Sunday, 29 September 2024

Thought Picnic: On refusing to be defined by cancer

Like an impatient patient

I became a cancer patient long before I had the option to consent because every cancer diagnosis in the UK gets put on what is essentially a national cancer registry. I was informed only as a matter of courtesy that this had been done. I would think it was weeks before I had a conversation with the consultant, and I had known of this diagnosis because of the poor sequestration and handling of information within my local NHS trust.

Beyond this, you strain every sinew within you not to be defined as a cancer patient, yet that is somewhat taken out of your control, my spirit, strong and commanding, willing with strength over the deprecations my body exhibits in symptoms of both the cancer and the treatment of it.

Chief among these side effects is fatigue that results in tiredness, irregular sleeping patterns, nocturnal insomnia, and a weakened timbre of voice in speaking, the urinary tract is slightly irritated, and bowel movements seem rather restricted.

Willing against bodily handicaps

Having determined I would attend church today as I could not last Sunday for the simple reason that I hardly slept the Saturday night before, the same was happening today. Unlike a fortnight ago, I knew I wouldn’t be walking to church, it was best to do this by Uber.

As the alarm clock went off, I did not bother to put it in snooze mode, I stopped the alarm and pondered whether it was beneficial to grab the sleep I could or rise to the challenge my body was unwilling to meet, but my spirit ruled against.

I rose and went to the bathroom for the essential ablutions. I bedecked myself in the apparel I wore for my last radiotherapy appointment on Friday before hailing an Uber ride to church. I arrived as the processional hymn was sung and sat beside a steward friend.

I only stood up for the gospel and for Communion, the collects in my saying lagged the congregation and no attempt was made to sing any of the hymns, my voice just could not modulate toward tuneful expression, it would have taken all the strength out of me.

The community, our church is

My absence last week left many quite concerned and I received messages and calls asking about my welfare. I was also not aware that many other members of the church knew I was having cancer treatment, and some were praying for me. I sometimes forget how closely knit our church community is.

If I had not attended church today, I would have had people at my door checking up on me, in a sense it is lovely to be noticed and missed. Next week is the Judges’ Service signifying the opening of the legal year. In other circumstances, I would have attended to steward the proceedings as it is a civil service, I think I’ll have a lie-in and recoup my strength.

Another Uber ride back home even in infirmity, let the weak say I am strong.

Thursday, 26 September 2024

Photons on the Prostate - VI

Travelling and scheduling

Being prepared early for the hospital is one thing I have purposefully planned to give myself at least an hour for travel and this is not by bus, but by being driven there. If you arrive on time or well before time, there is a likelihood you could be leaving the hospital before your scheduled appointment time.

Talk of schedule, I met with two receptionists and between them the American pronunciation of schedule had taken a hold I could not ignore. The pervasiveness of American culture permeating every media outlet in films, on television, on the Internet and elsewhere means we might be losing out as we are the last holdout of the fight to the death to prevent the ruination of English.

Sides to the side effects

Meanwhile, finding ways to manage the fatigue is tending towards maximising my productivity when my energy levels are high, this tends to be just after midnight and having knocked a few emails and completed some pending tasks, I was tired enough to fall into bed and get a bit more sleep than usual.

My voice seems to be a wind vane of fatigue on a spectrum of strength to weakness belying something amiss, but it is still my voice, slow and soft to a whispering tone, words still properly enunciated and the mind as alert as it should be. The spirit is indeed willing, but the body is weak, daily bombarded with radioactivity meant to terminate every semblance of cancer on my prostate.

The bladder issues present a slight stinging feeling when passing urine and this I am told can be ameliorated by avoiding drinks with caffeine content and taking copious amounts of cranberry juice. I have not been that sold of still water even though I am supposed to be consuming litres of that stuff.

One other common symptom is with the bowel though I feel more constipated than diarrhoetic the glycerine suppositories seem to be more effective than the micro enemas, having got into a routine with it, doing the business at home within two hours of your appointment is better than the early day of SoD (Shit on Demand), the very least that is expected before going into the radiotherapy suite is to PoD (Piss on Demand). That is easier to do before you find yourself in need of an epidural while trying to birth cack.

Prostituted to many suites

There was cause for laughter when I was assigned to a different radiotherapy suite at the reception; which brings it to four suites I have attended at the halfway point. To which I quipped, “I am being sent around the suites like a prostitute.” Much mirth short of falling out of their seats. We can only do this with humour, positivity, and a sense of hope that this will pass.

That’s 10 hypofractionated radiotherapy sessions done and we are on the home straight Deo volente. Having a conversation with a couple where the man had already done 15 sessions and had a vast experience of prostituting in many more suites than I have, I could only point to one final thing to do when it is all done, he would soon be ringing the bell. [British Institute of Radiotherapy: Hypofractionated radiotherapy]

Blog - Photons on the Prostate - VII

Blog - Photons on the Prostate - V

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Tuesday, 24 September 2024

To that lonely man of Quernmore

The England that was

A big house stands lonely in remote Lancashire in the hilly countryside that looks far away from anything known bequeathed in a legacy to a man who served a family for a long time, and it became his hideaway.

Born in the closing of the Depression just as the Second World War began, to a young couple who might have ancestry that stretched to the ends of Yorkshire, steeped in the Victorian working-class values of duty and service, of which they were obviously exemplary.

The road sign to this village is one of those English placenames that is a Shibboleth, it sets apart the locals from the outsiders, and fascinating it is.

Happy and sad together

And 80 years to the day, tragedy and fortune struck, in Arnhem a father never returned and in Lancaster, a girl was born, and so was a life so marked from that day until the very end. He was the grandson of grieving parents as his mother cradled his little sister in her arms.

This is not my story, but one for which I seek to remember a man who was uncle to my friend. We all have uncles that we fondly remember, who we know and yet do not, whose persona reveals cleaves of the unsearchable travails of life represented in their quirks and tics.

In the passage of time, mother passed on for he never left her side to travel or get married, a lifelong protector even from a boy, seeing duty like he might have been told by his father as he left for war, make sure you take care of your mother. And now, he also had a little sister to watch over too.

The forever memories

When I met him during my many memorable sojourns to Lancaster for Christmas, his impression of things might have belonged to a forgotten age, but nothing he said was out of malice, it was a way of making conversation and you dug deep for wit and laughter rather than take offence.

I knew once the bond that brought us all together at Christmas had gone, he would become a total recluse back in his big house out of reach and out of sight, usually sought by his nephew and rarely seen except for letters and notes. He was free from the oath to care for his mother and the rest of the world could care for itself.

No one could blame him and what might never have been truly known was he was both liked and loved, every visit to another village in Lancashire would include the thought to ask after him. We sadly learnt that he had left his footprints in the sands of time now only to be remembered with a sigh and in dreams.

The lonely man of Quernmore (KWOR-mər) is gone. May his gentle soul rest in peace.

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.

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Saturday, 21 September 2024

Photons on the Prostate - V

Tolerance helps through

My radiotherapy session yesterday was the latest in time for all visits to The Christie Hospital at 18h15, it represented the longest time between the weekday treatments as there are no weekend sessions. I was first in on Thursday morning at 08h00, the receptionists and staff had not arrived when I got to the hospital for my appointment.

With 7 done, we are over a third of the way through it and I have a better understanding of what to expect. I am tolerating radiotherapy well, but fatigue is a downer, much as I want to be active the body is sending signals I cannot ignore, and tiredness gets respite with sleep at irregular times leading to nocturnal insomnia where you wake up in the middle of the night and even though you are tired, you cannot sleep.

The side effect is more related to fatigue than insomnia being a documented side effect of radiotherapy when it applies to the prostate. It royally screws up the day that you need to become flexible about how you are productive.

Take each day

I would do whatever I can when my energy levels are up, regardless of the time of the day, and take the rest as needed when the fatigue sets in.

The waiting rooms during the evening sessions are quite busy and this time, as I was waiting to be called into my usual suite, I was reassigned to another suite where I was immediately called in for my radiotherapy treatment.

One other thing I have noticed is my ambulatory performance is quite low compared to my usual walking speed, it reminds me of the months of recuperation after chemotherapy in 2010, I just took my time putting one foot in front of the other knowing I would eventually get to my destination. The distance to the hospital on my good walking days I could do in 60 to 70 minutes. It is not something I have contemplated currently.

The smart thing now is prioritising the responsiveness to treatment over other situations and variables, and making the best of the weekend breaks on the treatment plan.

Blog - Photons on the Prostate - VI

Blog - Photons on the Prostate - IV

Blog - Men's things

Friday, 20 September 2024

Thought Picnic: Tough love is loving yourself

Get a good perspective

We can find many excuses for all life's misfortunes and spin narratives that make the most intriguing tale of woes. Yet, one might hazard the thought that whatever we have experienced pales in significance to what others might be suffering. That is usually the case.

I cried because I had no shoes until I met a man who had no feet.” Helen Keller.

That sense that the world owes us something we thought we should have had but never got, the feeling that no one is bothered about you because you have inadvertently become self-serving, self-centred, and selfish, magnifying your situation to gain undue prominence that the world even begins to revolve around you.

Assume some responsibility

You take every opportunity to blame everyone and everything but yourself. You were not loved like you should be loved, you never heard anyone say they were proud of you, and you fill your world with the misery you have created around you believing no one else cares.

No one likely cares about you because you have contributed nothing to foster the relationships that matter, taking only and giving back nothing. Those who know you have been shy of telling you the truth because you live in a Utopian mirage, and you hope it is the reality it never will become, your indulgence giving vent to your own wild delusions and self-deception.

Just love yourself

Alright, you were not loved; shit happens, then you were never commended; not everything is praiseworthy, and the way you live might not be pleasing to many; get over it and get over yourself.

What are you doing for yourself? You can start by loving yourself enough to not care whether you are loved by another or not. Like the song "The Greatest Love of All" says, "Learning to love yourself; it is the greatest love of all." Let's try that as everyone else is quite happily living their own lives regardless of whether you exist.

You have to give yourself the chance to just love yourself better and a little more and forget the past of not being loved.

Wednesday, 18 September 2024

Photons on the Prostate - IV

Unhealthy and unwealthy

Visiting the hospital, I wondered if we are not a sick nation even an unhealthy one, too, contributing by choice and inaction to whatever ails us.

I suggested appointments were indicative and that's what I have experienced for my appointments this week. A late call running an hour behind schedule, and then two calls that had me treated before the scheduled time.

How it really works

My fascination with radiotherapy gained pleasure when I found a YouTube video demonstrating how the linear accelerator works. My respect for the engineering behind the linac just left me in glee.

Linear Accelerators (LINAC) | Biomedical Engineers TV

Not me being a nerd, in the nerdish pursuit of understanding the science of radiotherapy. I should not bore you with much apart from something I witnessed twice in five minutes.

At the main waiting area of the radiotherapy department, there is a clanger bell, you are asked to ring it thrice at the end of your treatment course.

Ring my bell

I have been longing for when I could ring that bell, and I am only 20% into my treatment regime. I heard the bell ring for the first time in all my visits, and everyone heartily clapped.

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.

The gruelling treatment would eventually end and the opportunity to go out and live in the extravagant celebration of life beckons.

Why we were there

Then I heard my name; I was called into the suite, set up on the automatic gurney and ready for my fifth radiotherapy session.

I knew exactly what was happening, probably a horror tease of science fiction getting irradiated on the prostate as Chaka Khan belted out "I'm every woman," on the radio. I checked at the end, and I'm very much still a man.

Thinking about it, I have never asked for a sick note in a working life of 36 years, I might need to get one now, to fulfil all righteousness. It is at 25% now, each session adds 5% to the tally.

Tomorrow, we are doing the morning shift barely after the sun rises, much help is provided, and all support is appreciated. Shalom!

Blog - Photons on the Prostate - V

Blog - Photons on the Prostate - III

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