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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Coronavirus streets in Manchester - XXXV

Gilded horses to ride

Looking at another aspect of living in Manchester, on Sundays, I walk a route to church that takes me past the bespoke outfit called Gotham Hotel at 100 King Street and at the doors you see staff bedecked in vintage and sophisticated livery, all buttoned-up, wearing a pillbox hat at times and you can spot a bowler hat too, they look menacing enough to make you feel slightly intimidated by your standing.

Packed outside is a luxury Bentley Flying Spur that I thought belonged to the owner as a show of having arrived. It now transpired it is part of a fleet that includes a Bugatti, Ferrari, Lamborghini and Aston Martin, all available to guests or for hire for events and so on.

The hotel somewhat served a barometer for the return to a kind of normalcy as it is also in my walking exercises route. I could see when it was closed when it was preparing for opening and indications that it was back to receiving and entertaining guests was when I saw the laundry services truck outside.

Have the nose to drive

They have a little problem, in the onslaught of Brexit and the pandemic, the hospitality industry is suffering a staffing crisis. There are jobs and no one to fill them. Where there are people available, the requisite experience might be lacking. The delicate issue is they are seeking a chauffeur to drive the Bentley, I guess that comes with a whole set of snooty soft skills to cater to a particular clientele, not just any driver will do. I’ll end it there.

Anyway, I saw the car driven twice around my locality a few days ago, I do not know if they had already filled the position or the car was just being given a warm-up. Let’s just say the issue was serious enough to make it beyond the classifieds into a full news story along with unnecessary but albeit interesting detail about luxury car clubs and whatnot. [MEN: Manchester's 5-star Hotel Gotham can't find anyone to drive its Bentley and supercars]

Tackling doubt to stand out

We are not that complete

On my Twitter timeline a few days ago, I saw a message from someone I was following who works in my line of trade and is a respected supporter of our community of technical geeks and tyros.

What he had to say was he had about 12 years of working with a main product that most of us cut our teeth on before it began to diverge and diversify from an on-premise kind of infrastructure to embrace the cloud. I started working on the main product in 1996.

We have both watched the evolution of this product along with cloud integration, the cloud part is now becoming prominent in a co-management co-existence that is it now not enough to have a broader experience without the practised activity in the cloud. What surprised me was his admission that he felt like he was behind left behind by the new developments and so becoming concerned about his future prospects.

Overcoming my doubts

I cannot say I gained any satisfaction from learning that someone I assumed was a consummate Jack of al trades from his mastery of part of the subject felt he was not proficient enough in a developing area. I had recognised my limited exposure in the same area and was working hard at acquiring the skill, understanding, knowledge and insight into the workings and best practices.

If anything, it made me begin to question my doubts in my ability, for as I have been looking for new jobs I have mentally excluded myself from profiles that suggested some knowledge of certain fields when I probably had enough of the requisite understanding and exposure to meet the stated requirements and with the wealth of experience should be able to grow into the role to demonstrate proficiency and acumen to excel in it.

Taking on new bouts

I find that as I rate my competence, I am lacking in confidence to venture out and apply for some roles, thereby limiting my choices towards the opportunities that come my way. I feel like I need some sort of reassurance and advice, maybe even a pep talk, I am not sure. What is clear to me is I probably just have to put myself forward, deal with the rejection if that is the result or rise to challenge if they want to take it further.

I am digging for that resilience from within me to face what is ahead. Even in my doubts, I must fight some bouts.