281. Change is a-coming….

I think I’ve got to the stage where I’m beginning to fool myself in the wild hope that things are FINE and it’s all hunky-dory. I wish.

In order:

The blood thinners arrived on the Tuesday. It turned out the pharmacy had tried to ring several times Friday morning and couldn’t get through. A certain person has a fixed routine: 9.15 ring X and talk for an hour; 10.20, ring Y and talk for an hour. So he’d been fretting all weekend about the new medication not being delivered and it was HIS FAULT!!

They are dinky little things, definitely swallowable. Unfortunately, two of the main side effects are inflammation of the stomach (where have I heard that one before??) and, guess what - fatigue.  I can only describe the first week as shit - I could barely get up, let alone do anything. Carol took me out (I felt like an elderly relative being taken out for a treat) on the Friday and I did manage to get around a bit. I did 1600 steps according to my Fitbit, at least a thousand more than usual. But fatigue on top of fatigue is no fun, believe me. It has improved to the point where I feel normal - ie the level of fatigue I had before. I just don't get how they have no solution to this. I know I don’t need a B12 boost but I DO need blood cells. Sadly my results are always marginal so… no help there.

Wednesday I went for the Ophthalmology appointment I’ve been nagging for - and what a waste of time that was. The consultant didn’t seem to know why I was there. He’d obviously looked at my notes but it hadn’t registered that the tumour I have is actually breast cancer, let alone triple negative. He examined my eyelid and just couldn’t answer my main questions: what is this cluster of lumps? what is this large lump on the socket bone? why has my right eyelid started to redden like the left? He said he had no idea. They would have to do biopsies before they could say. He also said there was no lump along the socket bone (it bloody sticks out!!) but I think he was thinking of a lump on the bone rather than a lump in the skin, which he kept moving about, to the point where I feared my eye might pop out of its socket, and ignoring.

Maybe all that tai chi will be handy

Conclusion: I’m to have corrective surgery to raise my eyelid to match the other ie to be open. They will use the same line as before and release some muscle that got trapped during the last surgery (why couldn’t they have done this a few months later when the damage was obvious?). He suggested a biopsy of the cluster of lumps so I said I’d talk to my oncologist before deciding. He then talked about the blood thinners, how I couldn’t come off them so they would have to do ? and ? and I’m sitting there thinking under local anaesthetic? Me, who cant have a simple filling without sedation?? Anyway I signed the forms. I’ll deal with sedation when I have to.

Which brings us to today, the speediest experience I’ve ever had despite being surrounded by observers and students. A student nurse did my basic checks but a supervising staff nurse came along and asked him to interpret the results. That was mildly amusing (“given the patient’s age…”) as he was so young but he did a good job. Conclusions: temperature a bit low (“you don’t have to worry about that”), blood pressure healthy “given the patient’s age and condition”. Heart rate a little high but the patient is still recovering from all those stairs! “Spot on” replied the Staff Nurse, who looked a bit intimidating to me. He looked more like a bouncer!

Then I was immediately scooped up by Dr O again. She had two observers. They looked as though they might be starting their A levels but they were actually registrars. It meant I had to display my eyelid and my neck to three lots of probing eyes.  They’d obviously had a good chat about me beforehand and I got a very strong sense of what was coming - she thinks it may be time to change treatments. Well, I was having none of that lol. I told her that Dr U had said I had phases where it looked like the capecitabine was no longer effective but then my body rallied round and the cape started working again. That’s happened three times. Dr O wasn’t going to trawl through all my notes so she took my word for it and said that she would recommend I have a further cycle of capecitabine and we should wait for the MRI results of my head as my tumour markers show definite activity (I’ve known that for months - I can feel the new skin mets) and she would request 2 biopsies from Ophthalmology, one being of the lump he maintains doesn’t exist! Good luck with that one!

So now I’m no longer planning my hair appointment - I might be on IV Trodelvy and lose all my hair. I suspect I’ve just put off the inevitable but a bit of optimism and hope doesn’t hurt. Cape is still having some effect, I’m not suffering, so maybe a delay won’t be problematic. But I really don't want to move onto another treatment. I want to be able to continue to boast that I’ve been on the same first line treatment for two years. I want…I want…unfortunately what cancer wants is what counts  Am I being a fool? Should I just bite the bullet? I’ll ring Tuesday and see what my markers are. If the tumour marker is higher than 45, time to worry?

Writing this actually helps to clarify things - a bit :)