I had been told beforehand that there would be another guy representing prostate cancer. I didn’t quite understand it at the time. Having two guys talking about the same thing seems a bit of a waste to me. It can work if the guys have had two totally different experiences or procedures but the organiser certainly didn’t know that when she requested me.
Through Prostate Cancer UK I had arranged to be part of a health panel, representing and discussing prostate cancer, at the end of an annual 5K fun run. It was a fair distance away on the other side of London but I got there on time despite the transport systems best efforts. The last of the runners had settled in and I was the first panelist to have arrived. Out of all the runners, there were about 5 guys. I introduced myself to the organiser and we exchanged pleasantries. Before I sat down the organiser said to me, “You can smile you know!”.
Gee whizz! Now I had to be on flipping smiley patrol.
I took a seat at the front of the room, in one of the four comfy chairs facing the crowd. There was food provided for the runners so not to be rude I went over and filled my face. It was only polite. As I sat back down another panelist joined me to my right. I wanted to shake her hand and say hello but I was in the middle of an intimate conversation with a couple of chicken wrap thingies so I just nodded, and smiled instead.
Now I had turned up in jeans and trainers and a tee shirt. I didn’t look like a tramp, not at all. I was quite acceptable. I certainly wouldn’t be collecting an award from the Queen in what I was wearing but I was OK. You know street chic. There I am minding my own business, getting freaky with the third and fourth chicken wrap thingy, cake and my orange juice and then in he comes. The second prostate cancer panelist. A tall, good looking, slim black man, immaculate dreads, suit jacket, designer jeans and crisp shiny black shoes. I didn’t get that close but I could imagine his cologne or natural oil was more appealing than the chicken wrap thingy smell I had unintentionally smeared myself with.
No, damn Smooth, at your service.
And he had to go and sit right next to me.
Instantaneously, I became the poor relation.
The runners were a wet and sweaty collective huddled mass. I didn’t quite have the excuse.
I became Billy the flipping, friendly scarecrow. Oh but at least a smiling one.
We got talking and he is actually a really nice guy. I told him a little about my story from diagnosis to the blog. As he knows the road-map I could wrap it up in less than three minutes. He even sounded like a cup of hot chocolate.
Then he told me his story.
He has been having annual MOT checks and decided two years ago to add the PSA test to the list of tests as he had heard about it. He got a call after one of the tests, his PSA was a bit higher than they expected so they wanted to send him for further testing. He went through the normal battery of tests – the digital rectal examination (DRE), flow test, ultrasound and MRI scan. If these are not conclusive enough then the last test is the biopsy. The biopsy is the final test to determine if you have prostate cancer. It provides irrefutable evidence that you have it and it will also tell you how much you have of it and how fast it is growing. It’s a very invasive procedure which will lead to bleeding in your urine for a while afterwards and of course the dreaded ‘razor blade’ pee. That’s when you are passing the blood clots out via peeing and to date, it’s the most painful experience of my life. Thankfully it only happens once.
The results of his biopsy concluded that he did indeed have prostate cancer but he didn’t need immediate treatment and they would put him under active surveillance instead. Active surveillance is where the PSA is tested regularly, usually quarterly, to determine how fast it is moving. Theoretically you could be on active surveillance for years without needing any treatment if the cancer is found to be slow-moving. At some stage in the future he may need to discuss options if the PSA is still rising or they could just extend the time between testing. He also changed his diet and for a time his PSA actually stabilised.
That should have been the end of it.
However, he had some traumatic experiences in his life which caused him a lot of stress. His PSA shot up. The consultant then did something unthinkable, something that still makes me scratch and shake my bean head.
He ordered another biopsy.
A good analogy of a biopsy is to think of a pineapple and an apple corer, the scale might be slightly off, but its accurate otherwise. You take a number of samples out of the pineapple with the corer, say between eighteen and twenty four in different locations. These are what you then test for prostate cancer.
There are now between eighteen and twenty four holes in the prostate. Up to now all I had thought about was the damage that these holes may have done to the two nerve bundles that surround the prostate. These nerve bundles control the Kings hydraulics. Will they regenerate? How long before they do? Will it affect the Kings function? There is one more important thing that I did not think about however. These holes can allow cancer cells to escape into the rest of the body, however minute.
He has now had this procedure done twice. This is a definitive procedure. I have never heard of anyone having two of them.
At the time he didn’t question the consultant, he is the doctor, he knows what he is doing. It turns out he knows one of the guys from my cancer support group who was horrified at his story and explained to him in detail what had happened to his prostate. Now that he has had not one but two of these procedures, furious he eventually confronted the consultant. He told the consultant to look him in the face and tell him that the second biopsy was necessary and if the tables were turned would he also have the two biopsies. The consultant turned pale, flustered a word or two and then didn’t say a word. He couldn’t say a word.
He demanded to be assigned to another hospital.
There were five of us in total. One breast cancer survivor, Mr Smooth, someone with rheumatoid arthritis and another guy with lupus. There were thirty odd runners in the room and once the last panellist, the rheumatoid arthritis sufferer, had arrived we were ready to go. I remembered that I needed to be smiling. The organiser asked us for a brief introduction of ourselves. Most of us kept to two minutes, others hogged it a little more. I went before Mr Smooth, I represented the appetiser consisting of three and a half prawns on an oversized paper plate, piece of cold juice and no salad. While Mr Smooth represented the braised Welsh lamb shoulder with anchovy, confit garlic and sauce soubise. Oh and did I mention the Royal Dalton bone china plate with gold trim.
After the introductions the organiser told us a bit about the charity and the run. She also presented a special award to one of the sufferers who was not there in person but via a link on an iPad. When you hear about people suffering with chronic pain 24/7 and not complaining about it, it puts your grumbles into perspective. She was a worthy winner. Next she asked us about how we coped at our lowest ebbs with our various ailments. Everyone attributed their faith to the healing process along with the support of friends and family. I added having a dark sense of humour and the blog never lets me forget what I have been through and wanting to talk to men, however challenging to get the message out there. I also added that as much as I have faith I had a dim view of church when it comes to talking to their men. I have a faith based version of my journey and a normal version of my journey that I use when I am not in a church environment. Churches tend to relegate a prostate cancer talk to some single obscure date when they have a health seminar or similar. Prostate cancer does not give a fig about your special health day it wants to kill you all the time. Unintentionally, I kinda spat out in disgust that last bit of my statement.
The floor was then open. A couple of hands shot up and the guy nearest the organiser was chosen.
“I have some friends that I have been trying to convince to go and get tested but they just won’t have it. How do you convince black men to go and get tested? ” The smile wasn’t false or bullied out of me now as I fondly reminisced. Mr Smooth jumped in with a reply before I could say anything,
“I have only done a few talks but my friend here has done many more. Perhaps he would be best to answer that question”
His friend the scarecrow took a stab. I had remembered not to drop the smile.
I told him how when I first started out I took my failure to heart. I would talk to white men. Easy peasy. They got it, asked questions and would be going to get tested. Black men would listen, generally ignore and convince themselves that it would be some other person. Maybe the person behind them. I said that some of it is ignorance. I mentioned that the early stages of prostate cancer there are generally no symptoms. Also that black men have been surprised that that the main test is a blood test and not just the DRE which they all seem to know about. I added that what I say to guys about the DRE is that your sisters, daughters, wives, girlfriends go through ten times worse when they have their smear tests or any other examination down thee so they would love to swap that for a finger up their bum for thirty seconds. Something happened that had never happened before when I said that. All the women in the room applauded.
I finished by saying that I learned that when I speak to a black group I am talking to one out of the thirty and that’s all I can do and I’m happy with that now.
Mr Smooth took the next prostate cancer question. He had already disclosed that he is a life coach and the question had to do with lifestyle.
Then the organiser announced that there was only time for two more questions. My smile disappeared like a hot KFC bucket in prison. I thought I had misheard. Some guy at the back sucked out the little piece of time making some announcement (well make it after the important questions fool!) and then there was one question for the lupus sufferer.
Then, “Thank you for coming and see you next year” from the organiser. That was it. ‘Poof!”, the end, clear the room please. It was as abrupt as asking a nun for a fag and a date.
I was mildly annoyed. No sod it I was quite pissed. I know the room is only hired for a set time but there are real people with real important questions. The only thing that gets me more than having to shorten my talk is when people cannot ask questions. I stayed behind to give out some Prostate Cancer UK literature and cards for my blog. I did meet some very nice and useful people going forward so it was still worthwhile. I spoke to a couple of people and to the guy that asked me about how to talk to black guys and filled him in a bit more about my other talks. He said he had only come to hear about prostate cancer and was a little disappointed that it was so short. A few minutes in to our talk he asked a question,
“Can I bring along some of my friends to your next talk?”
I said “Sure, I don’t know when it was though, but I do update the blog with details.”
He looked bemused and then said, “But this is you isn’t it?”
He showed me his mobile phone which had a picture of a prostate cancer flyer with my name in bold on the left hand side of it. “Ah yes, that’s the one” I said trying to style it out.
I had never seen that flyer before.
I had the date on my calendar at home but had forgotten that it was this coming Friday and I didn’t have the address as yet.
“I will see you there then”
Indeed you will and not Billy this time.