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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