Sundays of willing to will

Missing from church

Last Sunday, I had a lie-in. It would have been one church service to attend as it represented the beginning of the judicial year, a civic service with the High Sheriff of Manchester being the main celebrant ahead of the judges, lawyers, officers and officials of the law, the civil service, the mayoralty, along with county and council officials.

As a church steward, apart from ushering in the congregants, some lead the officials in procession at the beginning and end of the service. I would have been no use in the setup as I would not have had the strength out of fatigue and other discomforts.

Selling funny remedies

Yesterday, I was up quite early and had at first wondered if I would attend the sung eucharist at church, but with the force of will over the concerns about my ability, I got up, showered, dressed up and hailed an Uber taxicab to take me to church.

As my voice was in the spectral end of waned, as I explained to the driver the apparent predicament, I was regaled with a tale of a black Frenchman who had herbal cures for cancer. A friend of his had refused medical treatment and shelled out about £1,500 for these medicinal goods that were packaged in something to make you draw a sharp breath that he had been conned.

It transpired that his friend having cut out meat, changed his diet and ingested these snake oil concoctions on presenting himself for new medical tests had not eradicated prostate cancer, however, it seemed contained and stable for years after, and his doctor advised he continued whatever was helping this non-progression of the cancer.

Making the medical case

All through, I had my misgivings, no effective medicine for prostate cancer sits in a backwater grotto to be purveyed on YouTube channels where the spirit of hypochondria can so easily possess you and you believe you have any ailment that presents without an effective diagnosis.

I took his word for it but made the case that if medical science has clearly diagnosed a condition, medical science must have the last say on whether that condition persists or has been cured. Whatever route you choose to procure a cure is left to you by miraculous intervention, medical treatment, or some herbal remedy that seems efficacious even if not subject to any peer review, just the positive reviews of patrons of that service.

The more pertinent issue is that we should all get tested and be assured of our situation, knowing there is nothing to worry about or that something demands immediate attention.

Easy does it

I arrived at church to a hearty welcome from everyone as I took my seat and well, sat through the service except for the reading of the gospel and when I went for communion. In the end, I was offered decaffeinated coffee, and chatted to other friends, before I was given a lift back home.

I realise there is a lot I desire to do, but much of it cannot be done because the strength and capacity are not there. Sometimes, it is just the thought of a journey that wearies me that my better judgement is to abort the idea. The side effects are still a bother, it might take a while to fully recover.

The Village Church I did not even bother to attend, though, I must send them a note about the end of my treatment and my recuperation.

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.

Photons on the Prostate - IX

Time shows up again

It never really occurred to me until a few minutes ago that fifteen years ago today, I was discharged from the hospital after an eighteen-night stay for a myriad of health complications manifesting in skin cancer, that ride back home to the security of my castle was the beginning of seeing life beyond cancer.

This afternoon, I completed 20 sessions of hypofractionated radiotherapy for malignant prostate cancer, I left the suite to ring the bell thrice to signal once again, life beyond a second and different episode of cancer.

“It was a bell of hope and expectation to us, the sound of enduring survival of the human spirit, and the herald of the beginning of the rest of the ringers' lives, free of cancer and thriving after cancer.” [Photons on the Prostate - IV]

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Appreciation and consideration

For this last day, I had planned to thank the receptionists and the multidisciplinary team separately with cards and gifts, I felt they were professional, friendly, considerate, caring, engaging, prompt to act, and exhibited good bedside manner understanding the kinds of human infirmity and vulnerability we all face. A little gesture of appreciation goes a long way.

Having discussed the issues with my prostate behaving like a kettle on the boil, they arranged for palliative medication to address this discomfort. The pharmacy had a 30-minute wait time for service requests; after my radiotherapy, I had forgotten to pick up my prescription, I was already halfway home when I remembered and returned to the hospital to retrieve my goods.

The last radiotherapy session was uneventful; however, I was given advice on how to manage symptoms, calling the hotline, which is open 24/7, and the possible follow-up appointment post-treatment in about six weeks.

In the aftermath of all this

I wished everyone good luck as I left the radiotherapy suites, 20 weekdays that began 4 weeks ago, quite daunting a prospect and how the passage of time helps pale into insignificance. I have not acquired a taste for still water, I am so looking forward to feeling that fizz on my tongue.

I still have dishwater (decaffeinated) Earl Grey tea and Nescafe instant coffee that I might drink in remembrance of this episode in my life, God forfend this becomes a habit. Then, I stripped off the transparent Tegaderm film dressings that protected the three tattoos I acquired for positioning me on the gurney of the linear accelerator. You might get marked by cancer; you do not have to be defined by it.

Photons on the Prostate blogs

Blog - Photons on the Prostate - VIII

Blog - Photons on the Prostate - VII

Blog - Photons on the Prostate - VI

Blog - Photons on the Prostate - V

Blog - Photons on the Prostate - IV

Blog - Photons on the Prostate - III

Blog - Photons on the Prostate - II

Blog - Photons on the Prostate - I

Blog - Men's things

Men's things - XXI

Piss on the boil

As I prepare for my last session of hypofractionated radiotherapy for prostate cancer, I seem to be made more aware of what until now was an invisible and unheralded presence and function of the prostate gland.

With regards to the side effects of radiotherapy and apart from the fatigue that to various degrees has impacted my capabilities, the bowel issues have been quite manageable, whether constipation is preferred to diarrhoea is beside the point, the former offers less of an embarrassment.

It is the bladder and urinary functions that have given me more discomfort. Surely the prostate gland has not turned into a kettle, boiling the piss just as it begins to traverse the urethra, but that is how it feels, a hot to stinging sensation that you feel both happy and concerned to have, each need to ease oneself announced at the cacophony of all organs at play.

Changes in symptoms and perceptions

The International Prostate Symptom Score (IPSS) which I filled in twice in July with two weeks between assessments about my personal perception of how easy urination is, has precluded me from consideration for brachytherapy, however, with an enlarged prostate, it was never in the running. [MedScape: IPSS Calculator]

After 19 blasts of radioactivity, the prostate has had a bashing and a bit more inflammation with bladder outlet obstruction, when I spoke to the radiographers yesterday, during the pre-radiotherapy scan they noticed my bladder retained fluid, despite having just been to the toilet. It was not completely emptying but that should improve with time. My Incomplete Emptying score has increased.

The Frequency of needing to urinate had increased over the last week, along with the Urgency and Intermittency, and every time, I am Straining to start, then a Weak Stream follows. Having made accommodations for Nocturia, the number of times I get up to pee at night does contribute to insomnia. How my prepubescent and adolescent bedwetting days have long gone. [Blog - Childhood: Atọ̀ọlé]

It would get better

If I were to add up the IPSS score this morning, it would be severely symptomatic of benign prostate hypertrophy. However, we are beyond that, as malignant adenocarcinoma of the prostate has been diagnosed and treated, along with the dreaded onset of erectile dysfunction (ED), something we rarely discuss about masculinity and performance. Still, with time, even if mild forms of ED remain, all is not lost compared to what a prostatectomy might have offered. [The NHS: Benign prostate enlargement]

The Quality of Life due to Urinary Symptoms I assessed as mostly satisfied before treatment just over two months ago, I will raise the discomfort to be mixed, though I reckon things will improve and there are palliative measures to help the bowel, bladder, and sexual functions. My treatment is successful with checks and monitoring over the next few months and years.

This blog could easily have been classified under Men’s things as it could have received a Photons on the Prostate heading; I have plumbed for the former.

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

Blog - Men's things - XX

Trading away health

Are we aware of the harms?

Attending a cancer hospital is a revelation of how medical science is progressing in the treatment of cancer, and none of what I have witnessed or experienced suggests the treatments are cosmetic salves that soothe you.

The treatments are radical, irreversible, usually impactful, and could be life-changing on the completion of treatment. Early in my treatment cycle, one of the nurses who gave me advice and support had a voice box. I do not intend here to introduce the fear of cancer but to provide a perspective on why we should actively avoid harmful practices.

Every time I see someone light up a cigarette, I wonder whether they might end up in a cancer hospital and hopefully, they might have a favourable prognosis. The discovery of the cigarette-lung cancer link was evident from the 1950s, but the conspiracy of capitalism put tobacco conglomerate profits above global health. [National Library of Medicine: Historical Perspectives of the Causation of Lung Cancer] [World Health Organization: Tobacco industry interference with tobacco control]

As we ignore the warnings

Warnings on tobacco product packaging including grotesque pictures of cancers have hardly served as a scary premonition to smokers, it is not like I could be effective in accosting a smoker on any of our streets and hoarsely tell them I am undergoing cancer treatment, and it is not a pleasant experience, considering it is neither indicative of errors commission nor omission.

The prospect of the suffering and life-threatening effects of avoidable cancer should be informative and cautionary enough, but human behaviour cannot be curtailed even in the best interests of the person. As a species, the quest to survive is equally matched by the inexplicable tendency to self-destruct.

Now, I had a wild adolescence, I smoked from the age of fourteen to eighteen, my preference was for menthol cigarettes, and I did consider at one time getting a tobacco pipe. My cousins had unfortunate parental guidance and adopted snuff, it shows how example creates followers and adherents, quite unwittingly.

When I stopped smoking just over 40 years ago, I simply lost the desire for smoking once I became a Christian. The only time I smoked anything again was 15 years ago when my live-in partner being both a cheese head and a pothead, got pre-rolled marijuana cigarettes and I had a puff or two thinking it might be a palliative for cancer pain. I am however glad smoking never became a long-term habit with the inability to wean myself off nicotine addiction.

Issues of fitness and weight

One other thing I have noticed at the hospital is how unfit we are as a country, there are too many morbidly obese people, with some needing wheelchairs to get around. Even when I consider my weight and how certain aspects of my body do not conform to an aesthetic aspect ratio, I have sworn that once my treatment is over and I get my strength back, I will indulge in rigorous exercise to get fit again.

15 years ago, one of the effects of cancer was emaciation, I lost 25% of my body weight and though doctors then suggested I should carry a weight close to what I am now, I would rather be below 80 kg than find the scales show numbers that have horrifyingly shot up to 89 kg at one time. This event of cancer has hardly shown physiological symptoms, I could even be gaining rather than losing weight.

Dropping the excess baggage

Looking at metric measurements, I do a basic calculation that for your height in centimetres you should ideally not exceed that height minus a hundred for your weight. If you do not have the requisite height in the two-metre plus getting to seven feet category, you must ask why your weight exceeds 100 kg.

There are things we can do in terms of diet, exercise, rest, and checkups to keep healthy and hopefully not need a visit to a hospital or a cancer-related one. If warnings cannot do it, we should have some apprehension about the future and what harm we are doing now.

Illness can easily rob one of our sense of youthful invincibility that usually tends to delusions of immortality, some consideration and I aver, care for our bodies can give some of us assurance and a fighting chance that we won't be plagued by something destructively harmful out of what we are doing or what we have failed to do.

Thought Picnic: Comparing my encounters with cancer

Comparing cancer treatments

Fifteen years ago, I was on the receiving end of a cancer diagnosis, and it was the first day of treatment with chemotherapy. Everything was predicated on my ability to tolerate the gruelling onslaught on my body that was eventually delivered every third week on a Monday for seven sessions.

By comparison, between chemotherapy then and radiotherapy today, the latter seems more tolerable though, just as exacting on your body. Chemotherapy was then necessary because, besides the obvious cancer lesions on one sole and the emanating tumours on the other sole, there was a likelihood that cancer could be in different parts of the body.

Rather than try to determine all the localisations of the cancer, chemotherapy with its cytotoxic ability to kill cancer and some healthy cells in the body seemed the best option against radiotherapy. In the case of prostate cancer, this was still contained and localised with the prostate gland and my options were between prostatectomy or radical radiotherapy, and I opted for the latter.

Effects on the body

In terms of side effects, chemotherapy knocked me out by the beginning of the third day, there was no strength to do anything and that was also exacerbated by the inability to keep food down so I had to be given anti-emetic medication. Within the first five days after chemotherapy, I also had to be careful that no one had any contact with my bodily fluids as it was toxic to healthy people.

I was not prepared for the shock of being cordoned off in my section of the hospital ward and any nurses who needed to draw blood had to take full hazardous materials (HAZMAT) precautions when approaching me. That little piece of detail was not communicated in our pre-treatment briefing.

While I believed I would survive Kaposi’s sarcoma, I do not think I was thinking of fifteen years ahead to reencounter cancer in my prostate gland. During the preview of options for treatment, I did ask if chemotherapy could be a treatment option for the prostate and the view was except in the case of metastasis, it was not a viable option.

Experience or newness

I guess my thinking was having tolerated chemotherapy well before, a second experience would not be as bad. However, it would have left me less able to do the usual things with the need for constant care and monitoring as I had back then in the Netherlands.

I write this not to celebrate cancer but out of gratitude and thankfulness that I have been fortunate to survive cancer and tell stories of the triumph of humanity over adverse events through medical intervention and so much more, the mercy and grace of God.

References

Blog - Waiting for chemo

Blog - A life of cytostatic ostracism

Blog - A primer on cancer and chemotherapy

Photons on the Prostate - VIII

Fatigue is the issue

If you have been following my blogs over the last few weeks, the reason I have not given an update is because of exhaustion, I have been maximising the periods when my energy levels are high on activities on a priority scale.

In terms of the fatigue brought on by my radical radiotherapy treatments, I have not been able to schedule when I would have the strength to do anything. I take the rest when they come and the insomnia that results simply sweeps in without me being able to control the situation.

It is now obvious that at certain times of the morning into the afternoon strength wanes, and then late at night into the early morning, I feel much better about doing things.

A voice that wanes

This week has been one of many meetings I have prepared for but I found my facility and ability wanting. It started with a call from my GP and from the get-go, it was obvious they had very little knowledge of radiotherapy-related fatigue. The smart money was to chat to the radiographers and the doctor at The Christie Hospital, they know what courses of radiotherapy do to the body and they addressed the side effects with understanding and allowances required.

The thought of attending a 90-minute meeting on Tuesday left me concerned about whether I would make it through the first 30 minutes. When you feel weak, using your voice first belies that weakness and speaking is almost as energy-sapping as normal vigorous exercise. Eventually, your expression begins to wane and fade, and noticeably so. The conference lasted just under 95 minutes, on cancer support care and services available to me.

However, on Wednesday, I had favourable scheduling to address some activities assigned to me first, I apologised for my low energy levels as the morning was full of meetings and the afternoon session was at the point that I was ready to throw in the towel. My determination was to see it through and so I began, my voice a raspy whispery tone, slow and laboured, I made my points and successfully shepherded half my intentions with the other attracting three apologies from an interventionist that should have done their due diligence earlier.

My performance did not go unnoticed when someone opined that I was unwell and struggling. Struggling, I was, unwell, I definitely was not, and while fatigue might feature on a wellness spectrum on the lower end of it, it should not be confused with infirmity and incapacity. I fight the battles I can and retire when I need to.

Walking to full exhaustion

With enough time in hand before my hospital appointments, I boarded buses to my appointments though, on Wednesday just as the rush hour began, we were caught up in such a traffic jam, that I knew I could not walk the remaining 2.9 kilometres to the hospital, but I had to disembark to see if I could walk past the bottleneck.

My strut was excited and brisk, but I also felt as if, at any moment, I could just crumble and collapse in my stride. I willed myself on with the thought, not today, we’ll make it. About a kilometre later, I was beyond the constriction and an apparently traffic-free way looked ahead. I was also approaching a bus stop, having skipped about 10 buses ahead of my original one, I boarded the next arrival and got to the hospital in time for my 15^th radiotherapy session.

That walk was the most exertion I have had since I began treatment 3 weeks ago, in the 15 minutes that I was lying on the linear accelerator gurney, I had a catnap. My journey back home on the bus had me dozing off a few times, any of the last three stops if I missed any, I would still be close to home.

It’s now 4 to go

Yesterday, the session required an early start, and the bus journey was quicker, but my usual suite was very busy. For the first time, I did not have to present my scheduling sheet for a new time to have five in hand. We agreed yesterday that if the full schedule of appointments had been provided from the onset, it would have been quite psychologically daunting for the patient.

Giving you the first five and then for each subsequent day one is added to pace you without creating a burdensome and overwhelming schedule. It might affect your ability to plan well ahead of time, but it is very manageable.

I was called into another suite, my sixth in sixteen sessions, one of the radiographers had a Nigerian heritage as she was unsure of what her state of origin was even as her surname which typically would be of a northern origin was from the Midwest. I did hear my name called in the correct intonation, but we make all sorts of assumptions about people that might not be valid.

With that done, we now have four to go, I like to look at this in percentage terms, we are 80% done and I am drinking lots of cranberry juice too.

Blog - Photons on the Prostate - VII

Blog - Men's things - XX