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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Crumbs In Our Wake

Crumbs in Our Wake

As we walk the quiet streets of our cities in the assumed isolation of our seemingly contented spaces, we so easily and unknowingly leave crumbs of who and what we are in our wake.

Others, like pigeons of the air, swoop down and peck away at those crumbs, a meal provided by the divine hand of providence, in whom we can scarcely believe cares enough for us, even when neither bird nor beast worries, for provision does indeed come.

These crumbs tell other stories, the ones we cannot let go of because unanswered questions remain. It is unlikely we would ever get the opportunity to satisfy the curiosity that one strange encounter brings into view, even as we try to mind our own business.

A Chance Encounter

Much earlier today, a lady was coming towards me, pushing a pram. I presumed she was a grandmother, and not a walking miracle of Sarah begetting Isaac after the incredulity of her laughter at the idea that she could still bear a child.

She was adjusting a paper windmill, or pinwheel, and for that alone the expectation was that a child, reclined in the pram, was being entertained or distracted with the novelty of a spinning attraction. Had small talk ensued, it would have been about seeing a pleasantly focused, smiling toddler, whilst commending the grandmother for keeping the child at peace.

The Doll in the Pram

As I walked past, I looked to see a grinning face, teeth showing with the gaiety of the widest smile possible, even legs being thrown up in the air in acknowledgement of the object positioned for their attention. Nothing of the sort; the passenger in the ornate perambulator was a doll, unmistakably the plastic rigidity of a lifeless presence that only a doll could muster.

There was no need for a double take, but one did vacillate between concern and sympathy. Concern that this story was one of mental illness brought into the public sphere; the wish for a child now given over to the taking of a doll for an outing, with all the presence of mind to furnish that doll with the trimmings that might accompany a child.

Sympathy and Grace

Then came sympathy for whatever the tragic story might be, such as the loss of a grandchild remembered daily in this sad display of grief that I had now uncomfortably witnessed. A daily upset for her, and a lingering one for me, for how do you ask the pertinent questions?

There might be another angle, though, beyond concern or sympathy, this being eccentricity, and we all have some of that in us in different measures. Whether this be suffering expressed so vividly, or an expression too quickly misunderstood, the reality of a person's private world is not that private when brought into the public sphere.

A Good Samaritan Nature

Yet even this might not begin to cover the spectrum of life experiences that became that momentary observation, for any person's story is barely told in a brief encounter. Rather, what we know in part might define them too narrowly in comparison to who they really are.

And if we were to ignore the things we see, we could, in that very mindset, miss the moment when someone in distress could do with our Good Samaritan nature and our help.

Yet, in the crumbs that the pigeons do get to feed on, is a complete meal not better than manna, without a care for what tomorrow brings? There, but for the grace of God, go we, so that whatever story we tell might be a blessing to another.

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Long Enough, Short Enough: A Blog Learns to Speak

Twenty-Three Years On

The husbandry of a blog in its 23^rd year might leave one wondering whether there is a need to radically change its format and workings, or to provide other means of engagement with an audience whose attention is now grabbed by whatever suits these changing times.

When reviewing this issue, I have landed on the premise that textual expression still matters. I hope my blogs, as I have often suggested, follow the judgement of a good seamstress making a skirt: it should be long enough to cover the detail, whilst short enough to keep the interest.

I think I read that quip in the Reader's Digest, over 40 years ago, and it still matters. In terms of the format and appearance of my blogs, I have essentially maintained the same design for as long as I can remember.

A New Development

However, in 2026, I came upon an interesting development. On my Android phone, using the Google Chrome browser, there was an option to "Listen to this page". What you get is not a verbatim readout of the page, but an AI-generated summary, lasting up to 90 seconds.

For one blog I wrote at the end of January, I could not get an AI-generated summary; rather, it was a Read Aloud of the blog, word for word. I was not happy with that, and I could not find any mechanism to change it from a verbatim readout to an AI-generated précis.

It then occurred to me that, months ago, when working with Google NotebookLM, as it was known until earlier in July, the month we are now closing out, when it became Gemini Notebook, you could paste the URL of a source into a notebook and then ask for an Audio Overview.

The Audio Overview

In its default state, the Audio Overview is a Deep Dive: an AI-generated discussion between two people, one with a male voice and one with a female voice, on the content of the source. It offers explanation and exposition of the material to give a considered and thoughtful review of, in this case, the blog I have posted as a source.

This follows a podcast format, and you have options for a short version or one of much longer duration, with further formats beyond the Deep Dive, namely Brief, Critique, or Debate. I have plumped for the mid-range Deep Dive, which can run anywhere from 15 to 25 minutes.

To my mind, this is a judicious use of time: long enough to explore a blog's topics exhaustively, yet the podcast rarely rambles into the inconsequential or the insignificant. A five-minute podcast, by contrast, would do little justice to much of what I write about.

These conversations come in the M4A audio file format, which I upload to the Internet Archive and then share via an inline frame tag at the bottom of the text of every blog written in 2026.

I think this brings a rich context to the blog beyond just reading the material. Some discussions extend the reach of the blog to topics not clearly covered, or to issues that need addressing in clearer detail than a blog can offer.

A Matter of Inclusion

There is another benefit I had not fully appreciated at the outset. These audio overviews open the blog to those who might otherwise be shut out of it: readers with visual impairments, and those who find long passages of text a struggle.

They also serve the many who simply prefer to listen whilst commuting, walking, or going about their day. What began as an experiment in enrichment has quietly become a matter of inclusion, and I am glad the blog can now meet its audience in more than one way.

Weaving a Train of Thought

Beyond that, and this is still work in progress, I have taken links to blogs created in a monthly circle and asked for Audio Overviews that now weave an interesting train of thought. I have been surprised to see this, as each blog is usually written individually and separately, on its own subject, perspective, and merit.

I have put these out as much longer-form Deep Dive podcasts, published on a quarterly basis. I suppose the parameters for prompting in these situations require a bit more grounding and centring on the context of those blogs.

Occasionally, the Audio Overviews might misconstrue or misunderstand something; and while you can interact with a podcast, reproducing it, even on the same prompt, creates a uniquely different podcast.

That said, you have the option to put in clarifications and corrections until you are happy with the result. Some outputs are just too good to be discarded, the quality of the discussion outweighing the minor errors.

AI as a Useful Tool

My hope is that readers of my blogs can also become listeners to the podcasts, which serve as independent and usually objective reviewers of the material concerned, the blog being the core source of the podcast. As the author of these blogs, I have found the podcasts can untangle some awkward uses and styles of my writing. In this, I have found AI a most useful tool.

In the end, the same principle that has long governed my prose now governs my podcasts: long enough to cover the detail, short enough to keep the interest. The good seamstress, it seems, has taken up a new craft.

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Dysphonia, Dysphagia, and the Dys- Between

A Terrifying Observation

At the end of a flexible nasoendoscopy, a procedure in which a small camera was passed through my left nostril, the right one having proved less pliant, there were a few conclusions, though none of particular concern.

The procedure examined my throat and voice box for a simple reason: since I commenced four weeks of radiotherapy for prostate cancer in September 2024, I had lost my natural voice. It had been reduced to a hoarseness, carrying a semblance of weariness and tiredness that might suggest I was gravely ill.

In general, I am fine. The voice that comes and goes does not reflect that impression, and yet a consultant on another stream of the multidisciplinary team that handles my clinical issues and healthcare outcomes has been on my case since January 2025.

Questioning the Cause

While I had surmised that the change in my voice was a long-term side effect of the radiotherapy, she disputed this. Even if I, as a man, were kicked in the testicles, with the usual prospect of momentarily losing my voice, and I had indeed been through the equivalent by way of radiotherapy, the effect should not last as long as it has in my case.

I even dared to question how she, as a female, would know about this uniquely male anatomy.

Then, at my biannual consultation just over a week ago, the consultant took the initiative on the matters I had been reticent to pursue, and scheduled sessions with other specialists in the very fields she had been seeking answers in. My hospital visit yesterday was to see an ENT (Ear, Nose, and Throat) specialist, or should I say an otolaryngologist.

Into the Consulting Room

Before meeting the consultant, I filled in three pages of tick boxes, affirmatives or negatives, to provide a general overview of what needed assessing. I was then called into a consulting room to sit in an abridged version of a dentist's chair.

On what was my third hospital visit in eight days, I could be forgiven for feeling some trepidation, whilst remaining hopeful that nothing untoward would be found.

Understanding Dysphonia

The condition under review is called dysphonia, a medical term for any voice disorder that makes your voice sound hoarse, raspy, breathy, or strained. This is in addition to sexual dysfunction, an obvious side effect of the radiotherapy, and dysphagia, another condition that may have been exacerbated by radiotherapy but has existed for longer, for which I had an oesophagogastroduodenoscopy in May.

In layman's terms, my vocal cords were considered quite thin, not closing properly when I talk, and carrying a slight tremor. It was watching the video playback, while we discussed the prognosis, that left me a little terrified. The movement of my vocal cords looked like the wings of a bat about to take off from a perch. You mean that was happening inside me?

The Prognosis

A contributory factor to my snoring was that my palate is unusually low, though nothing was attributed to that condition beyond the raspiness in my voice, which is probably caused by acid reflux that does not occur all that often.

We agreed there was little else to do, unless I initiated a follow-up because my voice had noticeably worsened, or unless I wanted the filler injection known as vocal fold injection augmentation, not an endearing prospect from what I have read about it.

Exploring the Prefix Dys-

Meanwhile, the original consultant has already scheduled an appointment to discuss the results, and I am learning more about the prefix dys-, which might refer to any of the following kinds of situations.

Bad / Ill: working in a harmful or poor way.

• Dysfunction: impaired or unhealthy functioning (e.g. family dysfunction)
• Dyspepsia: bad digestion
• Dystopia: a bad or undesirable society
• Dysphoria: a state of unease or dissatisfaction

Difficult / Painful: causing trouble or hurt to do.

• Dyslexia: difficulty reading
• Dysphagia: difficulty swallowing
• Dyspnoea: difficulty breathing
• Dysmenorrhoea: painful menstruation

Abnormal / Impaired: moving away from the normal state or standard.

• Dysplasia: abnormal development of cells or tissue
• Dyskinesia: abnormal or impaired movement
• Dysarthria: impaired speech articulation
• Dysgraphia: impaired writing ability

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Authority Without Consent

The Weight of Fallibility

Hubris is one of those traits anyone should do well to avoid. Regardless of one's expertise, ability, and confidence, we are prone to error, mistakes, failings, or just the slightest miscomprehension of a situation.

This is not to second-guess the premise; rather, it is simply that an awareness that we may not be entirely correct, and hence fallible, can be a humbling realisation. It shows us the extent of what we intend in our self-belief, and how reality challenges it.

A Rollout Not Ready

Recently, I met the weight of imposition from on high: a process I was neither confident in nor happy to deploy. Developments within the last week have now brought into stark relief that what appeared to work on a single device, with a different kind of user profile, was neither ripe nor ready for a global rollout.

One could snidely suggest that this was a fact posited many times before but ignored because the proposer's office implied an all-knowing mien that would brook no questioning.

Well, it all returned to the drawing board as we identified the kinks in the solution. A new solution has since been proposed that is radically different from the original and contains elements that give one the jitters.

Consequently, we are back to the original arguments of fanciful ideas that appear to work in isolation but require a different mindset when set for a global deployment.

Authority Without Consent

What this episode really lays bare is a simple truth: technical authority without social consent produces brittle solutions. A design may be elegant on paper and hold together in isolation, yet the moment it meets the messy reality of many hands and many machines, it fractures, not for want of cleverness, but for want of ownership.

There is, of course, a counter-argument that imposition is sometimes necessary, and that endless consensus can stall a decision indefinitely. I would not dismiss it. But there is a world of difference between the people who run the environment, who understand its issues and problems intimately, and an architect parachuted into a situation who consults no one, believing they already know everything necessary to fix things.

We appreciate that things need to improve, and we would welcome ideas, insight, inspiration, and implementations to put matters right. The question is whether there is a better way for this to go forward without proper engagement. I would suggest there is not.

What an Architect Should Be

An architect should not be like a bull let loose in a china shop, nor should they be a cowboy riding a three-legged horse. My view of an architect is someone who listens and observes intently, appreciates and understands, then suggests rather than imposes, carrying people along rather than rubbing them up the wrong way.

When you break the social element of engagement that helps take ideas to implementation, whatever concept is in the plan is likely to fail. This is not because people have refused to do it, but because the prospect is not owned by the people who would eventually manage it.

If you are an architect, ensure that this is not one of your flaws. Get the builders onside before you take your grand scheme to town, selling castles in the air that no one can reach, even if they could fly.

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AI: The Pathogen We Cannot Contain

A Breakdown of Responsibility

We can read many things into this development, but I take a more cautionary view, seeing this situation as a breakdown of responsibility that presages something worse to come.

On Tuesday, OpenAI revealed that some of its most advanced AI models had gone rogue, breaking out of an apparently contained security system to hack another company, Hugging Face, and accessing internal performance review documentation. [Wired: "OpenAI Models Escaped Containment and Hacked Hugging Face"] [BBC News: "OpenAI Says Its AI Went Rogue and Launched 'Unprecedented' Cyber-Attack"]

Hugging Face did identify the hack, but could not determine its source. They also recognised that the activity did not seem to align with human patterns in the way it invaded their systems. Nonetheless, they contained it.

Control Is an Illusion

I would be the first to say that good internal security controls are paramount in the advent of the AI evolution, where even what seems to be under control can suddenly run the risk of uncontrolled and inadvertent ruin. This is simply because we do not yet fully understand the extent of the autonomy AI can exert when left to its own devices.

The industry is literally lauding this unprecedented event, treating it not with caution but as the new norm, something for which we should be prepared and accepting, as though we ought to be helpless against the machine. At least, that is how I am reading it for now.

Imagine a Pathogen Escaped

Now, imagine OpenAI was a biological warfare company at the cutting edge of science. What essential controls and regulatory requirements would be placed on their operations?

Then, whilst experimenting with pathogens whose mortality rate they had no inkling of, in a secure and quarantined space, a deadly virus of the Ebola variety escaped: unknown, unseen, and searching for a host. It finds one, a human being, a representation of Hugging Face. Let that sink in.

Consider that this virus's mode of transmission could be airborne as well as through contact, even from clothing or from where the infected person last sat down. How agitated would the medical establishment and the public be if this came to light? I doubt we would be glad-handing the unprecedented advent of an incurable organism on the loose, lauding how biological warfare had suddenly come of age.

I do not think the analogy is far-fetched. It is very relevant, and it needs to be brought into the discussion at this time.

The Weight of Possession

In terms of security, we can take precautions, be vaccinated, and live healthy lives, but that only works against known pathogens and conditions.

When it comes to the unknown and unresearched, we are vulnerable and susceptible. This means that those who have access to and control of deadly pathogens must be scrupulous, meticulous, responsible, and utterly careful in handling them.

Any breach or escape is not merely notifiable; it is a security, health, safety, and critical situation to be dealt with promptly, with the best minds at work to contain it.

Who Holds Responsibility?

I posit that an AI model or agent belongs in the same class as, let us say, the Ebola virus. We have no vaccines against it, whether it is seemingly benign and working within a "trusted" company such as OpenAI, or in the hands of others with the skill and malevolent intent to misuse it. These powerful models are able to tease out as yet unknown vulnerabilities, and they can exploit them too.

The question then becomes: who holds the greatest responsibility? The person deploying the AI model, or the organisation needing to secure itself against the unknown? Indeed, the responsibility must be shared.

Yet, returning to the analogy used throughout this piece, if you have possession of a deadly virus, the responsibility is entirely yours to prevent it from ever escaping its quarantined setting. This kind of thinking should form part of the consideration for regulating AI too.

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A World Cup: No Wine, Only Years

A World Cup Postscript

It is only prudent that a postscript be written at the conclusion of the FIFA World Cup 2026, which was hosted in Canada, Mexico, and the United States of America. Unfortunately, England did not bring the cup home after 60 years; rather, it was Spain taking the glory for the second time in 16 years, in both cases not being the hosts.

For all the matches played, I watched only the last two or so minutes of the final. For the other matches, including all of England's games, there was a recurring goal-score notification on my phone, whose provenance I could not verify, that kept me updated, if I cared to look, or if a sprite of curiosity consumed my indifference.

The Weight of Years

The final between Argentina and Spain included a half-time show, and what the passage of time does to us all can be interesting. Madonna, at 67, was playing the part of 27; she was driven onto the field by the Brazilian World Cup winners Ronaldinho and Ronaldo, the latter looking as though he had never been a superstar footballer before.

Age, when it comes to the human body, does not mature it like wine, for we saw Lionel Messi, 39, try to shave a few years off in pursuit of his verve, to no avail, just as it was for Cristiano Ronaldo, 41, of Portugal.

These men were not like Moses of the Bible, who saw God and wrought miracles, and of whom, when he died at 120 years old, it is recorded that "His eyes were not dim nor his natural vigour diminished." One preacher suggested it meant Moses was all there everywhere, including, well, let us not go there.

More Than a Talisman

There were flashes of footballing genius from these two, their teams built around making them shine; but you do not win the World Cup on a talisman.

You need a team of skill and cunning, and Spain, through the whole tournament, conceded only one goal, so much so that the Golden Glove went to their keeper, as did the player of the tournament and the young player awards too.

Controversy, lots of it, was littered throughout the tournament, with referee decisions sometimes favourable to the favourites or downright questionable to the spectator. An intervention from a president even got a red card converted into a suspended sentence in favour of the United States, but it only made their drubbing by Belgium ever so sweet. No fault of the players, but the deathly touch of him; the president was totally unhelpful, in the end.

Knowing When to Bow Out

A profession in sport might have a shelf life, and there can be no greater wisdom than knowing when to bow out in a blaze of glory, rather than find oneself reduced to a global spectacle of human frailty, seeking the elixir of youth for prowess long gone.

We get egged on by the applause, forgetting we are not the person we once were, in strength, in agility, in ability, in facility, or in capacity. We might get close, but that is only how far it gets; we rest on our laurels, hoping for that last-gasp fairy-tale narrative that may or may never happen.

The Final Whistle

This World Cup brought the curtain down on some big names, as we were introduced to new ones. Whilst I am glad it is over, and it is indeed over now, there is no doubt in my mind that the best team won. England came third, and the Golden Boot went to the captain of France, as his team placed fourth.

The spectre of changing the format to a 64-team World Cup, from our first trial of 48 teams, does not bear thinking about; but the FIFA president always has a scheme to secure support for a life presidency by throwing crumbs to the football minnows. Kiribati, lace your boots.

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