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