Guy

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.

Friday, 29 September 2023

It’s not party night. Not yet. Not quite.

But it feels like it.

In no particular order. My friends, and part of the reason I moved out of Cheltenham, my friends who looked after Zen and I, and then me, beyond friendship, beyond love, beyond brotherhood and all that, for the past five plus years, took the key of not just a new house, but a new life, in Cornwall. My son, Sethie, joined his younger brother, Alf, in the world of adulthood by receiving a post-uni job offer. An extremely good friend put a deposit down for the major work on her yacht rigging system that has been bubbling away on her mind for a number of weeks. Don’t tell her I said this, but her yacht is both her kids and her dog. My artist friend Rob Mackey got in touch to say Tracey’s Christmas present is ready. 

Does sport count? First day of the Ryder Cup. Europe are blitzing America. A bit like Australia getting kicked out of the ruby World Cup. Some countries at sport, it’s not that they’re bad losers, it’s that they’re bad winners. I feel really sad for American golf supporters and Australian rugby supporters. Oh, wait! No, I don’t.

Oh yeah. Honda have been in touch to tell me my car is in country. They’ll get it adapted next week, I can pick it up at the end of the week.

A car. First time I’ll have driven in a decade. And left footed too, as it were, to boot.

Probably other stuff.

Oh, yeah, cancer.

I’ve completed 18/20 zapper sessions, the fifth of two five-day-a-week treatments, my last Friday. Two more dribbling into October. Just as I got home, the phone goes. It’s the radiology nurse specialist. This definitely feels like end of term, discussing the roadmap, the stuff of the future. And the underlying implication, there will be a future. 

The tumour should be destroyed. It should be disintegrating and being expelled in the body’s waste. To the differing results of MRI and whether there’s infiltration into the bladder, radiotherapy will have destroyed tumour cells in the bladder anyway. The left iliac lymph node was included in the profile for zappery.

If I want I can switch back to bicalutamide from the three-monthly testosterone-blocking injections, the next one’s due now — a whole blog post to come on that — and it’s important to get restarted on ‘blood flow’ happening in my man parts. That’s a bit of a wired one since I haven’t had an erection since April. It might be party night when I first have an erection again, but don’t worry, I’ll spare you the details. Or the gory details, at least.

The future will be registered by PSA readings, every three months to start with. The first a week before my Oncology appointment in November. That will be interesting. Five, I guess is the target, I’ll take advice on that.

Just think, there’s a bit of a chance treatment might have been curative after all.

Whisper it.

Tuesday, 26th September 2023

So, why’s today different? Woke up at half-ten, unheard of. Thirteen and a half hours sleep, or at least thirteen and a half hours horizontal. With wee breaks. Fourteen zapperoos in, today’s fifteen, three quarters of the way in. It feels like the start of an end-game. And, no, not as in an end of life. Today is the first day I’ve felt I can start to think about plans. Post cancer, or at least post-treatment. I’m sure it will take Oncology reviews before there’s any post-cancer talk, and then only if they change, alter, their minds, from the spring. (In terms of the durability).

In the night my body was feeding back the first sign of wear and tear from the high-energy exposure it’s been subject to. Weeing’s been a problem from the get-go, and it didn’t take long for the bowels to go huh? Not having this. This stuff’s not staying in here and it’s coming out now.

Last week, after three and a half years as an escape artist, Covid caught up with me. Brilliant. MS, microwaving (X-rays, but you know what I mean) and now ManFlu in its all-person form.

Thursday, 21 September 2023

Certainly since treatment started, maybe since I started the blog in December22, I’ve not felt less like writing and yet had something most interesting to write about.

My housemate came back room two weeks in Croatia. And brought Covid with her. I’ve managed to avoid it or thee and a half years, but it was always going to get me. Interesting insight into humans, she feels awful, in many ways, for exposing me to it at this time off treatment, I tell her it’s not her ‘fault’. It’s nobody’s fault. It just is. She didn’t go out of her way to get it, it’s part of modern life. She was bad the night before last, without knowing what it was, and now I feel more foggy than usual. My throat is clammy without being distinctively sore, my brain mildly letting me know it is there. Beginning too feel sorry for itself. I think I’m going to be in for a battering!

Tuesday, 19 September 2023

Nothing, no advice, no well-meaning comments, no research can prepare you for some things. When I had a blood cancer in 2018, the ‘cure’ was not an invasive intervention. Well, it was, but small scale. I thought a cruelty of MS, the cruelest thing, was robbing me of the fine-grained motor control to hold a pen, cut an onion.

Nah. Welcome to cancer top-trumps.

Or rather cancer cures.

One of my greatest pleasures (there is no need to add my usual wise-cracking ‘outside the bedroom’ here, with testosterone blockers in my system there is no need for a caveat) is reading in the early morning with a coffee. Any time between four and six. I’d get up, the world was still not a-stir, my small aspect of the world that is, I’m sure they’re up in Australia, put the kettle on, open my current book. Soon finished, onto the next one.

Not anymore.

Even today, where I got up before six for the first time in two and a half weeks, I still can’t read. My eyes follow the words on the page, but they don’t register anywhere. Not even after the third time of reading the same sentence.

Radiotherapy leaves you, one — me anyway — zonked. But not all the time. It comes in waves, it seems.

All of these bog posts (ha! bLog posts) were written in the early morning of the next day (I think all, certainly most) and so far this month, nothing. Nada. Zilch. The one I wrote dated the 5th was before therapy was due to commence that day, the one on the 15th was written in the afternoon as if it was the morning.

Having my bladder squeezed, although not the extent, and my bowels messed with, I’d anticipated. Being ‘tired’ too. But not zonked. Not staring at a line of words (in the morning, before that day’s zapping) with my eyes going over and over words but not reading anything. Waking up at six for a wee, noting unusual there, after ten hours sleep, ok a little unusual but happens now-and-then as a catch-up after a few too-early mornings, but then going back to sleep for another two hours? And then, after twelve, thirteen hours sleep, waking up, sitting on the side of the bed and being zombie-level brain-fogged? Staring into space, even though it’s dark? Feeling like you’re a computer that’s just had the power-on and is going through its start-up checks? MS brain-fog has nothing on this.

An then the wanting to say to a friend, I‘m zonked, give me a break, but knowing they ‘know’, in theory, I’m zonked but the fact that they don’t quite ‘get it’ isn’t their ‘fault’. It’s nobody’s fault. The world continues to turn. People still have their own lives to live. You’re own problems don’t amount to a hill o’ beans in this crazy world.

One of the things I didn’t want to do with this discourse was introduce any negativity. And funnily enough, despite the probably (possibly?) killing-level cancer, I don’t feel any negativity. Patient Transport Services (I’m on the dole and don’t have a car) creates a bunch of problems for me, but the drivers and shotguns are wonderful, and here’s the thing: I’m just grateful for the service. The frustrations of dealing with the big corporates, like energy suppliers, and the modern British business paradigm of coercive bullying, still goes on. Let it slide. Traffic jams making you late for your appointment, let it slide. Being zonked doesn’t seem to amplify life’s frustrations, if anything, it makes it easier to let them slide. Being zonked isn’t frustrating, it just is.

And here’s the thing, the other thing. Stumbling through questions for ‘The Chase’ woke me up, especially when the contestants beat The Beast to take home forty grand each (maybe you had to be there). Writing this seems to have woken me up (glancing at the clock on the cooker it’s now just passed seven am and almost light outside). Active things with my brain-use must be the way ahead. I couldn’t watch movies on Netflix yesterday evening but woke up to ‘The Chase’. Can’t read but woke up to writing — and thinking about —- a blog post. So active is the way ahead.

It’s just when you’re zonked it’s so difficult to start.