Anecdote or Evidence? A Cancer Survivor's View

Living with Cancer

As someone who has endured two life-threatening episodes of cancer, I do not trifle with the medical components of diagnosis, treatment, monitoring, and the continued assessment of my health and condition.

What is even more interesting to me as an individual is the range of expertise that pertains to each case: the skin cancer I had in 2009, the prostate cancer diagnosis of 2024, and the search for anomalies that prompted my visit to an otolaryngologist last Friday, owing to concerns about my changed voice.

Having had chemotherapy for the former and radiotherapy for the latter, I am well aware that these are highly specialised areas of cancer treatment, and that they must remain under the supervision and control of the experts.

My Body, My Terms

That is not to say I present myself as a sheep for the slaughter, handing myself to the medical establishment to do with my body whatever it wishes. Readers of my blogs on my personal health experiences will be aware of a trenchant assertion I have made many times before: "It is my body first, before it is your guinea pig."

My engagement, involvement, and consent are required once the interventions considered on the pathway to my recovery have been fully explained and detailed. I retain the option of a second opinion, though I have not yet needed to exercise it. I ask the questions that need answering, and I do so from the standpoint that I have autonomy, understanding, and decision-making authority in any process that concerns me.

What I would never do is deviate from qualified and established medical procedure, whether for prophylaxis, acute treatment, or maintenance therapy, on any condition that has been verifiably diagnosed.

The Lure of Snake Oil

That said, I do understand that some people have not been as fortunate as I have in securing the outcomes they want from the medical establishment, whether in pain management, effective treatments, the management of adverse side effects, or simply that plain understanding of human suffering which might persuade a doctor to be a little more empathetic when addressing their concerns.

This might well be the reason people resort to snake oil remedies and unvetted drugs peddled by illegal dispensaries or by merchants without pharmaceutical provenance. Yet whatever fantastic tales are told about a remedy, and whatever endorsements and anecdotes others might offer to suggest it has benefitted them, I cannot outsource the need for better medical outcomes to unregulated practitioners who are effectively exploiting the vulnerability of helpless people for profit, for fame, or for both.

Anecdote or Evidence?

Here lies the crux of it. Should the lived experience of unregulated remedies, with all its accompanying anecdotes and testimonials, matter more than the evidence of what the medical establishment prescribes? These remedies are not the product of any properly conducted clinical trial; their results are sentimental rather than proven. That, I concede, is open for debate, but it is a debate worth having honestly, and with a clear head, rather than one settled by the loudest or most moving story.

If a patient is genuinely not getting what they need from their doctor, in terms of listening, understanding, and acting to help, then the alternatives deserve proper consideration. A second opinion, recourse to a medical ombudsman, a formal appeal: these are the legitimate avenues, and these are the discussions we ought to be having. They keep the patient within the bounds of safety while still asserting the autonomy I hold so dear.

The Real Danger

And so the difficult question remains. How do you convince people that, no matter how fantastic the apparent results of snake oil remedies might seem, they endanger themselves first? There is the risk of outright poisoning. There is the danger of rendering their current regulated treatments ineffective. There is the very real possibility of complicating the conditions they already have to the point of being untreatable.

If I refuse to be the medical establishment's guinea pig, why on earth would I allow a stranger to sell me funny goods? This is the most baffling thing about the news story on the BBC, the one that leaves you asking: why? [BBC News: Dewormer and scabies drugs being sold as cancer treatments, BBC investigation finds]

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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.

Men's things - XI

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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Blog - Men's things - X

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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Men's things - IX

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.

Men's things - VII

Now I know the time

Only yesterday, I was writing about waiting for the next appointment to discuss the results of the adult histopathology labs ordered on my last visit after the transperineal prostate biopsy which leaves little room for comfort at the thought of it.

This morning, a new appointment arrived in my mailbox with a link to the hospital trust portal where you can review what is expected of you on your next visit.

It sheds no further detail apart from the name of the consultant I might be seeing and the option to bring a friend or relative along. The reliability of ‘friend’, the one who was to accompany me for the biopsy is questionable and no fault of his beyond the apparently recondite lack of facility.

Needing someone to lean on

I might have to inform my neighbour as she upbraided me sternly for not letting her know I was off to the hospital for a quite involved procedure.

Strangely, in preparation for the other visit, I was informed of the one-stop-shop service, I cannot recall the suggestion to bring someone along, it was loaded with possibilities without indicating any actualities, which makes it seem ominous that I might need a shoulder to lean on.

Obviously, I would be asked to produce a urine sample on demand or under duress before I see the consultant who trained in Manchester and holds several supervisory positions in clinical, educational, and training institutions. In my earlier feedback, I remonstrated about not being given the full details that informed the decision to do a biopsy until I asked questions and asked to see the MRI scans.

In my own time, at my own pace

I have resolved, whatever the outcome, I will take my time to decide on the next steps. For what it is worth, no one would want to lose the efficacy and function of the prostate gland and on one of those sessions where I heard a talk on prostate health, one of the speakers did say there is expertise to ensure it is not totally excised that you become a eunuch blessed with a protuberance.

That thought alone, I should banish from my mind. I already have my delayed biannual checkup scheduled for June and a week later, this one. Better to just think of the summer of love and the beauty of the flowers in fields and meadows. What bliss, what bliss indeed.

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The wait, the weight

You find yourself waiting for something, the bits taken out and being processed in histology to determine if there is a case for pathology.

Meanwhile, the men’s things are healing even as you peek at the effluent now and then to note if the colouration is gone or if there are whirls of foreignness visited on the nectar that I sure do not want to explain to anyone.

Issues like this can weigh on the mind but giving it space can distract you from living and the vicissitudes of life. There are things to get along with, and those are better concentrated on.

The pinch of a prick

Even though you do not know what to expect, it has been over a fortnight, and you are hoping for the best. The longer things are you begin to think they cannot agree there is much to be concerned about though I cannot say I will be amenable to another biopsy.

This is one thing you only want to happen once and never again. As I describe the experience as mellifluously, I doubt I am proselytising the necessity to have these things checked. It is just unpleasant, not an unbearably painful and intolerable thing.

Apart from the occasional urethral irritation, there is not much else to report. Until I am invited for a further conversation, I will not be bothered about it. It would appear there is no urgency and so on my part, there is no need for any anxiety.

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The aftereffects of the aftermath

I have put it down to the shock the body has felt to the nicking of bits down there with regards to the transperineal prostate biopsy I had on Tuesday. Nary a discomfort, just sometimes one of the awareness of vulnerability more than anything else.

There has been the occasional tinge of pain in the perineum, and the bloody discolouration in the urine continues, but not as much, it is in the clean-up with tissues that I might notice the obviousness. The quantity that is passed during the night has increased slightly, however, besides that, I feel well, and I have returned to doing the things I enjoy.

Amongst men I have discussed this with, there is a knowing, that no one talks about it, but I introduce it with humour that even the ladies might interject with their experiences of childbirth. It brought to mind again my first biopsy almost 15 years ago. A deep biopsy of the fungating tumours in my left foot, that 5 injections of Lidocaine did little to contain the feelings the nerves conveyed to my brain.

Blog - The looming abyss of a deep biopsy (September 2009)

Please take note for yourself

Even during the apparent start of this experience, an advocate has been won, I want to stand before a group of men to make them aware of a few things.

1. The need to have regular checkups.
2. Having an appreciation and knowledge of the results of their bloodwork, so they can ask good questions for useful answers.
3. Understanding when any result is out of range and immediately discussing this with their medical personnel for a pathway to remediation.
4. Speaking up for yourself regardless of the preponderance of medical expertise around you.
5. Pressing for the best outcomes whilst always seeking prompt action on the situation.
6. Follow through with the advice you get along with the additional tests suggested, remembering at the back of your mind that it is your body first before you are their Guinea pig. Seek a second opinion if you need more clarification or are unconvinced of the recommended pathway.
7. Do not leave anything to chance, act immediately and get full assurances and information about everything, if there is nothing else to be done, schedule your next screening, else, consider your treatment options and stick with the plan.

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Men’s showing

The number of ladies who have accosted me and commended my dressing would suggest our womenfolk do appreciate men being well turned out. The refrain I hear quite often as I heard this afternoon was, “I wish men dressed up more like you.”

My fashion; somewhat formal and neat still matters even as the casual and informal have become the trend. The common, while nice, does not stand out or attract notice, as how I have been greeted with compliments over the years. I blushingly thank them and go on my way.

Men’s issues

After my transperineal prostate biopsy on Tuesday, there are quite some people who would have expected me to stay at home yesterday, if not for the rest of the week. Brian, especially, was annoyed with me, when I called him yesterday morning as I boarded the tram. He put it down to stubbornness, a trait I do not recognise in myself, even after much reflection. [Manchester Urology: Transperineal Template Prostate biopsy]

The pain in the perineal area had subsided by Tuesday night, I have felt no further discomfort since then and there has been no further need for analgesics. However, since yesterday afternoon, I have had blood in my urine, an expected side effect of prostate biopsies that could last up to 10 days. This seems to happen in all cases. [The British Association of Urological Surgeons (BAUS): Transperineal Ultrasound-Guided Biopsies of the Prostate Gland (PDF)]

Then, for up to 6 weeks, one can expect to have blood in the semen, though, it is not supposed to affect one’s partners. The risk of infection with sepsis is lower with the transperineal approach than with the transrectal option. I fortunately do not have any symptoms of the other side effects that occur less frequently with patients.

Men’s things

Having this procedure under local anaesthetic is useful from the fact that your reaction to the nicking activity can prevent damage to the gland and associated organs. Under general anaesthesia, the doctor has no additional guidance beyond the ultrasound probe and their dexterity.

I used a public urinal earlier against my better judgement, a stream of yellow nectar interspersed with splashes of red, then at the end, in the shake out, more red than I could be comfortable with. I waited for the urinal to flush, but it did not clear everything. Someone would have observed my leaving the place and wondered what I had. [Note to self: Use the cubicle, next time.]

How do you throw up your hands and blurt out, "Alright, I had a prostate biopsy 2 days ago and that is one of the side effects?" Then, it might be an activist opportunity to remind menfolk that men’s things need checking up regularly and frequently. Experience can make an unexpected prophet of a cynic.

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Gibbering not to the wreck

I suppose it was in a flux of apprehension that I forgot my notes, notepad, and pen as I made for my early consultation. Fortunately, I had printed out the Canadian paper that gave a cautionary note on avoidable biopsies and that was my reference document as I boarded the luxury Uber BMW that dropped me off in the maze of the Manchester Royal Infirmary buildings unsure of where I needed to go, until a nurse gave me directions.

At the reception, I was asked to give a urine sample which might well have been under duress as I waited to see the consultant. He had decided I must have a Transperineal Prostate Biopsy, but I had questions, his approach was quite paternalistic even as he implied there was no pressure to go ahead with the biopsy. It was my decision to make, only if I had the essential data, for that purpose.

Decision time truncated

However, my PSA reading was high, increasing dramatically over a 7-week monitoring, the DRE (Digital Rectal Examination) suggested an enlarged but smooth prostate organ, the next thing I needed to know was the PI-RADS (Prostate Imaging Reporting and Data System) score pertaining to the mpMRI (multiparametric MRI) scan I had, just over two weeks before. On a scale of 1 to 5, with 1 being benign and 5 suggesting cancerous lesions, the assessment was 4. [Radiopaedia: PI-RADS]

With that conclusion, I guess I had no other alternative than to go ahead with the biopsy. No time to waste with that kind of assessment. I opted for the biopsy even as the life-or-death implications dawned on me with the sudden realisation of the loneliness that accompanies decisions like this. Your mortality becomes a smorgasbord of conflicting thoughts, you seek a resolution and a determination, with no time to reflect on the import of the moment.

Let’s do this thing

Soon, I was with the doctor who was to do the biopsy, his computer was acting up, and his pen not inking the paper. I lent him my pen that the receptionist had given me to take notes of the questions and points I needed to assess my understanding of the situation, and he explained through drawings what was to be done.

I still had the option not to go ahead with the biopsy, I asked to see the MRI scan, and he zeroed in on the T2 scan explaining the abnormalities on one side that presented the need for a biopsy. [Radiopaedia: Prostate MRI - T2 Weighted Imaging explained here.]

Then, I was prepped for the biopsy, I changed from shoes into my slippers and only had to take off my trousers and underwear to wear a hospital tunic gown.

Ouch! And much else

I swallowed 3 antibiotics Ciprofloxacin 250mg tablets and about 15 minutes later, I was invited into the biopsy room. splayed out as if to be examined by an obstetrician in the most vulnerable state in stirrups, a digital inspection, then an ultrasound probe, a cold antiseptic wipe, and an icy cold spray even so painfully close to beyond endurance, a light introduction to discomfort as I looked up at the scenery of a tropical beach, psychology that was good for the imagination, but I felt better closing my eyes.

I grimaced and let out a shriek, once or twice as the local anaesthetic was injected, I was probably given 6 injections.

Again, the ultrasound probe was inserted and then the doctor began taking the biopsies, I felt much unease and on two occasions pain, the biopsy needle sounded like a stapling gun, and that happened about 9 times.

All done for now

I did not feel at all woozy, and when it was done, my blood pressure was taken with what looked like an old mercury sphygmomanometer with a dial and a stethoscope; the memories of the traditional ways flooded back, before I was chaperoned back to the dressing room.

As I left the biopsy room, I was offered tea and biscuits. I had my first urination which was clear, dressed up and filled in a survey. Results in 2 to 3 weeks, an ordeal in some way and probably a lifesaving act of catching something early.

My advice is not to be too coy about men's things, better to be under medical supervision with knowledge of what needs to be done, than leaving it out of fear or machismo.

It may not be a rite of passage, but I was first at the urology department this morning, and then more chairs were set up, it was like the Church of the Prostate Screening, many men come to worship there, in silent contemplation of what life ahead might be. I had humour to offer that made some laugh. God help us all.

Reference

Diagnosis of prostate cancer: the implications and proper utilization of PSA and its variants; indications and use of MRI and biomarkers [Canadian Journal of Urology] February 2020. (PDF)

Blog - Men's things

Blog - Men's things - II

Men's things - II

Scanning human innards

The hospital is an interesting meeting place of humanity, where our frailty and infirmity meet with a strong will to live, compassion, care, and the understanding used to help us return to healthy and vibrant lives.

With X-rays came an advancement in medical research and observation, then ultrasound, magnetic resonance imaging (MRI), and computed tomography (CT) scans which all provide a non-intrusive view of our innards for experts to review and decide some plan of action; if their observations are indicative of an issue.

The Trafford General Hospital is the cradle of the NHS and where it was launched just over 75 years ago, arriving early on Saturday morning, I was met with a labyrinthine range of corridors, first to the main reception and then to the Radiology department, being the collective term for all these aspects of scanning.

In preparation for it

The aftermath of my bladder emptying requirement was to prepare for an MRI scan of men’s things. The call came in on Thursday evening and the speedy arrangement was once again, a bit unsettling. After a series of questions, I was cannulated as the scan was to be with contrast. The contrast agent which could have side effects is to help tissue and blood vessels show up more clearly.

Having changed into hospital tunics, one back to front and the other front to back, I mentioned my first MRI scan and the poor choice of music, Here Comes The Hot Stepper it was. The nurse offered me choices and I went to Bach and classical calming music, good effort and it was soothing.

Closed to noise and tightness

I was given earplugs, there must be a Nobel Prize for making the MRI scanner silent, this is beyond the one already given for the discovery of MRI. The cannula was connected, I was strapped down around my midriff and the music, the scanning and the noise began. I closed my eyes trying not to think about being in a tube of claustrophobic angst, it did not bother me.

Time passed quickly and I was pulled out and asked to wait for 15 minutes; first to remove the cannula and to observe any contrast agent side effects. I was soon on my way home, with much time still left of the Saturday morning. The results will form part of the review to be had soon.

Other blogs

Blog - Hotstepping into a magnetic resonance experience

Blog - Men's things

58 revolutions around the sun

It’s a miracle baby

As times come and go, I realise I am a living miracle from the moment I took my first breath, with all the goodness and favour that has greeted me every waking day that has become the story of my life.

I am of all men greatly blessed, highly favoured, and extremely fortunate. Unexpectedly born at 26 and a half weeks at a time when it could have been decided I could not survive, even as the hospital in which I was born did not have the means to sustain me. I was taken to a hospital in another city about 25 miles away where I received the best care medicine could offer at the time.

An outlier to the convention

As a man of faith, every day whether acknowledged or not has had the hand of God sheltering and keeping me, through literally impossible situations, I can hardly count the innumerable blessings.

At another time, I was not meant to see my 44^th birthday, the prognosis gave me 5 weeks when the medical team in charge of my care made a diagnosis giving me the facts of the options before me. The good news depended on me tolerating the gruelling and debilitating chemotherapy for which I would be rewarded with more time.

Even medicine would prove me an outlier and the condition I had from studies at that time suggested the people did not last a decade. There were times I felt like a clock was ticking, it probably is the reason I hate the sound of ticking clocks. What was I learning from Captain James Hook in Peter Pan?

Living to live and thrive

Then, how have I measured myself against others thinking I will be limited by the experience of others when I was to live the life I am given to live and prosper. It is easy to live as if one were dying, yet there is a better story to live as one living and thriving regardless of situation or circumstance.

And here we are today, 58 revolutions around the sun, nothing I could have predicted or expected, it is all the grace of God, the prayers of many, the unstinting support of some, and the amazing love of Brian who plants a smile and grin that never wanes on my face.

I am full of gratitude to see this day and I believe there are many more amazing celebrations to come. In the stories I will write I cannot even begin to imagine the form or frame of words to narrate the miracles that astound as each day passes into milestones for which the praises to God will fill the mouths of many who love goodness, happiness, success, and joy.

This is my happy birthday.

World AIDS Day 2022

Beyond a fateful diagnosis

This is my 20^th World AIDS Day since my HIV positive diagnosis and I cannot tell for how long I might have contracted the virus before it was confirmed after a very developed and stringent testing regime, what matters is with a medical verification of my status, certain things needed to change.

I guess what changed the most in my life was my outlook between the idea that I might not have much time left to doing everything possible to enjoy whatever time I am fortunate to have to tell a better story beyond diagnosis.

Yet, living with HIV brought both adventure and the mundane, the mundane as in as the virus ravaged my body, I ignored what the consequences might be as year after year others noticed my apparently failing health.

The onset of AIDS

It was in the 7^th year of my diagnosis that things took a turn for the worse, early in year, much as I was in my professional peak, a dark brownish stain appeared under my left sole, something I dismissed as athlete’s foot and on inspection by a doctor in Spain, never came to much of a comment. Yet, I was conscious enough to want to hide expanding dark mark when I was reclining in a deck chair by the pool, because someone did come to ask about it.

By Spring, my energy levels were down, I spent Easter in Geneva with my best friend after which I was back on the job market. Then by mid-Summer I had a bout of shingles that came and went in 2 weeks with the blessing of no post-hepatic neuralgia, though my foot was now becoming a problem.

What was manifesting in August was a painful sore that I could not walk without my foot being heavily bandaged and no amount of painkillers could assuage the pain, I tested the limits of my ability to endure pain. I had developed full-blown AIDS presenting as Kaposi’s sarcoma, a virulent skin cancer and it was screaming on my left foot.

The legacy of the early sufferers

My gratitude and good fortune for the sadness and the celebration of World AIDS Day comes from the fact that many young men perished because of AIDS and the lack of help to treat the diseases that came as a result of contracting the Human Immunodeficiency Virus (HIV), many also had the painful lesions of Kaposi’s sarcoma leading to fully emaciated and painful deaths.

When I went into hospital delirious in pain after my doctor in the Netherlands instituted emergency measures to get me seen by specialists because on the first sight of my foot, she said, “This looks serious, I need to refer you.” The professor who came down to see me immediately said, “We have a bed for you upstairs.”

I was at the point where advancements in HIV medicine gave the consultant the confidence that medicine did not have a decade before, because he said, “We can treat this, but it depends on how you can take the treatment.” The prognosis was I would be fine if I could tolerate the treatment, or I will be gone in 5 weeks if I could not.

Indeed, my survival comes down to the many whose treatments that variously failed but redounded to the body of knowledge and expertise that grew over decades, I am one of the fortunate ones who came back from the looking death in the face to live and thrive. It always gives me pleasure to interact with medical students when they attend my biannual consultations, because I hope that in some small way, I inspire them about the power and miracle of progressive medicine that can treat diseases that were once untreatable.

On celebrating World AIDS Day

This is what World AIDS Day means to me, the need to know your status and embrace the result with promptly accessing medical options available. In 2002, you were not immediately put on antiretrovirals, even in 2005, they were thinking of treating a Vitamin B deficiency rather than the virus.

World AIDS Day is about everyone affected and infected, privately or publicly, silently or in advocacy, proudly or stigmatised, we need to come out and bring an end to the scourge of HIV whilst making the very efficacious treatments freely available to everyone touched by HIV. I am also grateful to the health services in The Netherlands and the UK, the consultants, doctors, nurses and personnel who have devoted time and resources to seeing the end of HIV.

And where would I be without the support of friends, family, neighbours, lovers, and the wider community that blessed me with their humanity and generosity, to them all, I owe a debt of unstinting gratitude. I am blessed.

Here’s to World AIDS Day 2022 because there is still much to be done and I hope that when the work is complete, it would be celebrated in memory of the many who sacrificed life and being to bring an end to HIV and AIDS.