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.

Men's things XXXI: Can Intimacy Be Reclaimed After Prostate Cancer?

The Unspoken Battle

It is the unspoken conversation, one I have barely had with myself and definitely not with others, including my partner, my medical and cancer support teams.

When I was diagnosed with malignant prostate cancer in June 2024, the first physical urge that left me was sexual desire, as though someone had just kicked me in the balls. It wasn't pain, just a numbness of confusion and incapacity.

Preparing for the Obvious

Even for a man with African heritage and no need for machismo, I have been open about the bowel and bladder issues. I was quite read up on them and ready to attend to the matters concerned. I didn't want a catheter insertion for whatever reason, but incontinence underwear? I was ready to model it for men of a certain age and body, if necessary. I do like my underwear, and I have used linings too; the situation is manageable.

However, on the sexual part—the big mammoth in the room—I have ignored its presence and viewed it as part of the weight-bearing structure of that space, insignificant if it played dead and never moved. But 17 months after radiotherapy, with all things looking good, the mammoth is awakening from its imposed hibernation.

Weighing the Options

If I wanted sex, and I enjoyed sex, this diagnosis exacerbated and crystallised the ideas of sexual dysfunction in my mind.

In choosing the option for treatment, I first spoke to the consultant surgeon about the radical prostatectomy procedure. A year before, a men's advocate who had undergone it explained that the expert surgeon was able to save the nerves necessary to retain some sexual functions.

The surgeon was quite candid with me: my prostate gland was so enlarged that he couldn't guarantee anything could be saved of my nerves until he was in there conducting the surgery.

Imagining the Aftermath

As this procedure is conducted under general anaesthetic, the prospect of waking up to a surgeon trying to express happiness and sadness in the same facial expression was one I was not intent on seeing.

His professionalism and years of experience might have given him the skill as a comic piece, but it would have been a joke at my expense. “Mr Akintayo, we successfully removed the prostate gland. However, your sex life is gone; you're impotent. But we can make some interesting toys for you, to have some sensation and other elements of pleasure.”

I'd be crying tears of joy for being free of cancer, catheter inserted as there is no urinary control for months, finding where my pelvic floor is, and living happily ever after.

Then I ask, even if this smacks of medical paternalism: should surgeons be more proactive in discussing sexual health outcomes?

Learning from Others

Another friend had undergone the procedure a few years before. He, a straight man, came to me to seek advice about the kinds of sex I know. Much as I could have helped, I felt he needed to join a men's support group to appreciate the experiences of men in similar circumstances before thinking of this, because his views were explorative to my hearing, rather than developed.

From that surgery discussion, I knew it was not for me. At the same time, I needed that cancer excised because, whichever way you look at it, dead men do not have sex.

Another question arises: how do cultural expectations of manhood affect seeking the essential prostate health check-ups first, before considering the treatment decisions and recovery?

Radiotherapy and Its Consequences

As I took radiotherapy, the immediate and enduring side effects have been bladder related, with a few bowel issues. My sex drive is depleted by being unsure of ability and compounded by lacking confidence. It is also not something that can be addressed with bravado.

As you can read, I am tackling this issue alone because I do not understand this vulnerability enough to appreciate the kind of help I need.

The Medication Dilemma

Yes, I can get erectile dysfunction medication and pop pills like sweets, but that not only becomes a prop; it does not address the emotional and mental issues. Rather, it becomes a legalised version of chemical sex, getting a prescription from a pharmacist instead of illicit drugs delivered by a dealer.

The question then becomes, how many highs can I have before drug-induced priapism or severe hypotension with the risk of death is the danger?

Furthermore, because it has been offered, is the medical establishment over-reliant on pharmaceutical solutions rather than psychological support?

Rethinking Intimacy

As men, we are fixated with erection and penetration as the full expressions of sex; the absence of either or both feeds a kind of sexual frustration for the person and their partner. Does sex become a distant memory rather than a present experience with a hopeful better consummation, or are damaged goods being repackaged for a partner with different expectations?

For gay men, where physical intimacy and sexual expression often form central parts of identity and connection, the loss can feel particularly acute. The dynamics of same-sex relationships, where both partners understand male sexuality from lived experience, can create a unique space for empathy and shared problem-solving.

Yet it can also mean both partners acutely feel the absence of what was, and the uncertainty of what might be possible. The fear of being seen as “broken” or inadequate in a community that sometimes prizes sexual vitality can compound the isolation.

For straight men, the challenge often involves navigating conversations with partners who may not fully grasp the psychological weight of erectile dysfunction on male identity. There's the added pressure of traditional gender roles and expectations around male performance.

Meanwhile, bisexual men face both sets of pressures, depending on the gender of their partner, alongside navigating healthcare systems that may not fully recognise or address their specific concerns.

Regardless of sexual orientation, the fundamental question remains: how do you maintain intimacy and connection when the language of physical expression you once spoke fluently becomes halting and uncertain?

Confronting the Fear

Yes, I have literally thought through all this with a clear indication that I probably need to re-engage with a support system that would address many of the pertinent issues after treatment for prostate cancer. The questions are not abstract; they are real issues in existing relationships.

You might wonder, if I have managed the bowel and bladder issues that well, why am I struggling with the sexual one? Whether we like it or not, it defines, to a certain degree, manhood, manliness, performance, and self-esteem. Maybe, just maybe, this is part of the fear that stops us black guys from talking about men's things.

One last question: are Black men receiving adequate support and information about sex, sexual health, and sexual expression after cancer treatment?

Moving Forward

Yet we need to talk. Prostate cancer cannot be the last story, and navigating a way to fulfilled sexual satisfaction after prostate cancer treatment must not be greeted by the shock of the experience, but by the hope of new possibilities through therapy, support, and understanding.

How intimacy changes in relationships is a journey that has no clear answers for both parties, and that might not be the prospect a partner desires in what looked amazing before cancer struck and stole our virility.

Check your Prostate Cancer risk in 30 seconds.

Blog - Men's things XXX: Let's talk Prostate Cancer

Blog – Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Men's things - Prostate Cancer blogs

A Google NotebookLM AI Audio Overview Discussion of this blog

Fentanyl Appearing for Pain, Pills, and Policy

Within the depths of pain

In some ways, I probably have a very high pain threshold, but in late 2009, my pain tolerance was completely overwhelmed when I had cancer in my left foot, with fungating tumours and blackened skin lesions, both deadly and deathly.

Standard painkillers (paracetamol) and stronger medication (tramadol) failed to relieve the pain. It was so intense that I could not put my foot down without crying. In the hospital, I was given morphine, but that only lasted two days before I was vomiting everything.

The Search for Effective Pain Relief

Then came OxyContin, but I was not given enough of it. The nurses seemed to be rationing it even as I begged for relief. However, when I was discharged after 18 nights in the hospital, my pain medication was adjusted. Multiple types of pain relief were administered to target different aspects of the pain.

Paracetamol, oxycodone, and a fentanyl transdermal patch; all that, and pain still persisted, sometimes taking centre stage. I resorted to almost hysterical laughter to release endorphins as a form of palliative coping.

After another consultation, I told the doctor I was still experiencing pain. In his view, my medication should have been sufficient; it was not. He doubled the dose of the fentanyl patch, and only then did I achieve what might be called pain relief.

The Path to Recovery

I was on pain medication from late September 2009, and by the end of January 2010, the tumours were gone. I had fresh, pink skin on the soles of my feet, a miracle of medicine, but it involved gruelling treatment, including chemotherapy and its dreadful side effects.

The pain had gone by March, so I removed the fentanyl patch. Big mistake. I salivated excessively, spat out mouthfuls of saliva, and became severely diarrhoeic. I had to reapply the patch. From this, I learned I needed to wean myself off it gradually. I kept it on for twice as long while gradually reducing the dose by halving the patch at each change.

It took three months to fully stop using the patch, long after I no longer needed any sort of pain relief.

Understanding Fentanyl's Role

Without fentanyl for this level of pain, life would have been unbearable, almost not worth living. One day, the patch fell off. Not knowing you could cover it with a transdermal sticker or plaster to keep it in place until the new patch was ready, I was laughing deliriously. My friend thought I had lost my mind; it was a protective mechanism. If I hadn’t been laughing, I might have been dying from unbearable pain.

Today, fentanyl should only be taken under medical supervision. I also understand that not everyone has experienced the severe pain I did, nor have suffered the otherworldly pain others endure; my pain was eventually brought under control, subsided, and disappeared entirely. I consider myself extremely fortunate.

My body became so accustomed to fentanyl that I couldn’t simply stop using it. It took willpower and determination; perhaps a rare gift. We all have different physiological responses. I am not seeking praise for that.

A Broader Perspective

Beyond the need for medication for chronic pain, there are issues of susceptibility to addiction, both requiring a sensible, empathetic approach under medical guidance across a broad spectrum of related conditions.

Regarding fentanyl as a narcotic, I feel ambivalent. People don’t become addicts solely by enjoying sweets; there are complex circumstances that I believe cannot be addressed purely through criminal justice.

Labelling fentanyl as a weapon of mass destruction would be narrow-minded and lacking understanding of human suffering, especially in pain management.

Learning from Recent Experience

My perspective is personal. I am cautious with medications, aware of their addiction potential. Recently, I used codeine, which converts to morphine in the body, to manage penile and urethral pain during the fourth week of radiotherapy for prostate cancer.

Prescribed to be taken up to four times daily, I rarely exceeded two tablets a day. After three days, I only took one tablet at night. I still felt pain and discomfort, but consciously avoided the lengthy process of weaning off codeine once my body adjusted.

As long as those who truly need such pain management are not disadvantaged by misguided policies, I hope this decision by the White House does not, in pursuit of an ideal, create suffering for many who simply seek relief.

Pain in my blogs

Blog - In hospital to kill the pain

Blog - Getting off the pain train

Blog - Generally responsive and dealing with pain

Blog - Stronger medicine and another course of chemo

Blog - Boldly tell your doctor everything

Blog - Off and back on the pain patch

Blog - Opinion: Where addiction and tragedy can confuse issues

Blog - Knowing pain is personal

Photons on the Prostate - XVI

Sleep forsakes thee

It is probably time for an update regarding how I am recuperating following radiotherapy, I am up this early because I was up for most of the night, one side effect that I have not given much consideration is insomnia. I sleep to have to catch sleep whenever I can, but it messes up my day because I cannot concentrate fully on what I need to do.

For this, I should find the lifestyle adjustments that would help me sleep consistently and better in what are supposed to be the normal sleeping hours. I am careful about medically induced sleep, in fact, I have shunned offers of this kind of medication for over 15 years, especially when multiple medications then caused drowsiness, it all adds up and you want to wake up too.

Soon after radiotherapy, I also had Codeine prescribed as part of my pain management, as Codeine metabolises into Morphine, I was all too aware of the addictiveness and issues with withdrawal. I only used Codeine at night and just once a day. As soon as the pain and discomfort had eased, I began to wean myself off Codeine and I did it in a week.

Straining to pee

The bladder and urinary issues are much improved, I am on medication for benign prostate hyperplasia, basically prostate enlargement firstly due to cancer and the resulting inflammation after radiotherapy.

The urinary flow is better, checking with the IPSS Calculator, my IPSS score has fallen to 14, which is still moderate, but it is down from the 19 that was recorded just before I had the clinical consultation for the radiotherapy treatment option in late July. I must accept that these things take time.

I think Incomplete Emptying is not much of an issue, Frequency is moderate, Intermittency is low, Urgency is moderate, I have a Weak Stream, Straining is a feature of me being first as the urinals and the last to leave, I noticed that so many times in Cape Town, Nocturia is about thrice during the night, and I need an improvement in my urinary function.

The last question on the IPSS Calculator – “If you were to spend the rest of your life with your urinary condition just the way it is now, how would you feel about that?” Before I commenced treatment, I was Mostly Satisfied, the feeling now is Mixed, I might need an appointment with Urology to talk through these issues.

As I am running the IPSS Calculator under medication for easing prostate stress on my bladder and urinary tract, I would think without medication, the situation is much worse.

Recuperating in Cape Town

Indeed, at this time of the year, any visit to Cape Town would seem like a holiday. This visit was anything but a holiday, it was the most convenient place for Brian and I to meet, so he could support my recuperation, for I had neither the personal nor domestic care I needed at home, as the side effects of radiotherapy worsened.

It did us a world of good, a lot of rest, the summer weather, walks on the beach, cooked meals, and much loving care and attention. We ventured a couple of social events but none of the typical Capetonian holiday stuff like venturing out to wine estates or tourist traps.

I drink cranberry juice, hardly any carbonated drinks, I have eschewed alcohol, I probably have had three glasses of wine in three months and for tea, I have stuck to decaffeinated tea rather than decaffeinated coffee until I am happier with the urinary situation.

Singing for the crows

One lasting side effect is my voice, it sometimes gains strength and timbre, but I do not know if I would totally regain my original voice, or it would settle somewhere near what it was. It sounds tired and slightly feminine, there might be some underlying fatigue to it brought on by insomnia too, possibly a topic for discussion at my next medical appointment.

In all, I can report there is considerable progress, I do tire easily, but I also will myself to do things and find the capacity to get things done. That is a good update.

Reference

MedScape: International Prostate Symptom Score (IPSS) Calculator

A catchup on the check-up

As things seem to be

Five weeks later than schedule, I was back in hospital for my biannual check-up which follows the usual routine of reviewing the results from tests conducted on my last visit, how I am both medically and mentally, along with other issues that might come up.

In these straitened times that even I in all my denial of reality sometimes suggests does not affect me, there is a sense of dissatisfaction in the state of affairs, a sad feeling of betrayal of confidences and trust that gave the impression of prospect where there was none, then with quite limited resources to hand, one is constrained in agency and autonomy.

It goes without saying that all these has its effects to either a greater or lesser degree on one’s health. Yet we soldier on believing that the travails of the present are temporary and would pass into the annals of recount and raconteuring with a wistful acknowledgement of how trying times have blessed us with an appreciation of the better things that have followed.

Something quite unexpected

In the review of the last battery of tests, I was unaware of an indicative test that had been conducted as neither my general practitioner (GP) nor I were informed of the result. My understanding was the test was rarely done and only annually, if necessary. However, on the consultant’s screen, I could see a third is the depreciation of an indicator that signalled my ability to fight infection with no clear reason as to why that might have happened.

It is a matter of concern, but one will have to wait for the results of tests conducted on fluids taken earlier today to determine if that was a mistake, an aberration, or a trend. With the new computer records system, you are notified of the result as soon as it is known.

Those hardworking kidneys

Beyond that, I wanted some close attention paid to my kidney function tests as the antiretroviral formulary I am on has been administered for over 12 and a half years. One of the components in the combination therapy can cause kidney impairment and I wanted that aspect monitored. However, looking at the trends in my kidney function tests over the last 4 years suggested I did not have anything to worry about.

The discussion nevertheless allows the consultant to pay a bit more heed to the indicators apart from being acquainted with the fact that I quite knowledgeable about my condition, the therapies, and developments in HIV medicine with the view to obtaining the best outcomes for my health and wellbeing.

Drink lots of aqua

Having had 3 instances where drawing blood was an ordeal, my cousin had given me some advice some months ago, so, from the moment I woke up, I was drinking lots of water, something Brian noted as unusual for me. By the time I was at the hospital this morning, I had drunk over a litre of water.

When I went to see the phlebotomist, my veins were in the Christmas spirit as for how my blood filled the vials, we could intone, “Let it flow, let it flow, let it flow.”, and soon, 7 vials were filled without the need for another prick in my arm.

Everything is electronic now, things are called up on computer and there were no forms for new appointments or prescriptions, you just had to give your name and date of birth along with some other personal information to get things done. The days was slow and tiring, in general, I felt good. I will just wait for the results for comparison and the next meet-up is in 6 months, I guess.

Thought Picnic: 13 years on antiretroviral (ARV) medication

Taking treatment for HIV/AIDS

I was put on first-line antiretroviral (ARV) drugs on this day 13 years ago, on the 9^th day of admission to the hospital, seriously ill, in pain, and after a battery of tests and biopsies. At that point, the consultants and specialists had agreed on the course of treatment to address HIV that had deteriorated into AIDS with the opportunistic infection of cancerous Kaposi’s sarcoma.

Other schedules for my treatment were being planned as I was informed the next day. I started on Kaletra (lopinavir/ritonavir) and Truvada (emtricitabine/tenofovir), two of the former and one of the latter, once daily, I tolerated them well apart from occasions of diarrhoea. Within 6 weeks of that regime, my HIV viral load had been reduced to undetectable. [Drugs.com: Drug Interactions between Kaletra and Truvada]

Changes to medication

I was kept on this medication until May 2010 which was over 3 months after my last session of chemotherapy and when literally all other medications had ceased before I was put on Atripla. Today, I am on its therapeutic equivalent as branded Atripla has been withdrawn from the market because it is no longer under patent and the demand for branded formulary has fallen with the introduction of generic alternatives.

However, the more reason for writing this blog is to indicate that the antiretroviral drugs are efficacious, they work, they considerably diminish the effects of HIV leaving you with an undetectable viral load and usually an increasing CD4 cell count that gives you the ability to fight off disease.

Healthy status and medical adherence

With an undetectable viral load, you cannot pass on HIV, which has given rise to the U=U Campaign, Undetectable = Untransmittable. People of ARVs adhering to their medication and having regular check-ups on their blood chemistry and sexual health can expect to live as normal as possible lives.

This is all possible if one is under medical supervision and no decisions are made regarding the use of medication without expert instruction, even if by some good fortune, there is some indication that HIV has been eradicated by whatever means. Your HIV consultant must have fully tested and verified that claim before you change anything regarding your medication.

For me, I am a living testimony of how medicine with expertise, the support of many, the hope that helped my faith, that HIV even when you have fully developed AIDS-defining illnesses can be brought under control with medical intervention. Once again, it is not a celebration just sharing facts about my own experiences.

Blog - Reflecting on 20 years after an HIV-positive diagnosis

I was a hostage to pain

Pain was a deafening cacophony

My remembrance of this day thirteen years ago seems to be a constant rewrite of an event I have written about almost every year on the 22^nd of September because it was when I was admitted to the hospital for the treatment of AIDS presenting as fungating tumours prominently on the sole of my left foot and starting to manifest on my right sole.

The fungating tumours were Kaposi’s sarcoma, an aggressive skin cancer that without treatment could quite easily kill you off, if not for its metastasis, the pain can reach such unbearably significant levels, you might as well give up.

At the time I was admitted that Tuesday morning, the only way to alleviate the pain I was suffering was to keep my foot up, for if at any time, my foot went below my waistline when not on the hospital bed, the surge of pain was such that I winced, sometimes bellowed, and definitely cried. The strong painkillers I was on did not seem to arrest any of the pain.

Sometimes, pain does not respond

I was put on a morphine patch, but within two days, it was interfering with my digestive system, I could not keep my food down. Eventually, oxycontin seemed to work, though the nurse thought I was demanding more dosage than was recommended. Unfortunately, there is no way of measuring pain apart from what the patient tells you of how they feel. Much as I seemed to have a rather high pain threshold, considering how I have suffered before admission, I was in quite excruciating pain.

The admission brought me under the best medical supervision you could find for the treatment of HIV/AIDS in the Netherlands. The consultant spent considerable time with me, explaining what they understood of my condition and how it could be treated on the proviso that I could tolerate the treatment and consequently pull through. He also estimated with the progression of the disease, if I did not respond to treatment, I probably had 5 weeks to live.

Laughter for pain to go

Pain itself can drive you delirious, for when I left the hospital, I was on 4 different types of painkillers, each addressing a different centre of pain, the more critical one was the pain of cancer for which I was prescribed Fentanyl, and it was to deal with the pain, but I was still in pain. When I told my consultant, after surmising that it should have been sufficient, he doubled the dosage and that worked.

Yet, there were other lessons I had to learn, the Fentanyl patch was to be applied to the skin and I had it on my chest, the smooth part of my breast, but I did not know it could fall off during the 7-day application, and it did one Sunday as I returned from church. The pain came like a torrent on a vengeance, I had only one immediate solution whilst I waited for the new patch to kick in. I laughed deliriously, my ex-partner staying with me and caring for me, thought I had lost it.

The laughter was releasing endorphins and that was reducing the pain, not totally, but sufficiently. When my nurse came the next day, she said, I could get a skin patch with adhesive to keep the Fentanyl patch in place. How I was not told that before, I cannot tell.

Getting off the pain medication

By January, the cancer lesions had totally disappeared and in its place was pinkish fresh and tender skin once the necrotise skin had been cut away. It was not until April that the pain had totally gone, but I had to wean myself off the patch by halving it and keeping it on for twice the recommended dosage over another 3 months before I was totally free of painkillers.

I can only write of my own experience of pain; it was the only thing that occupied my consciousness for most of the first week in the hospital. Once I began to take my mind off it, I could also begin to see beyond my plight, I learnt a lot about understanding what facing death was and how much the body seems to endure, for strength and resilience do come from somewhere and now that you might have trained up for it.

I blogged through the time I was in the hospital, and the first blog I wrote was In hospital to kill the pain, and kill we eventually did, but it did not come easily, it told radical treatments and close to 6 months. That I am writing that story in another guise 13 years on is a testament to the human story. Many moments of pain come in to upset us, but with the passage of time, they can become just a memory and one for which one can be exceedingly grateful for coming through.

References

Blog - Reflecting on 20 years after an HIV-positive diagnosis (2022)

Blog - One Tuesday morning in September (September 2021)

Blog - A decade from AIDS to life and living (September 2019)

Blog - Hospital: Testimonies and phlebotomies (September 2016)

Blog - A certain death from cancer loomed large (September 2015)

Blog - In hospital a year on (September 2010)

In Telling: Beware of pill rumours

A day in hand

A few weeks ago, I looked at my 7-day pillbox on a Friday night when I was about to take my medication and I noticed I had one more day than I should have, I know I definitely took my pills on Sunday night as that is my start of the week, but I could not account for which night until Friday that I did not take my pills, the whole process is as automatic as muscle memory, the day markings on the container had long been lost to wear and use.

That was a rarity, as in the almost 13 years that I have been on a daily regimen, I do not think I have missed taking my pills for more than 15 days in total and probably quite less than that. There was one time when I missed taking my pills for 2 nights in a row and that was out of carelessness, I was away from the weekend whilst I thought I had packed my pills, I had in fact left them on the table at home.

That was over 10 years ago, and what that taught me was always to have a spare set of pills for that emergency of being caught out by circumstances I could not control.

Pills on a rampage

My fastidiousness with the medication is a complete turn-around from before I was started on antiretrovirals, for I had many fears and concerns, initially, it was the thought of the pill burden; the number of pills I had to take any number of times in a day and for how long. I heard people were taking pills in the double figures more than once a day, the medication had to be stored in the fridge and much else, but that was HIV medication history.

I had my own baptism of fire into pill chaos, that was after I was discharged from hospital. I had a whole range of pills and medication, antiretrovirals twice a day, opioid pain management every 3 days as a patch on my skin, different pain killers and analgesics addressing different kinds of cancer pain, thrice, four times, and six times a day, some depending on need, anti-emetics, suppositories daily, then chemotherapy, every three weeks.

For the first few months, I was occupied and preoccupied, this was the world I was afraid to entertain before I fell ill, and I told a few friends as much. My reality brought the requirements for this pill Armageddon, I could understand how the prospect of what might be ahead could scare anyone, it is a complete recalibration of life and lifestyle to meet your medical needs.

Each case is unique

Then, side-effects, too much information swirling around, and I had a good few from the obvious, as nausea and vomiting, insomnia, diarrhoea, itching, bloating, tics, and other kinds of discomfort, the loss of taste for proteins, like I lost my taste for fish or eggs when I was on chemotherapy. However, it was all that preconception of entering any kind of HIV therapy that became a barrier to my seeking medical attention as soon as I should have.

I can say now that there are so many improvements to antiretroviral therapies and medications, the pill burden is much less, usually one combination therapy pill daily, the side effects are not as bad, apart from a slight high some 90 minutes after I take my medication, I am fine. I prefer the regularity and routine of pill-taking to the possibility of an injection every few months.

Blog - An injection for my pills

The pill keeps me well and healthy, my CD4 count has risen considerably, and I have had an undetectable viral load within two months of being on antiretroviral medication. I have been on the current regimen since May 2010 apart from a 2-month trial of another drug in 2018 that did not work for me.

Blog - 12 Years on ARVs

The pills are out of patent and sourced as generics, each circumstance is different, but despite what we have heard or read, we must always avail ourselves of treatments tailored to our needs rather than out of the experiences of others, no matter no similar the symptoms are.

In Telling

In Telling: The spirit that sustains

The Hillsong controversy and resignation

Conduct with consequence

I would hate to stand in judgement on the conduct or abilities of another person. Yet in the lives of others, there are lessons we learn by example or the absence of the same to become better people. A few weeks ago, the Global Senior Pastor of Hillsong Church resigned from the church hierarchy that the church alluded to be certain breaches of the pastoral code of conduct in the last decade.

The two issues investigated together from almost a decade ago and in 2019 were serious enough to require that the co-founder with his wife of Hillsong Church from 1983 resign his commission. Apparently, Pastor Brian Houston in the first instance sent inappropriate messages to a woman who was not his wife, in the second instance, he visited the room of another woman and spent some time in her company.

Medication taking the blame

One should not speculate on what might have happened, but it is obvious that there were lapses in the judgement and definitely questionable conduct on the part of a high-profile religious leader. However, what does not sit well with me are the reasons given for these lapses in judgement; a dependency on sleeping pills and apparent disorientation as a result of the consumption of antianxiety medication combined with alcohol.

Why a man of God cannot sleep or needs to be on anti-anxiety medication that he ingested beyond the prescribed dose along with alcohol during a major global church conference is one might have to ponder and is open to conjecture, much as it speaks to the inadequacies and frailty of our humanity, regardless of position or status.

Owning up to our actions

Yet, we should be honest and ready to own up to our indiscretions, mistakes, errors of judgement, or irresponsible actions, whether sober or inebriated. To absent ourselves from consequence for our actions by reason of diminished responsibility or mental incapacity brought on by what we have consciously done is at best cowardly, if not dishonest, but let us not jump to conclusions.

For a church leader in the evangelical and Pentecostal circles to vacillate and dissemble when much of their core teaching is on leadership is quite unfortunate. I have given up friendships for what ex-friends have said about or to me in their drunken state because that is how they felt about me all along, the alcohol removed their inhibitions and sense of judgement or restraint to reveal what was in their hearts. To separate the man from the bottle or their addictions to excuse and overlook their actions, is to suggest all agency is lost when under the influence.

Admitting to our own faults

We might well excuse drunk drivers who cause accidents by their carelessness, maybe even gun owners for shootings because it was the gun that killed rather than the person who pulled the trigger. No, we hold them responsible because as a society we expect people for face consequences for those actions.

Indeed, Pastor Brian Houston might well take the time to reflect on how his life’s work might court an ignominious exit and the far-reaching consequences of his actions. The loss of place or status is a great sanction, and there might be redemption with the passage of time, but a man, if he is to be called a man must stand up and face what they are responsible for whether under the influence or not.

The owning up to “I did this …” has not been fully admitted to, rather it is the sleeping pills, antianxiety medication, alcohol doing the heavy lifting, what we are hearing is a tendency to seek absolution by reason of rather than the clear admission of fault by the person. This is where we need to be, his actions might have been exacerbated by medication, but the real story is the action of the pastor, that is what he resigned for. It is a matter of character as much as it is of integrity.

References

Hillsong: An important message from the Hillsong Global Board

Blog: Hillsnog: How the scandals at Hillsong took root

Not your typical pill take

 The nightly pill take

So, let me take my pills,
That holds at bay the ills,
When I once had the chills

Then I weep at peristalsis,
Probably in need of analysis,
Water in throat paralysis

And in a moment, it goes down,
Though with rice, I almost drown,
That I can’t even pull a frown

Many years these gems I swallow,
Just as sleep will soon follow,
Not that I want to wallow

But to take the very attitude,
In much great and deep gratitude,
The medicine keeps us renewed.

An injection for my pills

My will for the pills

When I think about it, I have what I might call a health-year, the biannual visits to see the consultant in charge of my HIV management which has been under control with antiretroviral drugs (ARVs) for just over 12 years with two changes of medication that I handle very well.

Until I fell seriously ill in 2009, one of my concerns about what to do was around the pill burden, too many experiences and stories had given me the idea that ARVs were difficult to store, you took many pills several times a day and the side effects could be unbearable.

I guess by the time I left the hospital with a medication trailer of pills to be taken 8-times, 6-times, 4-times, thrice, twice, and once daily, along with the chemotherapy every three weeks, I knew my life was totally changed and would change radically if I were to keep alive by adhering to that pill regime.

Adapting fine to routine

With time, I was left with ARVs of just 3-pills to be taken once a day, and an antiviral prophylactic drug to be taken twice daily. On later chemotherapy sessions, I needed an anti-emetic to help keep the food in. One large pill taken an hour before the session and the two smaller pills for one each of the next two days.

The ARVs affected the bowel movements that I was put on a single-pill medication that I have been on since May 2010 apart from the change in late 2018 that lasted 6 weeks that did not work for me, I returned to the medication I was having rather than try something new. My pills are a nightly elevenses, they work for me, I have had an undetectable viral load for over 12 years and my CD4 count has been increasing appreciably. Those are the markers for the state of my health.

Good, but not ready

Last week, it was announced that the taking of daily ARVs can be replaced with injections taken every two months, or 6-times a year. Two injections, apparently to help many who have problems with the daily pill taking and the disruption to their lives. I do appreciate the usefulness and need for this, though I seem to have adapted when to the daily pills, I do not think I am mentally predisposed to this possible change to bi-monthly injections. [BBC News: First long-acting injection for HIV approved]

I get my prescription every 6 months for a 6-month run, and my day is planned around ensuring I take my pills as required, my weekly pill box laid out every Sunday and kept track of as diligently as possible, I might just be averse to change after having perfected this routine. Altogether, I doubt I have missed my medication up to a dozen times since the 30^th of September 2009.

Now, I might well consider an HIV vaccine if that becomes available as a yearly jab taken like a flu jab that would have the efficacy of keeping the viral load undetectable and the virus completely at bay. Until then, whilst I do not have the numbers, I am happy with my pills.

Knowing pain is personal

Pain consumes you

Pain is a feeling that goes deep into your core that could be such a distraction from everything else keeping you in the discomfort that seeks to become the normal of your current existence.

Pain is the moment, it has no past or future, it is now, calling out to every nerve that has any element of response, you cannot be unaware of it being there, a dominating sadistic force of otherworldly provenance.

I once knew what pain was, the pain of cancer and yet in knowing that I am always reticent to associate my experience with that of anyone else, because we all feel pain so differently, it is individual and unique, it is personal for which the prescription, if it can be eased, is particular to that situation.

Pain refusing to go

I was on morphine but after two nights I could no longer tolerate it, I was overcome with emesis they had to try something else. Then, it was oxycontin which worked for a few hours and late at night, I would call the nurse for another pill because the pain was interfering with my sleep.

Before I left hospital, I was given a Fentanyl patch, which was supposed to last a week affixed to my skin, but the pain still seemed to announce itself in my consciousness and this was apart from the three other types of pain medication I was on addressing neuralgia, headaches, inflammation, and fevers.

When I told my oncologist, I was still feeling some pain, he doubled the dose of the Fentanyl patch having first thought the original dosage should have dealt with the pain. I did have a high pain threshold, but if you had fungating tumours in the sole of your foot it was just on another level. Then as the tumour dissipated and necrotised skin came off with fresh skin replacing the once blackened flesh, the pain from cancer remained for months afterwards.

What becomes of the pain afflicted?

At the full healing of my sole, the pain subsided but I had to wean myself off the patch by halving it and leaving it on for longer, a process that took another 3 months. It was a revelation of how opioid pain relief can become addictive.

Just over a week ago, on my Twitter timeline, a physician undergoing chemotherapy for aggressive cancer wrote of the pain she was feeling. I could relate, yet I could not find the form of words to offer comfort, I just knew that somewhere you needed some alleviation and hopefully without the incapacitation that you cannot function at all.

Pain can be arresting, what becomes those for whom nothing can ease their pain? It is of them that I hope beyond hope that relief comes that they might find comfort, peace, and rest. In my case, the consultant also had some confidence that we could see the end of it if I responded well to the treatment and that is how I find myself writing about it 12 years after.

Pain in my blogs

Blog - In hospital to kill the pain

Blog - Getting off the pain train

Blog - Generally responsive and dealing with pain

Blog - Stronger medicine and another course of chemo

Blog - Boldly tell your doctor everything

Blog - Off and back on the pain patch

Blog - Opinion: Where addiction and tragedy can confuse issues

Opinion: Between statistical and personal side effects

Logs out of my eyes

A good deal of my job involves the gathering, analysis, and interpretation of activity and error logs. As I am not on site to observe with my own eyes the environment, situation, or circumstances that create issues, I am left with deducing from the jumble of logs, the what’s, the how’s, and the why’s of things.

Sifting through and parsing data in the language and the numbers to determine patterns to follow; the logic or sequence of events almost becomes second nature. You can scarily come to some conclusions with such certainty, you might begin to doubt if you have read the situation right, even if you are usually right.

Then, how do you account for bias or possible error when assessing data presented from other environments outside your professional purview? Clarity is essential and, in the presentation,, you need to see what is clearly known, what is definitely unknown, what is still in dispute, open to debate and inconclusive, and the direction of travel towards tying up the loose ends.

Making sense of what’s out there

Nowhere is this more pertinent than in studying the recent developments around the COVID - SARS-Cov-2 vaccine, in particular the Oxford/AstraZeneca vaccine. That it has courted so much controversy started with the bungling of the test profile first with the dosing and then leaving the over 65s out of the cohort.

Since then, there have been reports of blood clot incidents post-vaccine which have not yet been proven just as it has not been conclusively disproven that the vaccine is the cause that might have resulted in 9 fatalities. [EMA - COVID-19 Vaccine AstraZeneca: benefits still outweigh the risks despite possible link to rare blood clots with low blood platelets]

A personal experience of side effects

Whilst a cost-benefit analysis would lead experts to suggest the benefits outweigh the risks, that is a statistical thing that works for the majority but not for the individual that presents the cases of serious concern. I remember being put on Triumeq a few years ago, it was to replace my Atripla regimen.

I was to detach a card from the Triumeq package, one of the side effects was instant death, that was scary enough. However, I did not tolerate it that well, the side effects diminished my quality of life, I recorded in a diary 42 days of insomnia, nerve-tingling, unexplained sudden joint pain, nausea, diarrhoea, it was hellish that I asked to be put back on Atripla without considering any other options.

Now, whilst I have been on Atripla since May 2010, I had a few neurological and cognitive issues, vivid dreams, simulated psycho-activity as if I was on psychedelic drugs and insomnia, but over time, I had developed coping mechanisms for toleration and satisfaction with it. Other people have psychological and psychiatric issues evoking suicidal thoughts, depression and worse.

Report side effects always

Statistically, both drugs are amazingly effective at controlling the Human Immuno-deficiency Virus (HIV), the side effects are generally tolerable, however, to the individual that is more than just a statistic to accommodate the percentile for drug approval, the issues cannot be ignored. That is why we are invited to participate in the Yellow Card Scheme for reporting adverse drug reactions, medical device adverse incidents, defective medicines, and counterfeit or fake medicines.

On the vaccine, I took the first dose of the Pfizer/BioNTech vaccine just under 4 weeks ago, I am glad it was available, and it offers me some protection including taking consideration for my frequent visits to South Africa. I had to check the side effects and possible drug interactions with my current medication with the view to raise concerns if necessary.

Praise and accountability matter

The success of getting the vaccine to most adults in the UK is commendable and it puts us well ahead of Europe. It was a gamble that paid off, being first movers that presented UK patients as Guinea pigs with a recalibration to allow for a higher proportion of first jabs to full inoculation. That being said, there must be accountability for the rotten debacle of the loss of lives at over 126,000 people and the exorbitant Test and Trace regime that did little to contain or control the virus when it really mattered.

We can in the dearth of good news run away with the slither of good fortune at the expense of other things or adopt a more pragmatic approach, being able to see the bigger picture, giving praise where it is due and excoriation where it is deserved. No one issue is mutually exclusive of the other, they are all part of the narrative where you see the rose, the thorns, or the whole bush.

References

[EMA - COVID-19 Vaccine AstraZeneca: benefits still outweigh the risks despite possible link to rare blood clots with low blood platelets]

[The New York Times: AstraZeneca’s Covid-19 Vaccine Is Found to Be 79% Effective in U.S. Study]

[BBC News: Covid vaccine: US trial of AstraZeneca jab confirms safety]

[MHRA: Yellow Card scheme]