I was all fired up on Friday to say farewell to Dr U but it turns out I get one more appointment. Den and I arrived early and, miraculously Dr U collected me early (I think the fact that they have to walk out of the office to get each patient is probably to ensure they do their 10,000 steps and don’t get varicose veins. Otherwise, it’s grossly inefficient!). I said I’d come armed with questions for our last session and he said he had plenty of time. He gave me 45 minutes - and I was the one trying to leave!!!
He recapitulated on the two MRIs, giving me more details and explanations. We looked a my bloods and, although my blood markers are stable around 30 (they used to be stable around 18), my tumour marker is concerning for me as it’s on an upward trajectory. I suggested that was odd since the MRI showed my tumour is progressing more slowly than in previous scans - and he stated the obvious, something that just hadn’t occurred to me. Duh! Each of my skin mets is a tumour in itself. The two in my hairline that keep hardening and softening a bit but are definitely bigger are where the tumour action is. Dammit.
We discussed future options (he still wants me to continue the capecitabine for as long as possible). The “exciting new drug” turns out to be nothing specific. Trodelvy is still an option but he’s not keen on it for me because it’s very harsh. Enhertu is not yet available but trials are ongoing and he anticipates that may be an option. But he mentioned readdressing immunotherapy as conditions have changed. It’s no longer only available as first treatment and it can now be combined with a wider range of chemotherapies. Basically, TN cells don’t send up the red flag normal unhealthy cells are programmed to do to alert the immune system to go on the attack. TN has self-preservation built into it. What immunotherapy does is overcome that obstacle and get the immune system fighting anyway. Once the TN cells are exposed, in comes the chemo to kick their proverbial asses. The problem is that the immune system initially has no target so it attacks other things that may have been perfectly healthy - so you can end up feeling shit regardless.
It turns out I won’t have my ‘own’ oncologist. From April, the department will offer a different service - two specialist nurses (I thought the way he kept singing their praises was overkill; maybe to reassure me, maybe he has a crush) and any of the remaining oncologists. But I won’t see an oncologist every cycle; I’m more likely to see one of the nurses or the pharmacist. Although it doesn’t give me the one-to-one attention that I realise has boosted my morale and my confidence a lot, in a way it sounds positive - that my cancer isn’t considered to be immediately life-threatening. That’s good, isn’t it?
I said about almost having imposter syndrome since, apart from the fatigue and the usual Cape tummy, I seem to have it relatively easy. Of course he didn’t agree but he did pick up on my confusion about how some people seem to find their cancer has changed, maybe from hormone-receptive to negative, and how can we be sure things haven’t changed since the original diagnosis, particularly since it’s not conforming to type? He didn’t take offence at what was obviously a challenge. He talked about possibilities like finding something like the BRACA gene and perhaps it was time for genome sequencing (lost me there lol) but my biopsy sample was pretty useless now as it’s been bathing in formalin (my stomach immediately lurched as I was taken back to the Biology lab, aged 14 and working on the same revolting rat stinking of formalin every bloody week!). So I’ll probably need a fresh biopsy, not of my eye but of the largest skin met (that’s when it registered my neck and face are riddled with tiny barely visible cancer tumours. Ugh double ugh!
Then a brainwave struck him when he asked if I’d had my bloods done. He checked and, yes, I qualified for the fast-track service. Just ignore the usual Phlebotomy queue and head for Bay 3, turn right and pick up a yellow number card. I’d be out in minutes. 40 minutes later, I was set to go to Support Group, which starts 11-11.15. It was 11.20. 40 minutes, fast track!!! Fortunately it was the diminutive girl with a multitude of amazing little plaits. She gets straight in, none of this faffing looking for blood, and is done in a minute. She didn’t let me down. Question: do I worry for three weeks what the tumour marker is doing or do I park it? Obvious answer. I’m usually good at parking.
Oh and I’m instructed to look a what’s happened to that urethral caruncle ffs. It’s easy for a man to say. It’s gymnastics for a woman!!
Support Group was completely unfocused - we all seemed to be telling our stories, sharing our experiences. There were a couple of older women there (yippee) but the group definitely is for younger women and, for some odd reason, I find their experiences heart-wrenching. It’s not that I think I’ve lived my life, I’m not losing that many years; it’s more the fact they all but one have young families, children who may not have a mother to watch them graduate or help them through their first pregnancy, may not even have a mum to nag them to do their homework, criticise their makeup and say “that dress is way too grown up for you!” Then the one who can’t reconcile herself to the loss of any hope of having a family. It’s so bloody unfair.
We also talked about Fran and Laura, the woman I didn’t get to meet, both of whom have died in the last few weeks. We asked about loss, about how their suffering made things all too real to us. But, you know, the whole meeting was uplifting. Then I came out, spotted Dennis sitting on his own by the exit, face devoid of any expression as he’s drifted into his own world…I say face devoid of any expression but really it was complete and utter misery. Spell broken, back to convincing D that today had been good. He’ll never get it.
I think I’m going to start my Happy Jar afresh.
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