110. Change Comes in Three Flavours – Bad, Worse and F%^&

chameleon For a while now, when I meet someone the first thing they usually tell me is that I look tired. I have tried laughing it off and telling people that I look worse than I feel and you can only want to throw something at someone so many times. The truth is I am either all right at that particular moment, tired or knackered. Unfortunately, I endure more of the latter two than anything else.

I could count on my fingers the number of times that I had an uninterrupted night’s sleep, since somewhere in the middle of the radiotherapy treatment. I am still drinking at least 2 litres of water and even if I stopped all drinking at 6pm the problem didn’t stop. I find myself needing to pee, a full bladder, in the early morning. If I was lucky, I could get back to sleep immediately, with great difficulty or I may have to accept that it’s not going to happen and go and turn on the TV or computer and find something to do. Going to bed earlier, later or even at a consistent time does not seem to work either. It just shifted the problem either earlier or later in the early morning.

I did speak to the radiotherapy consultant who told me that this was a common occurrence and that they actually had a sleep clinic that she could refer me to. Well, naturally I snapped up the offer and she said she would complete the paperwork. Additionally, she was also going to arrange for me to get a medical certificate so I could ease my way back into work. I got a call regarding the sleep clinic and the letter from the consultant weeks later which was not much use in either case.

I then made the mistake of going straight back to work. I had not heard from HR at all as this was just arranged between me and my line manager. There was no pressure other than the one I exerted on myself via this roomy expanse called my head. The accumulative effect of not getting unbroken sleep was taking it’s toll. It’s fair to say I was feeling like a zombie, just without the blood thirsty tendencies for anything other than sleep. Then I would either have to turn reluctantly to my liver’s liquid nemesis, uncle Red Bull or know there was a possible crash coming later on in the day.

At work I had told a few people that I would be off for a few weeks for the radiotherapy and one of the women said we must do a catch up when I returned. I contacted her when I was back and she asked how I was doing, I mentioned the sleep challenges. Without missing a beat she asked if I had ever taken any magnesium supplements as they will aid my sleep. I told her I had never heard of that but I was willing to give it a shot so ordered some that very evening. She also mentioned that I should be open with my line manager about my struggles coming back and it was never too late to start a phased return.

I got the magnesium supplement the next day and two nights later I started to have nights of uninterrupted sleep. The few nights that I did get up I managed to get back to sleep fairly easily. Then it started to work perhaps too well. There were moments when I was sitting still, on a bus or watching TV, and before I knew it I had dozed off. I have found a happy medium now and take it every other day. My line manager could not have been more helpful during this period but I went the hard headed route and tried to play superman. I finally told him that I was suffering with sleep deprivation and he instantly said take all the time that I needed. I proposed a phased return which I should have done at the start and he totally agreed, so for the next two weeks I finished at 2pm and the week after that at 3pm.

I did ask a nurse when I was undergoing the radiation therapy if I could continue running and going to the gym. She not only said that it’s not a problem, she encouraged it. What she added was that I needed to listen to my body so I don’t overdo it. I used wisdom and stopped running during the treatment but getting back into it has proved more than a challenge. It was about three weeks after the treatment that I attempted a run. I got 1km and stopped and started to complete a total of 2km. I couldn’t put my finger on it but something didn’t feel right. I also managed to sweat as heavily as if I had done a 5km run. I left it a week and then tried again. That time I got to 1km, didn’t feel right again and stopped. I was sweating like a pig again and walked back. I tried again a week later and pretty much the same. I have not even looked at my gym kit, let alone stepped in there. It seems a long road ahead.

As we all know, one of the major changes the recent pandemic created was the facilitation of the working hybrid model. I can remember, not too far back, that working from home was a line manager request which was granted very rarely. Now, I have yet to find someone, other than in the teaching or hospitality professions that does more than three days a week in the office.

I didn’t really notice it at the time as there were other things going on, but I was not hearing from the awareness team at Prostate Cancer UK as often as I usually did. I had a couple of talks, which were booked weeks before I underwent treatment and I completed those. The last Awareness talk that I did was a month or so in the making, from first contact, as the company only had one core day when everyone was in the office. Then it went very quiet.

I have spoken, one to one, to a few men that have requested to speak to someone that has had the prostatectomy to get first hand knowledge of what they can expect to go through. They are rewarding in a different sense to the group talks.

Then in the middle of August awareness talk volunteers received an email from Prostate Cancer UK regarding some changes to how they are going to work going forward and the delivery of awareness talks. They acknowledged that along with other charities they have seen a downturn in requests for awareness talks from businesses with the shift to hybrid working, a shortage of volunteers and the time volunteers can give. Going forward they will still offer in-person talks to their strategic partners and a few selected companies but they will be removing the online talks and booking form and replacing them with a monthly awareness webinar delivered by volunteers.

It’s basically the end of an era.

For five years now I have been all over London delivering awareness talks. I remember when I thought that I was going to change the world by delivering talks. I have seen it all.

When organisers promised hundreds in attendance and only a handful turned up.
Being locked out of venues (they changed the date and location).
Disgruntled black men flushed out of the bookmakers next door to join the meeting.
Old birds falling asleep mid-sentence.
Senile old birds coming in for a smooch.
The many men who have told me how they were refused a PSA test.
The people I urged to go and have a test, after hearing their symptoms.
The old woman who held my hand and cried, thanking me for giving her the information she needed to talk to her grandchildren.
The personal stories of men lost to prostate cancer.
The horror stories of men lost to prostate cancer.
The packed sessions, where they couldn’t get enough.
The people now inspired to talk to others about their own conditions.