264. When ‘progress’ is not a good thing

Unfortunately, in Cancerworld, ‘progress’ has two meanings: the obvious positive and congratulatory sense and the ‘moving forward’ sense, which again can be positive but, in a tumour’s case, is NOT.

I am in the interesting position of meriting both. My Triple Negative BC is not behaving as my oncologist would expect and he’s intrigued. I got the impression from Dr U yesterday that he hadn’t expected me to last for so long on my first treatment, the dreaded but blessed capecitabine (fresh delivery next Monday) and my cancer’s progress is not as clear to him as he would have expected. So, I’m making good progress.

BUT my markers continue to rise (my tumour marker is more than double now so, suddenly, he’s saying “It’s only a number” to prevent me panicking). My blood marker has continued to rise too, quite a clear upward trend but “still within the normal range”. He might as well be yelling “Don’t panic! Don’t panic!” like Jonesy. It’s just the upward trend that is causing concern. Then there’s the fact that skin mets are popping up here, there and everywhere, while the original ones are improving or sleeping contentedly. Progression? Unfortunately one of the new ones is different. Rather than being subcutaneous, this one is like a tiny open cold sore. It itches, it stings, it forms a blister and scabs but it’s so delicate that just wiping my face with a flannel sets it off again. AND of course it’s slap bang in the middle of my cheek. I’m not letting myself think of how it might ‘progress’. 

Then of course there’s the tumour with its 2mm progression (NOT a good thing).

So off we go again, another ‘urgent’ CT scan to see what’s going on elsewhere. It’s like he can’t believe that it hasn’t spread to other places (back to it not behaving like TNBC usually behaves). I hope he’s wrong and there continues to be no sign of spread elsewhere because, when that happens, it will be over to IV treatment, not something I view with pleasure. 

I joyfully dropped Prof U in it by telling Dr U of the chaos that followed my last appointment, with no bloods instructions on the system (so Wharfedale couldn’t take the samples till a registrar at St James’s put them on). Then there was no prescription and the pharmacist NEVER makes assumptions, so there was no chance of getting my chemo tablets delivered on time (fortunately I had some spare tablets which covered the doses I needed, from the rare occasions when I simply have been unable to swallow the bloody things). Then one of my samples wasn’t processed properly so I had to return to Wharfedale for a second lot of blood to be taken - but they had forgotten to mark it ‘fast-track’ so…even more delays. I can just see my oncologist calling in his mentor to give him a bollocking :) 

We’ve just have our Spikevax at Woodsley Road where they looked after me so well last time. Unfortunately it was Moderna or Moderna. So I am armed with paracetamol (chopped into pieces I can swallow) and praying there is no repeat of the last horrendous reaction to Moderna. My arm is burning a bit but it’s nothing much, touch wood. I GOT A STICKER! SUPERSTAR!! How old am I??  I also got my eyes tested for new reading glasses and the optometrist was the same one as in September 2020, the one who must have spotted something was wrong and advised me to get a referral to Ophthalmology. It may have taken months but, in a way, that man saved my life so it was good to be able to thank him. My left eye may need a few laser zaps (my right was done early 2018, in my ‘other’ life, the one not dominated by effing cancer). So a shoutout to Shazam Mahmoud, one of my lifesavers.

I note the Emmerdale storyline drew to a close with a peaceful suicide to end the misery of MTNBC. I do wish they’d taken the story in a different direction. Maybe I’ll write a different version on here.