for pain killers and didn't seem to settle it at all. I think I got some sleep and the next morning it was still sore. I said to the guy that was doing my BP would he get the nurse an hour later still nothing he came back to do the BP and my temperature was down a bit heart rate higher into the 130. "your temperature has went down which is the main thing" and asked for a nurse for the pain. Heard him say "he's a little bit of pain in his chest".
When the nurse came in I told hers it's not just a little bit of pain this is very sore. Ended up getting an ecg to make sure the heart was OK, the pain continued through the day with the pain meds getting stronger and stronger and finally I got one that actually eased the pain. I ended up getting an xray and ct scan as they were looking for clots but came back clear and the excruciating pain continued.
The following day Monday a consultant had a look at the ct scan again and thought there may be fluid around the heart and within half an hour they were at me with the echo machine, they went off for a short while and then were prepping me for theatre, there was a load of water around my heart which was putting tension on it making the heart rate rise and the pain. So well within 2 hours of the ct 2nd result I was in theater getting the fluid removed.
In theatre they got about 370ml out and in the drain the following days they got another 200ml. It was quite scary someone with a 6inch needle going into your chest avoiding your liver and lung, piercing a sack around your heart that's going about 130bpm. But all went well thankfully.
Drain was removed and had another echo where they saw there was still fluid around the heart but not an emergency case and wee happy to send me to the haematology ward from cardiology. Friday I had an echo again and there was no increase in fluid, they were potentially going to drain that too but would delay starting the chemo which had already happened with the first procedure.
So the plan is to get a picc line in on Monday and start treatment on Tuesday.
Although this morning I had the heart pain again but certainly not to the same extent, surgeon came to do an echo and was more than happy with the results there was very little fluid so could just be the inflammation around. He suggested I just stick to the pain relief for now.
Haematology doctorcame back and I said I was starting to get sore again and he suggested about going on to steroids, I asked as the first 2 days of treatment are steroids could this potentially mean I could start the chemo earlier and he said it's a possibility so that would be nice, now have my first dose in me, I'll be running round the place later haha.