The Tropic of Cancer

Friday, 11^th, August, 2023

Having been a lifelong supporter of Groucho Marx’s not wanting to belong to any club that would have me as a member, I’ve joined a club. A yacht club, of all things. It’s quite posh. And, no, I’m not a sailor. Or posh. Despite Boarding School. I’ll explain later.

As a thank you, and a first reccee to assess the terrains for my gamboling disability gait, I’ve taken my landlady for lunch. It’s a lateish lunch, a Friday, and the restaurant is empty. Everybody will be getting ready to go out on their boats, Tracey explains. After the starter, but before the main course has arrived, we’ve both ordered fish, we’re sitting with a view of the River Hamble, my phone goes. I’m expecting a call from a hospital in Lymmington, so, and although I wouldn’t normally take an unregistered number, in these circumstances, I take it. Is that Mr Mortenson?, call me Guy, all that sort of nonsense.

I’m coming for a CT scan on Monday, apparently. Am I? Didn’t you know?

We eventually work out it’s Wednesday, which as an appointment I did know about, and it does involve a scan, which I didn’t know about. And I have to be fully liquidated.

I’m staring at two-thirds of a pint of San Miguel. Not that kind of liquid.

Two litres of water every day.

And nothing else.

Starting now.

Did I mention the two thirds of a pint of larger? And a bottle of Borolo in the car.

I’ll start on Monday.

Starting now.

I don’t tell Emily, the very pleasant but rather assertive nurse on the other end of the phone, but I’ll start tomorrow.

The jury is out on the effects of coffee as a diuretic, note I said there coffee as a diuretic, not caffeine as a diuretic. Emily insists I drink a cup of water for every cup of coffee I drink. Usually, I will have two or three coffees in the morning while I read, none during the rest of the day (I’m not vegan on this, if I’m meeting a friend in a coffee shop that afternoon, I’ll have a coffee). I have my own feelings on this coffee conflicting information, and have read a lot on the chemistry over the years — there’s a lot of chemistry in the study of caffeine and blood make up — but, here’s the thing, I have developed some house rules over the treatment of cancer and although I shall adopt some of my own wacky esoteric beliefs, I shall obey what I‘m told to do by Oncology and Oncology related staff. So, for the next six weeks (two weeks until radiotherapy starts and a four week course), no coffee, no alcohol. Note, again, I said no coffee. There is cafffeine in chocolate. Why do you think it’s such a huge industry?

There are two things I know (I think I know) about caffeine. Its molecules sit on receptors normally taken up by ATP (deep chemistry), when you stop taking coffee, ATP molecules reinhabit their now cookoo-less habitats. ATP molecules are slightly bigger than caffeine molecules so as they force their way through now smaller diameter blood vessels in the brain, you get headaches. 

The second is that substances like caffeine encourage the brain to produce dopamine (which is why they’re addictive) so the brain ‘forgets’ how to produce it itself. When the caffeine (alcohol, weed, etc etc) stops, the brain has forgotten how to produce dopamine itself (this is not a medical explanation) which makes you a miserable, difficult bastard. Hopefully only for the duration.

Combine those two effects, headaches, mood swings, low energy: lucky landlady.

Wednesday, 07th August 2023

It’s a feeling I’ve been expecting, anticipating. I’ve waited long enough. Since March 15th. First, I needed a PET scan, wait six weeks. Can’t have one, there’s no funding. As it happens, I’m moving to Hampshire. Gloucestershire graciously and efficiently hand me over to Hampshire. By the very nature of bureaucracy, and if that word has now become synonymous with inefficiency, with the very nature of administration, there is a delay. Oncology in July, 12th, Southampton. Sure enough, I’ll be in a zapper, but there is a six week delay. Waiting list, rather. I’ll be called two weeks before to go and see the kit, get a feel for the fitting etc. 

It’s now August 9th. Two weeks before six weeks. I find a number for Radiotherapy. They put me through to bookings. An answer machine. I wait an hour and ring again. They put me through to bookings. This time a human being. I have an appointment for the 16th. Wednesday.

A week today.

It’s a feeling I’m familiar with. Anticipating.

The numbness.

Seconds later, a feeling I’m not.

An avalanche of a feeling. Frightened. Terror. 

Quickly it goes; it’s not suppressed, it dilutes. This is what I’ve been waiting for. A date. A start. Now we’re in play. Vague thoughts can now crystallise into plans.

Wednesday, 19th July 2023.

Nothing to do with cancer this time. Add it to the list. Yesterday I saw the nurse again, Emma, not the specialist nurse I’ve seen twice, Jane’s on holiday. About my swelling. No, keep it clean.

Jane, whose specialisation is ‘tissue viability’ as a phrase a new one on me, but I like it, handed over the process to Emma who did my cancer jecky (Injections before I switched to pills). It turns out Emma knows what she’s doing anyway. The swelling is noticeably diminished, the bandaging hasn’t been too uncomfortable, although it is intrusive if sleeping on my side with my legs together, and fortunately the weather’s a lot cooler. With Tracey’s help I’ve been able to get my foot into a proper shoe and that makes a hell of a difference to the self-worth. I covered most of the stuff about the compression bandages earlier, other than this has been two weeks now and my third iteration of wrappings. The leg is looking closer to normal than it has for half a decade.

At the end of the process I asked Emma how I’d find out about the results of the X-rays to my knees. The results are in, she said. She didn’t really, I can’t remember what she said, but it amounted to the results are in.

MS can, obviously, be severely debilitating, to be amongst a bunch of MSers at a meeting is to see a whole bunch of people ‘walking’ similarly, and it isn’t a new version of disco dancing. The thing that is heavily debilitating for me, no the thing that puts me in constant high-level pain, is my right knee.

I’ve had two key-hole surgery ops on my right knee, one in the nineties and one in ‘09. The second one left me with the observation that the cartilage of my tibia was in real trouble. This time they carried out a new procedure where by they drill holes into the surface of the bone, let the blood and stuff congeal and that forms a protection barrier. 

For a while.

Additionally, the MS physio in Gloucester was confident a lot of the problems for my right knee, much worse than the left, were MS related.

Emma read the notes. Some of the stuff, she said, was above her pay grade but the X-rays showed there was no protective cartilage at all on either surface of the bones, so my knee was effectively bone rubbing on bone (which I could have told them from the pain) and there were signs of osteoarthritis which X-rays had indicated back in 06 when I had first been investigated for symptoms that would eventually be diagnosed as MS but were missed at the time.

‘What can we do about it?’

We booked an appointment with a resident knee doctor for 3rd August.

I should be most concerned about the cancer, but right now I just want the pain of my right knee, a constant companion for ten years, to go away.

Wednesday, 12 July, 2023

Well. In one way I’m connected again, in one way I’m connectionless. The connected is more important, the connectionless fixable.

The mystery as to why my first initiation consultancy in Hampshire is with Urology. Oncology (at least for prostate cancer) work out of the Urology suite. We’re on level G, C was the ground floor, and I wan’t paying attention in the lift but if there’s one floor per letter we’re four floors up. The view from the Oncologist’s window is lovely (I suspect Southampton General is on a high bit of ground too), north over plenty of trees and not too many high-risers. Maybe a brief glimpse of 10,000 years ago, before we started farming. We have some chit chat.

If I was seeking a second opinion in that “I want a second opinion” sense, I wasn’t, my Oncologist is very complimetary about Cheltenham and Gloucester Oncology, I needn’t have bothered. ‘I think Dr Bowden was right,’ she says, ‘because of your very high PSA I don’t think we can cure you.’

How does that make me feel?

Nothing at the moment. And this nothing isn’t the nothingness of numb, like my PPMS diagnosis, this is an absence off emotion, not a suppression. I’ll think about it tonight. Since I’m writing this tomorrow, as it were (I tend to write these posts with an early-morning coffee, after my daily dose of day-intro fiction, in the dawn hours of the next day, my favourite time to write) I thought about it last night.

It’s complicated.

And different from when I first heard the same words. Although I took my voice recorder, I forgot to activate it so can’t listen to the convo again.

There is a brief flare of ‘oh my God, this thing is going to kill me’, then the Watcher, having been on low-level surveillance, hands over to the Catcher and the thought is dismissed, quashed. Again, not suppressed, dismissed. How to explain the difference? How to explain nuances of feeling? This thought has been flushed away. Is it still within me, deep somewhere, planted, nurtured and now part of the garden furniture? : no it isn’t. Practically, as I say often and to everybody, I’m 61 years old, I’m still breathing, plenty of others didn’t get to my age: no complaints. There are other practical thoughts, my two sons at their father’s funeral, the odd woman I haven’t pissed off crying, the kind platitudes on Facebook. The Catcher kicks in again. Bollox to that. I’ve still got things to do. Novels to write, people to affect through literature and writing (I wasn’t watching what my snazzy fingers were writing there, but autocorrect came up with ‘rioting’), a woman to catch and tame.

More than that, I’m teaching myself to talk to my body. Which seems a bit of a surreal concept. New-Age Witchery. Many moons ago I read a book, it is just coming to me. If this was real time you’d have to wait as I search my memory. Tall blond Californian with a Californian name. I’ll just go pop the kettle on, resist a Google search for mow, and be back with you.

Fresh coffee made, I search Google. ‘californian wman [sic] cured herself of cacner [also ‘sic’, welcome to typing after two decades of MS]’ gets me a load of press bollox. I’ll think about it no get back to you, talking to my body for another time. I think I need to read this woman’s book again. Oh look at that, the disfunction of an old person’s memory revealed in real time.

[Brandon Bayes.]

23-26 June 23, Friday to Monday

This morning (the 27^th) I wake up having had two items ticked off my bucket list over the weekend when I didn’t even realise I had a bucket list. My land-lady and best friend, Tracey, gave me a lift to Cornwall. No small matter. I had a last-hurrah! weekend planned for my pre-treatment summer, she decided she wanted to come too.

It was the thirtieth anniversary of the Tate Modern opening its cultural doors in St Ives. I’d never been to St Ives. I’d never been to a Tate (there are four of them). I’ve bought a few pantings from the Tate to mark different milestones in my Academic journey, so bought membership, thus the exhibition was free. 

It feels like something inside me has changed. Something fundamental, important and deep. I booked accommodation. I’d take the train, my first journey on public transport on my own since 2014. My first ‘holiday’ since March 2015. In retrospect, I would have had no chance. The idea was ludicrous.

Trace, infinitely more sensible than me, suggests we stay in Padstow which makes the journey back an hour less. She has in mind somewhere she’d like to eat — no, she has in mind somewhere she thinks I’d like to eat — in Padstow. In a previous life I’d been to Rick Stein’s cookery school four, maybe five times. I’d stayed in his hotel and eaten in his restaurant, his chip shop, his cafe and of course the cookery school. I didn’t want to eat in Rick Stein’s.

‘It’s not Rick Stein’s.’

I cried.

I’ve never cried because I was eating food before. Maybe the atmosphere had something to do with it. Maybe because I was eating with Trace and it felt a bit like a relationship we don’t have but I wish we did and I miss. Maybe the overcoming difficulties both physical and mental to get here — and the heat. Maybe all those things contributed.

But it was the food. 

This wasn’t just food I was putting in my mouth, this was an experience. You know how they say there are things you don’t know you are missing until you’ve tried it and the enormity of what you’ve been missing then hits you? Do they say that? Let’s pretend so.

I remember the line fromTop Gun, skirting copyright about Maverick’s ego making promises that his body couldn’t live up to (writing cheques). Well, I could get a taste, excuse the pun, for eating in Michelin Stared restaurants that my income — State benefits — can’t cash. Which, I think, is part of the make up of why I was crying. In circumstances like this — I’m no expert in the physiology of crying, other then to clean the eyeballs — crying comes about from a trigger, but the ammunition is a deep-down conglomerate of emotions. The hardest one to explain in these circumstances, the circumstances of restaurant experience and the writing about it, the hardest one to explain accurately and without misinterpretations, is related to cancer.

I’ve said a number of times out loud when talking about cancer, my reaction to cancer, to other people is that it is important to have long-term goals set because long-term goals implicitly imply I’ll be alive to see them to resolution. But, I suspect, these goals have to be set in some sort of belief system, not an intellectual exercise imposing thoughts onto a process. Thoughts don’t get enough into the me of me, into the process that is part the entropy of life, part of the resisting that inevitable entropy for as long as possible. The ‘thoughts’, beliefs, have to be as deep within me, way way below the surface level of thoughts, as deep as the existence of the cancer itself.

And here’s the thing. The deeper, sub-surface thing. This is the point of Ainsworth’s restaurant’s food. And not to just the food. Sitting here with this woman, this friend. On this weekend. Surrounded by restaurant staff, Alice, Jasper, Leon, Chelsea, Liam, Josh, who care. Who transgress the professional into the personal while knowing boundaries, who have knowledge, technique and experience and who tool these qualities as if they are natural. All this stuff, this stuff of life, is worth living for.

I like numbers. Ainsworth’s Number Six is now high, high up there.

Wednesday, 07^th June, 2023

Today is a bit confusing. I had a double booking, an afternoon with the Hampshire MS Support group — who are lovely — and an 1130 telephone appointment with Oncology. Probably my last with Gloucestershire. This one is feedback from my MRI scan. The MRI seemed almost to have been fitted in because the PET scan didn’t happen.

So.

The scan shows a Prostate tumour, which we know, BUT no sign of spreading to the lymph node. The left iliac proboscis neve, or whatever it was, didn’t get a mention. From my layman’s knowledge, the lymph nodes are the likely vehicle for the big C zooming around my body, as opposed to the slow ponderous neighbouring ‘infiltration’ of localised spread. Which, it seems to me, is jolly good news. 

‘What about the bladder?’ I ask.

‘Why do you say that?’

I mention the previous report that mentioned localised infiltration of the bladder (see where I got the vocabulary from?).

There is no mention of the bladder on the report. Which is curious because if there was local spread it would normally be mentioned on the document.

‘I’ll check with imaging, but I would have thought they’d have mentioned it if it was there.’

Well. That might be even better than jolly good news. Don’t get giddy, don’t get complacent. But a little good news amongst a catalogue of eyebrow-raising is worth something, no?

How to deal with it? Process it. What’s going on?

I ask about the surprisingly low PSA of 16.5 from the blood test in May. She won’t be drawn. I ask about the value in going private for a PET scan. I’d have to listen to the recording again for the full detail, but nutshelling, don’t bother, whatever it tells us we go down the same path anyway. I could have had one if I still lived in Wales, apparently. If you’re English and live in Wales, good news. Welsh and live in England, boo-hoo. Well, Gloucestershire, at least. We discuss the move to Southampton. They should invite me in, soon, she’ll chase them up.

Tracey has sat with me and listened to the call. I’m confused because I thought it was the bladder causing my weeing problems. She’s spoken to a couple of folk who have had similar problems and theirs was from the Prostate tumour. So, the pain from weeing is good news. Who knew?

‘So that seems all good news, then?’

‘Seems to be.’

‘Blimey.’

It’s back to the MS crowd. But that’s for another blog.