I was 46 and was being treated for skin cancer on my arm when I first discovered I had penile cancer. Around the same time, I discovered a legion on my penis but my doctor told me it was just a genital wart and not to worry. 11 months later, I was diagnosed with penile cancer.
There was a red legion on the side of my penis that looked like a pimple. Being told it was just a genital wart, I was given wart cream to use but over time it had grown to the size of a five cent piece. By the time I was diagnosed, I was already at stage three and it had grown to the size of a 10 cent piece at the base of my penis.
I had to have what they call a Penectomy, which is a total amputation. The legion had worked its way to the very base of the penis. There was no chance of me having a Glansectomy because the cancer had already spread so far. So it was the only option.
Everyday is a different day. Part of the procedure was that I had to have a Perineal Urethrostomy where they reroute your urethra between the base of your testicles and your anus. How I describe it is that I have a hole at the bottom of my testicles where I have to sit down to go to the toilet to urinate.
I actually also suffer from a condition called Psoriasis as well which is a skin disease and the legion at the time resembled that of Bowen’s Disease. They are both very similar in appearance and hence the reason why the doctors never picked it up.
I’m a redhead with fair skin. I’ve had 30-40 odd SCC’s (Squamous Cell Carcinoma) burnt off over the last couple of years and one of them just happened to be on my penis. I never sunbake or go swimming naked, it just somehow appeared there.
Apart from my now ex-wife, my kids and a handful of friends, no. In 2014/2015, I thought I was the only person in the world that had this type of Cancer. I found no support networks, Cancer Council had nothing, Cancer Institution of Australia had nothing, and so as a result, I started my own charity in 2016. To raise awareness, education, and support for the guys that get diagnosed with this type of cancer. We now have a Facebook group with over 300 members in it which I am the admin and owner of. The charity is called Check You Tackle and the Facebook group is called Penile Cancer Awareness Support Group.
I’m now a single man and I’m very reserved when it comes to going out and trying to date. All this stuff plays in the back of your mind. Particularly when you were married for 33 years and your wife walks out on you to be with another man. There’s no malice towards her, it’s just one of those things. I couldn’t give her what she wanted.
I’m 53, so I’m not old but I’m not young - we all still have needs and wants. And not being able to do that, that’s the stuff that really plays on the back of your mind. That’s the emotional rollercoaster you go through every day. If you can put that in the back of your mind, life is fine. But if you’re looking for a companion, you have great reservations and doubt. I see it in the guys in the group every day but I try to tell them that a penis doesn't make you a man. It’s only a part of you. It’s what you do, how you hold yourself, what you achieve in life and your actions is what defines you as a man.
Once you love yourself again, you realise that you still have the ability to do certain things. I went through 7 months of isolation and didn’t come out of the bedroom until I woke up to the reality that life is not that bad. I’m still alive and there’s things in life that I’ve achieved that others aren't going to or unable to. When you go to Westmead Hospital and see teenagers and children there, you gain a different perspective.
I started going in for some psychological treatment and when you walk through the various cancer wards, it definitely gives you a bit of a reality check. You’re still alive, still breathing, eating, you’re able to communicate, talk, walk, and do all of life’s mundane stuff. Yeah ok you’ve gotta go and sit down to piss every now and then but it’s part of life. Once you learn to accept that that is the reality of your life, you’re able to move on
I’ve been off treatment for 12 months now, but I am still vigilant. I still go and see my skin cancer doctor and get my scan done every 6 months. Everyone has the recurrence scare and everyone thinks it's going to come back. So it’s the only way to stay on top of it and make sure it doesn't come back.
I suppose you need to be able to take a step back and take a look at what’s going on around you. Realise that at some point in life it’s probably not as bad as what you might think or feel.
There’s always that one person going through something worse than you are. I’m not saying don’t feel sorry for yourself but the reality is that every day is a different day, every day is a new day and you should take the days as they come. Don’t dwell on the past.
I tell people that my cancer journey was a walk in the park and I say that purely because of all the other stuff I have going on now, everyday life. For instance, I spent four days in hospital last month from septic shock because I had stage 2 Lymphedema since the operation because I had nerves taken out. So I got a slight infection so the next thing I’m in hospital. And this is ongoing for the rest of my life. And that’s what happens with everyone who goes through cancer. You get compromised immune systems.
So just try to move on with your life and take it a day at a time. The worst thing anyone can do is think to themselves ‘oh I wonder if I had done this, I wonder if I had this treatment. It’s the worst thing you can do. It’s best to accept that you’ve had the treatment done, close the book and move on and do the best you can do. I felt like I had lost my identity but it’s just a matter of taking a step back and redefining who you are as a person.
The Australian and New Zealand Urogenital and Prostate (ANZUP) Cancer Trials Group is based on the goal to bring together all of the different professional disciplines and groups involved in researching and treating urogenital cancers. Their trials are global for below-the-belt cancers.
Throughout the month of May, ANZUP is encouraging Aussies and Kiwis to get up and get moving to raise vital funds for below-the-belt cancer research in their ‘Below the Belt #YourWay’.
For more information, visit https://www.anzup.org.au/ and https://www.belowthebelt.org.au/