262. Shoes v cancer?

 Yesterday, I had a short-notice clinic appointment because they are short-staffed and overloaded. I had the pleasure of an appointment with one of the ‘senior team’, Professor U. I’d heard his name in the support group so I WhatsApp’d them and got “he’s lovely” (I’d been told he was a she), “he’s a bit scatty” and “he’s shit-hot on the latest research”. So that’s how the appointment started, with my telling him that. It certainly broke the ice because it took him straight into the research. Most of his work is research and it turns out he pioneered the trials of capecitabine in the late ‘90s and was delighted I was still on the drug and it was still working.

We (he?) talked for 45 minutes. he didn’t appear at all rushed so no wonder patients get antsy having to wait. He was particularly taken by my shoes, last year’s TOMS and I got ticked off by another oncologist for not wearing socks to avoid friction - she obviously wasn’t a shoe-fan. He also was intrigued by my comments on the Emmerdale storyline (subject for another post maybe), which none of his patients has mentioned to him and he’s going to take it up at the Trustees meeting of a charity recently set up - the UK Charity for Triple Negative Breast Cancer (UKCFTNBC - honest! You’d think all those brilliant minds could come up with something a tad more catchy). I checked that out and it has nothing there except requests for funding for research - too late for me.

So, much as I missed my lovely Dr U, now the ONLY full-time oncologist for breast cancer and therefore overworked, I actually enjoyed an appointment! Yes, he was scatty, yes he was lovely and yes he knew his stuff. My tumour marker has continued to rise, as have my blood markers, but they are still within the ‘normal’ range so nothing to worry about, just to keep an eye on. It means my cancer is there and active but the capecitabine is still containing it. But I’ve now seen a picture of someone’s fully developed skin met and it is f***ing awful. It should make me terrified of what’s to come but still it all seems not quite me. I don’t know if that makes sense but my mind just won’t take in what horrible things lie head. I’m relatively content with how things are, pottering along and doing ok. So, again thank god, it’s carry on with capecitabine, deal with the fatigue and the cape-tummy and continue to look like a healthy middle-aged woman. Yes, straight from the horse’s mouth. Looking well? Brilliant! Middle aged? I’ll swallow that!

It’s certainly been an odd time. I was shocked at how distressed I was at the Queen’s death. It really took me back to when Mum died in 2017 and I felt very tearful, let alone shocked. Now, who can feel ‘shocked’ when a 96 year old dies?? I didn’t plan following the developments but I found myself glued, with that sense of ‘awe and wonder’ primary teachers are expected to inspire in their pupils. As for the funeral, again glued to it and awestruck at the pageantry we have the privilege to exploit. I can’t think of another country whose military history can go so far back uninterrupted by revolution, war, whatever. What a ‘show’ they put on. Exemplary, eerie when the march began and, it seems, headed by my former colleague’s son, an officer in the Horseguards. If I’d only known at the time lol. Whether it was worth the cost or not, who knows? I think the new king acquitted himself very well. I just hope we cut him some slack but… with such a drip as our Prime Minister, I can’t see Charles remaining as neutral as his mama. I’ve always felt sorry for him, serving the longest apprenticeship ever, and hope he has a good ten years or more in him despite being a spoilt brat at times.

261. No Satisfaction in Being Unique

 OK, so here’s the picture:

CT scan clear - no evidence of spread to other organs

Blood markers 18 - 28 - 26. Hopefully the next measure will show a similar figure or a drop. A plateau will be good; a drop will be great; a rise will be concerning, even though the numbers are only a rough guide and are still within the normal range. Maybe I had some inflammation somewhere.

Tumour marker 7 - 9 - 11. Slow increase in line with the MRI result.

MRI shows “a small progression” of 2mm. It does sound small but I saw the tumour on screen and it’s only about 2cm (let’s face it, there’s not much space for more). So that makes it a 10% increase. I came away quite reassured but now it’s set me thinking. 2mm in 4 months, 2mm in the previous 6 months. It definitely is a progression and matches the tumour marker, 

So I’m to carry on with cape. More fatigue, more crackly throat, more constirrhoea (that’s the inflammation). Maybe one day I’ll treat you to a treatise on the occurrence and management of diarrhoea in the capecitabine cycle. What a treat!

I guess I have to pluck up the courage to ask more about this effing tumour but really they don’t know because they’ve not seen if before. There is no satisfaction in being unique! I did ask what was likely to happen with the tumour and got a strange response. I asked would it spread across my eyelid and affect my sight - no. Was it likely to grow across the inside of my nose - no. Would it grow outwards, like Elephant Man (I shouldn’t have joked, I know) - no. Was it likely to grow towards the brain - hmmm. A strangely non-committal no. 

What puzzles me is how I stay so calm about it. It’s really like it’s happening to someone else. Dissociation maybe but it works. So far. The fact is, it’s pretty miraculous that capecitabine has worked for so long. It can work for years with other types of metastatic breast cancer, but not for triple negative. So, again, I’m not fitting their usual model.

How I wish I had some idea of what lies ahead!! And if it’s that important, why haven’t I updated my will etc? The book I bought - What To Do When I Die - is practical and helpful but it’s American and although I can replace Attorney with Solicitor, it’s a pain having to anglicise the contents. And I have no desire to dictate my funeral wishes!!! I’ll let Dennis decide and if he wants to play Let Their Be Drums or something by Neil Young, fair dos. Could be fun. So long as he doesn’t play Richard Thompson or Alex Chiltern. I could never warm to them.

I did buy a nice book to leave behind though - The Book of Me. It makes you reflect on a lot of stuff so I’m working my way through the bits I like! 

Maybe a bit of a morbid read? Oh, the best bit. I nearly forgot. I took D to the doctors to get his hearing checked (ok, to talk about the stresses of caring for me - but D didn’t know that). When he came out he said Dr T had been a bit of a Job’s Comforter. Apparently he told my poor husband “It’s only going to get worse.” Hmm, that wasn’t quite the plan. BUT D has definitely been less morose and he is planning on making some music compilations so that’s progress. Meantime, I’ve been out for lunch and enjoyed brunch on Saturday, sitting outside because Anne had a dog with her. I seemed to me that the only breed of dog around was cockapoos! Bear is lovely, which is a real accolade from me as I’m not a dog person. I’m still craving a lap cat!!