Good evening everyone.
Good news - the cancer has not spread beyond my lungs! He thinks Immunotherapy is the best option for me (due to the pneumonia I had in October and complications from an illness I had several years ago). There is a possibility of there forever being an infection lurking, albeit it at a low level but chemo could cause a flare up. However to have the Immunotherapy, the cancer cells need to have a 55% covering of a particular protein - don't remember it's full title but it had a P and a 1 in it. My cells only have 35% of this protein so he has to write to the health board as I'm not eligible under current NICE guidelines. He is quietly optimistic but there is a 3 week turnaround, however he said there were no changes between my scans in June and July so it shouldn't be an issue. If it's a no to Immunotherapy I'll need Chemo and Immunotherapy, but at least thete's a plan B.
In my left lung, where they diagnosed secondaries, he said the "spots" were very unusual in that they had holes in the middle like a polo mint. He said they weren't unheardcof but very rare. They can't be sure what this is but having taken all sorts of samples and not being able to grow any bugs, it probably is cancer. However if it was some kind of bug, again the chemo, if I were to have it, could cause it to rear it's head.
In the meantime he has prescribed Oramorf for the cough and pain which I'll pick up tomorrow.
I did ask about how much time he thought I might have. He said he could give me stats but individual cases depended on response to treatment. I declined to know the stats, mostly as some of you on this forum haven't found it helpful and they're outdated. And indeed many of you on here are proof of that!
My husband missed the appointment due to a mis-communication between us and is very angry tonight. His focus is on how they didn't pick up on the cancer sooner seeing as I had regular checks for the pneumonia. For me, looking backwards is pointless- it's what's happening now and going forward that matters and there's no point wasting energy on a situation that can't be changed, or trying to blame someone. But I couldn't answer all his questions and I guess he feels I'm not involving him so I need to be more aware that this is his journey too and not to try and protect him too much.
I told my boss today - he received a Parkinson's diagnoses last week so I felt easier about telling him, not wanting to rain on his parade but we're both in the position of having life changing/life limiting diseases even though they are very different. The main reason I wanted to tell him is that I am in and out of the office randomly at the moment and I didn't want him thinking I was just doing as I pleased with the kids being off. He was so kind and supportive and just told me to manage the situation as I wanted to and not to worry about being in the office.
So, that's been my day. I was awake most of last night worrying and had the busiest of days running around but I feel ok.