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]

A Gemini Notebook AI Podcast on this blog

AI-generated infographic on the blog content.

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.

#Coronavirus: Normalising peak Trumpian insanity

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A post shared by Akin Akintayo (@instaforakin) on Apr 24, 2020 at 6:57am PDT

Disinfecting the wisdom of Mar-a-Lago.

A cretinous ultracrepidarian who takes dilettantism to the level of terrifying sociopathy has me now caught on the violently raging horns of a dilemma. For out of the choice of disinfectants and cleaning products in my home, I counted 17 and chose 3.

Then I thought, should I make a cocktail of the three, have each one after the other in an order and dosage yet to be determined, or the efficacy of one might suffice as the scientists are being driven to distraction by wild assertions and snake oil remedies?

We now have it on good authority that with a bit of sun, well, ultraviolet light, and I must find my free sunbed usage vouchers and the injecting of disinfectants, I buy myself freedom from the Coronavirus with a quick and painful death for which the administration of an antidote would be futile. Venesection rather than ventilation, if ever a respite exists. [BBC News]

Swallow the stupid cleaner

Maybe, like the old lady who swallowed a fly and then swallowed many other predators to catch the fly, I might just swallow a string of Christmas lights so each predator can find their way to the prey, whilst the lights expose the hidden places of the Coronavirus in a game of peek-a-boo or catch the mouse.

[]

It beggars belief that a man able to utter such crass stupidity stands as the leader of the free world. What do I know? There are people I love and respect who believe he is anointed of God. I doubt the prophecy of the disinfectant just as that of hydroxychloroquine would be read as anything but a sign from above.

This death cult that puts Jim Jones to shame is an abomination to humanity, but the light we need to see better is lost to things reason, sight, hearing, or wisdom cannot deliver people into.

Don’t try it

Meanwhile, to my amazing good fortune, my cupboard has wrestled the disinfectants out of my hands, my gratitude goes to the door that did not yield to my fleeting folly.

Wipe it away, but don't leave it on your skin, definitely not in the eyes and anything you consider subcutaneously, intravenously or intramuscular; better know it is not prescribed by an idiot with a global bully platform.

Nigeria: Disabusing the false premises in our discourse

Hecklers on Twitter, I presume

Hardly had my blog of yesterday been up 10 minutes before I got a Tweet suggesting I had offered no specific solutions. Obviously, I was not surprised that this had come out of Twitter’s woodwork, probably a heckler attempting to interrupt me in the flow of debate or an assassin poised to gun me down.

Basically, at least from my point of view, I had never engaged this person before and unfortunately I have not carried over the real life response to this type of activity which is, if a stranger accosts me on the street playing familiar that I have no connection with, they usually get ignored especially if the hour is the witching hour – it was well past midnight on my clock.

I have decided to address the matters as premises at the top of this blog and push the background to the latter part of the blog.

Premise: Article suggests no specific solutions.

The blog was written as an analysis of a speech given, which appeared to signal resignation and confusion as to why the principal was in the job he was doing. We are well beyond analysis paralysis of the problems that affect Nigeria; it is expected that those who assume leadership of the country are versed in those issues and are ready to tackle them effectively, not lament on the impossibility of their circumstances.

Fundamentally, I am not the President, he is the President – it is a job that has the micro-management of scrutiny from everyone affected by his decisions, he has had the executive fiat to select his ministers and advisors – surely, they cannot all be bereft of ideas and solutions to take the country forward that we end up with a President who appears to have thrown in the towel.

Premise: This is not the time to coach Goodluck Jonathan to be a good President.

Whilst I am slightly annoyed with the idea that this man is learning on the job, I am much more annoyed that it appears he is not learning anything at all. However, if we are to live through another 39 months of this presidency, it calls for an intervention.

The Occupy Nigeria movement started off something, the House of Representatives probe on the Fuel Subsidy scheme appeared to uncover what might be a massive fraud, and it should become the watershed for this Presidency.

I dared say that since the vocation of my assailant was motivational, it was time for him to pen something about arresting a failing goal.

Goodluck Jonathan has a number of options; to honourably resign for the fact that the responsibility he has is overwhelming and beyond him, he be asked to step down for more competent hands or he pull himself up and get into the job of being a fine President – all of which are possible.

For all the promise that 2015 presents, we are in the now, the present and these present times require radical and effective action – performance is required, trying his best just not good enough – over to the excellence merchants, bring forth your success potions and get him drunk on the brew.

Premise: People are not hungry enough for change

I think Nigerians have taken enough insults from “know-it-alls”. Pressed with the need to survive, most just go about their business and seek comfort through extreme religious devotion with the hope that things change.

Obviously, a good deal of change will have to be led by the people, and it will not be easy, but we do not have to be reminded that we are caught in the grip of an unconscionable kakistocracy.

Premise: Most people who criticise Goodluck Jonathan have never led anything in their lives

That might be true, but does one have to have once been a leader to know whether they are properly led or not? This is a false premise and a fallacy. It is like saying, because we are not pilots, we have no right to complain if the flight is in a manoeuvre that appears to endanger the passengers.

In fact, I consider this argumentum ad hominem; there are many vantage points and perspectives on issues, and there is much that can be seen by those external to the circumstances whose input can at times help. It is like having someone who cannot drive being the eyes of the driver backing into a parking space – well, that premise has fallen apart already.

The fact is, many of us have assumed some sort of leadership in various ways, and how we have commandeered situations has determined either the success or the unfortunate failure of those endeavours – there are expectations of leadership, and where that leadership appears to be falling short, the qualification to criticise should never be predicated on the critic having been in that position before.

Premise: We all have to be change agents

“Change agent” for me has become a worn cliché; it is the jargon of purveyors of snake oil remedies. The main ingredient for change is knowledge and information, the possession of facts and a good analysis of issues. Some of that will include praise, criticism, fawning, excoriation and indifference.

Honest and frank observation must be key to furthering the discussion and debate whilst engaging other minds in the common goal for progress.

I am convinced a majority of Nigerians want change for the better, but each has to hear a message that appeals to their drive to effect change, and because personalities differ, there is no “one size fits all” approach to achieving that.

I have never been a “glass half full” person because I enjoy the good things of life; it all depends on the content. If the glass has fine wine, I will expect it to be half-empty, having drunk a bit, and I will be waiting for the sommelier to top it up. My glass will probably be half-full if it were bad wine – Go figure.

The background continues from the end of the second paragraph

However, on Twitter, I am much more mellow, quite accommodating and usually responsive, probably too good-natured and too much of an English gentleman for my liking.

So, I responded, the purpose of my blog was not written from the premise of “If I were President” but to ask that he begin to act like the President of the Federal Republic of Nigeria.

Meanwhile, I was reviewing the Twitter profile of my assailant, glad to know that he was a bit travelled and schooled; the long and short of the profile was as I have found on many Twitter profiles – Snake Oil Merchant on the Bleeding Obvious.

Motives in motivation

Don’t get me wrong, motivational speakers have a market, each person has a modicum of an inferiority complex that needs addressing, and there is enough pulp fiction to teach success, leadership and how to make money out of thin air – I have bought a few and junked much more.

However, you can hardly get the thickness of a Chinese wall between confidence tricksters that portend to have all the tricks to make money, especially ritualistic and religious ones and the more refined success merchants of the Un-impossible.

I knew I had my work cut out, mostly in disabusing the premises that govern their God complex of knowing why and how, having found ‘sheeple’ to eat their grass.

What my blog said

In the context of my blog, I doubt he had read more than what I wrote yesterday evening, considering I had at least covered this topic for over two years, and it was evident from my writing yesterday that I was expressing disappointment in someone who, at the onset, appeared to have promise.

In my view, President Jonathan definitely has rotten speechwriters, but speechwriters need to be inspired by the speechmaker to craft messages to convey a mood, a purpose or a situation. Both the speechwriters and the President have failed to inspire, and Nigerians, as passengers on a cruise ship about to be shipwrecked, are left confused as the captain and crew seem to have abandoned the ship long before the rescue has commenced.

The incredulity of it all is captured in speeches he made in January and February, which I reviewed in opinions published as blogs; the President was not pulling his weight and announcing to the world that he could not.

In my exasperation, I asked him to stop his lamentations and start to preside, I have had my fill of Nigerian politics but surely there must be better brains and more capable Nigerian hands to run that great country if the system is not warped against them for the benefit of the few who have mercilessly run that amazing country of great potential into the ground and we have to endure the sophistry of “glass half full” snake-oil success merchants who think the President’s best is the best Nigeria can have and all is well.

I am neither a coach nor a footballer, but I do not need to be told when a goal is scored and which side appears to be winning. The false premises have been debunked.

Blockbuster snake-oil anti-depressant drugs

Does everything on the bus

I remember riding on those big yellow buses with black stripes in Lagos decades ago where a woman with snake-oil remedies would peddle her wares in front of the bus with humour and fallacy bordering on being cajoled.

Gbogbonse (Yoruba - Translating to does everything or cures all) was supposed to do everything from dealing with tooth decay to making you of extremely amorous interest to the opposite sex.

In what looks like a game show, certain passengers on the bus offered to assist in revealing the instant qualities of the medicines, between the comical and the downright bizarre people opened their wallets and parted with cash for those wraps of powdered substance.

It could all well have been a con job; you had no receipts or recourse to challenge the efficacy of your snake-oil drug if it did not do everything.

Since no one knew any better, it all really looked like a replay of a story I read in secondary school about con-men who sold charcoal as sugar for tea in a village and made loads of money.

Snake-oil anti-depressants

So when I heard that anti-depressants are very much like catch-all remedies with snake-oil potency and have very little effect, I really was not surprised.

The substance of the study was that the reviewers took all research material, especially the unpublished ones (which probably show that we are being sold shit) and analysed all the results with the conclusion that only those who are really very ill need be prescribed anti-depressants.

It would appear these block-buster snake-oil mental drugs which have made Big-Pharma exceedingly rich are very much like being sold charcoal as sugar for tea.

In fact, it appears the placebos also give a commensurate therapeutic effect leading some experts to question the full sincerity of Big-Pharma when it comes to conducting clinical and drug research on drugs that their viability and stock price values depend on.

I have no time, have a pill

I can very well understand why these drugs have gained prominence, the doctors have no time to analyse the issues and causes of depression which require extensive therapy, so stick a pill in the hands of anyone who cannot maintain a smile for more than a second.

Before we come to the conclusion that these drugs do not work at all, they might just be the required Gbogbonse the doctor ordered for some, leaving Big-Pharma laughing all the way to the bank anyhow.

It makes the whole matter ever so depressing – meanwhile, the deafening cacophony continues to sound like - kerching! kerching!!