Archives for October 2023

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.

Wednesday, 04 October 2023

Sometimes it’s the little things, right? 

Yesterday I had half a bottle of Moet. A couple of glasses of Prosecco in the evening with a nice supper, not worrying about the effects of materiality in my bowel or rectum.

The scanning days are done. Can I resist writing ‘for now’? I don’t want this thing to come back, even though at first, when it was initially discovered, I didn’t care. Life could do what it wanted.

The scanning days are done.

For now, let’s not dwell on the scanning days are done … ‘for now’ bit.

Let the Champagne times begin.

But, the little things. 

This morning I had an apple. Then another one. For most of my adult life I’ve been a meat and two veg man, a real men don’t eat quiches man. Lettuce is rabbit food. For women. Of course, for women. Brilliant, welcome to whom I was, welcome to me. In the last ten years this has changed. Maybe age, maybe the ripples of a chronic diagnosis bouncing off a wall somewhere and coming back within a polarised light. For the last five weeks, seven including the two prior to treatment, I’ve not eaten fruit. No spices either, no pulses, no herby veg, no apples. Two Wheatabix in the morning, soup in the evening. The odd ‘treats’ on a Friday evening, like loads of chocolate, because there is no treatment on the Saturday or Sunday (for me, anyway) so my bowl can be evacuated in easy time — no man-made enforcing agents — by the Monday morning and my worry-mind can relax. (For each treatment, the large and small intestine have to be in the same kind of fullness condition and the bladder at maximum balloon. Each internal organ pushes on the neighbours creating equilibrium that changes throughout the day and with ‘evacuations’. Before treatment, a CT scan is taken in order to ensure the prostate is being jostled into the same geometry as it was for each of the preceding days, the X-ray beam has the same ‘shape’ each day as it ingresses into the abdomen to match the shape and the position in the body of the tumour.) That felt like a paragraph in its own right, not a bracketed aside. As that was … probably a bracketed aside.

I feel like I’ve been living a kind of lie for the last five weeks. A projection of a personality. Not for any one else’s benefit, my exposure to other humans has been exclusively Radiology staff and Patient Transport crews. The odd taxi driver, and my house-mate Tracey, who has been away or ill most of the treatment schedule. Now, today, there is no longer a need for a projection of a life, a channel of positivity to show my mind can beat this thing. I’m ok, I’m strong. I can handle the treatment, take the side-effects. Don’t worry about me. I’ll be ok. Obviously.

And I will. The projection has gone, but there’s still a burned-in silhouette on the wall. Maybe I am actually like this, after all. But, and here’s the thing, I never used to be. I used to be somebody else. Who? Does it matter who? A diagnosis of a wheel-chaired life altered me. Successfully completing college too. Two diseases architected to kill me in 2018. Two post-marriage love affairs to, excuse the expression, to die for. A friendship-love affair I wish hadn’t ended but it has. The love bit, although the friendships still strong. My dog. Two sons entering adulthood and all the pain I, and every other human has gone through, still to come, still to endure. I’m no longer who I was, having thought I’d changed versions of me a few times in my life but now realising I hadn’t, I’d just changed clothes. Now, I’m not me anymore. 

I went through a St Francis of Assisi stage and threw all the old clothes away.

Cancer does that like nothing else. Who am I now? I don’t know. I don’t know yet. But I prefer, infinitely prefer, this version of me. This for the rest of time, me.

This apples-man me.