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Dis-Ease: Living with Prostate Cancer

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Putting Men First: Prostate Cancer UK Staff Away Day

I have been asked to speak at Prostate Cancer UK’s staff away day on July 4th. I’m planning to say something like this (I speak from memory and this is what is floating around in my head).

When I first told people I had prostate cancer the general response was: Oh, that’s not too bad. All men get prostate cancer. You’ll live to be an old man and die peacefully. It was a bit disturbing. I got none of the cancer perks: sad looks, long hugs, a colourful ribbon, casseroles brought to my door. So, I started writing about prostate cancer on my website. The first topic I tackled: The prostate is a colossal design flaw. Within days a joke was sent to my Facebook wall:

Three engineers were sitting in a bar and one said he thought God must be an engineer but wasn’t sure what kind of engineer.

After some silence one of them said God must be a mechanical engineer: Just look at the intricacy of bones and joints, the interplay of leverages.

No, said the second one, he's an electrical engineer: Look at the complexity of the nerve signalling systems, the finely balanced electric charges and flow, the billions of synapse sparking in the brain.

No I think both of you are wrong said the third: God’s a civil engineer because only a civil engineer would lay a sewage pipe through a recreational area.

So far I’ve survived, but that’s not the whole story. When I got my gall bladder out, I went to the hospital, they cut me open, cut out the gall bladder, closed me up and sent me home in a couple of days. Except for occasional heartburn, end of story. Not so for prostate cancer. There are drainage pipes and storm damaged recreational areas to contend with.

When it became clear that I should get treatment I said to my wife I wasn’t sure I would go ahead. I mean there was the whole thing about pissing in your pants and diapers. Diapers! I called my Man-Diapers. Seemed to help. But eventually I said to my wife: pissing in my Man-Diapers or possibly dying. Man-Diapers or Death.

I was lucky. I only needed my Man-Diapers for a day and a half and pads for only ten days or so. Thank God for kegel exercises. Good news, but next was the tricky business of the recreational area. While the surgeon didn’t cut out my libido he sure had to mess with those nerve bundles which means my penis is on strike. I’ve got to tell you, it’s a weird feeling. And while the recreational area is shut down there’s none of that good old fashion fun. It’s difficult and it also means no fun for the one you love.

Eventually came that fateful day when your specialist nurse told me about solutions for erectile dysfunction. First he pulled at a device that I would cram down my penis to lodge a pellet the size of a grain of rice. He held up the plunger and we both cringed. The second option…And he reaches for a needle that I would use to inject a magic solution in to the base of my penis. I didn’t say anything. There is a third option he said…And he picked up a cylinder that I stick my penis into, few pumps, and there you have it. So, which would you like to start with? I looked up at the ceiling and thought: Let’s see. Jam a plunger down my penis, or stick a needle in my penis, or place my penis in a clear plastic tube. Well, just off the top of my head, on the spur of the moment, I think I’ll go with the pump. Yes, the pump will do me just fine. He pump is for me.

Bad plumping. Recreational area shut down for you and the one you love for what might be a very long time. And blood tests for the rest of my life to see if the bastard cancer is hiding away, waiting to return to grow rapidly or slowly eventually committing suicide by killing its host – which would be me.

Now there are two or three sentences that would enable me to easily and seamlessly make the transition from talking about me to talking about you. Problem is I can’t think what they are. So, I need you to trust me when I say this: What has happened to me, what is happening to me and what will happen to me is intimately connected to what you have done, what you are now doing and what you will do.

When I was first diagnosed a friend whose husband had died of prostate cancer told me to get in touch with the prostate charity. I first did that by going to your website. The website was, is, great. I can tell that because I can actually use the damn thing. Are there any people here who work on the website. Could you stand up. You guys are doing a great job. Thanks.

I then called a specialist nurse. What can I say about you guys? I’m not kidding. Expertise, sensitivity, caring and time. I couldn’t believe I had time. Do you know how important time is? When anxiety or fear is clouding your heart and mind, time is important. Any nurses here today. Please stand up. Thank you. If I weren’t already married, and I weren’t getting old and undesirable, I would ask you all to marry me.

The first nurse I talked to arranged for the Tool Kit to be sent to me. Now I need to tell you I read a lot about prostate cancer and diagnosis and Gleason Scores and biopsies and treatments. I read books. I went to the Internet (my GP keeps pleading with me to stop diagnosing myself on the internet). I even read the John’s Hopkins’ report. The Tool Kit is great. Any Tool Kit folks here today. Stand up. Goodness, I’d marry you all but I’m already marrying the nurses.

Through the Campaign and Policy Forum I’m now getting a feeling for how campaigns are planned and run. The intelligence and expertise that goes into the planning and decision making. I participated in the event at Westminster when volunteers spoke to their MP’s about the Care Guidelines and so had a glimpse of how you plan and organise and educate. I even was interviewed by your communication people, which I must say was the ultimate challenge for them. You’re doing great work.

Now, I bet there are days when some of you come into work and it’s raining and you look up and it feels like it’s been raining forever. You come into work and you’d had a fight with you wife or husband or partner. You come into work and you screw up. You come into work and you just don’t want to think about her; you know you should because her husband just died and hear she is volunteering for any damn thing you ask her to do; you know you should think about her because she is courageous and strong, but you just can’t today, not today because it hurts too damn much. You come into work and you can’t help but think it’s just a job, just a job up against one man every hour, just a damn job and it’s raining again.

I know there are two or three sentences, two or three prefect sentences, that if I only said them aloud the sun would shine and wipe away all the greyness and you would bounce into work knowing that together with your collective intelligence, collective passion and collective creativity, you would win. Maybe not today. Maybe not tomorrow. But soon you will defeat the fear, the pain, the suffering the mourning. You will defeat this Death. The problem is I just can’t find those two or three perfect sentences.  

So I need you trust me when I say this: What you do and who you are matters. What you did, what you are doing and what you will do matters. Who you have been, who you are and who will be matters. You matter to me.

At times language can be very restricting. I am left with only two words. They are “thank you.” So from me, and hundreds if not thousands of other men and women, wives, sons and daughters, mothers and fathers, brothers and sisters, cousins and goodness knows how many friends, Thank You.

Copyright © 2013 Dale Rominger

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