Oncology appointment tomorrow morning; not just the three weekly one, but the three-monthly scan results are due in. I have a few questions/suggestions as well...
The first is to find out whether it's the chemotherapy, the hormonal tablet (Tamoxifen) or the steroids I currently take that are resulting in a downy fur which has started growing on my face - I have very soft, fortunately relatively pale sideburns. I think it's the steroids which will mean I can deal with it short term with waxing - but if it's likely to be the Tamoxifen which I expect to be on for the rest of my life I'll be opting for laser treatment! Bad enough being bald and very round-faced at the moment!
Second up is radiotherapy - I think it's time to go back into the big machine for my elbow - the same side as the surgery I had on my shoulder. Pain (diagnosed as 'tennis elbow') was the first sign there was something wrong with the bone, so the return of that is no surprise, Also possibly one or more of my ribs (pain in my back, along the bra line) depending on how much that spot overlaps with the radiotherapy I had on the centre of my back last year for vertabrae mets. Hopefully not at all; as my back in particular has been playing me up for over a month.
Thought this would be a good time to talk about scanxiety and unmuddle my thoughts on it a little - the way I feel differently about it to others. With this, and having had a long day out with the girls and over-doing it, I'm definitely 64 today.
Scanxiety - one side effect of this whole bastarding experience I just don't seem to experience in the same way as people I've met and those online. I'll admit to having had it in the early days, but my experience has changed and in the past year I simply never get worked up. Head and torso CT scans done last week, plus the previous Monday was a head MRI - checking how the radiotherapy dealt with my brain mets in February. These are big questions to be answered and I feel - okay - about the whole thing. It's hard to explain but I guess with three-weekly blood tests of tumour markers which have halved since I went on Kadcyla, I have a short of early warning system in place if the results were likely to be bad. Tumour markers basically work as an early indicator that if it's less in my bloods, the tumours should be shrinking too. The results for the brain and the WBRT are different, admittedly, but I still feel chilled about it all.
For me it's just information - it's not like suddenly I've got more or less cancer. Other people fixate on the date of results, but nothing has changed for me when I walk in there - I feel more comfortable having my update and either carry on what we're doing or time to make a new plan... but that's all. I seem to be quite alone in this mindset, although oddly enough I think it's completely logical.
My friend J had a very-suddenly-diagnosed brain tumour and surgically removed about a month before my diagnosis in December 2013 - our stories have been incredibly different and yet with odd things in common as well - her blog is here if you'd like to see more - Brainweasel.
J suffers incredibly from scanxiety - her tumour was in a grey-area of 'cancerous/benign' so the possibility of it coming back, and being dangerous, is very much up in the air at each of her six-monthly scans. I feel in an oddly 'safer' place - despite my whole body being sick and the cancer being not just definite, but incurable. That's because I know it's here; I never had a primary diagnosis that I 'survived'; I never had to wonder.
I'm at relative peace with the rest of my life being about treatments to keep me alive, and the questions are about what's next? not, will I survive. Because I won't, and that's okay. I'll live scan-to-scan, treatment-to-treatment. As I said, I'm expecting good news tomorrow - the tumour markers are showing positive results for now and I feel pretty well in myself, except the gradually reducing stamina I have for being out and about. If the news isn't good - it's the next drug. As long as they can get my pain (elbow, rib) under control - I'll have no complaints.
Oh, and let's get my beard sorted.
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