The Tropic of Cancer

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.

Friday, 15th September 2023

Week two of being radiated, seven zappings in, today’s the eighth (so far two four-day weeks). I had thought once it started I’d have loads to write about. And although that’s true, I’m just too tired. Last night I slept thirteen hours, with a few wee breaks, and still woke up exhausted. I had hoped to make it to my first Boat Show in Southampton next week, but that’s unlikely. I’ll spare you too much info, but yesterday on the way home, even though I thought there was not much in there, I poo’d myself. In someone else’s car. They go to great lengths to zap only the tumour, and the modern machinery is incredibly well tuned to hit only the same shape of the cancer, but a disturbance to the bladder and bowl is inevitable. The one thing — that’s not true, one thing of many — that MS has taught me is that we are all different, unique, and our bodies react to the same circumstances differently. However much you read up on this stuff, how ever much you speak to other people, you cannot be fully prepared. What preparation is there to being hit by a brick wall?

Amongst the non-cancer medication I’m on (other than high-energy X-ray beams I’m not on cancer specific medication [yet, maybe]), is Perinpodril for high blood pressure. I’m not entirely sure what it does but I think it has something to do with stoping the kidney’s re-uptake of salt, or something else entirely, that affects the kidneys and as a side-effect, weeing. Since the start of radiation I have had difficulties weeing, it won’t come, as it were, builds up pressure, stings a lot and dibbles when it does come, and you don’t know when or if you’re finished. First they suggested Ibuprofen for anti-inflamation, the zapped cancer tumour is getting a bit pissed off and the body’s immune system causes inflamation which squeezes the tube between the bladder and the wee’s freedom to the outside world. That didn’t work, so now they’ve suggested [**] which has made a difference to the start of the process and to the flow, and it doesn’t sting, but I ain’t half going a lot more. They said stop the coffee, it irritates the bladder apparently, but I’ve been drinking coffee all my life, it’s one of the few pleasures atm, and there is conflicting advice from different staff. So coffee stays for the time being, but Prinpodril stops, just in case it exacerbates problems. I’ll risk the stroke for now. With trying to keep an eye on urinating frequency, you’re supposed to remain hydrated, clear the bladder before getting to hospital then drink a bunch of water to fill the bladder for the treatment (a full bladder pushes the prostate into the correct position, or the same position as the day before and the day before that). And controlling the bowel’s need to constantly ’squirt’ an exit strategy, by still needing to eat, it can do your head in.