The Tropic of Cancer

Sunday, 10th December, 2023

My last entry was 04^th November, a month and a week ago. I had a file for the blog prepared marked 051123, but its content is blank. Like, I guess, that part of my mind. The part that writes Creative Content. That can’t quite be true, or wholly true, I’ve written a dozen poems since then, but that’s different. This is work, poetry isn’t. Poetry is something I do like I read or breath. I’ve also been writing, or designing, structuring, my book based on the book proposal for Routledge which is an extension of my PhD thesis. That involves getting back into reading Academic texts, taking notes, thinking. Funnily enough, that obviously isn’t work either. It’s what I did when my dog died. Why I went to University in 2016 in the first place. To escape self-inflicted mental torture. My book about the dog, Zen and the Art of Woofery, my novel about disabilities, The Silence of Sound, nothing. Zilch. Zero. Much as I don’t regard them as work, not this blog either, by the measure of how much have I actually done in the non-PhD related activities, since the beginning of November, nothing.

Why?

No idea.

Can I work it out?

Probably.

Here goes.

The (then) upcoming November the 14^th appointment with Oncology post-treatment is massive. Could it be the impending anticipation of that?

Don’t think so. 

November the 16^th was amazing for me, I’ll get into that elsewhere. But nothing blogged the day after, so not that either.

I think the event and the battering my body took, the implications and PTSD from October 30^th, took me into new and different realms of despair. For me, the management of my mind in coping with some traumas at the time delays the PTSDness effect, which I guess to some degree is the measure of the ‘P’ in the acronym,  Post. The implications of my bladder were just too subtle and too enormous for me to process. Then, as I was coming to terms with wearing a catheter and having a toilet strapped to my leg, coming to terms well enough to drive the 140 miles to Cheltenham, stay in a BnB, attend my graduation and spend all of Saturday sitting in the pub with my family (not many wee-ing issues there, then), they changed the rules of the game again on the Tuesday after graduation, removing my external catheter and sending me on the path of Intermittent Self-Catheterisation (ISC). I’ll spare you the details. Oh, OK, no I won’t. It involves sticking a tube up my penis, which is a reluctant participant and already diminished in status through half-a-year of testosterone blockers, so it tries to disappear along with the tube into my body. Try telling that as a chat-up line. This tube then penetrates the sphincter muscles around the bladder, which no longer function owing to a month of a permanently inserted catheter, and let the urine flow. At the moment, because my MS-dominated fingers don’t work, I can’t control the other end of the tube and when the pee begins to flow, it flows anywhere. Everywhere.

The implications of all this (‘Will this be for life?’ ‘Probably’.) have had a deep and bruising effect but at a very low level. A level lower than I am accustomed to tuning into. As I try and think about problems and issues, difficulties of differing configurations of public toilets, overcoming shame, probable public embarrassment, I keep returning to my mantra: I’m still breathing. I’m still alive. Many my age are not. The folks out there, even when stuff goes wrong, are trying to keep me alive.

For free.

So, November 14^th. I have a recording of the session but have not listened to it yet. Treatment will have killed off the tumour in my prostate and the lymph node. The other specifics, the left iliac nerve, the seminal vessels, weren’t mentioned but the headline was of ‘the pelvic region.’ My PSA was six, down from 196 in December last year which I regard as amazing, the Oncologist was non-comital. The key is the February PSA reading which should give an indication if, as she suspects, the cancer has already spread through the lymph system but as yet is too young to show up on scans. ‘Young’ is not a medical term. Micro-metastasis, I think, is. Prostate cancer, apparently, even when it’s not in your prostate, weeps the PSA proteins into the bloodstream. We shall see. 

Personally, I’m optimistic.

Why?

Writing words again, en’ I?

Saturday, 4^th November, 2023

And there it stopped.

Curious week. 

Recap. We stopped in the pub for lunch on the way back from Urology. Celebration mode almost. Just the knowledge of what had been causing my distress over the last four weeks — and three mis-diagnosees of a constantly full, inflamed and pressurised bladder not emptying correctly and being fried everyday, and now being ‘fixed’ by the catheter — was a kind of ‘closure’ result. Body internally a bit battered and very uncomfortable on top of the therapy, but psychologically all good. Get home, take my trousers down. The bag is full of red, bright red, liquid. It looks more blood than urine. Tracey happens to be in the room, she’s horrified. To be fair, it doesn’t look vey pleasant.

Ring 111.

A whole bunch of catch-all questions, despite telling them exactly what the problem was. All I want is a number for Urology. They can’t put me through to Urology. My Doctors’ surgery can’t give me a number for Urology either. (?). Distress on top of distress. In the meantime, Tracey has looked it up. Ring Urology. Nothing to worry about, it’s quite normal.

Normal?

What a week. Weeeee-k. Excuse the pun. My default sleeping position is on my right side, right leg forming a tent pole (for the quilt) over the left, right foot resting on the left calf. This is an MS-derived position arrived at over many years. The catheter bag is tied to my left thigh and sits between my legs. If I’m on my side it obviously can’t fill (it’s being squeezed shut.) Likewise my second position, on my right side, left leg similarly hooked. Not possible. I have to sleep on my back. The night before last, the Thursday, the catheter tube came out, somehow the geometry of biology meant sleeping on my left side somehow rubbing thighs unhooked it, and with the end of the catheter tube in my bladder there are no wake-up-and-have-a-wee-now triggers so I leaked blood-filled urine over my bed clothes for an hour. Fortunately, the mattress is protected. It was incredibly disappointing to return to the experiences of the last few weeks, sleeping in an extended wet patch with a towel beneath me, but also informative. Don’t go to sleep on your side …

 I had been reminded of an experience early in my frying schedule. I’d needed to go for a wee and didn’t want to fill my nappy, so went to the loo. The nurse was coming passed to call me as I came out of the loo and became a bit agitated. Oh, you’ve voided, you need a full bladder. (If I had to re-fill my bladder the twenty minute delay means the schedule takes a hit). They decided to take me into the chamber room anyway and ultra-sounded my bladder to be surprised to find it was full enough to be doing the correct pushing of organs into place and they could go ahead with the treatment. Flash forward to the 30^th, again the surprising result of an ultra-sound to find I still had a full bladder after having been for a wee. A conversation with the consultant going round in circles until Tracey mentions MS. Cartoon slapping of the forehead moment followed by a ‘Doh!’ from him ‘Of course! MS!’ 

A catheter is needed.

The squeal was because, once the catheter was inserted, a process which brought a frown to my forehead itself, they took 930ml of liquid out of my bladder. So, let’s think about that a moment. 4/5ths of a litre of liquid, pressurising the walls of the bladder and squeezing the kidneys up and the prostate and bowel across, is suddenly lanced and has to try and escape out of a hole the circumference of the tube in my dick. A/ this was high pressure and B/ it took a while. And then another while for the effects to fade. All the while a strikingly attractive and exotic (Portuguese) Sister and her assistant were strapping a new bag to my leg and telling me all about future catheter management. I didn’t hear a word . . .

In one way it feels like I’ve ‘lost’ ten weeks of my life, like the previous ten years feels like I was in prison (my life post-family marriage living on my own in Cheltenham before I moved to south Hampshire). But I haven’t. I’ve been doing whatever caterpillars do before they become butterflies. And only ten weeks is cheap. As Boston said, it’s more than a feeling, but I haven’t read a book in ages. I’ll give myself till Wednesday, I think it takes ten days for internal trauma to stabilise and begin to heal, I think frying an MS-damaged bladder might even be big trauma. The funny thing is, I was going to say, to get back to normal. Here’s the thing, there is no ‘normal’ for me to get back to. It’s all new, fresh. Nothing but Christmas presents. Hopefully, if I start to sleep again, I can recalibrate the bits, the few bits, of me from my old life I want to keep and start whole again. Reborn.

Friday, 27^th October, 2023

I’ve been a bit naughty. If I was fit and well, it would still be a bit naughty. As a convalescent, I’m being even more than a bit bit naughty. Very naughty, in fact.

I was a bit naughty last night too. Tracey, my housemate (landlady really, but she isn’t large and round with curlers and stockings round her ankles living in Brighton) and her boyfriend were going down the chippy. Did I want anything? Oh yes.

In terms of health and body weight probably not a good idea, but boy did I like it. There’s a chippy just up the road but I haven’t been there in the seven months I’ve been living here. It feels a bit disloyal to my friend Sam who runs a chippy close to where I used to live in Cheltenham. What a weird kind of loyalty. On the last weekend with a then-girlfriend, over a year ago now, we had a clash over the milk having gone off. From then onwards I don’t take milk in my coffee anymore. How weird is that?

So, when opening up my thoughts about dealing with cancer and the treatment’s after-effects, I guess it’s important to frame the thinking with the observation that some of the stuff I can thunk are a bit weird. Or unconventional, at least. Different from the norm, maybe.

So, the four tins of beer I bought today for this evening’s rugby 3^rd v 4^th game, although a bit naughty, I don’t care. Psychologically, I need to feel ’normal’. When treatment finished, after seven weeks without an alcoholic drink, I lost it, slipping back into old habits of alcohol every day. That wasn’t naughty, it was bloody stupid. Both in terms of my convalescence and losing weight. On the one hand, I’ve lost four stone since Christmas. On the other, I’ve still got two and a half to go. And as the weight comes down, it gets harder to loose. In truth, normal has been for me alcohol every day. Lots of it. Partly pain management if I’m charitable. Addiction, habit, weakness of character maybe if I’m honest with myself.

How to change forty years of normal

Get cancer, maybe?

Weight-loss which is imperative for me to reach a BMI from which they’ll ‘consider’ operating on my knee, changes another aspect of my game. Not just relief from the constant pain. Feeling better about myself too. Weight-loss so far has been a by-product. I’m not completely well yet, far from it, but I’m well enough to consider a time where if I don’t think — control — weight-loss it will stop happening as a by-product and I’ll start putting weight back on, a by-product of an addictive personality, without noticing.

Sunday.

Four more beers and a bottle of wine on a Saturday night. That’s normal, right?

Here’s the thing. Alcohol, and other addictions, but I don’t run marathons or shop for another pair of boots, alters your current state. It alters you out of the state you’re in, you may or may not consciously know what state you’re in or that you want altering out of it. Much of the stuff of addictions operates beneath the surface. The radar. With alcohol, once it’s altered you into another state, you’ve also lost control and the gates that would stop you spiralling keep getting altered in rapid succession. And then operate differently. But I don’t want my state altering anymore. I like the state I’m in. Once I’m out of bladder radiation cystitis, of course.

Today I feel real shit. It’s 1430 and I’ve just got out of bed. And the clocks went back last night, in old money it’s half-three. Is this the result of the alcohol? I don’t think so. Was it worth it? 

No.

But if it results in me finding out at that low-down sub-conscious I don’t want to be a drinker anymore. Then maybe, just maybe, it was.

Monday, 23rd October 2023

Last night I felt robbed. The night before — no idea about dates and stuff, today’s Monday, last night 22/23, night before would be the Saturday 21/22 — was landmark. I decided, because of the pain, I try to call it discomfort, but let’s face it (which is a bit unlike me) it’s pain, I took a second Tamsolosyn at about 2300 in order to try and sleep. Up until then my sleeping pattern was wake up in discomfort either needing a wee or feeling like needing a wee, struggle for half an hour, doze for half an hour to an hour. Despite the risks of a second dose within 24 hours, I badly needed a few hours sleep. I decided the risk was worth it. Best I don’t seek advise. Don’t try this at home.

I had a period, about 2 till 5, of three hours. Deep sleep. Then an hour or so watching movies and another two-hour stretch.

It was wonderful.

Last night I was expecting a repeat. I’m now taking the Tamsolosyn late afternoon in order to have maximum dose at night. I was still wide awake at eleven, unusual but maybe chemical related. Dozed off about midnight. Awoke to the familiar stinging discomfort. Checked my phone. I’d been asleep an hour.

I felt cheated!

Today is the first time I’ve written anything sine the 2nd. Partly there is a discomfort to sitting. An insight yesterday evening, connecting the discomfort to timescales, (I had thought the discomfort in my upper gluts around the rump was spending too long at my desk) I think sitting causes the muscles to put pressure on an irradiated bowl and the discomfort just seems to be coming from my gluts. What to do about it? Give it time. And be gentle on myself.

Another new one for me

I’m writing this horizontal. My default orientation for the last week or so. I’ve not been able to write — or read, my greatest pleasure — for a while now. Partly coz of the sitting, mostly because of a zonked brain. I imagine this is what brain-washing is like. There’s an altered state of internal reflection that is distorted in such a way that you don’t realise it’s distorted. I remember former Police dog handlers explaining to me with Zen that one of the difficulties was the dog was being trained to resist the very techniques used to train him out of certain habits. My brain, post-radiation, is in an altered state that can’t see that it’s in an altered state. A zonked brain is a functioning brain in neutral. There is no gas. All energy is for survival, none for locomotion. Hence the need to lie down, nothing more (OK, Sky movies and sport, just to keep the small gas ring on the low setting that is still ignitable, and I found a lovely YouTube channel about a young couple who bought a boat to sail the Atlantic) and give my body time. Healing time, not punishing time.

As a kid my heroes were Douglas Bader, Francis Chichester, Dougal Haston. I wanted to be steel inside. Push the boundaries of the British Empire. Never say sorry, never show pain.

Now I want to be like Mother Teresa, Florence Nightingale, St Francis of Assisi.

See what time can do?

Time and death diseases.

Monday, 09th October 2023

New weeks, new beginnings, new lives, always seem to want to start on a Monday. Some rhythms are indelibly embedded much more so than the natural, Circadian one. In the UK, School years, University academic years, start in September / October. No matter the logic of children’s / young adults’ ages. Why? 

Because of the wind.

Yep.

The wind.

Britain and maritime trade, before the age of mass travel and fruit all-year-round brought about by the 707. OK, 747 for those of a populist cultural knowledge.

Trade Winds — note the term ‘trade’ winds — would cary sailing ships up from Cape Town to India arriving in the Northern Hemisphere Autumn. So that’s when the trade with India, and for Britain the whole of the East by missing out the trade centres at the end of the overland Spice / Silk routes to Venice and Istanbul from China and Persia, would begin the cycle again.

Two or three hundred years later, September is the start of the school year, Monday the start of the working week. I have it in mind Sunday is the ‘official’ start of a week but I haven’t looked that up to confirm. I prefer to like the idea, irrespective of the truth.

How is this related to cancer?

It probably isn’t if you don’t see the world with a brain like mine. Always enquiring, seeking deeper truths, working out the difference between how the world works to our convenience and how it actually works. Made me excellent in Intelligence. An excellent Tester in Government projects and IT. And a pain in the arse as a husband. Or boyfriend.

Zappery finished last Tuesday, a week ago tomorrow. Yesterday, an hour or more from home, I had a huge, er, um, release into the seat of my pants. This morning, just as I was beginning to feel an element of control of my bowel at night, I’ve had to throw away another pair of underpants. Even at home, a couple of meters from the loo, unable to get there in time — at least the pants did the job they were being worn to do. Protecting the kitchen floor.

Even protecting your delicacy it’s still possible to get the message across. Words, right?

The thing is, during five weeks of high-energy beam bombardment, I knew my bowel and bladder was going to be in trouble. Now, almost a week after treatment completion, there is no obvious cause to latch onto so I get a bit foot-stamping ‘it’s not fair!’

We humans like a nice neat cause for our effects. The truth gets in the way.

My house mate has been gracious enough to keep her opinions to herself — mostly — in the week since completion day. A bottle of champagne, KFC, a curry, a few beers Tuesday in a nice bar, a few ciders for lunch in my favourite pub. Some tinnie’s watching the ruby. Yesterday’s (Sunday) poached egg and crispy bacon breakfast came back to haunt me big time, and cause me to change all my plans for the next few weeks. But I had a reason. I ‘knew’ what I was doing. Even though it didn’t look like it when it is clear to all logic I need to give my body a rest.

But what about my mind?

I felt it was so very important, a kind of all-costs important, to behave, and treat my body, as if it was ‘normal’.

OK. OK, in whose book is alcohol every day normal? Umm. There are not many of those round here, as the wide-mouthed frog once said. But I very very badly needed a holiday feel. A reward. A metaphorical pat-on-the-back well done my son, have a break before we get on and live the rest of our lives.

To follow the trade winds. 

Now, of course, it’s time to rejoin the real world, the world as it is. Cancel all my celebratory travel plans. Or at least postpone them. Put the corkscrew in the cupboard. Set up a non-hospital inspired life routine.

Listen to my body.

And be grateful to be, non-celebratory, alive.