Thought Picnic: Back on the treadmill of worthwhile relationships

Like a work of nature

Worthwhile relationships need to be cultivated; they are the product of complex dynamics in our humanity and interactions which I have learnt through experience might be difficult to understand.

This is not a zero-sum game, such that what you put into a relationship is what you get out, the transactional kind carries lofty expectations and extraordinarily little reward along with disappointment and disillusionment.

Cultivating relationships is like farming; you prepare the ground, sow the seeds, and let nature take its course; the sunshine for warmth, the rainwater for life, as the seed germinates, sprouts, grows, and thrives.

There is a concept of time and duration to it that matures relationships. We all need a personal experience and revelation of planting seeds and watching the wonder of nature, from seedtime to harvest.

The work is a cycle

Yet, it is not just about harvesting, it is a continuous cycle of life. Like a farmer, you work the land of relationships and experience the wonder of things you could never have imagined.

Certain emotions come to the fore quite unexpectedly, in how care, concern, and consideration for another create endearingly invisible and significant bonds.

These relationships can be familial, but we are all too aware that blood does not assure the best of relationships, it might be the start of something, but it goes beyond that.

It is in how we choose our partners and friends, and what we do to maintain relationships and maintain is such an inadequate word for it because it is not perfunctory.

Knowing the work that works

Yet, in the moment of vulnerability and adversity, you begin to see the quality and value of relationships, like who is still about watching out for you when there is nothing you can do for them except respond and engage.

Among those relationships that reach deep into the soul of whatever makes us human, you might have a hand and a half to count on.

I have many friends, but I only have a few friendships that are the substance of relationships to be cherished. You cannot account for how others feel about the people you choose to form these relationships with.

It is sometimes interesting to see the perspectives of others and realise how things are different. You should, however, be discerning about cultivating your relationships based on the viewpoints of others, for what is significant and valid for them might not be relevant to you.

And what works for me

As I end this rambling piece that I am not entirely sure makes all that sense, sometimes, we never really know how truly and fondly liked and loved we are by those with whom we have cultivated relationships in the main, and then others who for all sorts of reasons and issues in life might have failed to register until the point where we are sorely missed.

Just to check if I was still with it, before publishing this piece, I did a search on my blog for ‘Cultivating relationships’ and I had written one as recently as last month and then as far back as the year, 2007.

I am onto something. Then, there may be fences to mend and others to abandon, and then certain relationships are, unfortunately, not worth it. Yes, crops do fail. Such is life.

Nature calling with impatient urgency

The thought is already daunting

Going beyond my local corner shop was a daunting prospect, the thought of getting into town without the encumbrance of Saturday traffic and the elements of Halloween clawing away at everyone’s sensibilities.

This was my first determined foray from home, besides my almost forgotten hospital visits and my Sunday church attendance. I needed to do some shopping, and I wondered if I had the wherewithal to complete that activity.

I had to plan my journey, and I was already wearied at the thought of a 25-minute walk when I happened on the idea of using the tram to take about 18 minutes either way out of that strenuous workout. That is what it has become, even without the fatigue, it was just the strength to perform that was lacking.

Just Can’t Wait

Barely had I reached the tram stop and I was looking for a public convenience, an urgent call of nature creating a burning sensation from my bladder into my urinary tract. I had to choose between the public toilets in the library or the town hall annexe. I chose the latter because I won’t need to navigate stairs and doors, it was a bit further along too.

As I reached for my Radar key to access the disabled toilets, the attendant was at the ready, and he opened the door for me. What seemed like a relief was first painful, burning, and unpleasant, accompanied by straining to the point of getting herniated, and then a weak hot stream, but not with the comfort of completely emptying my bladder. A bit of massaging of intimate parts and rocking from foot to foot, then another slightly pleasant stream, with a feeling of being almost done.

Nature is a taskmaster

I was comfortable enough to continue my journey, returning to the tram stop, I boarded the tram to the city shopping centre and did the first part of my shopping at Aldi. Nature intervened before I could get to M&S, so, I was off to the public toilets again, having to wait for a disabled toilet to be vacated and the routine replayed itself like just 30 minutes before.

To think I was that long at M&S getting a few cartons of juice, a milkshake and some ready meals, I knew I was not going to make it home before the third toilet visit in just over an hour. I found the comforting enclosure of the disabled toilet at Selfridge’s before I began my return journey on the tram.

Within ten minutes of arriving home, we had to do it all again. It seems walking stimulates the bladder, which might become a concern about having accessible toilet facilities once one leaves home. You could be easily dissuaded even if you are equipped with the toilet map, a Radar key, and a Just Can’t Wait card. There is no time for embarrassment or shame, when nature calls, you answer.

Thoughts in prose

Many dreams and brighter hopes

From a distance, he’s held my hand,
I have never felt too far from land,
To know one who can understand,
Quite very much a member of my band.

Whenever I have winced in pain,
As issues leave more than a stain,
Not once did his concern wane,
Nor from care and love abstain.

We have something built on trust,
That no situation can bring to rust,
Where everything else falls to dust,
This meets every test standing robust.

I had to write beyond my back on the ropes,
Even as things only seem like he just copes,
In the journeys of hills, troughs and slopes,
We harbour many dreams and brighter hopes.

Photons on the Prostate - XI

In fatigues in fatigue

It is now 15 days since the end of my radiotherapy treatment for prostate cancer, I do feel I am well on the recovery path, though the side effects are still screaming in my system in ways that are difficult to ignore.

Two things remain a feature of this situation: fatigue that modulates my voice on a spectrum from the prepubescent choir boy to the softly spoken young adult. I had forgotten the sound of my natural voice before I commenced treatment. My walks to the surgery and the corner shop lack coordination, as do my stumbling, a speedy canter with short strides.

That urge you dread

The waterworks, still frequent and urgent, straining to start and not completely emptying, on rereading the medication leaflet, I should have been prescribed this long before treatment began because an enlarged prostate already constricts the urethra, my IPSS score was 19, and radiotherapy was both going to inflame the prostate gland as much as irritate the inner lining of my urinary tract.

I had unnecessarily suffered for weeks until it was unbearable, and the burning feeling has eased a bit, but every urge to pass water is met with trepidation and discomfort. You have to do what you have to do.

On the voice part, my colleagues suggested I appear in full regalia for a drag show, shoes included, and they do not come cheap. Like honestly? Anyway, how else do you get through this without a lot of humour and hope? A future appointment is just five months hence, I might need a long break soon.

Blog - Men's things - Prostate Cancer blogs

Black History Month - Reclaiming Narratives on Men's things

An invitation to talk

A few weeks ago, during my radiotherapy treatment, I was invited to attend a Black History Month event and a panel of discussants. This is something I would have willingly done, but I could not with the side effects I was experiencing guarantee I could attend, and sitting on a panel was ambitious at best.

When Saturday came, I felt I had the strength to grace the occasion. My view then was that they had a substantive panellist with me as an alternate. I sat in the back of the meeting room, nursing the issues of comfort and discomfort as the proceedings progressed. I had tacitly agreed to join the discussion if I had the energy, and my voice was amplified.

Let’s talk men’s things

The theme for Black History Month 2024 is “Reclaiming Narratives,” marking the shift towards recognising and correcting the narratives of Black history and culture. I do not think they expected the direction in which I thought to reclaim our narrative.

After my introduction, I raised the issue of black men being comfortable talking about “Men’s things”, their sexual health, primarily, prostate cancer, but testicular cancer and erectile dysfunction are such intimate issues too along with sexuality, that we should not feel emasculated when those topics are discussed as they matter to our health, wellbeing, life, and happiness.

Culturally, broaching this subject in many communities belies a loss of masculinity and vulnerability where we should be projecting strength. Yet, strength is in accepting the vicissitudes of our humanity, openly, honestly, and confidently creating the conversations that help others seek essential help to deal with issues long before nothing can be done for them.

Talking empowers us all

Part of me felt I had hijacked the conversation but the questions, interest, engagement, and feedback suggested it was a necessary topic to discuss as I took the time even with my waning voice to explain in sufficient detail the risk factors and the essential tests, along with signposting material they could read to gain knowledge about taking control of intimate health issues.

To that end, I compiled all the blogs I had written about Men’s things and Photons on the Prostate to continue the discussion from this blog. Men's things - Prostate Cancer blogs

The narrative we need to reclaim is black men boldly discussing men’s things and helping each other to achieve the best outcomes for our sexual health, supporting and strengthening each other through adversity and increasing the talent pool of advocacy out of interest or experience to give more black men the tools to live healthy and well.

Men's things - Prostate Cancer blogs

A journey of discovery

Over the last 7 months, I have written a series of blogs about my journey to the discovery of malignant prostate cancer and the consequent treatment with radiotherapy along with the attendant side effects that I hope I am managing well.

I have compiled a range of blogs and annotated each to highlight how I navigated the issues that arose through each diagnostic and treatment stage.

The Men’s things blogs cover issues we need to be talking about and in this case, it is the prostate gland, the Photons on the Prostate blogs are of my experience having chosen radical radiotherapy for the treatment of prostate cancer.

Take the test

The need to have an eye on your prostate health is critical and you can start with the International Prostate Symptom Score (IPSS) Calculator. I did not know I had an enlarged prostate; I have always strained to pee and when it started, it was a weak stream with a feeling my bladder was not emptying completely.

It took a PSA test to determine my prostate was enlarged, that is always the first step, but your risk is heightened if you are a black man over 45, have had a brother or father with prostate cancer, or have had a sister or mother with breast cancer.

The technical terms are explained, linked, or illustrated in the blogs and I hope you find the information useful.

Men's things – Results of my PSA test have led to a Digital Rectal Examination; my doctor is concerned, and I received a referral.

Men's things - II – Taking a multiparametric MRI scan of my prostate gland.

Men's things - III – Why must I have a prostate biopsy? You have a PI-RADS score of 4.

Men's things - IV – Bear the pain under local anaesthetic as your reaction is informative.

Men's things - V – Some pain in the perineum, blood in the urine, and a few notes to self.

Men's things - VI – The wait can be a weight on your mind.

Men's things - VII – ‘Bring a friend’, suggests you might get some interesting news.

Men's things - VIII – Understanding your test results is crucial to having a voice in your health outcomes.

Men's things - IX – You have been diagnosed with adenocarcinoma of the prostate, I knew that already

Men's things - X – Finding yourself on a national cancer register after a cancer diagnosis.

Men's things - XI – Understanding the risk factors with prostate cancer in black men.

Men's things - XII – The daunting prospect of radical prostatectomy, not pleasant.

Men's things - XIII – Discussing the options for radical radiotherapy of the prostate.

Men's things - XIV – Holistic Needs Assessment managed by the Macmillan Cancer Support charity.

Men's things - XV – It is always your body first before it is their guinea pig, my journey of discovery.

Men's things - XVI – Centring the patient in the medical conversation, the Predict Prostate website and the ProtecT study.

Men's things - XVII – Radiotherapy planning session, a CT scan and my first tattoos.

Men's things - XVIII – Creating the right mindset for a diagnosis of malignant prostate cancer; faith.

Men's things - XIX – Image Guided Radiotherapy (IGRT) and the first experience.

Photons on the Prostate - I – Taking the first session of radiotherapy for prostate cancer.

Photons on the Prostate - II – Understanding the protocols and arrangements around treatment.

Photons on the Prostate - III – Independence, vulnerability, and seeking help during illness.

Photons on the Prostate - IV – Radiotherapy; how the linear accelerator works – YouTube video.

Photons on the Prostate - V – Dealing with the side effects of radiotherapy; tolerating fatigue.

Men's things - XX – Getting a sick note and the need to be conversant of your medical situation.

Photons on the Prostate - VI – At the halfway point, hypofractionated radiotherapy is explained.

Photons on the Prostate - VII – Reflecting on independent arrangements for out-patient attendance.

Photons on the Prostate - VIII – Dealing with the side effects of radiotherapy; fatigue.

Men's things - XXI – The International Prostate Symptom Score (IPSS) Calculator.

Photons on the Prostate - IX – Ringing the bell at the end of twenty radiotherapy sessions.

Photons on the Prostate - X – Dealing with the side effects of radiotherapy; the waterworks.

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

Blog - Men's things