Photons on the Prostate - XXI: Living with the Trade-Offs

Following the Rules

It is somewhere between following my own rules of "Go Before You Go", or the situation making the rule irrelevant because it simply did not apply. I left church yesterday feeling alright and planned my route home in the rain.

I stopped off at Marks & Spencer, hoping to get a Christmas cake: that thick icing covering the juicy and moist fruitcake, that bargain offer after the season, going for a song. They had everything but that.

I could have made for home directly, but I took a circuitous route, going through an arcade or two, hoping to see a cake shop, until I was approaching home from an entirely different side of town.

The Cold Walk Home

As I was walking through the breezy, cold, barely above-zero weather; a scenario that activates the bladder at a higher frequency and urgency. I quickened my steps, hoping to get home just in time. Much as I did enter the foyer intact, I did not make it into my apartment before an unfortunate recurrence of something I thought was history.

I can report that I have a sufficiently longer time between visits to the toilet, though I might wake up thrice during the night for that too. I do try to gauge what opportunities I have to get to places before I need to wield my "Just Can't Wait" card. It is, however, not an exact science.

Managing the Reality

This is something I have grown accustomed to living with. The apparent safety that incontinence underwear offers means the dangers of embarrassment are reduced. It is usually a leak, then a full wetting.

In view of this, getting rid of prostate cancer through treatment, rather than having full bladder, bowel, and sexual function whilst under the threat of cancer you cannot predict, is always the better option. I would write on the matter of sexual desire at some point.

References

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

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

Blog - A prostate cancer diagnosis, one year on

Blog - Men's things - Prostate Cancer blogs

A Google NotebookLM AI Podcast on this blog

Urinary incontinence: One of those prostate things

Not holding tight enough

I found myself looking at a range of men’s underwear for a particular issue when I realised that my sturdy resolve to postpone a nature call until a time when I could access suitable conveniences was leading to embarrassment.

The pair of red trousers I wore recently turned a dark shade due to wetness, but I was literally at my front door, and the little control I seemed to have before was no longer effective; I had just wet myself.

As it stands, this is the second time I have had to deal with urinary incontinence in a week. It is cause for concern as it is understandable that the complete resolution of prostate issues will take time.

Wear to wherever

For the long-haul flights to and from South Africa, my incontinence underwear cost a fortune, and their care required special washing machine bags with a low-temperature and gentle cycle programme.

Tena seems to have a more affordable range with less stringent maintenance and care factors to keep them in use. Most of the time, I do try to be near public conveniences, and it also makes sense to use them as often as possible, to avoid being so hard-pressed and causing a mishap.

Generally, these are for leaks rather than for full flows; containing this within the underwear rather than allowing it to show around the front and down the trouser leg could be a saving grace too.

Men's things - XXII

The post-radiotherapy situation

Three months ago today, I rang the end-of-treatment bell in the radiotherapy department of Christie Hospital. Twenty weekdays of hypofractionated radiotherapy administered to the cancerous parts of my prostate gland had begun to take its toll.

These three side effects that took hold started with chronic fatigue quite early in the treatment, then insomnia, and uncomfortable bladder issues increasing the difficulty in passing urine along with sometimes stabbing and sharp pains in the urethra. The fatigue affecting my energy levels seriously impacted my natural voice which regularly fades into a tired sounding voice belying other issues.

As I have reported, my recuperation continues apace. Though I worked through the treatment and for a month thereafter, the side effects of radiotherapy had become such that I needed to totally take time off to rest, recover, and recuperate while availing myself of essential care, help, and support of my partner, Brian.

Some side effects persist, the main one around the bladder and urinary functions is managed with medication, I feel stronger and able, but I need to manage wisely my return to normalcy as it is becoming obvious that these things take time.

Take heed and test

At any opportunity especially with young and middle-aged black men, I talk about prostate health, the need for checkups and the essential work of removing stigma and embarrassment from talking about men’s things. Things around the male reproductive system that crudely and culturally define manhood, manliness, masculinity, or virility.

Any black man over 45 should be aware and conversant with their prostate health as statistically, 1 in 4 black men will encounter prostate cancer in their lifetime. The risk is heightened if your mother or sister has had breast cancer or if your father or brother has had prostate cancer. [Prostate Cancer UK: Black men and prostate cancer]

This matter should not be trifled with, if caught early you have many options for treatment and cure. What would be unfortunate is to find that prostate cancer has spread and metastasized and there is little that medical intervention can do.

Prostate enlargement or inflammation may not be indicative of cancer, but every occurrence of what is called benign prostate hyperplasia needs to be checked out. [NHS: Benign Prostate Enlargement]

Early action helps prompt intervention

You can easily determine if your prostate has problems by running the IPSS Calculator. The International Prostate Symptom Score (IPSS) is a somewhat subjective assessment of your bladder and urinary health since the prostate gland is a muscular switch that sits beneath the bladder, surrounding the urinary tract as it exits the bladder and controlling urinary and ejaculatory flows.

Regardless of the IPSS score, it might be useful in persuading your medical team to conduct a Prostate-specific antigen (PSA) test. In my case, adverse readings on other blood tests and the fact that I am in the above 45 cohort became the impetus for requesting a PSA test in early February 2024. [NHS: PSA test]

The PSA test result would determine if other investigations and interventions are necessary. Again, in my case, we caught it early, addressed the options, and commenced effective treatment, and I am on the way to full recovery.

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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

Photons on the Prostate - X

The faulty waterworks

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

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

Hotline for hot piss

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

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

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

Vulnerable in stride

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

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

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

Blog - Photons on the Prostate - IX

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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.

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Things we have to do

This morning, my second visit to The Christie, the largest single-site cancer centre in Europe and the first UK centre to be accredited as a comprehensive cancer centre. I know where I am going, Department 22, where many men with their partners and some women alone or with their own partners sit in one of four waiting rooms to be assessed, reviewed, or treated.

There have been offers to chaperone me to the hospital, from my neighbour, my friend, or a fellow steward from my church, but I have decided I am best able to cope with the conversations to be had alone. Obviously, if the opportunity were presented, Brian is definite and my best friend Kola, I would have welcomed to be with me through all this.

Taking the piss test

Having checked in, I was presented with a form, the International Prostate Symptom Score (I-PSS) which is a patient’s subjective rating of how they view their urinary health on a scale of 0 (Not at all) to 5 (Almost Always) on the various indicators of Incomplete Emptying, Frequency, Intermittency, Urgency, Weak Stream, Straining, and Nocturia.

Your total I-PSS score will suggest from your perception and feeling how the prostate gland is constricting the urine flow from your bladder to your urethra. My score fell within the range of mildly symptomatic though a bit higher than the score from two weeks ago.

I had already had a consultation on the option for a prostatectomy just over a fortnight ago, I was not enamoured about the aftereffects of surgery, it was all too unpleasant to countenance. Then getting to grips with the idea that something was manifesting inside you has left me somewhere between denial based on its invisibility and bafflement in terms of how to address it.

Just because you’re pissing poor

The consultant for the radiotherapy treatment option came in and introduced herself before asking how I came to know about the prostate cancer diagnosis. Walking her through each stage of testing and results leading to more investigations, she got a good idea of my understanding of the medical situation under discussion.

The I-PSS score then became the issue, and when I thought I might be able to avail myself of the breakthrough brachytherapy treatment for prostate cancer, I soon found out that I would not be eligible because of the treatment possibly complicating my urinary health. [Cancer Research UK: Brachytherapy for prostate cancer]

While I could appreciate no medical personnel would like to leave a patient worse off than they were before treatment, I felt that basing that decision on the subjective equivalent of a hunch when it would have been ideal to undergo urinary health analysis and tests was quite irregular.

Imagine being able to game the system because you had prior knowledge of adjusting the I-PSS score to suit the treatment you want even if the outcomes can be at best dubious and consequently debilitating.

Surely, there is a better way

I had multiple conversations with the consultant and support nurse when I was offered the external radiotherapy treatment that might stretch on for 20 low-to-medium dose sessions. Understandable to protect the functionality of my urinary system, which is under stress from an enlarged prostate, but that comes with other side effects. [Cancer Research UK: External beam radiotherapy for prostate cancer]

In all cases, however, the cancer will be removed totally. My inclination would be to opt for radiotherapy, but I will make no decision until I have had a conversation with my Holistic Needs Assessment team. The consultant twice said she knew I was going to read up on everything we had discussed, I can only wonder what could have given her that idea.

I am doing fine, I feel well, and I am quite hopeful and positive. Things would turn out right, I just need to get a handle on how I should pray. On my way out, I saw directions to the chaplaincy and prayer rooms, I found the chapel and sat in there for a while. As I was about to leave, the chaplains were coming out of their office for midday prayer, I was invited to join them, which I did and we had a moment of devotion, prayer, and reflection before I returned home.

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