277. Bemused but in a good way

 Update on cancer: All well. Scan results all more or less negative. Tiny progression of tumour (tell my eye that. It feels like something is pressing on it) and, although I have lots of new skin mets, the back of my neck feeling like I’ve an exaggerated version of nettle rash, there is “nothing life-threatening”. Plus, the referral to Ophthalmology has been accepted this time, presumably because Dr U phrased it differently, so maybe something can be done to lift my eyelid a bit so I don't look like someone’s punched me or I’m winking lasciviously!

Never search images for ‘lascivious’

So why do I feel ambivalent? It’s not because Dr U is leaving (next Friday) though it is hard when someone has been there, tracking my progress, looking for alternative treatments and making the right calls. I was introduced to T, a prescribing nurse who will be taking me on, and I’ve been added to Dr K’s list. He’s the oncologist I consulted privately in 2018 who persuaded me to move into the NHS at St James’s (thank god I did) and he’s the head of the team. Dr U says he doesn’t think there’s a better oncologist anywhere. To be honest, I don’t care about ‘better’, I care about having someone who genuinely cares, checks what’s going on regularly and who will play the waiting game Dr U has played: there have been several times when a different oncologist might have decided it was time for another treatment whereas Dr U advised me to wait and see - and each time, my body rallied round and cape carried on working.

So why do I feel ambivalent? I feel a bit of a fraud. Yes, I’m constantly exhausted and the last 4 days have been spent mostly in the loo, including at the hospital, but I don’t feel pain, it’s hasn’t (yet) spread to any invisible organs, and I don’t keep getting admitted to hospital and wired up to drips. This is what is happening to almost everyone in the support group. I just plod along and feel a fraud. I know my cancer is just as bad and, perhaps, more dangerous but there’s no evidence of it. I look fine, apart from a swollen eyelid and a huge pot belly. I look healthy despite the constant fatigue (apparently cape is attacking my bone marrow - great!) and I certainly don’t look like a cancer patient, whatever that means. It’s a case of Imposter Syndrome, I feel. Yet I asked some pretty difficult questions like what’s going to happen, what changes can I expect to see - and it just doesn’t register with me at any emotional level. I just accept it and move on.

It won’t last of course. But I’m unique in the hospital and, great though that sounds, it reminds me that actually nobody really knows wtf is happening here. And I’ve no one or no case study to compare myself to. Really, I should be grateful, shouldn’t I? And I am, I definitely am.

I’ve been rereading my blog from the start. I’ve got to the end of treatment and the start of the pandemic. It’s been bittersweet. I can smile at the optimism of “It’s only a disease” yet I’m taken aback by casual references to a sign or symptom where I should have thought it’s coming back and done something about it. It wouldn’t have made any difference but there actually were signs before I’d even finished treatment. Yet here I am with “nothing life-threatening” yet a diagnosis of Stage 4 Triple Negative breast cancer, for which the prognosis is crap. And it’s 2 years on, still on first line treatment, I can see future research into TN having to add a rider that there’s always one awkward bugger who defies the odds!

Now, one thing I’ve noticed is that this blog is DULL so I am going to have to find ways of enlivening it a bit. This is what happens when your life revolves around bloody cancer - there’s no room for anything else! So, to make you smile, this is the reverse of my first attempt to crochet to a pattern. Imagine, every one on those threads has to be woven in - and I’ve done over 150 already!! Lesson - learn how to weave in during crochet process, as with knitting. Have a good laugh at my expense :

276. Counting the days

 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!!!

The weird thing was, I sat talking to him, very relaxed, and it dawned on me that I’ve forgotten what he looks like. I see the eyes and the dusting at the sides of a light beard, I see his face shape and dark hair, his clothes, the way he bustles in his brown shoes, taking surprisingly small steps for his height but covering the ground at great speed, but I have no idea what his face is like any more. Now, I’m a face person. I’ve always read faces quite well. You can’t read an NHS mask!

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.

Now I am facing the task of organising paperwork. Yesterday I tidied the bedside drawer, threw away packs of paracetamol (use by 11/21) and tidied the bedside cabinet top. Look, that may sound pathetic to you lot, but to me, it was a big achievement. I even found my Happy Jar, with notes written in 2020. Ah, those were the days. No cancer, no chemo, some energy…cancer in the past and definitely not in the future. Is it best not knowing what’s coming next in life? You can’t plan for everything.

I think I’m going to start my Happy Jar afresh.