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.

Coronavirus streets in Manchester - LXVI

Breaking my stride

The fear of abandonment was palpable during a chance encounter with a lady I met on one of my walks late at night. Our conversation began on the note of her acknowledging that I was working hard at my fitness, if only it showed that well, I’ll be a happier man.

As I responded to the compliment, she intimated that she was a victim of some sort of domestic violence which I then learnt was an orchestrated gang rape in a sheltered setting for which the main protagonist had been sentenced to 11 years in prison.

She obviously needed help and I slowed down so she could walk with me, it felt she needed someone to talk to and I was quite disposed to listen and see what I could do to help. I could not give her money as most transactions are cashless, but I offered that we might be able to find a place that takes contactless payments to get her a few essentials.

And we talked

The back-and-forth conversation included my revealing I am gay, I have a partner and our domestic situation when we are together. She made saucy and cheeky comments about what might make me attractive to my partner and much else, she was funny and quite lucid, very aware of the dangers on the street.

She apologised for slowing me down as she was still recovering from the 87 stitches that she received for her injuries. I learnt she was a grandmother, she had had some nasty relationships and been with some rather notorious and violent partners, some of whom had negatively coloured her view of life and survival.

Along the way, she called out to a couple of men who were huddled in a doorway, she volunteered that they were on spice, a synthetic cannabinoid with debilitating side effects sometimes leading to fatalities, and this is on the streets around us to which many of us are totally oblivious.

Trust is scarce

We were planning on going to a night shop, but as I realised we were only about half a kilometre from my home, I would rush home to pick up a few things for her and get my bank card to withdraw some money for her. I have never tried to second-guess what people might do with the money I give them, nor do I want to police what they do with it. It is for them to decide what their immediate need is and to either wisely or unwisely attend to that.

When I told her, I can run home to get a few things, she began to cry thinking I was about to abandon her. I could understand, yet I would only give her assurances that I would return apart from the fact that I did not really want to reveal where I lived. Besides, some people are so desperately in need of help and support beyond the immediacy of what we can do for them in that moment.

Completely worn down

On one occasion, in attending to someone in desperate need, I made the mistake of giving him my phone number, first, he said, he had lost the money I had given him to get shelter for the night, and when I still engaged and secured the shelter, through the night, I was bombarded with calls and pleas, more than 40 of them and it continued to the next day.

I happened to see him a few days after and by then I had been so worn down that there was not a scimitar of empathy left in me as I shouted at him and told him how he made me regret ever meeting him at all. He was never ever to contact me ever again and if he approached me, I would tackle him as a mugger. It was the kind of thing that could sear your conscience against having the milk of human kindness, then again, every person’s circumstance is different.

In the readiness to help, the helped, despite their situation, circumstances, and history should be careful and that is difficult, to not frustrate their helpers with untrammelled demands, we all have limited capacity to address issues that are essentially endemic and in need of more professionally coordinated approaches for long term benefit to those that require it.

Willing to angel

I ran home and got a coat, a scarf, pairs of socks, and the thermal underwear that I bought for my sister when she was in Iceland, but I never got to post, and a few snacks packed into a bag, not forgetting my bank card, and rushed out again.

She was still waiting for me, as I took to one side and showed her everything I had brought before giving her some money. She asked if I was sure I wanted to give her what I had already given her, I guess this thought comes with the concept that the generosity from strangers could be in short supply for those in desperate need. I do wonder if giving them a lot of money can do a perverse thing of changing the concept of value, in terms of what they need.

That is probably something for social scientists, psychologists, or anthropologists to study, I can only do my bit in within the means that I have. What could I do when she started crying at what I had been given the opportunity to do? I embraced her and told her, to think of it as if her had just met an angel. Even on the streets of Manchester, there is goodness, kindness, and mercy for all, those who have and many more who do not have much at all.

Europe: The wetsuits from Calais that humanised the migrants

The Calais of our times

Yesterday night, a full understanding of the so-called Calais crisis dawned on me. In fact, it is now known as the Calais migrant crisis and it is seen through the eyes of business and tourism.

Business by the reason of tailbacks of traffic consisting of lorries needing to cross the English Channel between Calais and Dover in either direction. On the tourism side, it is about British holidaymakers unable to cross to mainland Europe and thereby a crisis of sorts in the Kent countryside.

The migrants in Calais consisting of people fleeing from areas of conflict and unrest as Syria, Eritrea, Sudan and Libya along with seemingly economic migrants from Sub-Saharan Africa number up to 5,000 living in the most inhumane conditions in Europe and all trying to cross over to the United Kingdom.

A fantasy, at best

The draw to the United Kingdom, has elements of reality and fantasy, many do think they can easily be subsumed into the system through the black economy which we must accept thrives despite protestations to the contrary and the idea that we have an easy and accessible welfare entry threshold compared to other European countries.

Besides, many of these people come from countries where whatever standard of English they have is passable and will be useful enough for them to get by.

Yet, to view this through the lens of our convenience is to miss the greater issue of the humanitarian crisis on our borders, the fact that a possible majority of these people are desperate, fleeing conflict and danger whilst seeking any opportunity for a life that has a modicum of peace, stability and the ability to provide for themselves and their families.

Our peace is a draw

Peace in Europe is a more than a draw for those willing sometimes without any other choice or opportunity to embark on life-threatening, dangerous and risky journeys from their ravaged homelands for the opportunity of a new life – that is an undeniable draw that is just human in all its ramifications and something anyone in their position will probably do without hesitation.

The English Channel is just 33.1 kilometres (20.6 miles) at its shortest width and standing at shores of Calais it is easy to view the White Cliffs of Dover which are quite visible from Calais as deceptively closer than they really are. Many people have swum the English Channel crossing, the fastest being in 6 hours and 55 minutes, but is it not a feat for the faint-hearted.

Two young men in wet suits

This is how Mouaz al-Balkhi and Shadi Omar Kataf from Syria bought wetsuits and plunged into the busiest shipping lane in the world of the English Channel from Calais in order to swim to England only to perish in their attempt and wash up on the shores of Texel, an island of the Netherlands 465 kilometres away and the coastline of Lista in Norway some 850 kilometres away, respectively. [Their Story]

The lives and deaths of these two young men shows not just the desperation of the migrants, but the risks they are willing to take to make it to the United Kingdom, even if it costs them their lives. Thanks to the Dagbladet newspaper of Norway, these two young men did not end up just another migrant statistic of misfortune, the coincidence of two bodies in wetsuits found on foreign beaches, but they are people like you and me who might have had a different story if their homelands were as peaceful and as comfortable as ours.

This is the case of each and every migrant who has embarked on a perilous journey from the turmoil of war or any other uncomfortable circumstance in their homelands to seek a new life in Europe. Meanwhile, our politicians are suffused in rhetoric and constituency-pleasing banter as the migrant reality is toyed with as a poor reflection of our humanity.

We can do better than this, we surely can.