Give the Doctor Somewhere to Go

Why reading your own clinical results and asking the right questions turns a consultation into a collaboration.

An AI-generated infographic on the blog content. (Click to enlarge.)

An Unexpected Appointment

Once again, I found myself in hospital, more times than I would have liked in a single year. I have lost count. I had no reason why this appointment had been scheduled, and my anxiety was not assuaged when, just over a week before, I received a call telling me to attend the diabetes centre.

It was a poorly delivered message. The department I used to attend had been relocated to what was once the Diabetes and Endocrinology Department, but you can imagine how I felt until I received clarification.

In any case, it would have come as a great shock, because nothing in my blood test results indicated any cause for concern in that area.

A Confusing Journey

When I did set off from home, I realised the bus was running seven minutes late. Although I had given myself enough time to find this new location, my appointment notice had not been updated accordingly. So I returned to the old place, where the receptionist registered me before advising me to take a seat.

A few minutes later, the receptionist came to tell me I had to go to another department. She gave directions, but the signage left me navigating a labyrinthine route, unsure whether I needed to explore further down or check with someone else. I did eventually find the place, and it was kitted out like a temporary setup, with patients barely out of a daze from the trouble of getting there.

Checks and Confusion

A nurse called out my name to check my height, weight, and blood pressure. Having arrived later than expected, and given the discombobulation that ensued, I feared the readings might be high. I took deep, controlled breaths and folded up my sleeve; they fell within the normal range. Phew!

Half an hour after my arrival, another nurse came to check what I was there for; it seemed the relocation had also introduced inefficiencies. Apparently, I had been invited for the second jab of the HPV vaccine, which, when I took it, proved quite painful.

Being My Own Advocate

This is part of my personal medical advocacy. Literate people should spend some time reading and understanding their clinical results, because doctors sometimes do not have enough time to tease out the issues with you. 

I recognise, too, that not everyone can do this alone; those constrained by education or digital access may need a trusted interpreter, whether a family member, carer, or advocate. That is precisely why those of us who can engage should and could do a little more.

When I do raise something, it is rarely idle curiosity. My questions are usually a way of satisfying myself whether a course of action is genuinely necessary. If you notice something outside the normal range in your results, bringing it up immediately elicits a response, whether an assurance that there is nothing to worry about, or an investigation requiring further tests.

Working With, Not Around

This is where prompting matters. When my consultant noticed my name on the board and invited me for a chat, my question about the creatinine levels gave the conversation somewhere to go. Those levels had been off the scale in late July, indicative of either an infection or kidney problems; if it were the latter, a change of medication might enter the fray.

Had I not raised it, the consultant might reasonably have assumed there was nothing more to discuss. Advocacy of this kind is not working around the doctor; it is working with them.

Along with the vaccine, a urine test was ordered, and late last night the results returned well within the normal range. I did not need a doctor or a consultant to tell me that, and my concerns were immediately allayed.

Essentially, we underserve ourselves in the quest for the best clinical outcomes if we leave everything to doctors as omniscient experts on our bodies, when we should be doing a bit more to keep them apprised.

A Gemini Notebook AI Podcast on this blog

The Just Can't Wait Card Test

The Tale of Two Responses

It was eventually going to happen: a moment when I wielded my Just Can't Wait Card and was met with a Just Can't Be Bothered apathetic response. It was yesterday, just before 7:00 PM, when I alighted from the tram at Cornbrook, slightly pressed and hoping to make up the shortfall of my daily 10,000 steps.

As the breezy chill of the cold hit me, my bladder was at bursting point. I needed to go and go now. I turned into the entrance of one of the new developments and showed my card to the concierge, pleading to use a toilet on their premises.

She gave it no consideration, expressing the fear that if her manager found out a non-resident had used the toilet, she would be in trouble. Lady, the reason I came here was that I have a medical condition. I need the respite borne of your human kindness to allow me access. Surely, no manager of human provenance would think helping someone with a medical condition is so bad as to warrant a sanction. Common sense should prevail.

It fell on deaf ears; this conversation was going on as Brian was on the other end of the phone. She then said I should try the Co-op shop around the corner, to the front. The daring I once had of telling anyone who refused my entreaties that I would do whatever was pressing standing in front of them deserted me.

A Worrying Contingency

In the worst-case scenario, I would have wet myself and depended on my incontinence underwear to save my blushes in the 30-minute walk home. However, I did go to the Co-op shop and showed my Just Can't Wait Card. The lady at the till immediately summoned the store manager.

He explained that there were no customer-side toilet facilities, but he would take me into the back of the store and would have to wait outside until I had finished. The difference? Human compassion with a sense of humanity, rather than the readiness to sacrifice suffering on the altar of keeping the rules. More so, it is the presence of initiative, agency, and autonomy.

I had this large, disabled-equipped convenience to myself for as long as I wanted, and I was done in a few minutes. I thanked him profusely and made for home: relieved, succoured, and comforted by understanding human beings.

The Absence of Initiative

My earlier experience made me wonder: beyond manning the concierge desk, if any resident had suffered an emergency, would this concierge have risen to the situation to help? I would be quite doubtful, because she would be thinking her manager would upbraid her for any attempt at being human. It is best not to be distracted by the other descriptions that are present in what could be hitting below the belt.

My condition was manageable. I would not want to extrapolate on a more serious condition with someone else, who needed the presence of mind, the abundance of initiative, and just a modicum of courage, with the beating heart of humanity. How would our conscientious concierge, attending to her duties in the strict diktat of the letter of her contract of employment, have responded?

Names and Places

On getting home, I wrote to the management company of that apartment complex. I may not get a response, but what it takes to escalate this episode by averring to the press that there are certain establishments in this friendly Manchester city of ours, heartless apparatchiks are in customer-facing roles, oblivious to the charitable consideration of the disabled or those with medical conditions.

Heck, I have been in places where I had neither my card nor a Radar key, and I was allowed the use of their toilets and a place for respite before I continued on my way. The talk on this matter is not over yet. Names and places to come in due course.

A Google NotebookLM AI Audio Overview Discussion of this blog

You Are the Boss

A Grateful Return

At the hospital today for my biannual check-up, where I have been under consultant supervision for just over a decade, one can be grateful for good health and wellbeing.

Arriving with 20 minutes to spare before my scheduled appointment, the nurse was already coming to reception for me to take measurements of my blood pressure, height, and weight.

The Numbers Game

I seem to have lost a few centimetres in height, gained more kilogrammes than is comfortable in weight, and my blood pressure was unusually high. I put the weight down to winter clothing, though I could lose some, and my blood pressure could be due to the anxiety I sometimes suffer about getting to the hospital on time. This is even though I practised calming down when I realised my bus was running seven minutes late.

I must have been quite self-involved about my weight when the nurse taking my readings could easily tip the scales at about 50% more than the figures I was posting. In fact, her uniform was likely reinforced at the seams with Kevlar threading, because any exertion on her part could have her literally spilling out of her dress.

Observations in the Waiting Room

The lesson, as I sat in the waiting room to be called in by the lead consultant for my assessment, was that each person had a gait—from plodding to brisk—proportional to their bodies of various sizes. This suggested the quest for health and healthy bodies is a daily struggle, whether you work in healthcare or not.

One lady could also do with a change of shoes; the heel on the left foot was so worn from the outside to the inside that the bend alone could introduce a bow-legged, rickety condition due to wrong footwear rather than childhood vitamin deficiency.

An Evolving Consultation

In the consultation room, where the consultant knows me by name, we had the company of a pregnant doctor as an understudy. We went over the usual things: physical, mental, social, and other matters I needed to have in consideration. It is always easy banter, and for the first time I heard it from senior medical personnel without having to assert it.

I reckon it is a kind of maturation that visits veterans in their field—having experience but not using it as omniscience. To a recommendation that I was yet to be convinced of, she said, "You are the boss." I hope that meant, "You make the final decisions about your medical pathways," rather than, "You fool, I'm giving you the best advice and you're being stupid and obstinate."

In the process, I extended the blood profile to check specific elements rather than the broad indicators. The session with the nurse phlebotomist was easy, without complications, then I collected my six-month prescription before returning home for some much-needed bed rest.

Let us, with a gladsome heart, be thankful for health.

A Google NotebookLM AI Podcast on this blog

Men's things XXV: Prostate cancer under control

Gathering my thoughts

There are many things to be grateful for: life, health, relationships, friendships, hope, faith, and the love that conquers all.

It's now been over a year ago that I began the twenty sessions of hypofractionated external beam radiotherapy for prostate cancer, the aftermath of which includes an extended time of monitoring and care. [NHS England: Hypofractionated external beam radiotherapy in the treatment of localised prostate cancer (PDF) 25 pages.]

After meeting with the multidisciplinary team in March, in conversation, I was to be seen again in 4 months, but the letter to my doctor indicated 5 months. But I received no appointments, so I had to consult the oncology department secretary about it.

It took her just over three weeks to respond. That was after I placed a phone call to her number and left a message that got a nurse to call and plan to be seen within three weeks.

Reviewing the process

Any appointment would have required first doing a serum prostate-specific antigen (PSA) test and getting the results before the appointment, and the secretary gave me just 6 working days to my next appointment to get that done.

Thankfully, for my Monday appointment, my GP surgery invited me on Thursday to provide a blood sample, and I was able to access the result on the NHS app last night.

I was concerned because the PSA results from February 2024 and the 5 test results altogether have fluctuated in ways that if I had not taken decisive action to act on the possible presence of prostate cancer by urging my doctor to be engaged, responsive, and proactive, the malignancy would have continued untouched to a seriously life-threatening situation.

This is because, in early February 2024, the PSA was borderline high at 3.5, then 7 weeks later at the end of March 2024, it had risen to 4.0 and needing further investigation, that started with a Digital Rectal Examination (DRE), through a multiparametric MRI (mpMRI) scan in April 2024, an ultrasound-guided transperineal biopsy of the prostate gland in May 2024, and a stage-2 prostate cancer diagnosis in June 2024 with the recommendation that I undergo active treatment.

Making your decisions towards the best outcomes

In July 2024, I made the choice between a radical prostatectomy and radical radiotherapy, opting for the latter, though on seeking a helpful opinion from Prostate Cancer UK, the nurse thought it was better to opt for active surveillance or watchful waiting.

I was not going to wait to watch what a clear diagnosis of cancer was going to do in my body, and worry myself silly about what I could have done on the back end of having this knowledge. That was the last time I called Prostate Cancer UK, because having come this far, I needed encouragement and support, not dissuasion.

As I prepared for radiotherapy, we had another PSA test at the end of August 2024, and it had fallen to 2.0. That sneaky thing could have been a dangerous signal to abandon treatment, as the reading had fallen below the danger zone into the normal range. However, that did not mean the cancer had suddenly disappeared. Either way, I was going through with the radiotherapy.

This began on the 12^th of September 2024 for every weekday until the 9^th of October 2024, and I worked through it, even as the side effects of chronic fatigue and bladder issues took hold. A month after treatment, I took an extended sick leave that lasted just under 2 months, spending most of that time with Brian, caring for me in Cape Town.

After treatment monitoring and beyond

When I went for my first post-treatment checkup in early April 2025, the PSA test I took, the previous week at the end of March, read 2.6 and this was the cause of my concern and it led me to question the reliability of the PSA test as an indicator of reduced prostate agitation, especially after radiotherapy, but then I also realised that the period of recuperation could be long, as exemplified in my strength, and voice.

My reckoning was that if the PSA result did not fall at my next appointment, I would request a second mpMRI scan. I am glad to say that on my receipt of the results last night, that might not be necessary as the PSA has fallen to 1.3 micrograms per litre (µg/L).

However, for my meeting on Monday, I am on alpha blockers since that regulates prostate function, since October last year, and I might be on that for some time, and I have had two episodes of epididymitis in May and August. We might have to discuss the hows and whys of that.

Apart from the occasional insomnia, the fluctuations in my voice, irregular occurrences of fatigue, and some restlessness that besets me at various times, I am doing quite well and happy with the improvements, grateful for the support from many people who have helped me through interesting times.

When I am presented with the opportunity, I talk about men’s things, the need for us to be conscious of the health of our bladders, bowels, prostates, testicles, and sexual organs. These things matter, and catching anything going awry early is of the utmost importance.

Here’s to life and living. Thank you.

References

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

Blog - A prostate cancer diagnosis, one year on

Blog - Photons on the Prostate - XVIV - I Just Can't Wait

Blog - Men's things - XXIV - A presentation

Blog - Men's things - Prostate Cancer blogs

Thought Picnic: Between fight and plight

In the flight of fight

I have always been ambivalent about the idea of battling cancer, especially when it is said that someone lost their battle to cancer as if they were not fighting enough to defeat the enemy that has both violated and invaded their bodies.

On completing my treatment course of radiotherapy yesterday, I received many congratulations, and this is not because I have passed a test or navigated some difficult terrain to emerge the winner of some prize, I was taking treatment that seemed harmless, but the side effects are quite unpleasant.

Thinking back to fifteen years ago when the consultant offered the prospect of just five weeks to live or thrive if I could tolerate the treatment, I learnt something about dealing with infirmity and cancer, in particular.

All contribute to it

Advances in medical science learnt by experts taught to students, and with patients in the centre of the whole situation have contributed to the body of knowledge that informs how cancer is treated. Both those who survived and those who died in the record of their experiences redound to this compendium of knowledge that is delivered as expertise when we consult with medical experts.

In my view, there are no winners or losers, no soldiers or deserters, some like me, who have been fortunate, others not as much, and that is a sad story in the human narrative. Advances in science seek to reduce the number of the less fortunate and everything we can do to eradicate all forms of cancer by prevention or treatment must have us all in that endeavour.

I take the congratulations with gratitude because they are wishing me well. Sometimes, the fight with cancer is more one of a mindset about it, rather than of some pugilistic fight to exhaustion without rules to the bout.

Just as being fortunate

The greater fighting chance we have with cancer is to have caught it early and be presented with a menu of options for treatment leading to good outcomes without too much pain, suffering, or discomfort.

Having encountered cancer twice and been given the best medical science can offer to treat it is indeed fortunate, in the Netherlands fifteen years ago and in the United Kingdom now. Our model of social medicine which is free and accessible to everyone at the point of need, is the epitome of human civilisation that could pass for a human right.

I am fortunate to be European because anywhere else would have cost a fortune to diagnose and treat cancer, some running out of money before anything effective could be done. Sometimes, we do not realise how precious health is until it is touched by infirmity, there but for the grace of God go I.

Men's things - XX

Insist and be insistent

Some encounters with the medical establishment can be unbelievably sublime and others exhibit inertia and obduracy, you might find pulling teeth a greater pleasure to enjoy. Here I was trying to get a sick note that I was told was easily obtainable and assured would be ready on Monday only to meet with a bureaucratic reluctance to fulfil what clearly everyone concerned knows is needed.

As with these things, I insisted against their prevarication, eventually someone cottoned on the idea that I was here for new excuses or postponements, something had to be done and so they sought out a late shift doctor and somehow found a stache of ‘Statement of Fitness for Work’ forms to be annotated and initialled by the doctor.

Their first attempt was clumsy, signing me totally off activities and the hospital stamp was upside-down. My reaction brought a reconsideration, and they did it properly with the caveats I wanted. It was an easy enough job with the will and opportunity to do it, hardly an encumbrance, this is a hospital, for crying out loud.

Just that spike is all you need

As I was chatting to a doctor, I also felt I could ask about the last two blood tests conducted a fortnight before my first radiotherapy session, my glimpse of the blood form indicated both the Prostate-antigen specific (PSA) and testosterone levels. I could not find the results anywhere as they were not communicated to my GP.

My PSA had fallen to within normal levels and testosterone was reading levels on the low side of the normal range. There must have been some other indicators in earlier blood tests to suggest I did not need hormone therapy before radiotherapy as testosterone has never been in the cachet of tests I have done before.

If I had not unilaterally pursued the need to recalibrate readings from my blood tests in February towards remediation by intervention, we would never have been on this track to discover prostate cancer and it might have been seething and growing undercover, but for that spike in my PSA in March that forced an investigation.

Do the graft on your bloodwork

It is no doubt incumbent that anyone with a modicum of literacy must take immediate interest and seek to understand what the results of blood tests are whether they fall in the normal ranges for your demographic and where they do not, ask questions and be unrelenting until this is explained in the simplest of terms. Err towards interventionism than otherwise, cancer is not something you wait and see grow like a wild weed in your body.

Demand answers and seek a second or even third opinion, speak with experts and learn all you can to be sure you are getting the best treatment towards the most beneficial outcomes. If you must go private and have the means to do so, do not count the cost and end up paying a costlier price.

The goal is the best outcomes

It took 7 months to get from my first request for a blood test to where the prostate cancer is being effectively treated with radiotherapy. I will cover in more detail sometime in the future, why I opted for radical radiotherapy over a radical prostatectomy. It was about the post-treatment quality of life more than anything else.

If anything, and for about 15 years, I have learnt and understood that your biggest advocate for the best outcomes when engaging the medical community is you, your voice, your initiative, your instigation, and your relentlessness. You are the centre of your diagnostic, prognostic, and therapeutic options. Remember, it is always your body first before it is their Guinea pig, that premise is non-negotiable.

Men's Things Blogs

Blog - Men's things

Blog - Men's things - II

Blog - Men's things - III

Blog - Men's things - IV

Blog - Men's things - V

Blog - Men's things - VI

Blog - Men's things - VII

Blog - Men's things - VIII

Blog - Men's things - IX

Blog - Men's things - X

Blog - Men's things - XI

Blog - Men's things - XII

Blog - Men's things - XIII

Blog - Men's things - XIV

Blog - Men's things - XV

Blog - Men's things - XVI

Blog - Men's things - XVII

Blog - Men's things - XVIII

Blog - Men's things - XIX

Drought in bladderland

You’ve seen it all before

I guess when it comes to health and medical issues you must forget to be embarrassed and face things with, well, an injection of humour.

When I was in hospital in late 2009, I needed to have a shower and I was in such dreadful pain being supervised by a nurse. She pulled the curtains to shield me, but in that state of sheer vulnerability, it meant nothing to me.

I simply told her, "In your job, you have seen so much that I do not care for what you see now", as I invited her to scrub my back and hose me down. We can be precious about the common things, when in the hospital, honesty, frankness, openness, and truth matter more than anything to get the right outcomes.

A drought in the bladder

So, this morning I got a call from a nurse at the GP surgery, we know each other, and she wanted a sample that I could not produce on demand. Well, after waking up and everything with the ablutions there is nothing to give.

As the conversation progressed, I asked if this could be medically induced, like cloud seeding the bladder, that sort of thing, you should never give the medical establishment those kinds of thoughts to work on.

For want of a better word, we agreed that I could visit when I am pressed and at the surgery, I’ll be given a container for it. Then, it might just need fear or terror to unwittingly wet yourself, why that surprises me when I once had juvenile enuresis is interesting. All they want to do is take the piss.

Blog - Childhood: Atọ̀ọlé (October 2010)

Men's Health: Do the important and intimate checks

Looking forward

I have noticed an enthusiasm with which I talk about becoming 60, I am hardly 2 months into being 58, yet, next year is the golden jubilee. I first noticed this when I attended a group session that involved yoga exercises, I could not help but notice my apparent flexibility as compared to many of the younger participants. Our yoga instructor herself is 60.

However, it is not just a matter of age but one of wearing it well, the whole body positivity discourse also involves a bit of work on our part, it should not be a license to just let everything go. Indeed, we should be happy with our bodies, especially with the things we cannot change, things we can change with regards to losing pounds/kilos, healthy eating, a bit of exercise, and basic medical check-ups must be attended to.

Screenings galore

Those things have had my medical minders harping on about what should be checked and noticed so issues can be caught and dealt with promptly. The other day, it was the NHS sending a bowel cancer screening kit that required a sampling of my stool for analysis to be sent in the post for a result that thankfully meant there was nothing to be concerned about. This, I am informed, would be checked every two years.

Another range of issues that have come up have to do with blood pressure, diabetes, prostate cancer, liver and kidney function, and cholesterol checks. Most of these I have twice a year under my regular clinical checks apart from the prostate cancer prostate-specific antigen (PSA) test. This has come up in a few discussions in group sessions and even closer to home but has been left unattended to.

Blood tales

When the results of blood tests came in just over 2 months ago, I found that my mean corpuscular volume (MCV) and mean corpuscular hemoglobin (MCH) were reading beyond the normal range on the high side and indicative of both Vitamin B12 and folate (Vitamin B9) deficiency. This would mean despite my consumption of red meat and other aspects of diet; I was not getting enough from food and even supplements. All other indicators are normal.

This issue of Folic Acid Deficiency Anaemia came up about 7 years ago and I took supplements for it that subsequent readings came within range. It is the symptom of peripheral neuropathy in my right hand, that got me a bit concerned that I had to call my GP surgery for a conversation, and this meant I was in the surgery early this morning to give blood for a whole battery of tests to assess basically everything.

Eye on the future

It is not only for peace of mind, the knowledge about how your body is performing can allow for the necessary adjustments to keep you well and healthy. I know it is difficult for men to broach and discuss intimate health issues, but what is worse is leaving it to a point when you literally have no other options apart from facing terminal and possibly managed decline.

Having once had life-threatening cancer almost 15 years ago, I am aware of the need to be informed and understanding of the conditions in my body. There are probably times I have been fatalistic thinking I did not have much time left and did not effectively plan for the future. There have been such great advances in medicine and outcomes, then the good results of tests conducted over a decade that would suggest that I have been miraculously blessed to have better health, fitness, and strength than I have had in decades.

This calls for apprehension and anticipation, regulation, and planning, even so, the consideration beyond self to others with whom one shares life, experiences, hope, and a future. If anything is to be learnt, it is, health is wealth and men need to do the healthy to remain wealthy.

We can treat this

Commending medical advances

Confidence without a tinge of arrogance or boasting, just a good sense of understanding the situation and how to deal with it is one of the far-reaching lessons I learnt about the Dutch medical establishment, specifically related to my situation.

I qualify this because whilst I had the onset of AIDS presenting as cancer, some other close friends who had been diagnosed with different kinds of cancer did not make it. It was September, Dick came to visit me at home after I returned from hospital in October, that was when I last saw him, we spoke sometime in January, and he was gone by the 2^nd of February.

Marcella, a very gregarious and generous Dutch-Indonesian, I had seen in August when she persuaded me against my inclinations to attend a party at her place. I was in pain that she shared some of her painkillers with me. She had had cancer which had gone into remission, but it returned aggressively in the New Year and by October, she was gone too.

It is against this backdrop that I appreciate everyone who has ever faced cancer, because whether we live or die, their medical experience redounds to the body of knowledge that helps to define outcomes for others. Hopefully, better outcomes too. To all who have had that human cancer experience, I am exceedingly grateful.

Life or just 5 weeks

For instance, Fela Anikulapo-Kuti, the internationally renowned Nigerian musician died of an AIDS-defining disease presented as Kaposi sarcoma, 12 years before I had the same condition, and I cannot speak for the kind of medical opportunities he had then. Kaposi sarcoma lesions were for the while definitive of the onset of AIDS and it was a downward spiral from then on.

Blog - Remembering Fela (1938 - 1997) through our shared history of AIDS

However, when the professor visited my beside the day after I was put on ARVs and suggested the treatments offered theretofore were not producing the desired outcomes, he had a new plan of action and with confidence he said, “We can treat this …”, the only caveat was whether my body could tolerate the bombardment of chemotherapy, for if I could not tolerate the treatment, I only had 5 weeks at best.

Blog - Scuttling cancer with chemo

How I fared with chemotherapy

I was put on liposomal doxorubicin (Caelyx), all the basic information was given me some 4 days before my first session of chemotherapy, the only thing I was not told was about cytotoxicity, the fact that as the treatment killed living cells, anyone coming in contact with my bodily fluids, especially blood had to don biohazard clothing, and I was to be in an isolation cordon whilst in hospital.

I eventually had 7 sessions of chemotherapy on Mondays, 3 weeks apart, by the 3 session the cancer lesions had begun to disappear with the need to remove necrotised skin and allow fresh new pinkish skin to show. I tolerated it enough, though, by the fifth, I needed extra medication to deal with the emesis.

It was 12 years ago, when I was being informed of the decision to put me on chemotherapy that the consultant said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.” That confidence added to my ability to see beyond the circumstances I was in.

Thought Picnic: In terms of the friend I have become

Unwittingly winning battles

Sometimes, we are unaware of the lessons in adversity that through what we have lived and experienced become the pointers for others in their times of trouble. When in my own situation out of ignoring the essential and the circumstances of disease progression, I came within 5 weeks of expiry according to the prognosis, I had no other choice but to face what was ahead of me.

There were battles I had to fight, mostly in the mind and usually unseen in the pain, the fears, the uncertain, the unintended, and the anxieties that could bring on debilitating worry, in those, I could not afford to be defeated, my circumstances were part of life, and people do live it, for it belongs in the spectrum of the human experience.

Acceptance leads tomorrow

The other issue was cancer, that I could neither battle nor fight, not with my already ineffective immune system nor with some pretense of mind over matter. I had to rely on the efficacy of the drugs and the treatment hoping that my body could carry me through the ordeal to a form of survival and recovery.

The greatest battle was in my mind, the transition of responding to pain alone whilst being in total denial of my condition to the point when I accepted that this was serious, I had cancer and so, what next? Once providence and I were in agreement that things were going to look and get better, we were on a long hard journey to recovery.

You are first in your situation

Inadvertently, the gruelling encounters with medical personnel and medical science have informed me of how to seek and obtain the best medical outcomes for whatever situation is under review. Whilst not getting doctors and consultants to second-guess themselves, it is important that they are convinced and convincing of what course of action to take.

If at any time I have had to encourage anyone, it is to be appreciated, respected, and treated with dignity. The superiority of a doctor’s knowledge, experience, and expertise should never be ahead of you as their subject and patient, it should be subject to your understanding with detailed explanation of what they want to do, the purpose for it and the outcomes expected.

Afterall, it is your body first, before it is their Guinea pig. That truth alone is sometimes enough to give a new sense of purpose and acuity to your situation. To my friends, I am a living miracle, a message of hope, a teller of better stories, and as one so endearingly said and I have heard in different modes of expression, I am their role model of resilience. I am just thankful for the life I have been given and the example it lends to others.

That human touch is always necessary

Meetings for the body

When it comes to my health and wellbeing, I look forward to my biannual medical consultation not with any anxiety but in anticipation of presenting myself to my consultants who have overseen my health over the last decade.

For instance, when I get the opportunity, I would like to return to Amsterdam and see the professor who first took on my care and gave a glowing reference reflective more of my personality than my medical condition, it prepared consultants in the UK for an interesting patient coming under their care.

My longer-term consultants have been in Manchester, in Wrexham and in London, I only had a few months of interaction before I was referred on to others. The reference from London brought me in contact with my first consultant who has retired to embark on humanitarian activities in Asia.

Meetings for the soul

When he left, my new consultant sent a letter of introduction from which I researched her background and career activities, I was better read up on her than she was on my medical notes, from it a relationship has developed that we are quite pleased to see each other when I go for my appointments.

The medical matters are quite quickly dispensed with and we get onto matters of life, of the heart, of happiness and much else. A patient is more than the notes and the medication, doctors who explore beyond the medical into the person and personality hopefully have a more rewarding doctor-patient experience and it helps them know that what they are doing contributes to demonstrably improving the quality of life of their patients.

Meetings for the mind

Another thing I enjoy visiting the hospital and consulting room is we sometimes have medical students sit in on my consultations, something I welcome. I engage with the students, find out their intended specialisms and encourage them that what they are doing makes the miracle of medicine possible in the lives of people like me.

However, with this pandemic, that last time I saw my consultant was last year. I had a telephone consultation in April and a rescheduled one from next week to today this morning. It is very likely my next appointment in April next year will also be a telephone conversation.

Meetings for the touch

We were able to pass considerable information between ourselves from the medical to the personal, but it was over in about 20 minutes as she had a full book of calls to make. That interpersonal connection was lost even though we deployed the art of conversation to the best we could. A 15-minute window was scheduled for phlebotomy on Monday when I could also pick up my prescription for another 6 months.

All other indicators were good apart from a concern with how one of the components of my combination formulary interacts with cholesterol. That will be monitored and reviewed for our next session. Much can be done with technology, but you do without essential human contact and interaction, especially in medical settings. I would suppose my next human touch will be at the prick of a needle, something I am used to and I am happy all is well.

Clinical Notes

History in bodily detail

A 4-page printout from my local clinic this morning details a two-year medical history drawing in information from London, Wrexham and Amsterdam about observations, diagnoses, prophylaxes and treatments for a condition that is in its 15^th year.

Reading through, I am somewhat amazed at the ability of the human body to face the onslaught of infirmity and find recovery in help from medication, the state of mind and just sheer good fortune, to which I can only say, I have been blessed.

Under pressure to be at ease

Whilst away on a course yesterday, I received a call from my clinic to visit for a bicep cuff encounter with a sphygmomanometer. Yes, when I was last at the consultant’s just over two weeks ago, my blood pressure readings were a matter of great concern.

We agreed for an appointment for this morning and I walked up to the clinic just a little over 250 metres away. Observing the lady who went in, in front of me, she did not stop at the reception but touched a device where she entered her gender and date of birth to be informed about who she would be seeing and where to wait.

It is all now electronic, so I touched the device, entered my details and when the name of the nurse came up, I cross-referenced with a chart to the left of the device on a noticeboard that told me I should wait on the 1^st floor.

Don’t you worry ‘bout a thing

Just under 10 minutes later, I was called into a waiting room where my blood pressure was taken twice, with the second reading much lower than the first and both readings considered normal. However, I was told if there was any indication of abnormal blood pressure, I could be put on a 24-hour monitor to gauge what my blood pressure is on a typical day.

We discussed my meeting with the consultant two weeks ago, the suggestion of prophylaxis for pneumocystis carinii pneumonia (PCP) which was decided against without a consecutive blood test with similar indicators, I was told I needn’t worry about it. My drug regime might be changed in 6 months because the drug is now out of patent and there are more affordable variations of it, though I am not under any obligation to change them if I don’t want to.

In all, it was pleasant and I was back home within 30 minutes of leaving, looking forward to a more eventful day. Despite the many problems the NHS has, I owe a lot to the NHS for my health and wellbeing; long may that continue.

On the milestones of health checks

A schedule ahead

The highlights of my year or rather the more obvious plans scheduled far ahead in each year for over six years now has been my appointments with consultants.

People with vast medical expertise who I face on many occasions to discuss the state of my health, what discoveries have been found, what diagnosis has been arrived at, what the prognosis is, what prophylactic or therapeutic course of treatment is available and eventually what decision has been made in the end.

The cosy conversation

Whilst it is literally impossible to affect the bedside manner of certain dour and boring doctors, and I have met a few, in the main, I have met quite outgoing, understanding, engaging and interesting consultants. This makes for a better environment to discuss issues and many times things in a broader context of life, livelihood, and living.

I get on well with consultants who despite their status, achievement and authority have a listening ear, a sympathetic mien, and a completely unprejudiced view, regardless of what the subject becomes in our conversation.

Many faces seen

It is a bit disconcerting that in England, I have rarely had the pleasure of meeting with consultants that have been assigned to me at the times I have booked my appointments, which is quite different from meeting consultants in The Netherlands or in Wales. Maybe a better scheduling system is required, however, I am told that is how the department is able to attend to a wider number of patients.

On Thursday, I was in hospital and again, I saw another consultant, I always do my research about consultants, see what they qualified in, what their research projects were, review academic, research and professional papers they have written and what conferences they’ve contributed to.

Be read up

At one point the consultant had to accede that I had done considerably more research on her, her background and on some of her personal life than she had on me with the little time she had to glean through my medical file. It has become common practice to elicit my medical history from me than wade through physical or computer files, I am comfortable with that.

In my view, it is incumbent on a patient to be versed with their condition so as to be able to give knowledgeable information and most importantly, you can ask better follow-up questions in relation to how the discussion develops. This helps ensure that any decision made with regards to medical expectations and outcomes takes into consideration your concerns, your anxieties and also your expectations too.

A glad finishing

Beyond the medical, we talked about professions, hobbies, travel and the general things before I was booked for some tests that included a visit to the phlebotomist and two future appointments to review my situation.

I do look forward to these hospital visits and the more prepared I am for the consultation, the better I feel afterwards. I always take notes and in particular the key indicators that come from the blood tests, which gives me a general indication of what my health condition is and so far, I am doing very well.

It is easier to take an Uber cab ride to the hospital than getting one back and I have on occasion ended up getting on a bus going in the completely wrong direction as I did on Thursday. It didn’t bother me, I just got back on the bus at the terminus and rode back until it got me to the ethnic minority superstore where I stocked up on ingredients for my local cuisine before getting back on the bus on the same route that got me back to my street.

Thought Picnic: Hope shortens the day

Of news you cannot change

11 years ago, he heard and learnt with confirmation that life will be different; it will change and be the determinant of the future whether it be long or short.

He took the news with stoicism, aware that events that led to this conclusion could only have been his fault and so he had to face the consequences of his actions.

However, at the back of his mind, he reckoned that much as he had allowed those circumstances, he could not condemn himself in the things that he had allowed. Regrets will not change the facts of the new life ahead of him.

Where hope is

The day could have been long with anger, the night following with depression, the future looming with thoughts almost suicidal, every waking hour filled with worry and the will to live sapped of all its verve that tomorrow will never come.

He did not let that dominate his thinking, for beyond this was the possibility, the realisation that the missing component to the hearing of such news is hope.

For hope takes you from today to the next, it gives you expectation of change however remote it might be, it shortens the day and ushers in the morrow continuing the cycle of life for renewal.

Keeping on

That hope, despite all, has kept him going, through thick and thin, much and lack, excess and privation, having and having not, and it still shines as a beacon of things to come.

For the many milestones that the 20^th of September represents, he will not faint; neither shall his sight fail to see that things will only get better and that the best is really yet to come.

Here is to life and all the experiences that have become an elixir of life.

Related Blog

Thought Picnic: The sentence of death in ourselves

Opinion: Overruling Extremist Opposition to Expert Medical Opinion

The Blood Transfusion Debate Again

Almost six years ago, I could not find the words to describe and condemn the needless death of someone by reason of extreme religious beliefs where a simple medical procedure would have saved life, avoided sorrow and provided essential parental and matrimonial succour to the children and the husband of the victim. [AkinBlog]

Then a 22-year old having given birth to twins had lost so much blood that she needed a transfusion but because she was a Jehovah’s Witness, she and her husband refused treatment that could have saved her life, she exsanguinated.

Against Expert Medical Opinion

Recently, this issue of religious belief attempting to override good medical practice came to the courts in Northern Ireland where a judge decided that a man with severe learning abilities had the right by reason of not being able to understand the consequences of adhering to a belief system that could endanger his life to be protected by the state. [CourtsNI]

He was to undergo a number of dental surgery proceedings that had outcomes that might require the use of blood products that Jehovah’s Witnesses proscribe, particularly, blood transfusions – in my 2007 blog, I did suggest that it was pragmatic to obtain blood transfusions from a patient’s bloodline.

Personal Consent is Fundamental

Crucial to this decision was that, he “is not capable of consenting to his own medical treatment” due to “a history of global developmental delay of unknown aetiology”, his mother was seeking the right to decide on his behalf positing that, he “seems to enjoy attending church and has positive social contact as a result”, thereby, he is as much bound by the belief systems she espouses to be accorded the strictures that constitute the dogma of the sect. [Wikipedia]

The judge, based his views on the ECHR suggesting ‘At least two articles of the European Convention on Human Rights (ECHR) were relevant, the judge noted: the second, which guarantees the right to life, and the third, which outlaws "inhuman and degrading" treatment. But legal precedents indicated that a treatment aimed at preserving life could not be considered cruel.’ [Economist]

Anachronisms of Ancient Thought in Modern Times

Now, whilst a religious sect might have scriptural basis for whatever belief systems they espouse, as the Economist notes, “transfusion for medical reasons did not exist in Biblical times; this is one of the many difficulties that arise when codes of ethics that were devised for life in the pre-modern desert are applied to the 21st century.”

I could not have put that better in determining the reasonableness of context, application and perspective necessary for a common-sense decisions today.

The conflict between treatment necessary to preserve life and the religious freedom to determine whether to take such treatment should not exist if the person concerned is able to comprehend and use the information under medical guidance to appreciate the consequences of their decision.

Incapacity Defaults to Medical Opinion

That is usually catered for in an Advance Health Care Directive also known as a living will which “is a set of written instructions that a person gives that specify what actions should be taken for their health, if they are no longer able to make decisions due to illness or incapacity.” [Wikipedia]

However, this requires the person be full aware and capable of making the decisions in the directive prior to incapacity. Where the directive is challenged, it there is precedent where the judge has denied the execution of the Power of Attorney, requiring the patient be able to decide for themselves, failing which the law will side with expert medical opinion. [RTE]

An Uneasy Compromise

I am wont to believe that the Jehovah’s Witnesses exhibit an unsavoury kind of religious fundamentalism and extremism based on teachings and new interpretation of Scripture dating back only to 1870, even if they aver that they are “a millenarian restorationist Christian denomination with nontrinitarian beliefs distinct from mainstream Christianity.” [Wikipedia]

Much as I will like a situation where religious beliefs do not overcome reasonable medical intervention, the Economist ends their piece with this – “a consensus is emerging that people of more-or-less sound mind can, if they so choose, put their lives at risk by refusing certain treatments; but they cannot impose that risk on dependants who for one reason or another cannot decide for themselves.”

It is an uneasy compromise but the decision not to follow medical advice or extricate oneself from procedure by reason of conscience must be made by the individual concerned and should never be transferred to someone else.