Just as cheery as part one.
So. He’s back in the UK. He’s really not well - barely eating, dozing off constantly, zero energy. It’s all looking very much like it’s only going one way.
Thank fuck for the NHS. What follows is essentially a lot of tests here too. I spoke to one of the doctors here who asked for a summary of his discharge notes from Florida.
152 pages, most of which were blood tests. But I managed to find the biopsy summary, which said ‘poorly differentiated adenocarcinoma with neuroendocrine features’ and his lungs were described as ‘fucked’ (I’m paraphrasing). Heart ‘critical aortic stenosis’ and ‘severe calcification in the aortic valve’. The doctor also asked if the American hospital could send the actual pathology slides from his biopsy over (this never happened, so they had to do another biopsy here. He collapsed on the way out and had to spend a night in hospital).
I know they say never google, but I find facts in a crisis helpful. (As the wonderful Max from the Chronicles of St Mary’s says ‘Always deal with the now’. Useful advice and facts help me know what the now is.) I didn’t know before, but as well as stages of cancer there are also grades, 1-4. They don’t necessarily correlate, but what they were describing was grade 3 (where 4 is baaaaaad) and likely to metastasise, if it hadn’t already.
We are now at three days before Christmas. I’m NOT going to absolutely piss all over everyone else’s Christmas by going ‘you know this could be his last one right? You do realise how bad this looks?’ Both my parents are convinced that with modern medicine these days he’s going to get better. I cannot be the person to take that away, especially when I don’t actually know. So I sit with it by myself. Fortunately my ex-nurse friend (let’s call her Anuschka, for that is her name) is a brilliant person to talk to. And I do talk to my husband. But we’re all so much in the dark.
Because mum thinks everything is fine, she is suggesting we don’t see him until NYD. Wtf? I negotiate her to 27th Dec.
29th December they see a doctor who is ‘confident’ that due to the placement of the tumour they can operate (it’s low down on the right hand side, so essentially they can just lop it off). Then they can look at the heart stuff. Huh? How did the American hospital get it so wrong?? Eh?
I mean, you’ve seen the title of this post. Bit late for a spoiler alert.
Mum has cancelled the carer we had coming in three times a week because his appetite is back and he can move from stairs to sofa (with a walker), can shower solo. They’re doing a PET scan to look for spread.
12th Jan. I couldn’t attend the results appointment with them and you’ll be amazed to hear my mum couldn’t record it on her phone (I don’t have an app that records! YES YOU DO). At this point they don’t think the tumour is urgent, will run some more tests including more cardio assessment to look at that, and the PET scan says no spread. I was convinced they were going to find secondaries.
7 Feb. Biopsy had to be rescheduled due to a small tear in his lung (no idea where that came from) and dad has his third? UTI. As said above, he had to spend one night in hospital after a ‘reaction’ to the biopsy but was discharged the next day.
Meanwhile I had a GP appointment for some stomach issues I’ve been having (poss gastroparesis? ) and why yes, the doctor did say it was probably stress related. ‘Anything stressful in your life right now?’
‘Well my dad has lung cancer.’
‘Right. Yes. And what do you do for a job?’
‘I’m a counsellor.’
‘Ah’
Ah indeed. Weirdly working helps, as I can spend 50 minutes in someone else’s world.
16 Feb. I join my parents for a hospital appointment at the respiratory clinic. They are getting a second opinion on his biopsy as it’s ‘unusual’. Maybe because he’s never smoked a cigarette in his life?? He’s currently not well enough for chemo or for a heart operation, so the plan is a month of radiotherapy on his lung to reduce/slow it down. Oncology will take over from here. They are thinking his breathing issues are more heart-related than lung-related. The doctor mentions ‘options’ and ‘quality of life’ so I’m wondering (to myself, of course) if they are gently trying to prepare us. I notice how forgetful and repetitive dad is during this appointment.
Which reminds me - he had maybe two small strokes when he was in hospital in Florida? Just to add to the fun.
In a ‘this would be thrown out of a script for being far too obvious’ moment, while we were waiting to go in my parents were discussing their older dog (obviously they have a puppy too because that’s what you need right now) who has this growth on his leg. It could be cancer. If it is, then they’re not going to give him chemo because they don’t want to put him through that, and quality of life is more important than quantity. Me (to myself): the subtext is just MASSIVE FUCKING TEXT here…
Cue more tests to get an accurate assessment of the tumour and ‘in the next month’ and ‘we just need to check one more thing’ and nothing is happening until…
/end part two
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