259. All of a muddle

 This morning I opened the post and squealed with delight. 

What has my life come to when I am overjoyed at receiving my Blue Badge? I applied a couple of years ago because mental health had at long last been added as criteria but my medical reference apparently wasn’t good enough. I was so upset and eventually quite angry that I could be so easily batted aside by someone sitting at a Council desk. But now I not only have a large laminated badge twice the size of my driving licence, I also have a time dial, blue of course, and apparently I need to put in the time I arrive and I’ve got 3 hours!! Now I need to find where the parking spaces are.

It’s been a weird few days since I saw Dr U on Friday. The MRI showed a small progression in my tumour. Progression just means growth. So, not good news. Added to that, my skin mets have hardened again and seem to be spreading a bit. It’s not very scientific is it. It’s not like he even keeps a photographic record, which I think is a shortcoming. So we discussed the possibility that capecitabine is no longer working and what future options were. It turned out he couldn’t make that case for me to have Trodelvy, specifically designed for triple negative breast cancer, so my options are Epirubicin (which I had combined with something else and it near wiped me out, ending up in hospital with sepsis), Paclitaxel (which I had after EC for 9 weeks, including the car crash) and Carboplatin, about which I know little. I asked why he would recommend drugs that obviously didn’t work the first time and he said I might metabolise them differently two and a half years on.

So I left, I told D so he plummeted to his usual depths, and then spent time ruminating on how capecitabine could work for so little time and then, just as I get used to it, I have to come off it. I can’t believe it’s worked for less than a year but apparently that’s quite good going. Then I started thinking about what kind of life is it where every day is tied up with some form of chemotherapy, with all the crap that comes with it. I have fatigue this time. Will it get worse? Better? So, not my usual pragmatic self.

Then I decided on Tuesday to ring and ask for my blood results. If the markers had risen, I’d know to expect a change of treatment. Apparently I cant have a break because TN is particularly active and might spread to an organ or two without some kind of treatment controlling it. A breast care nurse rang me back within hours (how are they always so cheerful and charming?) and my tumour marker has dropped to 6 again, having reached the dizzy heights of 7 after cycle 12. My blood markers are 17, the lowest they’ve ever been. I was told the markers are indicators of cancer activity and these indicate none, with the tumour and mets in check.

So, what do we make of that? Physical and visible evidence saying one thing, my blood saying another. I’ll have to wait to see what Dr U thinks but it’s stopped the ruminating at least and I feel more positive that I can stay on cape for longer - and defer the inevitable bald head till it’s warmer weather at least!

Tomorrow I’m off to the support group and I am going to park in one of the disabled spots, so there! I shall still be knackered by the time I’ve walked to Maggie’s but it’s a bit of help :)