Men's things - XXIII

Ignoring the specifics

I was looking forward to my hospital appointment set for Friday, the 4^th of April 2025, though I seemed to have a different level of expectations, for my last visit to The Christie Hospital was the 9^th of October 2024, when I took my last session of hypofractionated radiotherapy to the prostate gland.

In my euphoria about what the visit might entail, I was already announcing to others that it was going to be a conclusive kind of meeting, ignoring the fact that it was a nurse-led urology clinic. Maybe I chose to ignore the details, expecting something that was not on offer.

I was neither consulting with a doctor nor an oncologist; I was meeting with a nurse from urology when every other consultation I had attended from July last year was with a multidisciplinary team with an oncology perspective.

My engagement with urology ended in another hospital after the referral for the multiparametric MRI scan of the prostate gland, which led to an ultrasound-guided transperineal biopsy of the prostate, indicative of cancer, after which I was handed over to The Christie Hospital.

A name mangled

On arrival at the hospital, I was electronically checked in and ushered into the waiting room through a labyrinth of passages in Department 22. This visit was not as daunting as the very first, the place was familiar enough, buzzing with activity and full of medical personnel and the many who required their expertise.

When the nurse called my name, I heard another mangled version of it, a steady reading of the arrangement of vowels and consonants would have garnered applause for a brave attempt, but it was such that I had to mutter to the hearing of others, that name has been murdered again. However, there was no doubt that I was the patient being called to an examination room.

She offered to have another go at my name with my guidance, if she deigned to get much better, I doubt it could be achieved without a major surgical intervention. Even Brian’s attempts at Yoruba words and phrases bring such mirth, for the jollity he presents, we can overlook his incapacity.

Assessing the PSAs

When the urology nurse arrived some 15 minutes later, it became obvious that this was just an assessment meeting, one to determine how I was coping to the symptoms around radiotherapy and to enquire whether I needed additional support medically or mentally, and to answer any questions I might have.

It seemed they had lost the test results for the bloods taken on the eve of commencing radiotherapy when I attended the planning review in late August. She was using the readings presented in March last year, which on the surface suggested a considerable improvement, but I knew that there was a slight change in relation to the blood work done last week.

The Prostate-specific Antigen (PSA) result was slightly elevated but within range and higher than the result in August, but well below that which set us on this journey in March 2024. We agreed to have another meeting in four months rather than another six months, and I left to bask in the sunshine of beautiful South Manchester.

Lest I forget, I had a conversation with the Uber driver about Men’s things. I find that I am also being asked to share my experience; I might have to create slides to explain the intricacies of the prostate and the reasons for having early investigations and interventions on intimate issues.

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Men's things - XIII

Things we have to do

This morning, my second visit to The Christie, the largest single-site cancer centre in Europe and the first UK centre to be accredited as a comprehensive cancer centre. I know where I am going, Department 22, where many men with their partners and some women alone or with their own partners sit in one of four waiting rooms to be assessed, reviewed, or treated.

There have been offers to chaperone me to the hospital, from my neighbour, my friend, or a fellow steward from my church, but I have decided I am best able to cope with the conversations to be had alone. Obviously, if the opportunity were presented, Brian is definite and my best friend Kola, I would have welcomed to be with me through all this.

Taking the piss test

Having checked in, I was presented with a form, the International Prostate Symptom Score (I-PSS) which is a patient’s subjective rating of how they view their urinary health on a scale of 0 (Not at all) to 5 (Almost Always) on the various indicators of Incomplete Emptying, Frequency, Intermittency, Urgency, Weak Stream, Straining, and Nocturia.

Your total I-PSS score will suggest from your perception and feeling how the prostate gland is constricting the urine flow from your bladder to your urethra. My score fell within the range of mildly symptomatic though a bit higher than the score from two weeks ago.

I had already had a consultation on the option for a prostatectomy just over a fortnight ago, I was not enamoured about the aftereffects of surgery, it was all too unpleasant to countenance. Then getting to grips with the idea that something was manifesting inside you has left me somewhere between denial based on its invisibility and bafflement in terms of how to address it.

Just because you’re pissing poor

The consultant for the radiotherapy treatment option came in and introduced herself before asking how I came to know about the prostate cancer diagnosis. Walking her through each stage of testing and results leading to more investigations, she got a good idea of my understanding of the medical situation under discussion.

The I-PSS score then became the issue, and when I thought I might be able to avail myself of the breakthrough brachytherapy treatment for prostate cancer, I soon found out that I would not be eligible because of the treatment possibly complicating my urinary health. [Cancer Research UK: Brachytherapy for prostate cancer]

While I could appreciate no medical personnel would like to leave a patient worse off than they were before treatment, I felt that basing that decision on the subjective equivalent of a hunch when it would have been ideal to undergo urinary health analysis and tests was quite irregular.

Imagine being able to game the system because you had prior knowledge of adjusting the I-PSS score to suit the treatment you want even if the outcomes can be at best dubious and consequently debilitating.

Surely, there is a better way

I had multiple conversations with the consultant and support nurse when I was offered the external radiotherapy treatment that might stretch on for 20 low-to-medium dose sessions. Understandable to protect the functionality of my urinary system, which is under stress from an enlarged prostate, but that comes with other side effects. [Cancer Research UK: External beam radiotherapy for prostate cancer]

In all cases, however, the cancer will be removed totally. My inclination would be to opt for radiotherapy, but I will make no decision until I have had a conversation with my Holistic Needs Assessment team. The consultant twice said she knew I was going to read up on everything we had discussed, I can only wonder what could have given her that idea.

I am doing fine, I feel well, and I am quite hopeful and positive. Things would turn out right, I just need to get a handle on how I should pray. On my way out, I saw directions to the chaplaincy and prayer rooms, I found the chapel and sat in there for a while. As I was about to leave, the chaplains were coming out of their office for midday prayer, I was invited to join them, which I did and we had a moment of devotion, prayer, and reflection before I returned home.

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Men's things - XII

Gathering my thoughts

There is much to write about, the last couple of weeks, the continuation of my experience with Men’s things, the change of government in the UK, and the glorious two weeks I got to spend with Brian in the city we both love, Cape Town.

This blog however will be dedicated to the issue of Men’s things as my appreciation of the situation has both been given a sense of triumphalism borne of faith as much as putting into a hermetically sealed containment the foreboding and fear that greets cancer invading your body.

What I was not meant to see

Poring over and through the NHS app, there was a cache of documents that contained what I would think were exchanges about discovery and diagnosis between medical personnel that the uncurious would probably never have accessed.

I open each of the recently uploaded documents. While the indiscretion of the medical establishment meant I learnt of a diagnosis of adenocarcinoma of the prostate before I was officially informed, when I eventually met the urology consultant who also conducted the biopsy of my prostate gland, I was left with the impression that things need to be done. Still, I had time to consider the options and probabilities.

Blog - The note that crept in

Yet, appointments and engagements were coming in thick and fast despite my having intimated I was going away on holiday for just over two weeks. Within two days I had a phone call to set up an appointment at The Christie Hospital and by the time I got home in the evening, there was a letter confirming the appointment in my mailbox.

The word they never spoke

There was an inordinate urgency to the activities that concerned me. The cache of documents contained one word no one spoke to me, and I think out of some bedside manner of reducing the sense of alarm at relating their discovery to me. I was left reeling halfway through my holiday when I saw the word malignant, and there is nothing benign about it.

Today, I attended my first appointment at The Christie Hospital to discuss one of the treatment options with a consultant who would perform a Robot-Assisted Laparoscopic Prostatectomy (RALP), if I should choose that pathway after a further meeting about the radiotherapy option which I currently have quite limited information about.

The consultant was in no doubt about malignancy in the intermediate range with good outcomes even as the possible complications after a robotic procedure do not present a pleasant consideration in the immediate to near term.

The core consideration with trenchant immunosuppression is this needs to be dealt with sooner rather than later. A lifesaving matter for which one might be persuaded to pay less attention to masculinity, manliness, or virility for the sake of living.

Phew! That was daunting

His patter was confident, experienced, and competent with every indication that he plans to save the vicissitudes of the plumbing and mechanisms of that environment, but only after he has had the opportunity to look in there. It was daunting as much as it was interesting. He answered my questions in detail and addressed my concerns frankly.

Obviously, I still need to review everything I was told to understand what it entails; whether I am prepared for this ordeal and what it portends. Whilst understanding the seriousness of the condition I also believe that there is every possibility I do not have to go under the knife but have a medically confirmed miracle of healing.

What is critical is for all I have learnt about prostate cancer, I do not choose anything out of fear, anxiety, or the pressure to act. I need to keep my faith and belief strong; focused on the process and outcomes desired. It is the only mindset that guarantees that whatever happens, I will look back on this with a great testimony and a better story. By His stripes, I am healed. [BibleHub: Matthew 8:17, Isaiah 53:5, 1 Peter 2:24]

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Generational medicine involves talking

It is one of those unspoken things that even became the butt of a joke and some rather frank talk, though, I am not laughing now. Along the way, I have not acknowledged certain conditions that have appeared in the family, that medicine would consider factors indicative of a predilection to that condition.

This area of generational medical history is somewhat more developed in female medicine, like if breast cancer has been diagnosed in one member of the family with any degree of consanguinity, other females are advised to undergo tests and attend to a regular monitoring of their health to catch issues early. Some females even take radical precautionary measures if genetics suggest a susceptibility.

Reluctantly, it was during an eye test a few years ago that I volunteered the information that someone else in the family had glaucoma. I did not and do not, but that information alone meant from that time on, my eye tests were free on the NHS. When the patriarch did attribute certain chronic health issues to the prostate, I found myself dismissing the concern as that of a hypochondriac. [Refer to the first sentence of this blog, for the context.]

The cancer you can see

Prostate cancer is now an issue to deal with but differently from when I first had cancer some 15 years ago. Then with Kaposi’s sarcoma, I saw it appearing for almost a year like the slight irritation of Athlete’s foot that did not respond to any fungal treatments and then a discolouration that I ignored even as others where noticing that my health was beginning to deteriorate. I just put a brave face on things and continued as I always did.

Then, it became a painful weeping sore, at which point, it is was stupidity that took hold, I could weather this problem, I thought. Just bandage up the foot and walk, it was bearable enough until it became unbearable. When I finally went to see my doctor, if there was any alarm in her voice, she was as measured as she could be, as she said, “This is serious, I need to refer you.”

She probably had seen many presentations of late cases like mine before, her urgency coupled with care and understanding without any judgement, condescension, or condemnation was very helpful in accepting the seriousness of my condition. I could feel the cancer, I could see it too, it was utterly dreadful and thankfully something could be done about it.

Appreciating the graveness of my condition was exemplified in the statement of my consultant, just two weeks later. “We can treat this,” he said, “but it depends on how your body can take the treatment.” He continued. “If you can tolerate the treatment, you’ll be fine, if not, you probably have five weeks.” Five weeks! Life could have ended before the end of 2009.

A different prospect presents

With prostate cancer, everything is internal, the biopsies would suggest cancer has been detected very early and again something can be done about it. Apart from the results of the Prostate-Specific Antigen (PSA) test that led to the Digital Rectal Examination (DRE) suggesting an enlarged prostate and so, a multiparametric Magnetic Resonance Imaging (mpMRI) scan, and consequently an ultrasound-guided transperineal prostate biopsy, these are all internal medical indicators, I feel fine and well.

The weight of this situation is inferred in many other ways, as being added to the National Cancer Registry with a diagnosis and the initial prospect of treatment options that on the face of it have no particularly pleasant outcomes.

The invisibility of this invasion on my particularities and what might portend has me in a dalliance of disbelief and anxiety. I am steeling myself, not with substance abuse, but with the encouragement of the Word of God.

It is probably a kind of delayed shock too; I am here with my partner, and it is difficult to bring up the subject in the first instance and then begin to assess the situation. Yet, we must face up to what we intend the outcomes to be, first with myself and then together. It feels like we are hardly anywhere there.

Why I am writing about this

Any health condition is difficult to talk or write about, especially among men and even more so when it comes to men’s things. Black men are too macho for such talk.

I took the PSA test as an add-on blood test in trying to address an anaemic situation that I had tracked through two previous sets of results that were indicative of a deficiency in vitamin B12, iron, or folate (vitamin B9).

Years ago, I had folic acid deficiency anaemia and knowing that it is essential in binding other vital vitamins and minerals for good health, I wanted my doctor to address it, this has given rise to a series of Men’s things blogs.

One alarming statistic is, 1 in 4 black men will get prostate cancer in their lifetime. [Prostate Cancer UK], I don’t know if 1 in 100 or even 1 in 1,000 black men get the basic PSA test to forestall any indication of prostate activity for medical intervention. I reproduce the information from the Prostate Cancer UK website below:

You may also be more likely to get prostate cancer as a Black man if:

• you are aged 45 or over – and your risk increases as you get older
• your father or brother has had it
• your mother or sister has had breast cancer.

As for my journey, I already have a diagnosis and will avail myself of all medical expertise available strengthened by faith whatever the situation. We never quit living and living well.

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Men's things - X

Registers of choice and fate

Registers are interesting repositories of information indicating where you might belong, in a class, with a group, by choice or automatically. Your curiosity about registers is to determine what is stored about you and could correct incorrect or changed information.

It starts with birth registrations that include your full name, the names and occupations of your parents, when and where you were born, and the day the entry was placed in the register.

With life, you will probably have to register a birth, a marriage, and a death, the first and last is usually done by someone else. In school, you might end up on a register with a roll call to determine who is present or absent. As an adult where any semblance of a democracy exists, we might say a voters’ register.

Another register that matters to me is predicated on religious faith; being in the Lamb’s Book of Life having accepted Jesus Christ as my lord and Saviour. “Nothing evil will be allowed to enter, nor anyone who practices shameful idolatry and dishonesty—but only those whose names are written in the Lamb’s Book of Life.” (NLT) [BibleHub: Revelation 21:27]

Not this register at any time

In my meeting last week, it was said in passing and I heard the nurse right; it was one register to which I would never have wanted my name appended, and my utmost desire is to be taken off that register with the testimony of an all-clear having had a prior proof of a diagnosis.

Yes, there is a National Cancer Registration and Analysis Service and with a cancer diagnosis, the person is automatically registered, to track how cancer is managed nationally. You can seek with apparent difficulty to have your information removed by opting out. [CRUK: What is cancer registration?]

While I would rather not answer present if my name is called out of this register, I appreciate that when it comes to cancer treatment, the book of knowledge that is brought to bear on any new diagnosis comes from the long trail of studies, treatments, observations, and the lives of those who succumbed to the disease and the many who survived too.

Registered for better outcomes

That is why when in a consulting room, I welcome students to participate in the conversation. I engage them fully and try to paint a picture of how some of the wonders of progressive developments in medicine, have helped deal with disease that once was a life sentence but is manageable for some, curable for others, or controllable for many.

Sometimes, the prospects and options for dealing with men’s things when biopsies return positive results can be daunting. My decision is not to dwell on this but to encourage myself with messages about healing, living, wellness, and strength.

What I do with the knowledge of a cancer diagnosis is everything, and what I intend to have, is a better story than what any prognosis suggests. The first step to this is checking on your men’s things, going for the requisite tests, attending all appointments to discuss any issues and giving yourself the early fighting chance of knowing you have the choice of a possible cure.

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It is serious stuff

My decision to share my experience of what men face with prostate cancer is one I do not treat with any levity. You will read humour and maybe laugh at my expression; it does not take away from the seriousness of what a diagnosis of adenocarcinoma of the prostate might present.

Cancer is part of the human experience, it does not have to define your outlook as the end of the road of your existence, the greatest battle you will have is in your mind rather than in the prospects, the treatment, your recovery, and much else. If you believe at the receipt of such news that you will die, you quite likely would, if you choose that you will live, you have everything to live for.

Take the fine part

I speak as someone who 15 years ago received a cancer diagnosis with the prospect in the words of my consultant who had the weight of medical expertise on his side of his prognosis. He said, “We can treat this, but it depends on how your body can take the treatment, if you can tolerate it, you’ll be fine, otherwise, you probably have 5 weeks.”

I took the fine part and left the weeks part in the dust of history, and that has become my testimony of living and living well.

All with a friend

For my appointment to get the results of the transperineal prostate biopsy that was taken a month ago, I already had a good idea of the situation, the rest was to understand what they had observed towards the conclusions they would draw which would give me a handle on what I need to address.

We boarded the Uber taxicab, my friend had come as support because I was invited to bring someone to accompany me, when he called me to confirm, I was almost with the mind to tell him not to be too bothered, but he came over and I am glad for his support.

The driver asked where we were going and I said the Peter Mount Building, and it is ironic that a building where men are checked for men’s things, where manliness, masculinity, and patriarchy meet the humbling of disease has mount in the name. Surely, someone is having a joke at our expense.

Balls, nuts, very salty

He knew where the building was at as I told him, I had been there before because someone had a staplegun to my goolies, a month before. I guess I used goolies as a collective for everything pertaining to men’s things in that area. He asked if I still had them, I do, as my friend opined about how the man rumoured to only have one brought the world to ruin in World War II.

The driver half took the hint that he needed to check his men’s things and we all agreed that we do not talk freely enough about men’s things to have the prospect of early diagnoses if anything is awry. He said he was going to spend the rest of the day thinking of Akin’s nuts, I suggested he should try them salty. We all laughed until our sides ached. I was dressed as if I was going to a party.

Cut to the chase

Arriving quite early, the waiting room was busy, I took a seat and occupied myself with studying a map of the west of Manchester, I even found an error on the map. Soon, I was called into a consulting room where I showed the consultant that I was already aware, for over a week, of the information he was about to share, and that he should cut to the chase.

Blog - The note that crept in

Without dwelling on the point, we discussed what the future might be, from a medical perspective, and I thought of a different future blessed by what my belief grants me. Even as I positively attended to the information, I felt a little tremor in my hands, partly out of shock that you will naturally expect and at the same time, you must overwhelm the circumstances with a greater sense of personal and Godly hope.

Leaflets, pamphlets, and booklets later, we departed for a hearty brunch. Please, have a brief look and feel at your men’s things, the earlier you know, the better your prospects. I will continue to write about this. It is well with my soul and yours.

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Men's things - VIII

Interpreting bloods and dreams

In preparation for my biannual consultation today, I printed out sheaves of information for which in the analysis I would hope to have satisfactory, convincing, and comforting medical assessments of the situation. Like the kings of old, their dreams then and our blood results today, need interpretation. They hold some keys to the future.

The bloods have been telling wild stories of rage and range that has led me into many lairs of the medical establishment for observation, through inspections, radiography, biopsies, and another set of appointments and scheduled tests. It is tough if a king cannot remember what they dreamt, just as it is difficult if you cannot review your blood and other results to ask pertinent questions.

Silence is never an option

Having a long-term health condition you have effectively managed for about 15 years gives you some experience handling how doctors relay or disseminate information. You have to read the obvious and then read between the lines. In the UK, they are not as direct and forthcoming as our Dutch neighbours, they are reserved though a certain cohort is abrupt with a patrimonial bedside manner.

The Dutch are interventionists, they do not wait and see how things develop, they go after the issue with alacrity and immediacy. I recall my Dutch doctor saying, “This looks serious, I have to refer you.” She was already on the phone making appointments and speaking with urgency, I could be in no doubt about the seriousness of the situation. When I saw the professor, a few days later, he said, “We have a bed for you upstairs.” That was the beginning of an 18-night stay in the hospital in September 2009.

That compared to how three different health institutions vacillated for almost 3 years on a co-morbidity that could be treated and then I was put on new therapeutic drugs, but this was after I had a conversation along the lines of, “I am well aware of my mortality, what are you going to do about this co-morbidity?”

We have to talk about it

Regardless of who you are seeing, it is evident you must have a good understanding and grasp of your situation and give full voice to your concerns unrelentingly until you get satisfactory answers leading to hopefully, your desired outcomes.

Next week, I will be attending a follow-up consultation to discuss the results of the transperineal prostate biopsy I had just over 3 weeks ago. What has been scheduled has left me almost falling off my seat. There is a multidisciplinary team (MDT) with the qualifications of pelvic and urology along with the elephant in the room, who have set something up for the day after with no detail and this has an expiry of a year hence. As it comes under the topic of upcoming tests and procedures, I am left wondering, is this adopting a wait-and-see approach, or there is really nothing to see, and we are just in close monitoring?

You can bet I have many questions for all my follow-up consultations, I am not a tough customer, just one who knows what everyone should know for themselves. “It is my body first before it is your Guinea pig.” Selah!

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NB: I use bloods to mean blood tests.

Pissing from a great height

A turbulent bladder

And so, I felt the sudden urge to use the toilet and got up just as the air steward was walking up the aisle towards me, she was insistent I sit down, and I told her I had to go the toilet. She disapprovingly asked if it was urgent and without hesitation gave me a lecture on turbulence and the concern I should have for my safety.

I was between two minds of either telling her I had flown to South Africa 5 times last year or I had been flying since the age of 4 and I am now 54. Why bother? I sat down, crossed my legs and fingers hoping not to wet myself.

Checking on the piping

I appreciate she flies that route and probably has the training to handle severe turbulence, she was not tethered to anything and the aisles do not have railings. My being of a certain age was brought into stark reality by the Uber driver that took me to the airport.

His father had an obstruction in his urinary tract that resulted in him having a urostomy, the minor detail of him being 55 that I will celebrate in 10 days. He advised I should be seeing a urologist if I didn’t already have someone professional poking around there.

Without making too much of a thing about it, I would have hated to have to tell unnecessarily personal stories about a condition that requires an urgent dash to the loo. I suppose my shaving conceals that evidence of highlights on my beard acquired naturally, but let's not labour the point. I soon got to ease myself, a Nigerian colloquialism with emphasis on ease.

Awkward nature calls

When I got up the second time, I had the privilege of having the door to the lavatory opened for me without any discussion as to why, when, or what. Well into the morning before we landed, I needed another visit, and this time, all the toilets were occupied.

We had to queue up and one of the toilets seemed to be in use for long, an air steward opined that it might be a lady freshening up, I thought I saw a gentleman go in, but you never can tell nowadays, who is who. I declined an opinion with you never know.

I literally ran into the next available toilet, I wasn’t as pressed, but it was good humour as everyone laughed and when I was done, I was quite at ease, took my seat and wondered about pissing from a great height of 10 kilometres.