I got an email from Prostate Cancer UK asking me if I would be up for a virtual awareness talk. Now as much as I miss and would love to do an awareness talk in person, I don’t miss or love Covid (which apparently is spreading like wildfire in London) so it was a no brainer.
The talk was for a metal company based up north. Initially I thought burly, no nonsense men, throwing girders around like boxes with callouses resembling pavement slabs. The reality, from what I saw was perfectly manicured and moisturised blokes, like myself, in either home or office settings.
I had dusted off the last presentation and added the company logo, date and only one other addition. I had added a line about the ‘missing 14,000’. These are the men Prostate Cancer UK have said that didn’t get a test or follow up during the two years of the pandemic. I also took out some slides regarding my diagnosis and treatment as they had only scheduled 45mins for the talk. I may in the future add a page with a list of celebrities that most people will know that have been diagnosed with prostate cancer and a few of those that have unfortunately died.
They were very quiet during the presentation. I think that must be the first where no-one asked me any questions while I was presenting, even though I told them not to hesitate to ask or get me to clarify anything. The first question was about national screening. I told them that a national screening program like women’s smear tests was never going to happen. It was never going to happen because of the cost and the number of false negatives that can occur with the testing. There is also the matter of that little white paper that the government produced ‘Prostate cancer risk management programme benefits and risks of PSA testing.’ I was lucky that I had a doctor that had either never received the message that he should not ask his patients if they wanted to have a PSA test or had just ignored it.
The next question was why some doctors or clinics won’t allow men to have a PSA test. I had explained that thoroughly earlier in the presentation, but it was still met with disbelief. I had to explain it again. I said that just about every time I do an in person chat there will be at least one guy that will tell me that they were refused a test when they asked for it. The guy asked me what should they do? I said they have to kick up a fuss or if they were to mention that a close relation was diagnosed with prostate cancer then the doctor or surgery would weigh up the cost of legal action if they didn’t conduct the test and will conduct the test. Yes, it may be stretching the truth a little, but this could be life and death.
One guy was very concerned, he had a friend that had exhibited all of the symptoms that I had explained in the presentation. This even included the extreme example where I mentioned that a colleague, at Prostate Cancer UK, had been peeing blood for eight months. He could not understand why no-one had given him a PSA test or why his friend had not insisted on one himself. I said I was no doctor, but his friend had to insist on one, even if it was just to eliminate it. He agreed that his friend could just be scared or in denial and he would suggest it to him. I really wish I could get a follow up on his friend, but I have learnt by now that that never happens.
I don’t remember the question that prompted me to bring up the 6% but something triggered it. The 6% is the number of men that regain erectile function after undergoing the radical operation. I was still hesitant to mention it, but I just felt led to bring it up.
With hindsight, because I couldn’t see my audience, I had no real idea how the revelation was received. I do know I felt something that I had not felt before. It’s hard to think of the word or words to describe it but I knew that this would be the first and last time I would mention the 6%.
It was melancholy.
I thought back to my first time in the prostate cancer UK office and when we were doing round table introductions. Everyone had mentioned their name and what made them want to become a spokesperson. This guy mentioned his name and then said “And downstairs is useless and does not work anymore” or something very similar. I had never forgotten the occasion.
It’s one of the hardest decisions I have ever made in my prostate cancer walk. I know that I won’t ever mention the 6%. I don’t want to ever influence someone’s decision and putting out that figure WILL influence someone. It’s much like I wont advocate one treatment over another.
I am also really struggling with being authentic with what I know.