Archives for May 2023

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.

Sunday, 07th May 2023

Glancing at the clock on the cooker I can see that it’s 0404 in the morning. I’m sitting in the kitchen (I guess you know where a cooker usually lives?). Which is not unusual because I often write in this room. And often early in the morning. When I was last in this room, even earlier, it was 0300 ish and even then I’d been awake half an hour. ‘Even’. When something’s level; when two halves of an equation balance, when a number’s divisible by two.

Sometimes we’re awake at these ‘ungodly’ hours because we can’t sleep. Obviously! Here I mean in the insomnia sense. Ususally that’s because we’ve got stuff on our minds, our brains are operating at too high a frequency, a thinking frequency, not the frequency of sleep.

Occasionally it’s for other reasons. I was introduced by a friend once a few years back to the notion of ‘psychic weather’. I like the idea of psychic weather. It’s like there’s a storm somewhere in the vicinity, but not at the cyclone and depression pressures of everyday weather measured on a barometer. Interesting weather words, ‘depression’, ‘pressure’. Dead, or rarified, metaphors. At frequencies (a different polarity of pressure) operating in a different dimension.

Even in 2023, science is at odds with psychic-stuff, and science is the dominant paradigm of popular truths. My own AOI, Area of Interest, actually, one of many, is Quatum Mechanics. My ‘A’ levels at school, way back in the (pre-historic) day, were Pure Mathemattics, Applied Mathematics, Physics and, er, English. A fascination with the physics of both very big things, weather, the universe, and very small things, forces, particles, has endured. In a later life, I had another friend who was very spiritual. In the holistic sense, not of the religious kind. I was very struck how the language of temporal spirituality and quantum physics is very similar. And in a funny way, they’re examining the same kind of things. Unseen, difficult to measure, more abstract and less concrete forces. Notions. Yet science is kosher, spirituality is suspect. It’s funny how the snake-oil salesmen and women of spirituality give it a bad received-wisdom rap whereas the snake-oil salesmen and women of science are merely on their way to discovering a better hypothesis.  

Psychic weather is where something ‘bad’ is happening, but off-stage (ob-scura to the Greeks, hence the modern word obscure), you can’t see it or measure it but you can feel it. Sense it. On this occasion, I don’t think it was psychic weather keeping me awake long before the dawn-chorus, or insomnia. It was a desire for creativity. Not the creativity of this, writing words on a page, or musical notes in the ear or dollops of paint on the canvas — do proper artists do dollops? Or is it merely amateurs? — or ingredients in the pots of this kitchen. It was the desire for creativity in relationships. Relationships with people. Relationships with new people, new relationships with the people I already know. Like my best friend who’s a girl. She is not my ‘girlfriend’, a specific if loosely defined type of relationship, technically she’s my landlady. She’s also not my friend whom I’ve known the longest who’s a girl, that’s Kate who bought me this machine I’m typing into. And not my best friend who’s a boy. What does ‘best’ mean here, and why do grooms have a ‘best’ man but brides don’t have a best woman? (Answer, the best man was the squire’s best swordsman in the days when the squire had first dibs on a newly married woman and her new husband might object. Honest, look it up.)

How many ‘best’ friends can you have?

Ant, with whom I went to school and have known since I was eleven (it will be half a century this September), Fudd with whom I shared my fist day in the Army in ‘82, Charles who is my son’s Godfather and who has looked after me in many ways. Dunc and Max (also Godfathers — slow down, I’ve got more than one son), whom I’ve seen the most over the decades; Daniel and Alan and Emerson (sounds like a band) who guided me in my new world (then) of IT? Different kinds of friendship on different days as the world turns, resonances with different kinds of people.

All of the people I’ve known and have got in touch since they found out I have metastatic cancer. 

When something’s going ‘wrong’ in the lives of a friend, and I don’t know it because I haven’t spoken to them for a while but ‘somehow’ I can feel it without ‘knowing’ I can feel it, that’s psychic weather. And what’s it telling me?

Speak to the friends I haven’t spoken to for a while. Create new connections, in the renewal of old ones. But maybe not at four in the morning.

Wednesday, 03rd, May, 2023.

Thinking about the 12^th, December 2022

Deep within our DNA is the resistance to and honed ability to avoid, change. Change takes effort, energy. Energy is our most precious resource. We harbour energy for use in staying alive, falling in love, building a shelter, extracting nutrients from food and turning sugars into glucose (combusted by muscles and organs). It is easier to seek prey at the waterhole we prowled to yesterday and know the way to, well, the known well, rather than seek, possibly fruitlessly, a new one. Finding a new one takes risk, uncertainty, confliction. (Physical) energy. Resolving these takes even more (mental) energy. Fine if you’ve got some to spare, foolhardy if you’re running on reserve. Einstein’s famous equation, E= mc2 is about the conservation of energy. Great if you surround yourself with people who have energy to spare, foolhardy if the people around you suck yours out.

Yet change is all around. The weather, seasons, day into night into day into night. We grow up, we grow old. We fall in love, fall out of love, back in love again. We ‘fall’. And rise again. New is novel, different. Scary but attractive. New job, new house, new friends, new year.

It takes less energy to run along the road, follow the laid-down tracks, than to beat a new path through the bush. Sometimes the tracks go off in a new direction. The points might slide effortlessly and our metaphorical journey by train continues without interruption or notification. Sometimes the points clunk and jar. Maybe we’re halted by a signal. Pause while we consider choices. Study the signposts or a map. Thinking takes energy. Decoding signs and stuff takes energy, unnecessary at times. Sometimes we stop at a station, do or don’t get off, sometimes we stop in the middle of nowhere for no obvious reason why. Sometimes the other person’s on another train. Or another track.

Enough of the UK train system metaphor.

A diagnosis of cancer is the points juddering, jarring. Not clicking in engagement. The train’s at a halt. And it came to a halt pretty bloody quickly. All of the passengers want to get off, there’s only you left. However many, however loving and caring, however empathetic friends and loved ones, there are times in life when you’re utterly alone. That’s just how it is, it’s nobody’s fault. 

[Editor’s (me) note. This next bit repeats itself (but only if you’ve read previous entries), but I feel it was on my mind, it was important, so I’ve left it in. Oh, and, editing it out depletes the word count …]

My own diagnosis came in code. Codes take energy to decode. There was room for interpretation, differing readings of the signs. Prostate cancer releases a protein into the bloodstream. The quantity of protein per volume of blood can be given a number. This number, relatively, encodes information about the tumour. The normal number for a man of my age, 60 [December, 2022, other than the last three days of it], is about 4.5 per thingy-ma-bobs. The mean number for my age group at which the men died, according to studies coming out of the States, is 165. My number was 196. This puts me into a term I refer to as The Killing Zone. Rhymes with ‘chilling’.

Here’s the thing. These kinds of scenarios do strange things to the mind. Waste a lot of energy.

But not for a day or two. After the numbness has worn off.