Black History Month - Reclaiming Narratives on Men's things

An invitation to talk

A few weeks ago, during my radiotherapy treatment, I was invited to attend a Black History Month event and a panel of discussants. This is something I would have willingly done, but I could not with the side effects I was experiencing guarantee I could attend, and sitting on a panel was ambitious at best.

When Saturday came, I felt I had the strength to grace the occasion. My view then was that they had a substantive panellist with me as an alternate. I sat in the back of the meeting room, nursing the issues of comfort and discomfort as the proceedings progressed. I had tacitly agreed to join the discussion if I had the energy, and my voice was amplified.

Let’s talk men’s things

The theme for Black History Month 2024 is “Reclaiming Narratives,” marking the shift towards recognising and correcting the narratives of Black history and culture. I do not think they expected the direction in which I thought to reclaim our narrative.

After my introduction, I raised the issue of black men being comfortable talking about “Men’s things”, their sexual health, primarily, prostate cancer, but testicular cancer and erectile dysfunction are such intimate issues too along with sexuality, that we should not feel emasculated when those topics are discussed as they matter to our health, wellbeing, life, and happiness.

Culturally, broaching this subject in many communities belies a loss of masculinity and vulnerability where we should be projecting strength. Yet, strength is in accepting the vicissitudes of our humanity, openly, honestly, and confidently creating the conversations that help others seek essential help to deal with issues long before nothing can be done for them.

Talking empowers us all

Part of me felt I had hijacked the conversation but the questions, interest, engagement, and feedback suggested it was a necessary topic to discuss as I took the time even with my waning voice to explain in sufficient detail the risk factors and the essential tests, along with signposting material they could read to gain knowledge about taking control of intimate health issues.

To that end, I compiled all the blogs I had written about Men’s things and Photons on the Prostate to continue the discussion from this blog. Men's things - Prostate Cancer blogs

The narrative we need to reclaim is black men boldly discussing men’s things and helping each other to achieve the best outcomes for our sexual health, supporting and strengthening each other through adversity and increasing the talent pool of advocacy out of interest or experience to give more black men the tools to live healthy and well.

Men's things - Prostate Cancer blogs

A journey of discovery

Over the last 7 months, I have written a series of blogs about my journey to the discovery of malignant prostate cancer and the consequent treatment with radiotherapy along with the attendant side effects that I hope I am managing well.

I have compiled a range of blogs and annotated each to highlight how I navigated the issues that arose through each diagnostic and treatment stage.

The Men’s things blogs cover issues we need to be talking about and in this case, it is the prostate gland, the Photons on the Prostate blogs are of my experience having chosen radical radiotherapy for the treatment of prostate cancer.

Take the test

The need to have an eye on your prostate health is critical and you can start with the International Prostate Symptom Score (IPSS) Calculator. I did not know I had an enlarged prostate; I have always strained to pee and when it started, it was a weak stream with a feeling my bladder was not emptying completely.

It took a PSA test to determine my prostate was enlarged, that is always the first step, but your risk is heightened if you are a black man over 45, have had a brother or father with prostate cancer, or have had a sister or mother with breast cancer.

The technical terms are explained, linked, or illustrated in the blogs and I hope you find the information useful.

Men's things – Results of my PSA test have led to a Digital Rectal Examination; my doctor is concerned, and I received a referral.

Men's things - II – Taking a multiparametric MRI scan of my prostate gland.

Men's things - III – Why must I have a prostate biopsy? You have a PI-RADS score of 4.

Men's things - IV – Bear the pain under local anaesthetic as your reaction is informative.

Men's things - V – Some pain in the perineum, blood in the urine, and a few notes to self.

Men's things - VI – The wait can be a weight on your mind.

Men's things - VII – ‘Bring a friend’, suggests you might get some interesting news.

Men's things - VIII – Understanding your test results is crucial to having a voice in your health outcomes.

Men's things - IX – You have been diagnosed with adenocarcinoma of the prostate, I knew that already

Men's things - X – Finding yourself on a national cancer register after a cancer diagnosis.

Men's things - XI – Understanding the risk factors with prostate cancer in black men.

Men's things - XII – The daunting prospect of radical prostatectomy, not pleasant.

Men's things - XIII – Discussing the options for radical radiotherapy of the prostate.

Men's things - XIV – Holistic Needs Assessment managed by the Macmillan Cancer Support charity.

Men's things - XV – It is always your body first before it is their guinea pig, my journey of discovery.

Men's things - XVI – Centring the patient in the medical conversation, the Predict Prostate website and the ProtecT study.

Men's things - XVII – Radiotherapy planning session, a CT scan and my first tattoos.

Men's things - XVIII – Creating the right mindset for a diagnosis of malignant prostate cancer; faith.

Men's things - XIX – Image Guided Radiotherapy (IGRT) and the first experience.

Photons on the Prostate - I – Taking the first session of radiotherapy for prostate cancer.

Photons on the Prostate - II – Understanding the protocols and arrangements around treatment.

Photons on the Prostate - III – Independence, vulnerability, and seeking help during illness.

Photons on the Prostate - IV – Radiotherapy; how the linear accelerator works – YouTube video.

Photons on the Prostate - V – Dealing with the side effects of radiotherapy; tolerating fatigue.

Men's things - XX – Getting a sick note and the need to be conversant of your medical situation.

Photons on the Prostate - VI – At the halfway point, hypofractionated radiotherapy is explained.

Photons on the Prostate - VII – Reflecting on independent arrangements for out-patient attendance.

Photons on the Prostate - VIII – Dealing with the side effects of radiotherapy; fatigue.

Men's things - XXI – The International Prostate Symptom Score (IPSS) Calculator.

Photons on the Prostate - IX – Ringing the bell at the end of twenty radiotherapy sessions.

Photons on the Prostate - X – Dealing with the side effects of radiotherapy; the waterworks.

Photons on the Prostate - X

The faulty waterworks

Just a week after I concluded radiotherapy for malignant prostate cancer, I was back at Christie Hospital to pick up an urgent prescription. The lingering side effects of radiotherapy are the fatigue that I have managed to varying degrees dealing with insomnia, strength, and ambulatory performance. It is the bladder and urinary issues that present the greater challenge and as one nurse politely put it, my waterworks.

The issue I described of having a kettle filling my urinary tract with boiling piss was described to my understanding by a cancer support nurse yesterday. Besides the prostate inflammation that could constrict the urinary tract, radiotherapy could also irritate and inflame the inner lining of the tract and that is what I am feeling as a burning sensation anytime I have the urgency to pee and when the bladder does not fully empty after any attempt to pee.

Hotline for hot piss

By last night, it was beyond tolerable and quite unbearable that I had to call the Christie Hotline for help. After describing the symptoms and the utter discomfort, I was given some advice to take painkillers which are generally anti-inflammatory too, that seemed to ease the discomfort and even eliminate the possibility of a urinary tract infection.

My notes were forwarded to a doctor who called this morning to assess my condition and prescribe some medication and palliatives to help with the waterworks.

Two things might also become an impediment to going out: the sudden urgency to pass water and the frequency at which that happens. At the hospital, in the space of an hour, I visited the toilet thrice.

Vulnerable in stride

Then, on my way home, I got the bus and when I alighted, I was about 300 metres from home when I thought I was going to wet myself. I was not going to make it home on time just as I saw a young man entering a student apartment block and I appealed to him that I had a toilet emergency. He ushered me to the disabled toilet, and I could not wait to get the business done. The compelling urge is literally impossible to control.

Before my treatment, I could hold water for hours, now, it is a matter of minutes that I have ordered a Just Can’t Wait Toilet card that hopefully grants sympathetic access to toilets when I am out and about. Along with that, I have ordered a Radar key to give access to public disabled toilets.

Coming to terms with the fact that the diagnosis, treatment, and ensuing symptoms together constitute a disability is something I am having some difficulty with, but the truth is these are vulnerabilities that would subside. For the duration of the issues, one should avail oneself of all the help available to ease the discomforts and pain.

Blog - Photons on the Prostate - IX

Blog - Men's things

Thought Picnic: Resilience in adversity

Rich in experiences

As I stood outside my apartment a few weeks ago waiting to be given a lift to one of my radiotherapy sessions, a man I did not immediately recognise approached me and introduced himself as one of the estate agents who used to manage my property. He asked how I was, and a short conversation ensued.

I informed him as my voice was weak that I was taking treatment for prostate cancer, and he must have wondered how much misfortune can befall a man? For a time, I was out of work and then found work that was essentially a zero-hours contract, highly paid, but no hours to book, for I was assigned no projects.

Being behind on my rent, the estate agent did everything to lure me out of my sense of independence to seek entitlements from the state. It was humbling but I put myself into it, attended every appointment, and dressed up properly in a suit and tie that they considered taking a picture of me as an example of how to appear at the job centre.

Keeping on in crisis

Things were tight, but the little that came in helped to keep a roof over my head even with the threat of ejection looming sometimes too close for comfort. I kept looking forward, availing myself of opportunities to enter gainful employment along with the possible transition from being self-employed after over 20 years to becoming an employee.

For months, I was putting in so many applications for jobs with no responses, my resume had many iterations and editions, even as experts opined that my original profile was good enough. In the meantime, I had suffered a crisis of confidence and unfortunately, some of whom I hoped to buoy me up in those low times also began to lose faith in me.

My partner and my best friend were the constant cheerleaders through these dark times and sadly if one were to be honest, I could not even rely on my mother for that kind of support. To those whose close relationship in bad times became evidently transactional, they were not heard from because what they relied on no more supplied the largesse they had grown used to.

Be relentless regardless

It was tough but I was unbowed, showed up where I needed to, was enthusiastic about things I never gave my mind to, tried things I never considered doing before and began to find a new sense of purpose, drive, and direction. I owe that spirit of resilience to my faith, many examples impactful or basic, from sometimes uncommon places and people.

You can post six hundred applications for jobs, but you must keep posting until you get one and it is just one where someone sees a lot more in your profile than pertains and is ready to find out how interesting a person you are. Indeed, I did post that many applications and had to document them as part of my commitments that secured my state entitlements. You cannot relent.

Live your human story well

Adversity will always be part of man's experience; it becomes part of our stories, but the difference is in how we face such circumstances to determine how we are affected by them. Whatever the estate agent might have thought about my situation, I was living it and decidedly dealing with it.

Cancer was discovered, treatments discussed, and radiotherapy was selected. Get on with it and look back at it in time as part of your human story.

I count my blessings and refuse to dwell on the problems, they will pass, and much will be learnt in understanding where to place one’s confidence and trust. “Many are the afflictions of the righteous: but the LORD delivereth him out of them all.” [Bible Hub: Psalm 34:19 (NLT)]

Sundays of willing to will

Missing from church

Last Sunday, I had a lie-in. It would have been one church service to attend as it represented the beginning of the judicial year, a civic service with the High Sheriff of Manchester being the main celebrant ahead of the judges, lawyers, officers and officials of the law, the civil service, the mayoralty, along with county and council officials.

As a church steward, apart from ushering in the congregants, some lead the officials in procession at the beginning and end of the service. I would have been no use in the setup as I would not have had the strength out of fatigue and other discomforts.

Selling funny remedies

Yesterday, I was up quite early and had at first wondered if I would attend the sung eucharist at church, but with the force of will over the concerns about my ability, I got up, showered, dressed up and hailed an Uber taxicab to take me to church.

As my voice was in the spectral end of waned, as I explained to the driver the apparent predicament, I was regaled with a tale of a black Frenchman who had herbal cures for cancer. A friend of his had refused medical treatment and shelled out about £1,500 for these medicinal goods that were packaged in something to make you draw a sharp breath that he had been conned.

It transpired that his friend having cut out meat, changed his diet and ingested these snake oil concoctions on presenting himself for new medical tests had not eradicated prostate cancer, however, it seemed contained and stable for years after, and his doctor advised he continued whatever was helping this non-progression of the cancer.

Making the medical case

All through, I had my misgivings, no effective medicine for prostate cancer sits in a backwater grotto to be purveyed on YouTube channels where the spirit of hypochondria can so easily possess you and you believe you have any ailment that presents without an effective diagnosis.

I took his word for it but made the case that if medical science has clearly diagnosed a condition, medical science must have the last say on whether that condition persists or has been cured. Whatever route you choose to procure a cure is left to you by miraculous intervention, medical treatment, or some herbal remedy that seems efficacious even if not subject to any peer review, just the positive reviews of patrons of that service.

The more pertinent issue is that we should all get tested and be assured of our situation, knowing there is nothing to worry about or that something demands immediate attention.

Easy does it

I arrived at church to a hearty welcome from everyone as I took my seat and well, sat through the service except for the reading of the gospel and when I went for communion. In the end, I was offered decaffeinated coffee, and chatted to other friends, before I was given a lift back home.

I realise there is a lot I desire to do, but much of it cannot be done because the strength and capacity are not there. Sometimes, it is just the thought of a journey that wearies me that my better judgement is to abort the idea. The side effects are still a bother, it might take a while to fully recover.

The Village Church I did not even bother to attend, though, I must send them a note about the end of my treatment and my recuperation.

Thought Picnic: Between fight and plight

In the flight of fight

I have always been ambivalent about the idea of battling cancer, especially when it is said that someone lost their battle to cancer as if they were not fighting enough to defeat the enemy that has both violated and invaded their bodies.

On completing my treatment course of radiotherapy yesterday, I received many congratulations, and this is not because I have passed a test or navigated some difficult terrain to emerge the winner of some prize, I was taking treatment that seemed harmless, but the side effects are quite unpleasant.

Thinking back to fifteen years ago when the consultant offered the prospect of just five weeks to live or thrive if I could tolerate the treatment, I learnt something about dealing with infirmity and cancer, in particular.

All contribute to it

Advances in medical science learnt by experts taught to students, and with patients in the centre of the whole situation have contributed to the body of knowledge that informs how cancer is treated. Both those who survived and those who died in the record of their experiences redound to this compendium of knowledge that is delivered as expertise when we consult with medical experts.

In my view, there are no winners or losers, no soldiers or deserters, some like me, who have been fortunate, others not as much, and that is a sad story in the human narrative. Advances in science seek to reduce the number of the less fortunate and everything we can do to eradicate all forms of cancer by prevention or treatment must have us all in that endeavour.

I take the congratulations with gratitude because they are wishing me well. Sometimes, the fight with cancer is more one of a mindset about it, rather than of some pugilistic fight to exhaustion without rules to the bout.

Just as being fortunate

The greater fighting chance we have with cancer is to have caught it early and be presented with a menu of options for treatment leading to good outcomes without too much pain, suffering, or discomfort.

Having encountered cancer twice and been given the best medical science can offer to treat it is indeed fortunate, in the Netherlands fifteen years ago and in the United Kingdom now. Our model of social medicine which is free and accessible to everyone at the point of need, is the epitome of human civilisation that could pass for a human right.

I am fortunate to be European because anywhere else would have cost a fortune to diagnose and treat cancer, some running out of money before anything effective could be done. Sometimes, we do not realise how precious health is until it is touched by infirmity, there but for the grace of God go I.

Photons on the Prostate - IX

Time shows up again

It never really occurred to me until a few minutes ago that fifteen years ago today, I was discharged from the hospital after an eighteen-night stay for a myriad of health complications manifesting in skin cancer, that ride back home to the security of my castle was the beginning of seeing life beyond cancer.

This afternoon, I completed 20 sessions of hypofractionated radiotherapy for malignant prostate cancer, I left the suite to ring the bell thrice to signal once again, life beyond a second and different episode of cancer.

“It was a bell of hope and expectation to us, the sound of enduring survival of the human spirit, and the herald of the beginning of the rest of the ringers' lives, free of cancer and thriving after cancer.” [Photons on the Prostate - IV]

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Appreciation and consideration

For this last day, I had planned to thank the receptionists and the multidisciplinary team separately with cards and gifts, I felt they were professional, friendly, considerate, caring, engaging, prompt to act, and exhibited good bedside manner understanding the kinds of human infirmity and vulnerability we all face. A little gesture of appreciation goes a long way.

Having discussed the issues with my prostate behaving like a kettle on the boil, they arranged for palliative medication to address this discomfort. The pharmacy had a 30-minute wait time for service requests; after my radiotherapy, I had forgotten to pick up my prescription, I was already halfway home when I remembered and returned to the hospital to retrieve my goods.

The last radiotherapy session was uneventful; however, I was given advice on how to manage symptoms, calling the hotline, which is open 24/7, and the possible follow-up appointment post-treatment in about six weeks.

In the aftermath of all this

I wished everyone good luck as I left the radiotherapy suites, 20 weekdays that began 4 weeks ago, quite daunting a prospect and how the passage of time helps pale into insignificance. I have not acquired a taste for still water, I am so looking forward to feeling that fizz on my tongue.

I still have dishwater (decaffeinated) Earl Grey tea and Nescafe instant coffee that I might drink in remembrance of this episode in my life, God forfend this becomes a habit. Then, I stripped off the transparent Tegaderm film dressings that protected the three tattoos I acquired for positioning me on the gurney of the linear accelerator. You might get marked by cancer; you do not have to be defined by it.

Photons on the Prostate blogs

Blog - Photons on the Prostate - VIII

Blog - Photons on the Prostate - VII

Blog - Photons on the Prostate - VI

Blog - Photons on the Prostate - V

Blog - Photons on the Prostate - IV

Blog - Photons on the Prostate - III

Blog - Photons on the Prostate - II

Blog - Photons on the Prostate - I

Blog - Men's things