Its been several months since my last blog entry and things have been looking up in my life. Have got myself deeply involved in my work, got a new role with the company that I love, and have spent a wonderful time volunteering with International Scouts in Belgium. Also had two weeks working hard in Australia, the first time I have been to that side of the world. All told this had taken my mind of what's happened to me over the last year.
I hadn't realized really what impact prostate cancer has had on me, the diagnosis, the change in my life from pre diagnosis to post diagnosis, the treatment and how I am living my life now , to my future life. Not until the weekend when I attended a support meeting for men who are going through this.
At the meeting we were asked to recount our lives pre cancer, during diagnosis, post treatment and how we saw the way forward. Despite being a methodical person, always analyzing things, I hadn't really gone to this level of analysis. Sat there in a room with other guys and having agreed to be wired up as this was for medical research I really relived everything, not just the last year, but my whole life. Only men can really know what I am driving at , and also only men who have gone through or are going through PCa and the side effects.
From the happiness of describing 52 years of my life, the ups and the downs , to the shock of the diagnosis, sitting in a room alone with a clinical nurse being told you had cancer - the NHS consultant didn't even have the balls to tell me himself. Sat crying in a carpark, then plucking up the courage to phone my family and tell them. It was at this point of reliving this that all those emotions started to pour from me again. I couldn't believe that here I was , with complete strangers , crying. The elation of finding a private consultant, Alan Doherty who gave me the courage to sort myself and the cancer out and gave me hope - this helped steady my nerves.
I was then asked how I felt moving forward and the impact of erectile dysfunction, loss of libido and my identity. My identity - am I a man - I don't know anymore. Physically, I probably look the same to the whole world, but inside I don't feel that. I have lost something 2/3rds ( if I am lucky ) through my life that can never come back. There is something about the male sexual identity and how you feel emotionally that drives you on each day. That has gone. Is that what makes me sad when I am alone. All these thoughts of the change to my sex life and how this relates to by sexual identity and my gender identity came flooding back and caused me another round of shaking and tears. Maybe its because I have studied 'identity' as part of the training I do for diversity for the Scout Association which really made me think and brought things on on Saturday. It made me think of what life has in store for me and my partner in life.
When you choose your treatment , you look at the priorities and you can be quite carte blanche at sorting the cancer, sorting incontinence and then sorting erectile dysfunction.
I have been lucky in that my operation to remove the cancer has gone well. I have worked hard and the incontinence is sorted - though I concentrate every time I make sudden movements or sneeze or cough to make sure I don't wet myself - especially in public.
The erections are not there, I take the tablets daily, I use the pump but I am a failure at everything that goes with this. The emotions have gone. You start the act and then it turns to failure and in the end you give up. After a while you don't try anymore, its too embarrassing to be that failure. There is a disconnect between the brain and the nerves that control things. There are signs of life but will it come back. They say it will, but its not the same. It never will be - no matter what the medical people say. Medical people may have done everything they can to cure the cancer but the mental scars of what's happened can never be healed. I try to block out these thoughts, but when alone with nothing to take you mind of things, you reminisce of your past life and the good times, the sad things is that I can see them now, but the feelings I had during those times are lost.
It was an emotional uplift Saturday, being able to talk through all this with people who understood. These were not medical people, physcosexual counselors or other welfare people. They were others who had been or were going through the same emotional turmoil I am going through. And do you know - days afterwards - I feel so much better as I had those great guys to talk to.
So NHS and other medical facilities - drugs and surgery are not everything - we need the aftercare, not weeks after, but continued care during the difficult times whilst we deal with the side effects.
..... 2 weeks and I go and get my 12 month PSA test post op........
I have my work and my work keeps me going ... looking forward to talking at the support meeting in November .. it helps .. just wish there was more support locally.
