Rog T's Cancer Blog - It is OK to not be OK

My personal cancer journey has in many ways been an easy one. I have never had a symptom. My prostate cancer was detected early, monitored and when it started to develop into something more dangerous, I had treatment before it became a problem. I had HIFU in January 2016 and a radical prostatectomy in August 2023, but at no point did I have a single symptom. When I checked into the London hospital for the operation on the 9th August, I went in being a fully functional man, in every way. Before I went in, I knew that when I came out, I'd be changed. I knew I'd no longer be able to conceive children. As I am 61 and I've done that, I didn't envisage that being a problem. I knew that I would no longer be able to ejaculate. The prostate gland produces the seminal fluid that we associate with ejaculating, it is removed so no fluid. I was told that I should, in time, be able to reach a 'dry orgasm'.  I was told that this feels the same, just without the fluid. The operation I had involved 'nerve sparing' which meant that I should, in time, be able to get an erection. I was also told that I should, in time be continent, if  I did the right things for my rehab. 

I mentally prepared myself for all of these things, as best I could. I have lead a full life. If I dropped dead today, I'd take no regrets with me about what I could have done, but didn't. I don't want to pass away, but I've squeezed a lot into my 61 years. So I went into the op with as positive a frame of mind as I think one can reasonably expect to. I knew I'd be sore for a few weeks, I knew that there would be bumps on the road. I knew that some of the changes may be difficult to adjust to. But, as much as you can prepare for such things, I had.

For the first two weeks of recovery, I had a cathetar in. That was unpleasant, but as it was for a defined period, not a major issue. The first big moment was when the cathetar came out. Would I be continent. I bought pads and pants to the clinic for the removal. To my great surprise, I didn't need them. I wore them for two weeks and then decided it was a waste of time. By this time, the scars had healed and the soreness all but gone. By late September, I'd had a consult with my surgeon, and he was more than pleased. His view is that I should be completely cured, with only maybe a one in twenty chance of reoccurrance, based on the examination of the removed prostate. All good?.....

Depression, anxiety, stress, other mental health issues. I think it is fair to say that you only realise the true extent of them when you start feeling normal again (whatever normal means). For the last week, I've felt what I consider normal for the first time since the 9th August. Yesterday, I was walking my two dogs, in the sunshine and a horrible thought occured to me. I have a PSA test next week (Tuesday 23/1). Having just found some sort of mental equilibrium, I will, yet again be plunged into anxiety as I await the outcome of the test, which will tell me if the treatment was less successful in dealing with the cancer than I hoped. As there is about a one in twenty chance of a reoccurance, I should not be too anxious, but my thoughts went to the "what if" scenario. I realised that if I need more treatment, it really would be more than I could bear to contemplate. For a couple of hours, I felt rather down and anxious again, but fortunately this lifted. It was a wake up call that feeling ok is something you can't take for granted.

In short, I've not felt alright since August until last week and if I had the rug pulled from me again, I don't know how I'd cope. Of course if the PSA test comes back and the news is good, I'll feel fine and dandy. If it doesn't and I have to contemplate further invasive treatment, with more side effects, I have no idea how I'll deal with the situation. One in twenty men in my position will get bad news. Will it be me who draws that prize?

One of the odd things is that I didn't really realise how 'not right' I felt until I started to feel OK. When you wake up and look forward to the day ahead. Where you go on line to look for gigs to go to, check out tickets for football, ping friends to arrange drinks, as opposed to finding it all a chore. Last night, I went to my first gig of the year - 999 at The 100 Club. I thoroughly enjoyed it. When we got back at 23.15pm, I actually enjoyed taking the dogs for their late walk, despite the cold. Such things were a chore at the end of last year. All I really wanted to do was lie in bed and sleep. I made arrangements, saw friends, but did it as I felt I had to. I had no energy for it and felt exhausted from the task of pretending to be OK. I couldn't start to put my feelings together. I just wanted to do nothing at all. But as soon as the subject came up, I switched into pretend to be OK mode. The strange thing was, the only person I really tried hard to convince was myself. I pride myself on being strong and reslient. I spent four months forcing myself to do things I didn't want to do, for no other reason than I was bloody mindedly trying to con myself I was fine.

What was perhaps worse was that I was actively avoiding addressing the situation. Why you may wonder? Because the truth was that I simply couldn't cope with the fact that I was impotent following the surgery. I had been given a cialis prescription, but this didn't work and I was paranoid that it was making me red faced and puffy. I stopped taking it for a while. I then discussed it with Gerard Greene, my mens health physio. He suggested restarting and seeing how much I could actually tolerate. He also assurred me that two-three months was a short timescale to expect a recovery. 

A week ago, I found that the cialis had started to work and I could get an erection. With this, much of my anxiety fell away. As the anxiety lifted, so did my energy levels. I have been really struggling to do my 10K steps a day. Last week I breezed it. Despite the cold and the rain, I was not making excuses to get the kids to take the dogs out for a walk. We went away for a couple of days last week, to the South Downs. We did some lovely walks and I returned feeling good. I know I am not out of the woods, regardless of what happens with the PSA test. I realised that when I started to think about the test yesterday, it doesn't take much to set me back right to where I was. 

One thing that I have only just started to realise is that when you are not OK, you are probably the worst person to judge your own state of mind. Whatever challenge I had was mild compared to many. The mere fact that I feel as if I've shaken it off tells me that whatever sort of mental health challenge it was, it was not a major challenge. That doesn't mean it wasn't a problem. I wonder if the family noticed? I wonder if my work suffered? I wonder if I'd sought professional help it would have made any difference? I wonder if my mental health would have improved if I'd not physically seen signs of recovery? I wondered what anyone could say or done that would have made me feel better until things improved and if they didn't would this morose cloud have become permanent.

At what point do you reach out and get help? At what stage do you put your hands up and say "Actually I'm not coping with this too well". My guess is that for most of us, it's a lot later than it should be. I find it almost impossible to say "I'm not OK", especially to myself. I wasn't in crisis, so maybe there was no need, but I was far from how I want to be. It has made me think about how bad it has to be before the point is reached where some sort of help is actually sought. With a clear head, I say to myself "Having cancer is a major challenge and there are many places where support and counselling can be sought and if I start to dip again, I will explore that". I also know that if I start feeling low again, I will not think like this.

I write this, as I believe that for many, the mental health issues associated with cancer, with the vulnerability it causes and the physical impact of the condition and the treatment is as bad as the disease itself. Knowing that you are living with a condition that could kill you, might maim and disfigure you and may come back even when 'cured' is a heavy burden to carry. All I can say is that it's OK to not be OK and if you are struggling, you are not the only one. I can't offer any great insight into how to address this, as I have realised I have no answers, but finding the answers starts with asking the questions and I'm not sure I was even doing that.