Victoria CullenComment

"I had a fear of becoming a smelly old man"

Victoria CullenComment
"I had a fear of becoming a smelly old man"

It was like any other Wednesday afternoon... except on this one I was sitting opposite Martin in his delightful Abbotsford abode, he was proudly wielding a small black item around, and I was pointing at it and exclaiming  :

"Why don't WE get those?!"

Actually, thinking about it, this Wednesday was quite unique.

Heather and Martin have been married for over 20 years, they have three children and they are currently experiencing the side effects of prostate cancer treatment. I was part of the team they put together for their journey through prostatectomy and the continuous recovery after surgery. They contacted me to help them adapt to a new sexual normal with the erectile dysfunction they were experiencing after surgery.

We stayed in touch due to a shared passion for advocacy around helping people with their quality of life post medical intervention Through conversations we realised that there was a lack of information and stories about the most sensitive yet important parts of the journey, such as erectile dysfunction and incontinence. When you start the journey, you collect a lot of leaflets and go to a lot of appointments with healthcare professionals, but there is potentially a lot to gain from simply hearing other people talk about their experience.

So here we were, in their apartment with a MacGyvered film set and my wonderful friend and film producer Jayde chasing light around the room. 

We had spent the morning covering a wealth of topics from partner self-care, to improving communication through mindfulness, to what it was really like seeing a psychologist (all these will be released every week on this blog, sign up here to get sent the next one). We were onto talking about the subjects that many would see as 'private'.

This was why we were here though. Challenges such as erectile dysfunction and incontinence are experienced by millions of people in Australia (according to the Continence Foundation an estimated 4 million Australians currently have incontinence issues), however most of those people feel alone in their experience because the conversation is not out in the open. 

I reassured Martin, as I did throughout the process, that he only had to share what he felt comfortable sharing. He assured me he was comfortable speaking frankly and openly about the truth of the matter. This is the frank dialogue they wish they had benefited from earlier and wanted others to have that opportunity. 

I sat opposite the kitchen table from him, just next to the camera, and as casually as 'over a cup of tea chats', I asked him about what he thought incontinence was going to be like, and what actually happened. I asked a question that lit his eyes up and sent him darting across the room to rifle through a bag...

"What do you wish you could tell others who are about to go through this?"

He hurried back to the table and what began (.. minutes in) was an improvised, real talk, infomercial - on incontinence pads. He explained that one of the most challenging parts of the incontinence journey was simply finding the right equipment and finding out that the fears around it were unfounded. (top tip : Heather mentioned later on that wet wipes were also essential and suggests keeping a stash in every bag plus boot of the car).

Even though my profession and research practice is based around making sensitive conversations comfortable, it is still always amazing to me how easily "private matters" can be discussed when you just start doing it. After Martin showed off the last 'cute little black number', (the sleek Porsche of all incontinence pads), Jayde and myself couldn't help but exclaim that the female pad market was seriously lacking in style! Those are sometimes the most joyful moments in open dialogue on real issues, the unexpected shared reality.

 

NOTE : This video series is a voluntary project. Everyone involved gave their time for free. It was produced by Film & Storytelling Specialist Jayde Harding and myself (Victoria Cullen). Heather and Martin, the stars of the show, are happy for this footage to be distributed online in order to help others going through the prostate cancer journey. They are speaking from their experience only.