Archives for September 2023

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.

Monday, 04th September 2023

Today is the last day of an old life. An ending. At the same time, a new beginning. Things have got to change. Starting now (0500 …). 

I’ve said that to myself so often in my life, the new beginning stuff, start again, especially in the last five years, that the wolfness of the crying probably leaves everybody not even looking up from the TV. That’s a metaphor. Their mobile phone is probably a better, more modern, metaphor.

This time, tho’, it’s not of my choosing.

Tomorrow I start a course of Radiotherapy. To try to kill off the cancer in my body. Or at least the cancer in my pelvic region, if it’s spread elsewhere, targeted radiotherapy won’t help.

Why a new start?

Why is this one different?

In the last five years I’ve had two conditions architected to kill me. Progressive MS, lymphedema in my right leg (a large ugly swelling that isn’t uncomfortable but has major impact on self-esteem), knackered knees. These weren’t going to kill me, although the lymphedema is a carry-over from ‘large and multiple’ PEs (Pulmonary Embolisms, Embolii??) which will have if not checked. Not insignificantly, I grew to seven stone overweight. I’ve not worked since October 2014, soon nine years ago, precisely. Until I moved counties, five months ago, I didn’t go out of the house other than to University, hospital or to chat to my mate Sam who runs the (then) local chip shop. 

At all.

After the dog died in April ‘21, I started to go and see a personal trainer once, sometimes twice, sometimes not at all a week. We’d both seen her in the park during Lock Downs, although the dog wasn’t too interested in the training.

As each of these things has come into focus of consciousness and then started to be addressed, it has felt like the start of a new edition of me. Of a new life. But in time they started to dilute, or fade. This one is different.

With both the blood condition that thickened the liquid of me such that it would no longer churn around my system without intervention, and the successive lung conditions that put pressure on, and overworked, the right side of my heart (the bit closest to and in connection with the lungs, the left side pumps blood around the rest of the body), once the conditions were picked up, the NHS acted fast. VERY fast. No-time-to-think fast.

With a ‘very high’ PSA-presenting Prostate Cancer, I’ve had plenty of time to think about it. My blood test results were December 12th, 2022, it’s now September 2023. All that time for thinking, and there’s been plenty of it, has felt like academy stuff, theory. An abstractioned view of various types of reality, at one or two removes.

Today feels like the day before turning up at the new and first workplace to be told to forget everything I’ve been taught, this is going to be how it really is. How the world really works. Or school were you haven’t got a clue as to what’s going on.

We’ve all been there, I suspect.

The strange thing about this type of cancer is its stealth. It doesn’t hurt. Other than the weeing frequency (a good name for a band?) which could easily be put down to old age, there are no signs. But there is the word of it. It installs fear. Removes hope. Changes thinking. Cancer. It is something you hear about, know about, but it affects other people. So sad. Sometime’s they’re famous and have charities set up. So sad.

PV, or PRV, and CETPH were conceptually architected too kill me. As in, if not this, then that. This one, Prostate cancer, this one’s on the telly, in adverts, film scripts. Everyone knows someone who. I’ve not met or heard of anyone with a PSA higher than mine who’s alive. There are famous dead people with lower PSAs. (A former Army colleague did get in touch to tell me his PSA which was a number four times higher than mine, but it was a number I can’t compute, like grains of sand or stars in the sky). This one doesn’t feel more deadly than the other two diseases I’ve had recently, but this one has a presence in the popular culture (as in population, not as in, er, popular). The collective consciousness. Even if modern technology kills it off, I presume if I don’t change my lifenesses it will just come back. If it hasn’t already spread too far anyway. (The medics are worried about ‘micro-metastasis’ where it has already spread but the new tumours are too small as yet to be picked up by modern scanning technology.)

This time there’s no choice. No option.

Things ‘a gotta change.