Guy

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.

Friday, 26 May 2023.

When one person says of another, ‘they’re in denial’, I’m not entirely sure I know what that means. The perception-reality of the speaker differs from the perception-reality of the person about whom they’re speaking, I suppose. ‘I understand their reality better than they do’, perhaps. But isn’t that a little arrogant?

Although it must be true that the Oncologist’s words ‘I don’t think we can cure you’ — unfortunately I lost my voice recorder of that interview before I transcribed it, but I’m sure she said it twice — must have hit me hard, I don’t feel that they’ve hit me hard and I don’t think I’m in denial. I’m certainly ‘in’ something. Numb, maybe. I haven’t written a word since the 13th, not done any exercise on my trike, drunk too much alcohol. But absence of addressing something isn’t the same as denying that thing is there. Because sometimes we have to adjust to stuff. Sometimes life hits us hard and we adjust immediately, the sudden death of a spouse, unexpected failures, the arrival through the post of the divorce absolute. ‘I don’t think we can cure you’ is a statement, not an event, so has to be processed. Adjusted to a few millimetres at a time, filtering through the layers of consciousness into the substrates of thought and feeling.

And then, in its totality, it can be addressed.

For instance, I started this blog post on the 26^th, it stopped, not knowingly, and am finishing it off a week later retrospectively.

And I am in denial. 

I’m in denial of her death sentence.

Maybe she can’t fix me. But what if I can? Fix myself. Not instead of, but with medical science, as well as. My favourite phrase: And not Or.

With my mind.

Pretty high stakes if I get it wrong. Right?

Saturday , 13 May 2023.

OK. So it’s time to take stock. Yesterday was five months since diagnosis. I’ve had the defining chat with Dr Caitlin Bowden, then a two hour trip in a car chatting with Tracey who gave me a lift, came into Oncology with me and is lending me a room in her house. I’ve been here just over five weeks.

So. What’s occurrin’?

House and location. All good here. I like it here, both in terms of Tracey’s house and south Hampshire. More anon.

There was a property inspection of my place in Cheltenham on 27th April. I got hammered — unfairly and unreasonably in my opinion. My response listed 22 objections and there are more to come. Simon has smashed my back garden, a big weight off my mind. Tracey is smoothly unfazed by the prospect of getting me out of that house or me staying here a while longer.

I feel surprisingly calm about the house, and benefits. For the first time in eight years. With Tracey’s help I have a plan. The plan was made concrete by Oncology. Became real having spoken to both my sons yesterday. Tracey’s not here for the weekend and I feel for the first time in six weeks, deflated. If someone’s around I am on best behaviour, working on stuff mentally and feel better for it. Today, on my own, and I like being on my own in the house, is reality day. This is your future, mate. If you live. Are you ready for it?

A future alive but probably alone?

Yes and no.

Wednesday, 10th May 2023. Reprise.

It’s quite chilling to hear the cancer specialist say ‘I don’t think we’re going to be able to cure you.’ Said mater-of-factly, not as an answer to a direct question, just how it is.

It changes one’s internal, subconscious register from ‘this might kill me’ to ‘this is probably going to kill me.’ This is no longer a childish esoteric curiosity, I wonder if the mind can play any part in curing these kind of things? into some kind of harsh, real life, this is not a rehearsal. Fluff your lines mate and there’s no prompter in the wings waiting to autocorrect. Get the stage direction wrong and it’s: when the curtain comes down do you want to be cremated or buried? If so, where?

For a long time I’ve been a great believer in Elkhart Tolle’s The Power of Now. If I am a great believer in living in the now, however, why do I feel it is  imperative to get a will sorted out? 

And therein lies the problem with most artefacts of the self-help industry. Usually they are quite general. Which of course — here comes the cynic in me — appeals to the widest possible audience which generates the greatest possibilities of sales. Each of us, though, are individuals with specific contexts and issues. Processing the implications of discovering a partner’s infidelity is harder than failing your driving test, but less of an importance in the stakes of life game than facing a killing cancer growth. But if you’re facing the prospect of the loss of faith in a partner’s bond then that is your problem occupying your thoughts and emotions, brutally, my cancer isn’t. Trying to find the fortitude of forgiveness works for those who know or can find out how to do it, it doesn’t work for those who do not. ‘What I would do if I were you’ is rarely any use, unless it comes with the ‘I’ fully understanding the context and life-approach of the ‘you’. “Advice” has to be not an instruction, rather a gift of understanding. So then why am I writing to you about a life-terminating cancer when I don’t even know who ‘you’ are, let alone not being able to immersively empathise when I do know the ‘you’ of my address? And you probably, hopefully, don’t have cancer.

Despite the uniqueness of the aggregation of each of our contexts, thoughts, emotions, spirits and souls, there are areas of commonality. We are all humans, men or women — glossing the issues of blurred gender — black, white or a rainbow of ethnicities, all both different and yet the same. Each of our emotions are similar between us, even if the way they are implemented differ. If my reflexive analysis within the specifics of acute implications can bleed into some understanding for you of your harder-to-grasp situation, be it a partner’s infidelity, failing a driving test or berating yourself for burning the toast (autocorrected briefly to ‘goat’, good luck with that) this morning then that’s a good thing, right? My work here is done.

The Oncologist’s (from the Greek onkos for ‘mass’ or ‘bulk’) words were ‘I think …’ To express an opinion commencing ‘I think’ is not to know fully, it’s not expressing certainty. There’s an element of doubt. Where there’s doubt there’s wriggle room. A space where, perhaps, my mind can get to work. But if there’s the possibility that the quality of my thinking can make a difference, make the difference, then I have to believe implicitly, whole-heartedly, completely, that there’s a future and I’m going to be alive in it. That thinking isn’t in or about the Now, it’s in the Then. A driving test can be taken again, a partner forgiven (eventually) or a new one found. The carbon-footprint on the surface of the toast scrapped off. I have to believe I’m not going to be toast, after all. After All. 

Monday, 08th & Wednesday, 10th May, 2023

Today (10th) I will be wearing the same T-shirt I’ll have been wearing on the same kind of day every time since the 12th, of December, 2022. Cancer days, or perhaps daze.

Why?

As with every answer to every question ever asked, there are (at least) two layers to that answer. The surface, easy, answer is because it is a cancer day and I wear the same T-shirt on a cancer day. Which begs a better answer to the question: why?

Here’s the thing, you see. I don’t believe in luck. ‘You don’t think like other men, do you Guy?’ A colleague once blurted out to the whole office in frustration to an answer I had given him. And he’s right, I don’t. Which has proved to be both a blessing and a curse. A blessing to my private decision making, a curse to my dealings with my fellow human and my social standing. To think differently from the crowd, to travel one’s own path is to not fit in, to become pariah. Only child, I guess.

Yeah, right, ok then, explain the random lottery win!! 

Well, first of all, I’m not sure we have an obligation to explain our private belief systems, but to be fair, I started it a few lines above. I don’t believe winning the lottery is good luck. I think it is just stuff that happens. We then assign that ‘stuff’ a label in retrospect. Let’s say the odds are 70 million to one for winning the lottery (I don’t know what the odds are) and the UK population is 70 million (again, as above) and each person buys a ticket (OK, I know, children can’t gamble, so each parent buys two), then it’s likely someone’s gong to have a winning ticket, all things being equal (interference, noise). Maybe that one person is lucky, but does that mean the other 69, 999, 999 people are unlucky?

I’ve got metastatic prostate cancer. Does that make me unlucky? In its way, counter-intuitively, and I might need to duck with this next statement, cancer is normal, a normal malfunction of the cell reproduction process. How ever many trillions of cells we have in our body, and some are replicated daily, every single cell has been replaced during each seven year period. I’m almost nine of those cycles old. The odds are some of them are going to replicate ‘ab’normally. 

Which alters my thinking. If a good cell can replicate and become a bad cell, then that cell too will replicate and there must be a ‘chance’ it can become a good cell. That would be normal. Can I encourage that process? Or must I wait for ‘luck’ to do it for me and do it with each of the cancerous cells? If a bad cell can influence the cell next so it to turn into a bad cell, then why can’t a good cell next to a bad cell influence it to become a good cell? Eight of my nine year replication cycles have gone well, so that must be the more normal pattern. This is logic, not science, but it might be my only chance and what’s to lose? Right?

The 10th is Oncology Road-Map day. So let’s see what Modern Science has to say.

But today isn’t. The 10th. It’s the eighth. (I’ll get back to the T-shirt in another post). So why am I writing about the 10th on the eighth rather than writing about the seventh or something else that has already happened? Other than one’s the future and one’s the past …

Eight years ago today (on the eighth, 88 curious fact from a previous life :— German radio operators in WWII would often end a message with ‘88’, eight being the eighth letter of the alphabet, ‘H’ …) I moved into the house I’ve lived in since. Life-saving stability. Eight years is the longest period of time I’ve ever lived in the same house. When my two sons were born into the house we were living in in the cutely named Llanfihangel Crucorney, try saying that after a few sherbets, I calculated I’d moved over sixty different times in my life. I was 37 years of age. The longest I’d lived under the same roof was two-and-a-half years. Tomorrow, eight years ago, my friend Kim returned Zen to me, she’d been looking after him for the ten weeks since he got back from Spain while I rented a single room. It was the third time we’d been parted. Other than a weekend he spent in kennels, I hated the idea, we were never parted gain.

My life changed with the move into this — ‘that’, as my current thinking is turning — house. My post-MS diagnosis life. It is changing yet again, now. Post-cancer diagnosis.

Here’s the thing. I’m not writing this in that house. I’m in the kitchen of my friend Tracey’s house. I’ve been here since my first testosterone-blocking injection. 

As a friend, I’m very lucky to have her.