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.

Photons on the Prostate - X

The faulty waterworks

Just a week after I concluded radiotherapy for malignant prostate cancer, I was back at Christie Hospital to pick up an urgent prescription. The lingering side effects of radiotherapy are the fatigue that I have managed to varying degrees dealing with insomnia, strength, and ambulatory performance. It is the bladder and urinary issues that present the greater challenge and as one nurse politely put it, my waterworks.

The issue I described of having a kettle filling my urinary tract with boiling piss was described to my understanding by a cancer support nurse yesterday. Besides the prostate inflammation that could constrict the urinary tract, radiotherapy could also irritate and inflame the inner lining of the tract and that is what I am feeling as a burning sensation anytime I have the urgency to pee and when the bladder does not fully empty after any attempt to pee.

Hotline for hot piss

By last night, it was beyond tolerable and quite unbearable that I had to call the Christie Hotline for help. After describing the symptoms and the utter discomfort, I was given some advice to take painkillers which are generally anti-inflammatory too, that seemed to ease the discomfort and even eliminate the possibility of a urinary tract infection.

My notes were forwarded to a doctor who called this morning to assess my condition and prescribe some medication and palliatives to help with the waterworks.

Two things might also become an impediment to going out: the sudden urgency to pass water and the frequency at which that happens. At the hospital, in the space of an hour, I visited the toilet thrice.

Vulnerable in stride

Then, on my way home, I got the bus and when I alighted, I was about 300 metres from home when I thought I was going to wet myself. I was not going to make it home on time just as I saw a young man entering a student apartment block and I appealed to him that I had a toilet emergency. He ushered me to the disabled toilet, and I could not wait to get the business done. The compelling urge is literally impossible to control.

Before my treatment, I could hold water for hours, now, it is a matter of minutes that I have ordered a Just Can’t Wait Toilet card that hopefully grants sympathetic access to toilets when I am out and about. Along with that, I have ordered a Radar key to give access to public disabled toilets.

Coming to terms with the fact that the diagnosis, treatment, and ensuing symptoms together constitute a disability is something I am having some difficulty with, but the truth is these are vulnerabilities that would subside. For the duration of the issues, one should avail oneself of all the help available to ease the discomforts and pain.

Blog - Photons on the Prostate - IX

Blog - Men's things

It is jab and go

Come on over

For the past month, I have been pestered by messages and alerts to go for my seasonal COVID-19 vaccine as the health authorities have considered there is a strain of concern about, a spike in infections leading to hospitalisations, and the danger it poses to those in a vulnerable cohort.

When I took my last booster in June, I left it well over a month from the first notification before I relented. I suppose the other issue is since the autumn of last year, there have been no nearby locations or walk-in centres to obtain the vaccine or booster.

Outskirts for jabs

The nearest locations are at least 2 kilometres and over a mile and a half away. It could easily be walked, though in finding those locations, it might be best to use public transport and then walk back home.

Why they have decided to move all the vaccination locations out of the city centre, I cannot understand, and this activity is no more at GP surgeries or dedicated facilities, but at chemists and pharmacies where it seems spare and probably medically unqualified hands are assigned the more onerous duty of registration with the rather trivial act of jabbing you in the arm.

Following the advice

What I have also found out is less people in the vulnerable cohort are keen on the booster, I have been advised by many unqualified people to shun the booster, but I will only act on sound medical advice. I was chatting to someone about it the other day and they volunteered that the booster knocked them out for almost a week.

In my case, I have tolerated the vaccine quite well, I was pleased that the sterling work by Katalin Karikó and Drew Weissman that went into creating the mRNA-type vaccine put out by Pfizer and Moderna was awarded the 2023 Nobel Prize in Physiology or Medicine.

Commending the science

On the counts, I have now had 2 main vaccines and 5 boosters, all mainly Pfizer-BioNTech or Pfizer, except the fourth which was the Moderna vaccine. Just over a day and a half of pain in the area of the injection, a little discomfort but no need for an analgesic.

What has surprised me is we are no longer required to wait around for about 15 minutes to gauge the patient’s reaction to the vaccine. You are jabbed and you leave, complications inadvertently handed off to the emergency services. It did not bother me; I took the time to walk back home through strange alleyways and backstreets.

Manchester keeps giving up new secrets about places, people, and buildings. 10 years here and still there is quite a lot to see. 

All preventative protections matter

Easy on the body

The day after I returned from Cape Town, I attended a walk-in vaccination centre for the spring booster I was invited for by my GP through a text message when I was away. I had taken the Pfizer/BioNTech Comirnaty mRNA vaccine for my first two jabs in February and May, then the first booster in November, but they only had the Moderna Spikevax mRNA vaccine, and I was fine with that.

A few days later, I was asked if I would like to queue up for the Monkeypox vaccine, but I was not up to it, I had probably overloaded my body that was first acclimatising from a southern hemisphere winter to a northern hemisphere summer along with the mild side effects of the other vaccine, it would have been quite unwise to then take on another vaccine, even if I could have coped well.

Public notices are hard

The next weekend had another queue for the Monkeypox vaccine, but the eligibility criteria on every reading failed the plain English test in my view as it seemed to exclude a critically vulnerable cohort that I belonged, and even at their third attempt after many remonstrations, it did not improve until I got a personal assurance on Twitter that our cohort was not excluded.

It would have just taken a slight modification of citing minimum eligibility that would have been inclusive rather than what seemed to be a narrowly defined set of criteria that gave more access to the less vulnerable just because they attend had attended the public health clinics in the last 12 months and they were on Pre-Exposure Prophylaxis (PreP).

Not in the weather forecast

Anyway, for a 9:00 AM opening of the doors, I took a cab to the venue arriving at 8:10 AM and the queue was already about 150 deep. I had checked the weather and it suggested a clear day, but within 20 minutes, there was a turn, and it was raining. Many of us did not have any protection against the elements, I just opened a large Aldi shopping bag over my head, as a covering.

It did not seem it would let up, so I came to an agreement with the men ahead and behind me to rush home to get umbrellas for our protection. I called a cab and by then, there was a downpour, got home, picked up 4 umbrellas, a waterproof jacket, a poncho, some bottles of water and snacks, and then returned to the queue that had moved up about 30 places.

Come up hither

Giving the men umbrellas, though they refused the drinks, I was informed that they had all been given tickets in my absence. I went up to the coordinator to get a ticket afraid that I would now be put at the end of the queue that now had about 250 people, but on seeing my walking cane, he offered that I got straight in and take a seat instead. Much as I do use a walking cane, I do not consider myself having accessibility problems, and I do need the cane most of the time as I have used one for over 19 years.

I did remonstrate, but he insisted, so I had a chat with the men I left in the queue and went into the temporary premises to take a seat. Soon, I was offered forms to fill in and I found myself meeting much more than the minimum criteria, I was ticking 3 boxes of medical establishments where I got my care amongst other things. I point I made earlier stands; the communication was poorly written.

Having filled in the form, my answers were verified in a caller-response engagement and then I was given the Monkeypox vaccine. All done and out by 9:27 AM. The weather was looking better, and the men felt they did not need the umbrellas, gave them back and I walked back home.

Just allaying our concerns

Apart from a little soreness in the arm and maybe an incidence of the runs over 2 or so days, I am fine. Indeed, Monkeypox was a bit of a concern and that coming still in the midst of the Coronavirus pandemic did not make for comfortable reading. The fact that the most affected demographic in Europe and over in the United States are gay men, exacerbated concerns. The supplies were usually exhausted before everyone in the queue was served apart from the last time.

I guess in all we were trying to avoid a situation where this advent of another communicable disease leads to labelling and stigmatisation. It just happens that the community and social constructs of the gay persona might well expose one to this situation more than in other settings.

Taking precautions and preventative measures are the options we have availed ourselves of. Then again, the other part of this narrative is how my desire to be of a little help offered the consideration by reason of my slight handicap to be seen earlier than would have been the case.

Then to the vulnerable, all preventative protections matter, be they vaccines or any other medical advice proffered that would give us a fighting chance against infection or disease. Some do suggest there is no need for another booster, I think I keep myself informed enough to know that when my doctor or consultant does suggest some precautions, that is most likely in my best interests.