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 

Photons on the Prostate - VII

Whether the weather

My radiotherapy session which was planned for much later when my scheduling sheet was filled last Monday had been brought forward three hours on my Thursday visit.

This did not make it any more convenient because Manchester was under the generous sprinkling of torrential rain and rain in the UK is so alien to us, traffic literally stops and puddles become lakes with cars aquaplaning like speedboats. Well, drop the speed part, my Uber had to swerve off the road for a filling of petrol.

You may wonder why I have resorted to getting myself to and from the hospital by bus or Uber when I had the pleasure of friends chauffeuring me there for the full week of the one before the last. I appreciate everyone wants to help, we are all full of amazingly good intentions that we express with urgency and a seeming willingness to do as we ask others to make that demand on us.

Yet, we are rather busy people and much as we would bend over backwards to help, we do have other things to do that are important, urgent, ordered, scheduled, or impromptu. An apology reaches our lips suffused with concerning equanimity as we deliver disappointment with the expectation that alternatives are readily available. The truth; is there are no alternatives, and people who have relied on us are being let down gently, kindly, and sadly.

Just do your thing

It becomes a logistical nightmare for the person being helped between knowing an arrangement is firm to scurrying to make your appointment because of unforeseen circumstances, and a situation totally out of your control because of the reliance on others. You feel worse for feeling bad for their feeling sad that they cannot help. The same people who insisted they would drop everything and blue-light you to the hospital rather than see you struggle on a bus or pay a king’s ransom for a taxicab.

It's just better to make your own arrangements and anything that comes in to alleviate the situation rather than encumber it is a bonus. Decline the offers promptly rather than be beholden and reliant on the accompanying stress that comes with things not going to plan. It is hard enough doing things on your own, but you know you are setting the agenda and doing things your way.

Seeing our future in one

On arrival at the hospital, I was assigned another suite, the fifth I have attended in 13 visits. I first sat in front of a family of four, and then I needed a little powdering of my nose in the ladies’ room. It’s got a mirror, and I can adjust my day cravat, I forgot my lipstick. When I returned, my original seat was occupied, so I chose a seat at the back.

My appointment time came, but there was going to be a longer wait, two other people were called in, and then out of the family of four, the older man stood up, those accompanying him were his wife, his daughter and his son. His adult son called him and gave him a big hug and he walked in and gave the staff a box of chocolates, it was his last radiotherapy session.

What a triumph over adversity as they flung wide the double doors for him to walk out to the camera phones held up by his family, it calls for a celebration. He wished the rest of the waiting room good luck as I urged him to go and ring that bell for victory. I did not hear the bell as was called into the suite.

Number thirteen done

We had a student who asked if it was okay to be present, I obliged without any fuss, we need students as much as we need professionals showing them the practicalities of what is involved, and she attends my alma mater university. One of the transparent derma patches needed changing to preserve the tattoo marking, a job I have always left to the personnel because they include markings before taping.

I took the bus back into the town centre because I needed to top up my supply of cranberry juice which eased that stinging urethra issue. Another one of those situations where you only get to tap on good intentions once before it becomes a chore for them.

Yet, people never fully understand why for times like this and during recuperation, having time with your partner and them being available to help is always a labour of love done with every desire to see you well and a joy to them that they can be doing something effective, effectual, and productive. Until you know, you never really know.

Blog - Photons on the Prostate - VIII

Blog - Photons on the Prostate - VI

Blog - Men's things

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.

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

Blog - Men's things

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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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