Guy

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.

Tuesday, 29th August 2023.

Today I went swimming. First time in ages. Maybe a little bit more specific: if you regard swimming as using your arms and legs to propel yourself through a body of water, maybe not so much ‘swimming’. If you regard it as taking most of your clothes off and lowering yourself into a body of water, in this case an enclosed open box called a ‘swimming pool’ then I did. I must admit my thrashing about and ungainly movements upright probably don’t constitute a recognised stroke. But hey, baby steps.

For somebody with Multiple Sclerosis, most bodily ailments — heck, most bodies — swimming is an excellent source of exercise. For me, when the whole world tells me that the fix for all ailments of human beingness is exercise, it’s pretty much the only exercise. But, and here’s the thing: (things), it’s bloody boring, everything gets wet, I have to get my fat ugly whale tummy out in public and everything smells of chlorine afterwards.

If you get kicks out of looking at people in few clothes, go down the park, swimming pools aren’t the place.

The first and most important thing is the water supports your body weight against gravity, unlike the park or the local pavements, so there’s less pressure on already knackered joints. It provides a resistance against movement, so it’s a free gym exercise even just walking in the shallow end. As if walking in the deep end was an option. And, I suspect the most important point especially initially, you’re doing something. Taking action, making something happen. The ownership of agency, to whatever small degree, cannot be over estimated in importance when much of you life’s agency is owned by disability or disease.

At first my body was in revolt. Wtf? What are we doing? But my mind was happy.

Saturday, 26th August 2023

I had my second scan, or, more accurately, first revisited, on Wednesday. It’s taken three days to write about it. I would have said at the time it was of no particular concern, I didn’t dwell on it in the days afterwards. But, here’s the thing. I didn’t write about it. To me, that’s a Combat Indicator. Under the surface, in the places my conscious self can’t reach, something’s going on. By having a successful scan, especially after an unsuccessful first one, and getting within a week to go of treatment, it concentrates the mind. Things that are unimportant become so. Things that are important become more so. That hazy ground where you can’t tell if something’s one or the other, which is which, retreats into the background. The background of the subconscious, well, that’s buried deep.

Except it isn’t.

When the important stuff is labeled thusly, likewise the unimportant stuff, then the mind can focus on the in-between stuff and get to work.

One of three things is going to happen with this cancer.

1. It will kill me.

2. It will kill me but take its time.

3. It won’t kill me.

Once the mind has been focused, a kind of cleansing, it can consider these three options afresh. The big news is it can, within the three options, prune out extraneous shit.

I think.

The proof of course, is in the pudding, and that isn’t served for a while yet.

And then there’s not what I think, but what I believe.

Tracey introduced me to one of her friends yesterday. One she knows, and I have met, through MS circles, the other is the friends husband. He recently underwent the same treatment I‘m going to have for the same reasons. It was really useful to talk to him. 

As I’ve got older, and this came more into focus during the studies for my PhD, it has become more obvious to me that to consider one option of looking at life as ‘black and white’ is an over simplification. As the blurring of general identifies has shown. Male / female, good / bad, black / white. This is because there’s an in-between state, a more fuzzy state that is therefore harder to define, harder to grasp. Unlabelled. ‘Things’ can be neither good nor bad, a temporary holding pattern in-between. Often, absence of bad is good enough and it’s a much easier state to seek when you’re stuck right in the middle of bad than seeking ‘good’. And beyond. After all, good is the enemy of the excellent. Baby steps. One day at a time.

Wednesday, 16th August 2023, Part 2

Do they recruit people who are always smiling and cheerful for Radiology, or are they trained to be like that? Do they finish a shift, get home and crack open the Vodka?

Well, either way, they are amazing.

I’ve spent a lot of time with front-line NHS staff over the last five years. Four hospitals, five now including Southampton, heart surgeons, lung people, blood cancer, neurology. In Southampton’s Radiology department there seems to be the highest density of tuned-to-make-you-feel-better people in one department that I’ve come across.

‘Do you like movies?’ Asks the radiographer, Dom. Or the radiographer’s mate, however it works. ‘Have you seen Withnail and I?’

I have as it happens.

‘Do you think Jay should come and see it with me?’

I do as it happens.

Jay is the tall goth-looking, if you can look goth in a white nurse’s uniform, nose-ringed tattoo’d assistant. I assume assistant. Lovely fella.

The technology they operate now is pretty incredible too. I d been told that in Gloucestershire I’d be having eight weeks of Rad Zapping and I thought they were 40 minute sessions. The oncologist is Southampton told me it would be 20 sessions. Nick told me in the briefing he gave that each session lasts for — wait for it — one minute. One minute. Twenty minutes in total is all I need. 

Each slice of imagery in the scanner creates a 3-D model of the tumour. Somehow, boffins in the back room, god bless their cotton socks, program the Zapper so that it ‘knows’ the exact shape of the tumour. As it rotates, lead rods move in and out mirroring the shape of the tumour. Where the rods are present no X-rays can get through, where they’re not — the shape of the tumour — they do. These X-rays are 10,000 times more powerful than the one that shows up your  broken leg. They dance in and out for a minute, zapping the tumour and nothing else! Wow.

Wednesday, 16th August 2023, Part 1

Warning: Language and themes not for the feint of heart.

Imagine the scene. You’re sitting in the office of a Senior Nurse Practitioner. You’re with a woman, who’s come along for support. She’s neither your girlfriend nor your wife. The subject is cancer. Serious stuff. The Nurse, he’s older than me, is larger than life, funny, personable, with a touch of Paul O’Grady. We have established an excellent rapport, doing what in the old days was called banter, now-a-days is called political incorrectness. For example, we were talking about my multiple blood tests and venesections (a pint of blood is removed and discarded every two weeks in order to effectively thin the blood, the carrier liquid is reproduced by the body quicker than the blood cells) ‘I haven’t had so many pricks in me since Boarding School,’ I said … Guffaws all round.

That was a joke. Despite going to an all-male ‘70’s British Public School, I didn’t ….. why do I feel I have to justify myself???

The context of prostate cancer (outside of it killing you) is testosterone blockers and the effect they have on the body. Specifically, on sexuality. Not a subject that most human being are comfortable discussing in company. Not without a drink, anyway. I am at ease.

The nurse, let’s call him Nick, at ease with a spade being called a spade, funny and visual with his gestures. A clenched fist at the end of a quickly rising forearm, pivoting at the elbow, leaves no room for doubt that the topic of conversation is erections. Or lack of them. ED in the technical parlance. Erectile Dysfunction. I have no idea if my erectile is dysfunctional or just absent in that I haven’t had one since April. The thoughts are, ahem, still there, the eyes still appreciate, but not to any degree that might have caused a stirring. So, I haven’t tried to Awaken the Giant Within, as Anthony Bourdain would say. (He wouldn’t, he was a chef. Anthony Robbins.) Absence of activity might well be the same as inability of activity. Maybe I should give it a go.

And here’s where it became awkward / funny / bizarre, all of the above. Nick turned to my companion and started to talk about how the lady can, er, help and contribute to the rehabilitation of the libido.

‘It’s not that sort of relationship,’ she said.

Former Royal Navy, former girlfriend of mine, not easily fazed and certainly not by talk of elections. Elections? God bless autocorrect. Correction Defections.) Erections.

Nick, unfazed too, continues as if she hadn’t spoken. He has obviously taken one look at the two of us, the ease with which we exist in each others’ company, the familiarity, and made his own decisions. Nick continued with his married couples’ advice on sexual rehabilitation. She smiled politely. And, did I mention we’re not married? Not even girlfriend / boyfriend?

Now, here’s the thing.

I wish we were.

Real life doesn’t stop because of cancer.