Men's things XXXVII: From Patient to Pawn

No Cause For Celebration

Attending The Christie for my biannual checkup, two years after I completed radiotherapy, should have been cause for celebration. My PSA reading was at the lowest level since measurements began and, beyond that, this should have been indicative of the successful treatment of prostate cancer.

However, the hospital environment, with its various interactions with medical personnel, has a way of depersonalising you into a statistic, a chess pawn being advanced to the next position.

What I did not expect was to be moved, without warning and without my consent, onto an entirely different footing. Self-management was offered as empowerment, when it reads much more like a cost-shifting exercise. I left feeling dispossessed of both agency and personhood.

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A City In Gridlock

First of all, Manchester is in some sort of transport gridlock. Just as maintenance and repairs were being conducted on the tramlines from the city centre to the west, a water main burst close to the exit of the central bus interchange, leading to diversions and chaos.

I had planned on taking the bus to the hospital, but plumped for an Uber, which was charging twice the usual fare.

At the hospital, patients can check in on terminals in the department they are visiting. Mine could not be found, so it took a receptionist tapping away at her keyboard, grimacing, then shuffling papers and finally making a call to determine which waiting area I needed.

Shuffled Through The System

Soon, a nurse called out my name, mangled in ways barely forgivable, introduced herself and ushered me into a treatment room. We talked about my results, some lingering side effects, and a possible referral for other, more intimate things.

It is worth saying that in two years of follow-up I have not seen a consultant. The assessments have been conducted by urology nurses reviewing my PSA results and my continuing side effects, then offering recommendations or referrals to deal with post-treatment issues.

She gathered up her sheaves of paper and said another nurse would come in to chat to me, adding something to the effect that, after two years of monitoring and in-person consultations, the regularity of the checks might change. Little did I know this was The Christie disengaging from me and discharging me into another process.

Thanked For Joining

This other nurse came in with an envelope, a form, and a pamphlet. After introductions, she started by thanking me for agreeing to join the programme. I was unsure of what I had joined, as I was literally blindsided and stunned at what had just happened.

I was being handed over to The Christie Prostate Easy Access Support Service (PEASS), where from now on I should arrange to have my PSA tests taken every six months. The approach is entirely hands-off, except when I call or when they need to discuss my results.

I was told I might receive a notification two weeks before the assessment is due. On the form, the words "We will not ring you unless we need to discuss your result" are highlighted in yellow, even though the font is already bold. Emphasised twice, lest there be any doubt about where the responsibility now sits.

Consent Assumed, Not Given

Then there was the easy conversation of the lady who talks nicely in the guise of being helpful, without any kind of intrusion; the deft kind of patronisation I both felt and read as it was happening.

At no point was I offered the choice of remaining on consultant-led follow-up, nor was I told what the alternatives were. I was told what was going to happen. Consent was assumed and implied, rather than given.

It harks back to being put on a cancer register at diagnosis, again without my agreement or my consent. I had no knowledge of whatever policy this sits within, and that is rather the point; this is my personal experience and how it felt to me, which makes it a valid concern rather than a grumble.

The Pamphlet Problem

The livery of the pamphlet had all the appearances of documentation by Macmillan Cancer Support, even if The Christie was plastered all over it. More to read, less to be addressed, as it exploits patient lethargy to the point of missing the important stuff.

By lethargy, I mean patients getting fed up of reading documents that seem almost designed to dissuade you from finding the real support you need. Much of this should be happening in conversation when you meet your medical support personnel.

Advice That Actually Helped

I say this because the best cancer support advice I got was from the Cancer Support Nurse Consultant who with the Employee Assistance Programme offered by my employer. She apprised me of the essential things: the medication to manage prostate issues, the RADAR key, and the Just Can't Wait card.

Take Tamsulosin. It could have been prescribed as soon as I started radiotherapy, yet it was my EAP support who recommended I ask for it, even though my consultants were already aware of the irritation and the pain. It was as if nothing would have been done and I would have been left to endure, had I not had other information with which to highlight the problem and request treatment for the side effects.

You would have thought The Christie or Macmillan would have this information readily available to disseminate, but what you end up with is another version of the Women's Institute catering for cancer. Meeting for a cup of tea and biscuits, lots of talk and supposed peer support, without essentially addressing critical need.

Not Made For Kumbaya

I guess it works for many, but I have been unable to appreciate the benefits. Invariably, once I find the engagement generalised rather than particular to my needs, I withdraw into my own shell; every need, when assessed properly, is both individual and unique. I'm not made for the Kumbaya hand-holding stuff.

As I returned home, I went straight to bed and slept for hours. The kind of sleep that tends to quell a sense of discomfiture and discombobulation.

A Better Handover

Change is never easy, but there have to be better ways of introducing a change of process, assessment, and monitoring. State clearly what is happening. Explain why the monitoring regime is changing and what the handover entails. Establish, explicitly, that the patient has understood what is happening. Seek their consent. Then, and only then, hand them over to the new programme.

None of that is onerous, and none of it costs more than the few minutes it takes to treat someone as a participant rather than a case to be moved along. In my view, I was quite poorly served.

Related Blogs

Blog - Men's things XXXVI: A Thankful Progress

Blog - Photons on the Prostate: My Life After Prostate Cancer Treatment

Blog - Men's things - Prostate Cancer blogs

A Gemini Notebook AI Podcast on this blog

Thought Picnic: Everything The Sun Lights Up

A Bus to the Village

I am reliably informed that I was a rather precocious child with strong opinions. One story my father tells often concerns the time we returned to Nigeria; well, my parents returned, as it was my first trip out of the UK. I was just around five years old. On the bus journey to our village, everyone seemed to be talking at the same time.

To my innocent self, the cacophony was so disturbing that I asked out loud how anyone could hear anyone else speak if they were all talking at once. A military man took umbrage at my outspokenness. I suppose I did not realise I was in a society where children were barely seen, talk less of being heard.

This soldier wanted to administer corporal punishment for my infraction, but all the other passengers prevailed upon him to quell his emotions. I do not recall any of this, not even in the deepest recesses of my memory; the whole episode comes to me in my father's telling.

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Curiosity Gone Underground

Beyond precocity, there was curiosity and inquisitiveness, a need to understand how and why. These were questions people struggled to answer, yet they were also good for conversation when you are trying to sustain a discussion with a child taxing your mental faculties. Those features remain characteristically personal; only now, it is easier to log on somewhere and find the information you want.

On the interpersonal front, however, I am considerably more reticent. I do not speak my mind as readily as I did when I was a child. I rarely pry, and I try not to invite myself into situations that have not elicited my opinion. As a consequence, I probably know so little about many people whom, by some sort of relationship, I am supposed to know a great deal more about.

The curiosity itself has not diminished; it has simply gone underground. I research discreetly, gather information surreptitiously, and obtain data covertly rather than directly. I find ways of coming by the facts without confrontation, and so my curiosity is satisfied by other means.

Questions Better Left Unasked

I wait for the information to be volunteered, even when the questions linger in my mind seeking answers or certainty. Yet I should be wary of asking the questions to which I already have the answers, especially the ones where shocking confirmations give substance to what would have been best left ethereal.

Then there are bits of casual information that hit you in ways so unexpected that you can feel your head warming up at the new realisation, quite impossible to fathom. These tend to be the things people assume you already know, which simply never came up in conversation at any other time.

That is when you begin to understand that the human story is never fully told. Any human story has always been part of the broader narrative of life, even if you have never come across it before; what seems weird and unusual to me can be entirely typical elsewhere, and in the process, my perspective is broadened. Whilst there is nothing new under the sun, you have not seen everything the sun lights up. C'est la vie.

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Men's things XXXVI: A Thankful Progress

Why I Keep Writing

Since I began the blog series "Men's things", in which I wrote about receiving a diagnosis of prostate cancer in early 2024, and since I started the series "Photons on the Prostate" when I began radiotherapy treatment in late 2024, I have felt it important to post regular updates.

As I have written before, life after cancer treatment can be quite different and quite interesting. I have not held back about the bladder, bowel, and sexual dysfunction issues, the nocturnal insomnia, or the loss of my natural voice, all of them lingering side effects of a treatment regimen that, from June this year in the UK, has changed radically for a lesser long-term impact.

The radiotherapy itself has improved too, with better targeting, less impact on the surrounding tissue, fewer side effects, and roughly a quarter of the sessions I attended two years ago.

Get Checked, Get Peace

My advocacy, however, is simple. Men need to get checked. If you fall within a more susceptible cohort, say, a black man over 45, someone with a family history of cancer, whether in male or female relations, or you are attributing benign urinary issues to age or to some other gradual development, you cannot put off getting investigated.

An AI-generated infographic on the blog content. (Click to enlarge.)

I would suggest, first, a self-diagnostic tool, The International Prostate Symptom Score (IPSS); an eight-question screening and tracking tool used to evaluate lower urinary tract symptoms (LUTS) associated with benign prostatic hyperplasia (BPH), that is, an enlarged prostate gland. It exists precisely so that men do not dismiss their symptoms as nothing more than the march of age. [MedScape IPSS Calculator]

Now, not every enlarged prostate gland is indicative of cancer, but every enlargement must always be investigated, starting with requesting a PSA test from your GP. It is a blood test that checks the condition of your prostate and can lead to further, essential investigation. The most important thing is that, if there are issues, they are caught early and treated promptly. [NHS: PSA Test]

Who Screening Is For

In the UK, screening is currently offered to the more susceptible cohorts, such as black men over 45, amongst whom one in four is affected, as opposed to one in eight of the general population.

That said, if younger or lower-risk men try the IPSS and return a concerning score, they should have a chat with their GP. We cannot cross a bridge before we have reached it, but neither should we pretend the bridge is not there.

My Monitoring and Gratitude

I had my first PSA test in early February 2024, but the second, at the end of March 2024, when I was checking for folic acid deficiency, showed a progression that required further assessment. The diagnosis came in June, and I commenced treatment from September into October 2024.

Since then, I have been monitored regularly at Christie Hospital every six months. I visit my GP for a PSA test within a fortnight before my scheduled appointment and present the result as part of my consultation. My PSA test results have consistently and progressively gone down, suggesting that the radiotherapy was successful in destroying the cancer in the prostate gland.

I will be attending the hospital later this week with a result that fills me with gratitude for early intervention, with wellness, and with thankfulness for the progress so far. All I can say to the men in the room is this: get tested, and get either peace of mind or the necessary early help to keep you here with us.

Related Blogs

Blog - Photons on the Prostate: My Life After Prostate Cancer Treatment

Blog - Men's things XXXV: A Man's Search for Dignity

Blog - Men's things - Prostate Cancer blogs

A Gemini Notebook AI Podcast on this blog

The Trouble with Games I Never Wanted to Play

A King Alone

This may not read as a review, but computer games, in the guise of advertisements, have invaded my space at certain times, and they have elicited social commentary that people might not have considered germane to their leisure moments.

Take Royal Kingdom: a king without a kingdom or courtiers, which is neither royal nor monarchical in any true sense, for what is a king without a court?

I can never imagine being a king in a kingdom of one. That lonely existence, without any sign that knights might come or subjects might intervene, already puts me off any idea of playing the game. It is an irritating diversion I must endure to reach the game I actually want to play.

Poverty as Entertainment

Gossip Harbor: Merge & Story visits upon us the direst exposition of falling on hard times. It is instigated by a divorce, after which a mother and child are left with nothing, forced to fight against the elements for shelter and sustenance, in a manner that makes a Dickensian situation look heartily luxurious by any standard.

If the purpose of this game is to conjure in our imagination an unspeakable penury that no Western society would, in this day, countenance, then I am unimpressed.

We seem to be visited, in computer games meant for leisure, with the societal deprivation we once saw in documentaries from faraway lands, though now it wears the unexpected visage of Caucasian faces.

The main developer even appears in the adverts, telling us he is on holiday with his family at some resort, that the game is free from advertisements, and that it has so many levels that, in my view, it bears no significance to reality.

I want to suggest that the developers have no inkling of life lived on the edges; this is the use of poverty graphics to titillate and to excite a sympathy of the sort charities rely upon, and my concern is that such depiction, met in the course of play, might inure us to real suffering.

Truth Told in Jest

You might say I am reading too much into a game. I would aver that the truth is most easily let loose in jest and at play; miss the cues at your peril.

If I were rating games, the lowest rated of all those I have encountered in the adverts that interrupt the continuity of my leisure time would be Hero Wars.

It has many variants, but the one that filled me with disgust featured a young man and a pretty lady for whom he gave limb, heart, and body to save her. Only for her to cast her eyes on a more personable, muscular hunk. The betrayal is not merely that she deserts the man who saved her; the two of them then spit on him before running off.

An AI-generated infographic on the blog content. (Click to enlarge.)

Betrayal and Redemption

It is only a game, you might say, and yes, it is. The young man then enters some mystical dungeon, fighting all manner of creatures and warriors to gain points and ascend to some level I have never cared to explore.

What I cannot abide is the humiliation heaped upon the betrayal, with the man having to seek some sort of redemption in battle. If I were to situate this in time, I would suggest it is mediaeval at best, and yet it is probably part of our human story. I suppose I simply do not like it as the opening of a game, regardless of the pleasure one might derive from playing it.

A Preference for Logic

Whilst I prefer board games like Scrabble and Chess, which I have not played in a while, I have never been able to transfer that enjoyment to playing online; there is no look and feel of the tiles or the chess pieces.

Yet, after I learnt to play Sudoku and completed many books of the puzzles some twenty years ago, I found some good versions online that I could play on my mobile phone. I like the straightforward logic involved. I usually play the Daily Challenge and the Expert level games.

In the early versions of Microsoft Windows, we had Solitaire, which was a good game for learning how to control a mouse, and then Minesweeper, the object of which was to eliminate the mines hidden under the tiles without triggering any, or you lost.

The Lure of Meowdoku

Then I found Meowdoku. It is not necessarily original in concept, but it appears to combine the rules of both Sudoku and Minesweeper. You are to find all the cats hidden under coloured tiles, such that there is one cat per colour region, no cats share a row or column, and no cats touch diagonally.

It is a kind of addictive logic puzzle, and quite competitive amongst the live players. We cannot interact with one another, but there is a leaderboard to which I have many times risen to the top and held my position for a while. In my view, a leaderboard makes no sense if you are not at the top.

Life at the Top

Last night, I noticed someone I had trounced a few days ago, now so unrelenting that, for all my efforts until I grew tired, they left me flailing in third position. I consoled myself that I still had a medal, which never goes to the fourth placed in any competition.

The leaderboard is reset every twenty-four-hour cycle, so your previous wins are not cumulative, apart from the few free hints you gain when you next log in. The world of these games is layered: some carry adverts, others offer a subscription, and some do both at once.

Even my Sudoku, registered and paid for, still runs an advert to unlock one special hint feature, which is, ironically, how I came upon several of the other games in the first place.

I avoid the advert-intensive ones where I can, but Meowdoku has no subscription model at all, so the adverts after each new game must simply be borne with patience, and you already know my opinion of the ones they show. Still, I cannot help but feel that these games, for all their faults, could be a lens on human suffering brought into the levity of leisure.

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Hydrate! Hydrate!

A Reluctant Errand

It is the fear of becoming a pin cushion that forced me out into the rain to visit the local store at the junction across the road, to buy water: the still and the sparkling variety, in packs of eight.

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I generally have no taste for still water unless it is mixed with a fruit cordial. I even remember a time when taking a sip of water made me sick, so I turned to carbonated soda water or tonic water for my fluids instead.

From that, I naturally began to drink sparkling water, and it has remained my main way of taking water ever since, apart from a break of almost a year after radiotherapy, when I drank cranberry juice instead.

No Camel, Sadly

The truth is that I do not drink enough fluids, and it is not as though I am a dromedary, able to store water in a hump whilst I traverse the desert sands. Fruit juices, or beverages like tea, primarily Earl Grey, and sometimes coffee, are not a good substitute for water.

Brian is always on my case about not drinking water. My pills generally go down well on a cocktail of cranberry and orange juice; I do like a fruit cocktail, and grapefruit with orange juice is such a draw, though one should be mindful of how the former affects a good deal of medication.

Stuck in Limbo

As I write this blog, the aftertaste of still water lingers, and my pills still give the feeling that they have not descended into my stomach, but are lodged in my throat. Sparkling water would never leave me in a state of limbo, unsure of whether peristalsis is in order or whether I should eventually expect eruptive emesis.

I sit up and open the other bottle of sparkling water, take a few gulps, and settle in the hope that the pills will not venture to be seen again, in a puddle of bitter vomit. Food impaction is too much of a lived experience to be taken lightly; I have choked on pretty much everything that can be swallowed.

Blood From a Stone

I have an appointment for blood tests in the morning, and I am mindful of last Monday, when the veins on both arms presented themselves but the blood dissented, and the fingertip pricks offered too little for the required assays. I do need blood drawn for the Prostate-Specific Antigen (PSA) test, in anticipation of my biannual checkup next week.

It is better to be safe than sorry, and I have learnt that, except in hospital phlebotomy wards where the nurses are trained to draw blood from a stone, you might come to a great deal of harm elsewhere with nothing to show for it. Swiss cheese having had a better time of it.

I hear many familiar voices: Hydrate! Hydrate!

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Accessibility and a Tale of Four Airports

Blind Spots in Accessibility

An AI-generated infographic on the blog content. (Click to enlarge.)

I have come to notice how many blind spots exist in the provision of access and accessibility services across so many domains. Nowhere was this more obvious than at the international airports in Manchester, Amsterdam, Paris, and Cape Town.

Using the customer assistance service, the first thing I noticed was that while a space had been set aside for people who required help to get around the airports and then to or from their flights, the toilets were never nearby.

The ideal would be simple enough: situate the toilets close to the waiting areas, and perhaps ask the people who actually use the service what they would like improved about their experience.

Lost Without Signage

In Amsterdam, there was a setup where you had to go through security simply to use a toilet. I was beside myself with frustration and discomfiture when I needed the facilities, for there was no information or signage to guide you, and all at the risk of soiling yourself.

You wonder, did anyone really think about what the need for an accessibility service actually entailed, or did they merely tick a box for providing a space without any further consideration? The mind boggles.

One would think the most immediate need of anyone using that service would be reaching the toilets without being lost in the wilderness, like the Israelites of old.

A Tale of Four Airports

The failings were not all of a kind. In Manchester and Cape Town, the problem was the sheer distance from the waiting areas to the toilets, which becomes acute when you have no one to look over your things.

Paris, frankly, was forgettable: language barriers at an airport that deals with an international clientele, and the experience of being abandoned without any information on who would serve you or how you would be taken around.

I raise all this not out of grievance but out of expectation. We all want to travel and enjoy the experience as much as possible; it is the very reason we apply for airport assistance in the first place, expecting not to be put upon or frustrated by it.

In Fairness to Staff

To be fair, the staff are generally helpful. The trouble is that some airports are badly short-staffed. I can recall one occasion where a single member of staff had to handle four passengers who all needed this service at once. You feel for them, caught in a logistical mishap that leaves us victims of what amounts to sheer incompetence higher up.

Cape Town, I must say, has provided the best help of all. I am met at the flight and wheeled through passport control to baggage reclaim, where my helper is joined by another to collect my luggage. I am then taken to the taxi stand, where the two of them help load my things onto the vehicle, as happens at no other airport.

Priority Spaces Ignored

Beyond the airports lies the public understanding of disability, or of needing assistance. I have lost count of the times I have boarded a bus and found the priority spaces for the pregnant, the aged, or the disabled not only occupied by seemingly able-bodied people, but taken up further by their bags and goods, the owners totally oblivious and unconscious of those who need them.

Sometimes you will be noticed and offered the seat, yet I know how many times I have had to ask, especially on the trains or on the tube in London.

Not Fred Astaire

Walking the streets presents another dilemma, as I use a walking cane. Though I am a brisk walker, I would not pretend to be nimble on my feet. Even so, you find people expecting you to give way, as though you were Fred Astaire stepping out to dance, cane in hand, sweeping across the pavement with the fluidity of a swan floating on the air, displaying the kind of dexterity that modern dancers could never aspire to perform.

Well, I simply stump my cane into the ground and wait. You go around me, rather than expect me to manoeuvre around you, when you have perfect ambulation to swing, swerve, skip, or jump. The walking cane is not a fashion accessory; it is an aid to get me around.

Mind the Blind Spot

Access and accessibility have their requirements, so please, do not usurp the space ahead of those who need it more than you do. None of this is difficult to put right. Site the facilities where they are needed, staff the service properly, and, above all, ask the people who use it. That is all we are asking for, and it is not very much.

These, after all, are the blind spots that good intentions leave behind, and they are mended not by grand gestures but by the simple act of noticing. That, in the end, is all accessibility asks of any of us. Thank you.

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Thought Picnic: Snippets Through the Strings

A Change of Station

Some time ago, and I cannot remember how long now, I switched my radio to a news channel, hoping to keep abreast of global events. I can assure you, it is not healthy.

Way back in March 2022, just at the advent of the Russian invasion of Ukraine, my life of listening to BBC Radio 4 changed, as everything on the news had become depressing.

The news brings the world into my space, the knowledge of what is happening beyond my own; yet if that knowledge does not engender wholesomeness, it can be troublesome. However, I need sound around me, especially when I sleep, though I should also learn to appreciate silence more.

The two peculiar requirements for sleep, in my case, are sound and light. I like to keep some light on, for I do not care to sleep in darkness. I have now switched back to BBC Radio 3, the classical music station, where only snippets of the news sneak through the cascade of string, wind, and percussion instruments, most of them relaying the music of dead white men.

The Weight of Knowing

The sense of injustice, unrest, violence, murder, terrorism, war, and general societal unease seems to keep the world moving along a trajectory towards perdition. You have to extricate yourself from these cycles of information before you become absorbed in them.

Worse still is knowing so much and realising there is little you can do to help. The powerful abuse their power; the rich are consumed by their avaricious quest to acquire more at the expense of everyone, including the poor; technology threatens humanity in unfathomable ways; and the truth is lost to a systematic, determined effort to make you believe something else. You almost begin to question your own sanity.

I appreciate, though, that I have the luxury of being merely a listener to the news, rather than a participant in the disasters, tragedies, violence, mishaps, and accidents. That is the privilege I hold: the ability to switch off, which so many victims rarely, if ever, have.

An AI-generated infographic on the blog content. (Click to enlarge.)

Holding on to Hope

Yet you must hope that there are many more reasonable people out there, not entirely powerless, who know the proper use of their votes to choose rightly, having informed themselves of the facts. How we despair when the rational fails in the face of the irrational.

One aspect of that hope, I suppose, is simply the acknowledgement, regard, consideration, and respect we extend to another; the loving of one's neighbour, the sharing of life's burdens, the knowing that we exist in society to foster goodness above all else.

What appeals to our best instincts must always be in the ascendant. Lawlessness, no matter how pervasive, cannot set us back to the days before Noah's flood, even if all the signs seem to point that way. I still have hope that humanity will find the light, and the good conscience, to change for the better.

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