One is hardly sleeping enough

Another remedy to try

A hot bath with Epsom salts and English mustard comes from the yet unwritten book of Brian' s remedies. He has similar ideas that I have sniffed at which might even work, but I am always a sceptic first until persuaded.

Beyond that, he has recommended chamomile tea; his advice is an earworm. However, when I think of chamomile, I think of a lotion, and the last time I applied it to soothe my skin was during an episode of shingles in June 2009.

Obviously, I need to find something to deal with insomnia; in fact, sleep seems to arrive at any time rather than at designated times for that activity. I use my weekends to catch up on all the sleep I could not get during the week.

Keeping awake doing

While I do not feel the same level of fatigue I had during and for the few months after radiotherapy, there is still a lot of tiredness that hits you in the middle of the day, no matter how much you try to stimulate yourself. With the lack of caffeine, you just depend on nature to stay alert and focused.

Then, in my waking hours deep into the witching hour, I cannot idle about; I just completed five difficult Sudoku puzzles, as if that would tire out my brain. Besides, nocturia is an issue too; whenever I get some sleep, I wake up to pass water, usually four times during the night. I have hit the litre mark a few times this week, and I do not drink as much water as Brian insists I should.

It will get better

I have made a few adjustments, like taking my pills earlier and resisting the urge to drink late into the evening, but I sometimes have a dry mouth, for which swilling cranberry juice might be too great a luxury if you do not swallow after you taste it. I used to drink sparkling water, but I stopped because fizzy drinks do not help urinary function after radiotherapy.

I hate still water, yet I find myself having a glass or two, but never as much as necessary. What I have avoided all along is medically induced sleep; however, the insomnia is a long- term side effect of radiotherapy. I know sleep will eventually come, but I must find ways to prevent this from ruining a productive day.

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 - 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

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 

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 - 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

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Photons on the Prostate - III

He’s just independent

Three things greeted my concern after a rather uncomfortable weekend, the quick onset of fatigue, sudden events of feverish bouts, the ongoing lack of appetite, and the obvious loss of my natural voice that seemed to suggest that I had a cold or sore throat, however, it was one sign of labouring through the fatigue.

If I had not had my ear bent enough through the weekend by lover, friend, colleague, and neighbour about my reticence to ask for help. I am generally independent; they say I am stubborn. Some condemned the idea that I was boarding public transportation to and from the hospital.

Rather than fight these battles, I relented and by that ceded control with the unfamiliarity that a control freak might find impossible, I am not a control freak, I just like things to be ordered as a creature of punctuality and habit.

From drive to driven

My neighbour dropped things she needed to do this afternoon to drive me to the hospital and stay the whole time before bringing me back home for tea at hers. Bless her.

My older friendly steward colleague from church gave me a ride back home from church on Sunday, putting one foot in front of another to get to church had totally exhausted me. I sat through most of the service on a day I would normally have been a steward. Everyone was considerate, kind, empathetic and reassuring, it helped.

Arriving at the hospital with just about 5 minutes to spare before my scheduled appointment, it is unimaginable how heavy the traffic was on the main or back roads, it wasn’t 4:00 PM and we were in essentially rush-hour traffic, a 21-minute drive easily extending into more than 40 minutes.

Appointments are just indicators

I booked into my suite, but there was a wait, an emergency radiotherapy session for someone bedridden and then another who was having his first session attending with his wife and soon I went to collect my neighbour from the main waiting room to the suite waiting area. It soon filled up with patients of all descriptions.

Time ticked away and it was literally an hour after my scheduled appointment that I was called with the first requirement being, please visit the toilet and do whatever you can. It was a team of men operating the suite as I regaled them with the history of Elekta, I guess even when I try not to be, I end up being a nerd, all the same.

Zap and dap

Again, to spare my blushes as I pulled down my trousers to reveal tattoos and crown jewels, they had a covering ready to which I retorted, that they had seen all sorts, I was not in the least bothered. They worked like a flight crew in setting me up in the bed, reciting and confirming measurements and settings before we had the first whirl of the linear accelerator and then I was left for the machine to do its deed.

They then referred me to a reviewing nurse who took me into an office, it was soon that I realised why her voice was a bit different, she had a voice box, obviously someone who had had radical surgery on her throat. She was efficient as she meticulously recorded all the side effects and symptoms, she gave the advice to take in more fluids and try to defeat the issue of not eating enough.

And so we go

My temperature and blood pressure were taken and there is the possibility after further review that they might do some blood tests. I still have not found out the updated PSA and testosterone results of over two weeks ago. I wonder where they are held as they have not communicated to my doctor.

That’s three done, my steward colleague from the church is picking me up tomorrow morning for my next appointment. It might be later in the week before I have a schedule that favours a late appointment. Meanwhile, there is a bit more timbre in my voice, it is probably something between a shock to the system and an adjustment to the treatment.

Blog - Photons on the Prostate - IV

Blog - Photons on the Prostate - II

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