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

Thought Picnic: Sometimes forgetting cancer is tough living

Misreading activity in illness

Sometimes, it takes another to bring a clear perspective to situations and things that you are in the middle of, leaving you blindsided to realities around you or impairing your objectivity and sense of judgment.

It is something you really cannot put your finger on, that you lack the mode of expression to convey. Worse still, when you find yourself writing about these issues, people might conclude everything is going well, if you can still write.

This recalls the period in late September into early October 2009, I was gravely ill and admitted to hospital and yet from my hospital bed, I was blogging, my brother assumed, if I was still blogging, I was fine. Little did anyone know that at prognosis, the worst-case scenario was I only had 5 weeks to live.

Looking on the bright side

In my two encounters with cancer, that we have taken the more positive view of a life-threatening situation does not change the fact that life hangs in the balance. Maybe the biggest battle is in the head rather than with cancer, the question being what your outlook is about a cancer diagnosis and what you hope for.

Then, even when people lose their battles with cancer, that does not mean they have not had great positivity through their ordeal, the cancer simply overwhelmed their bodies. I still aver that those of us who survive cancer have been fortunate to still be around to tell our stories, it gives us all some hope amid shifting odds.

It was quite serious

I am still grappling with the notion that in late June last year, after the diagnosis of adenocarcinoma of the prostate, I found in the doctors’ notes to each other that it was malignant. That information was never shared with me, and it took days for me to share the information with Brian. It came with a blank stare into an abyss, I did not know what to expect. I took each day as it came.

There was foreboding that anything could be the last time it was being done, but I had to put that kind of thinking away. The battle raging in my mind needed tools to see the better of things and I worked on bolstering my Christian faith by listening to sermons on faith, healing, and living well. I had to see myself getting better while a killer lurked in my reproductive system.

Just a mechanical switch

Gosh! Thanks to Wikipedia, it all makes sense now, “The prostate is an accessory gland of the male reproductive system and a muscle-driven mechanical switch between urination and ejaculation. It is found in all male mammals.” [Wikipedia: Prostate] The simplicity of a mechanical switch and the trouble I have seen, I am thankful for every great and small mercy.

I chose radiotherapy over surgery because I felt the prognosis and time to regaining the mechanical switching function having possibly lost the ejaculatory part and having little or no control of the urinary part would be long, arduous, and debilitating. Radiation would target the cancer regions, retain the switching mechanism, with varying side effects affecting bowel, bladder, and sexual function managed with medication and some lifestyle changes.

Strength even in illness and recovery

Much as I seemed to power through this experience, very few people saw the real effects and consequences of tackling this cancer apart from my partner, my closest friends, my neighbours, my colleagues as my natural voice became strained - a fatigue-laden expression, and some limited social encounters.

What I have to appreciate for myself is recovery and recuperation will take time, willing myself to do much more to regain a new sense of normalcy, I shy away from the expression, “out of the woods”, I am not in a forest of doom and despair, rather, I find myself on a journey to a wonderland of beauty, strength, and success , all obstacles giving way to a superior vehicle, the power of human faith to thrive in the midst of adversity.

While cancer is a rotten disease and the process of treatment and recovery can be debilitating, energy-sapping, and incapacitating, whatever strength one has can give one the impetus to look ahead, not because one is not ill, but there is much more to look forward to. I will not be defined by cancer; it is just part of a bigger story.

It took one friend to highlight how the last two years have been rather tough when another friend was too absorbed in himself to notice. Another story.

Homeward bound from South Africa

The weight of travel

Packing your bags is not an easy task, especially if you have three pieces of luggage to evenly distribute the weight, a rucksack with kit and medication, and suit bag.

The suit bag contained a set of pyjamas that for my recent modes of travel have not felt that convenient to wear, a jacket and scarf for the abrupt change in the weather I will encounter, and a spare set of incontinence underwear. If I may reiterate an established notion, I am a traveller, not a backpacker.

Intercontinental incontinence

When you are on a plane and there is a queue for the unisex toilets, besides rocking from foot to foot, you just want to be careful no spillage occurs before you gain access to the facilities.

On both my outbound and return journeys, it has not been that bad, and I have not had to wave my "Just Can't Wait" card. The moment I feel an urge, I do not second guess it, I make my way to the toilets.

I had scheduled my Uber pick up the night before, my assigned driver cancelled, the alternative was stationary just over a mile away for 20 minutes, and not responding to my communications, that by the time Uber suggested he was late, I was assigned a third driver who then arrived within 5 minutes of the scheduled time.

The ride to the airport was easy and fast, early morning bookings before the break of dawn can be a bargain too. He helped load and unload my luggage and I took tentative steps to the check-in counter close to the entrance.

Half a day air bound

Though I have lost my Platinum and Gold loyalty status, you still get some priority service on Silver Flying Blue status. My luggage was checked through to Manchester, and I was conveyed from the customer assistance lounge, taken through security checks and passport control to the boarding gate, then wheeled to the door of the flight where I was the second passenger to board.

Seating was comfortable enough, a slight seat recline, a lounge support for my legs, and a footrest, along with a blanket and a pillow. That was the beginning of the first leg of my journey of just 11h13, I guess I have done that a few times already.

A 3-hour stopover in Amsterdam before I board another flight to Manchester had me ensconced in the customer assistance lounge on comfortable seats. They should consider serving beverages rather than have people lumber off to the shops. A nearby toilet would be helpful too.

A chat with my support person

Then I was brought to boarding desk as one of the first to board. Arriving in Manchester, I stayed on the flight until everyone was almost off, my customer support wheelchair was up a flight of stairs and then I was conveyed to passport control and then to baggage reclaim.

The support assistant was from Somalia and after informing him of why I had travelled to South Africa, I explained why as a Black man he had to be conversant with his prostate health. His uncle recently had radiotherapy for throat cancer at the Christie Hospital and he had chaperoned his uncle a few times.

Between snatches of reality and humour, he got the message and point-blank refused a tip, he felt he had gained so much from our conversation and that was enough. I called an Uber for home and ended up in a luxury car, the driver from Africa had lived in Italy for two decades before coming to the UK.

You will always be understood

He was concerned about his lack of fluency in English that he felt was a handicap. My view was as long as he could put words together, he would be understood. He should always speak his mind and besides, many of those who would typically abuse him are not as successful as him driving an E-class Mercedes Benz, he should in fact celebrate his achievements.

Obviously, on some occasions, he simply got his son into the conversation with establishments or the authorities. Every likelihood was he would get whatever he intended done.

As I arrived at home, he helped unload my luggage and brought them into the foyer, all the help I received from door-to-door of about 18 hours was the preparation for rest after such a lengthy journey. I unlocked my door, my house sitter had outdone himself this time, somewhere between it having been hit by a super hurricane and a full ransack of the house, I was soon pushing a vacuum cleaner and brushing the floors. I found the energy; it was the very last straw.

John Coll: Helpless against a crooked executor

Our mortal powerlessness

Yesterday marked a decade since the passing of my friend and mentor John Coll. As a blogger, I would normally have written something to commemorate and memorialise the day. The blog I wrote last year was meant for yesterday, I was a year off.

Blog - John Coll: Friend, Mentor, Gentleman – January 2015

Blog - John Coll: Calling on Herbert Dzinotyiweyi to fulfil his wishes – December 2013

Much as I want to reflect on our friendship, there are issues of understanding trust and the powerlessness of keeping that trust when you are no longer in the picture.

It brings to mind when Queen Elizabeth II gave her Christmas message desiring that the Duchess of Cornwall as the spouse of the Prince of Wales become the Queen Consort when he assumes the throne. That wish lasted until the coronation of King Charles III when he as king regnant decided his consort would be crowned Queen.

The clear message there is that regardless of the desires of the much-loved Queen, once she joined her ancestors, the powerful effect of her determination had gone with her passing. There is only one monarch in a kingdom and this time, it was Charles III, we had left the Second Elizabethan era for the new Carolean age from the 8th of September 2022.

The danger of a sole executor

In the affairs of life, we exercise both choice and control to varying extents, our presence enables us to order, arrange, and challenge situations to align with our liking and expectations. However, in our passing, where we cannot exercise control or authority, we rely on trusted persons to fulfil our wills, testaments and bequeaths.

There is a clear basis for an executor of an estate and there is law and precept that governs that responsibility, yet it can be abused. John chose the ‘trusted’ financial manager of his company to execute his will, whether it would have been prudent to distribute that responsibility seeing that John had been an employer of labour and skill for decades is another thing.

When John passed on, the primary elements of his will, such as his funeral and the disposal of his estate were followed through and seemingly completed quite promptly. The other part of his will which included bequests to 10 individuals, mostly outside the UK did not get fulfilment.

Once the executor had seen the largesse of the estate the trust reposed in him evaporated into avarice and over years, he schemed to transfer the full value of the estate after probate of about £780,000 to himself. He might have siphoned it out of the country or gambled it away, but he also had another plan, for he had citizenship of Zimbabwe and naturalisation in the UK.

I was onto him in 2019 when I learnt that most beneficiaries of John’s will had not been informed, and those who should have known were kept from prying because the executor feigned complexity of managing the estate and the required taxes.

He escaped accountability and justice

As I was not a beneficiary, I could only inform and instigate in the hope that John’s wishes would be fulfilled, and accountability is looked for as pertains to the fiduciary duty of an executor. Sadly, the police mishandled the situation and allowed the executor a window of opportunity to escape justice leaving the beneficiaries bilked of consequential resources that could have been impactful on their lives if John’s wishes had been conducted.

The lesson here is not only in choosing a trusted lieutenant or friend to execute your estate, especially in the absence of close relations to do the same but in distributing that responsibility so that the executors can hold each other accountable and true to the requirements of the testator.

Whether John had any insight into the character or integrity of his executor, one cannot tell, but with hindsight, the executor was anything but trustworthy. Mortal man is at a loss, for a will has no enforcement until the person is confirmed dead and the same person is powerless to ensure that their will is totally implemented according to the spirit and the letter of will.

A thought on accountable executors

As a man of faith, one of the reasons why Jesus Christ had to rise again from the dead was that the will for man to have eternal life and a relationship with God came into force with His death and the shedding of His blood for our sins. He rose again to ensure his testament was followed completely, that in accepting His sacrifice on the cross and declaring Him Lord, He confers the same sonship He has with God the Father on us too.

Imagine if, at the implementation of a will, the testator had the means to ensure every jot and title of their will was fully done without any challenge to the executor or resorting to the courts to redefine or alter your intention, purpose, and desire. Trust is a fleeting commodity, when it comes to executing a will, please ensure you have built extensive accountability into the process.

It is not John’s fault that things turned out this way, I never had reason to question either his instinct or his judgment when he was alive, people change and when it comes to money and worse still, the love of money, it is the root of all evil, the unconscionable evil that consumed Herbert Dzinotyiweyi.

59 and blessed

Of great blessing

I must be one of the most fortunate and blessed men, yet I am usually unaware of how great mercy and grace have been bestowed upon me. I am thankful and grateful for each day that reveals nothing is of my doing; it is all by the grace of God.

Today, I celebrate my 59th birthday, and many events have occurred in my life that any observer would never have imagined this day would come. Even though I have not dared to think of it, I have just taken each day as it has come.

Of adverse circumstance

When this year began, I was celebrating the 15th year after a life-threatening cancer diagnosis that studies at that time suggested most people never get to live another decade. My story found a turning point at that cancer diagnosis; if I had finished my autobiography, my understanding of life, surviving, and thriving would have pivoted around it.

I never anticipated a diagnosis of malignant prostate cancer, which was confirmed in June after five months of tests and investigations to determine what we had to deal with. I visited Cape Town to see Brian after that diagnosis, quite unaware of what lay in store. It was a different kind of cancer that was invisible and painless but could have, if undiscovered, killed me.

Of living blessed

The only way I found to address my concerns was to listen to sermons about faith and healing. I knew I would undergo some sort of treatment and expected the outcome to be cancer-free. I undertook radical radiotherapy in September/October and have returned to Cape Town to recuperate and recover with the support and care of Brian.

I owe my life, my love, my joy, my happiness, and my belief in a great future ahead to God, my Lord Jesus, my partner, my close friends, my supportive colleagues, and every well-wisher who has offered words of encouragement and material help. Indeed, I am blessed, mightily blessed indeed.

Thank you.

Photons on the Prostate - XV

The need for quality support

When it comes to talking about cancer, I have had the best support from a Cancer Support Nurse Consultant (CSNC) recommended through support services with my place of work. We have scheduled monthly meetings where for sometimes more than an hour we can address all my concerns and issues around dealing with cancer.

Our first meeting which was via Microsoft Teams, and I insisted on an audiovisual engagement rather than plain audio, we talked for about two hours, and it involved giving her a full background on the process to the discovery of cancer and attendant issues.

Macmillan Cancer Support, the Christie Hospital, and my GP have been supportive but what I needed most of all was someone ready to spend time listening, understanding, appreciating, and recommending how to navigate a cancer diagnosis through treatment and recuperation.

I dare say my engagement with Prostate Cancer UK was a distraction. I was well on the way to having active treatment based on the diagnosis of malignant prostate cancer, but they thought I should delay treatment for active surveillance. While anyone would prefer not to endure surgery or radiotherapy, I could not postpone treatment for the comfort of normalcy while cancer was having a gnaw at my prostate gland.

The usefulness of helpful advice

My CSNC is a registered nurse and quite knowledgeable about many of the elements around pelvic area cancers. Most of the progressive solutions I have had to manage the symptoms and side effects along with after-treatment conditions have come through our conversations. Everyone else was just at the end of a telephone, she was there to be seen and heard. It made a whole lot of difference.

In our last meeting we talked about emerging symptoms and side effects with bowel functions. The literature suggested with radiotherapy, people have more issues with the bowel than the urinary or sexual functions. I however had serious urinary problems that I hardly noticed if bowel movements were regular and working as expected.

She then suggested the documented side effects are not essentially a textbook expectation, that side effects can occur at any time during and after treatment in no particular order along with the fact that for some people, they might not experience some side effects at all.

Some outstanding concerns to address

I was recommended to keep a diary of nutrition and excretion patterns, noting the regularity of movements to find what might be the issue beyond the healing process from radiotherapy. While my energy levels are improving, I still find that I tire easily, my need to use the conveniences intervenes with my comfort, and I need to sit down after walks.

Much as I want to believe I am doing well; I am still not where I need to be. I must consider if a phased return to regular activities is needed. That conversation can wait until late in January. What I must do now is relax, rest, recuperate, and recover. Manage the symptoms and side effects as best I can while celebrating the gift of life.

Blog - Photons on the Prostate - XIV

Blog - Men's things - Prostate Cancer blogs

Photons on the Prostate - XIV

Beyond radical radiotherapy

Three months ago today, I began radical radiotherapy for adenocarcinoma of the prostate. It is just six months after I received a confirmed diagnosis, and it needed immediate active treatment after consultation with a multidisciplinary team on options for surgery or radiotherapy.

I worked through the duration of radiotherapy and for a month after the completion of the treatment. However, increasingly, I suffered more impactful side effects that started with chronic fatigue, and issues with my urinary system that limited most outdoor activity as I needed to be close to available conveniences, and one unexpected effect was the way those elements appeared to affect my voice.

My voice became weak and strained, usually determined by my energy levels that was quite sub-optimal most of the time. While against what my body was telling me, I tried to continue as normal, I really had to take a break and have added domestic support that being at home did not offer.

Time off to recuperate

The decision to travel to South Africa while somewhat frail was not taken lightly, but I knew the essential support for my recuperation was best under the watchful care of my partner. I availed myself of all the customer assistance provided by the airline for my journey, no sense of determination could have propelled me through the experience.

I can attest there has been considerable progress, the occasions of fatigue are less frequent, the urinary issues while still needing medication have eased, the sound of my voice is much better with a few relapses, and the painful discomfort that needed opioid medication has completed gone and I have now totally weaned myself off codeine with minimal adverse effects.

The weather in Cape Town might have contributed to my recuperation. I can begin to consider a return to normalcy, which might take a process of reengagement. Much as I try not to have that preoccupy me and concentrate on recovery, there is a world to return to in the New Year.

Looking ahead

I am grateful for the support and care I have received through the period from anticipation when I first had exploratory tests in February, through further investigations, diagnosis, and treatment. My long-suffering partner, close friends, extraordinary neighbours, siblings, and colleagues compassionately accommodated my vulnerability with understanding.

Each time I present an update, I appreciate how it was fortuitous that we caught a high prostate-specific antigen (PSA) reading when we did because at the advent of my treatment, the PSA reading had fallen within the normal range, but for the fact that an MRI scan leading to a biopsy had detected Stage 2, yet malignant prostate cancer.

The need for men especially Black men over 45 to pay attention to their prostate health. Do the checks and have the tests, catch things early and have the best options for recovery.

Blog - Men's things - Prostate Cancer blogs

Blog - Photons on the Prostate - XIII

Other references

Prostate Cancer UK: Black men and prostate cancer

MedScape: International Prostate Symptom Score (IPSS) Calculator

Urology Care Foundation: Benign prostatic hyperplasia (BPH)

NHS: Prostate Specific Antigen (PSA) test

Prostate Cancer UK: The PSA blood test