Archives for August 2023

Tuesday, 29th August 2023.

Today I went swimming. First time in ages. Maybe a little bit more specific: if you regard swimming as using your arms and legs to propel yourself through a body of water, maybe not so much ‘swimming’. If you regard it as taking most of your clothes off and lowering yourself into a body of water, in this case an enclosed open box called a ‘swimming pool’ then I did. I must admit my thrashing about and ungainly movements upright probably don’t constitute a recognised stroke. But hey, baby steps.

For somebody with Multiple Sclerosis, most bodily ailments — heck, most bodies — swimming is an excellent source of exercise. For me, when the whole world tells me that the fix for all ailments of human beingness is exercise, it’s pretty much the only exercise. But, and here’s the thing: (things), it’s bloody boring, everything gets wet, I have to get my fat ugly whale tummy out in public and everything smells of chlorine afterwards.

If you get kicks out of looking at people in few clothes, go down the park, swimming pools aren’t the place.

The first and most important thing is the water supports your body weight against gravity, unlike the park or the local pavements, so there’s less pressure on already knackered joints. It provides a resistance against movement, so it’s a free gym exercise even just walking in the shallow end. As if walking in the deep end was an option. And, I suspect the most important point especially initially, you’re doing something. Taking action, making something happen. The ownership of agency, to whatever small degree, cannot be over estimated in importance when much of you life’s agency is owned by disability or disease.

At first my body was in revolt. Wtf? What are we doing? But my mind was happy.

Saturday, 26th August 2023

I had my second scan, or, more accurately, first revisited, on Wednesday. It’s taken three days to write about it. I would have said at the time it was of no particular concern, I didn’t dwell on it in the days afterwards. But, here’s the thing. I didn’t write about it. To me, that’s a Combat Indicator. Under the surface, in the places my conscious self can’t reach, something’s going on. By having a successful scan, especially after an unsuccessful first one, and getting within a week to go of treatment, it concentrates the mind. Things that are unimportant become so. Things that are important become more so. That hazy ground where you can’t tell if something’s one or the other, which is which, retreats into the background. The background of the subconscious, well, that’s buried deep.

Except it isn’t.

When the important stuff is labeled thusly, likewise the unimportant stuff, then the mind can focus on the in-between stuff and get to work.

One of three things is going to happen with this cancer.

1. It will kill me.

2. It will kill me but take its time.

3. It won’t kill me.

Once the mind has been focused, a kind of cleansing, it can consider these three options afresh. The big news is it can, within the three options, prune out extraneous shit.

I think.

The proof of course, is in the pudding, and that isn’t served for a while yet.

And then there’s not what I think, but what I believe.

Tracey introduced me to one of her friends yesterday. One she knows, and I have met, through MS circles, the other is the friends husband. He recently underwent the same treatment I‘m going to have for the same reasons. It was really useful to talk to him. 

As I’ve got older, and this came more into focus during the studies for my PhD, it has become more obvious to me that to consider one option of looking at life as ‘black and white’ is an over simplification. As the blurring of general identifies has shown. Male / female, good / bad, black / white. This is because there’s an in-between state, a more fuzzy state that is therefore harder to define, harder to grasp. Unlabelled. ‘Things’ can be neither good nor bad, a temporary holding pattern in-between. Often, absence of bad is good enough and it’s a much easier state to seek when you’re stuck right in the middle of bad than seeking ‘good’. And beyond. After all, good is the enemy of the excellent. Baby steps. One day at a time.

Wednesday, 16th August 2023, Part 2

Do they recruit people who are always smiling and cheerful for Radiology, or are they trained to be like that? Do they finish a shift, get home and crack open the Vodka?

Well, either way, they are amazing.

I’ve spent a lot of time with front-line NHS staff over the last five years. Four hospitals, five now including Southampton, heart surgeons, lung people, blood cancer, neurology. In Southampton’s Radiology department there seems to be the highest density of tuned-to-make-you-feel-better people in one department that I’ve come across.

‘Do you like movies?’ Asks the radiographer, Dom. Or the radiographer’s mate, however it works. ‘Have you seen Withnail and I?’

I have as it happens.

‘Do you think Jay should come and see it with me?’

I do as it happens.

Jay is the tall goth-looking, if you can look goth in a white nurse’s uniform, nose-ringed tattoo’d assistant. I assume assistant. Lovely fella.

The technology they operate now is pretty incredible too. I d been told that in Gloucestershire I’d be having eight weeks of Rad Zapping and I thought they were 40 minute sessions. The oncologist is Southampton told me it would be 20 sessions. Nick told me in the briefing he gave that each session lasts for — wait for it — one minute. One minute. Twenty minutes in total is all I need. 

Each slice of imagery in the scanner creates a 3-D model of the tumour. Somehow, boffins in the back room, god bless their cotton socks, program the Zapper so that it ‘knows’ the exact shape of the tumour. As it rotates, lead rods move in and out mirroring the shape of the tumour. Where the rods are present no X-rays can get through, where they’re not — the shape of the tumour — they do. These X-rays are 10,000 times more powerful than the one that shows up your  broken leg. They dance in and out for a minute, zapping the tumour and nothing else! Wow.

Wednesday, 16th August 2023, Part 1

Warning: Language and themes not for the feint of heart.

Imagine the scene. You’re sitting in the office of a Senior Nurse Practitioner. You’re with a woman, who’s come along for support. She’s neither your girlfriend nor your wife. The subject is cancer. Serious stuff. The Nurse, he’s older than me, is larger than life, funny, personable, with a touch of Paul O’Grady. We have established an excellent rapport, doing what in the old days was called banter, now-a-days is called political incorrectness. For example, we were talking about my multiple blood tests and venesections (a pint of blood is removed and discarded every two weeks in order to effectively thin the blood, the carrier liquid is reproduced by the body quicker than the blood cells) ‘I haven’t had so many pricks in me since Boarding School,’ I said … Guffaws all round.

That was a joke. Despite going to an all-male ‘70’s British Public School, I didn’t ….. why do I feel I have to justify myself???

The context of prostate cancer (outside of it killing you) is testosterone blockers and the effect they have on the body. Specifically, on sexuality. Not a subject that most human being are comfortable discussing in company. Not without a drink, anyway. I am at ease.

The nurse, let’s call him Nick, at ease with a spade being called a spade, funny and visual with his gestures. A clenched fist at the end of a quickly rising forearm, pivoting at the elbow, leaves no room for doubt that the topic of conversation is erections. Or lack of them. ED in the technical parlance. Erectile Dysfunction. I have no idea if my erectile is dysfunctional or just absent in that I haven’t had one since April. The thoughts are, ahem, still there, the eyes still appreciate, but not to any degree that might have caused a stirring. So, I haven’t tried to Awaken the Giant Within, as Anthony Bourdain would say. (He wouldn’t, he was a chef. Anthony Robbins.) Absence of activity might well be the same as inability of activity. Maybe I should give it a go.

And here’s where it became awkward / funny / bizarre, all of the above. Nick turned to my companion and started to talk about how the lady can, er, help and contribute to the rehabilitation of the libido.

‘It’s not that sort of relationship,’ she said.

Former Royal Navy, former girlfriend of mine, not easily fazed and certainly not by talk of elections. Elections? God bless autocorrect. Correction Defections.) Erections.

Nick, unfazed too, continues as if she hadn’t spoken. He has obviously taken one look at the two of us, the ease with which we exist in each others’ company, the familiarity, and made his own decisions. Nick continued with his married couples’ advice on sexual rehabilitation. She smiled politely. And, did I mention we’re not married? Not even girlfriend / boyfriend?

Now, here’s the thing.

I wish we were.

Real life doesn’t stop because of cancer.

Tuesday, 15th August, 2023

I’m sitting reading one of my favourite books from my youth. Fair Stood the Wind for France, by H E Bates. It’s like reading a new novel but with an echo of known excellence. I want to know if I feel it’s as good now, forty years on, as I did then.

It is.

The weird thing is I’ve not had an alcoholic drink or a coffee for four days. And the usual detox detriments don’t seem to have come on. Or not to the same degree. Nor the tiredness, bad energy, squalid thinking. Well, a bit, but in much larger spaced waves and with smaller peaks.

Wait! That’s not the weird thing. I’m reading because the skipper’s gone for a doze for an hour or two and I’m having a rest in the sun.

Skipper?

You see, I’m sitting reading on a boat. A yacht. It friggles and fidgets, sways like a drunkard’s walk, alters its position in space in three dimensions. Sitting in the cockpit with the sun on my back, changing horizons with other boats, the jetty, a distant bridge, the river. Even though we’re not moving, we’re tied to the jetty, we’re moving. Never still. Myriad colours of kaleidoscopic grey-y greens of the water, blues of the sky and whites shading to the different greys of the clouds. It doesn’t seem so dominant, the barely detectable movement of something that’s still, but still on a tide. Inside the cabin, in front of me is an oblong window, higher up, through which the movement of the mast and flying bridge of the boats opposite is more measured. Even looking within, at the panelled walls of the boat, my ears’ movement tubes (technical term) are detecting motion. It’s not unpleasant, just … different. Weird. It doesn’t affect my eyes’ movement across the line of the book, nor the reverse sweep cycads (now that is a technical term) that means my eyes arrive at the correct point to start the next line. Makes pouring kettled water into the coffee cup a skill, though.

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.