I Almost Died. Then I Walked 4000km So No One Else Has To Follow In My Footsteps.
During the last six months of 2007, my life was going really well.
I had two children, I had just finished renovating my house, and I was working seven days a week driving trucks for a living.
A few times a week I would reach down to scratch what looked like a blister on the mole on my left ankle. Sometimes in the evening I would take my boots and socks off and notice blood on my socks.
My wife-to-be Janine kept telling me to go to the doctor to get this mole checked.
“I’ll be fine," I said.
In December 2007, Janine insisted I get the blister checked. It kept bleeding, changing colour and changing shape -- plus, I thought, Janine is always right, so I should listen.
I went to the GP. He took one look at it, and said, "It’s got to come out ASAP."
He took it out, and the pathology results came back. It was a melanoma, 1.95mm deep.
I was then referred to Melanoma Institute Australia (MIA). Specialist Dr Michael Quinn explained a few procedures, but one in particular had me worried -- he would need to check some lymph nodes in my left groin.
A few weeks later, on Valentine’s Day, I was in having three lymph nodes removed from my left groin, and more skin taken from where the mole was on my left ankle.
Going to get the results a few weeks later absolutely shattered my world. One lymph node had microscopic melanoma cells in it, and the extra skin they took from my ankle also had clusters of melanoma cells in it.
The fear that came over me is one I will never ever, forget. I was absolutely shattered and devastated.
The doctor said that if the melanoma had spread to my organs, which is the most common places melanoma spreads to, there wasn’t much they could do to stop the aggressive disease.
He then said I would need a bigger, riskier operation where they'd take the rest of the nodes out of my left groin. But first they needed to do a CT scan of my entire body, to make sure there was no further spread.
Driving the two-hour journey home after the appointment I was crying, so upset, thinking I was going to die of melanoma.
Upon returning home, my parents came down, and I remember we were all just sitting in silence around the table in the backyard, just gutted. There were many tears, and the fear that I may die from this terrible cancer was real.
I waited a week to have the CT scan and it was by far the scariest week of my life. I hardly slept and was petrified the melanoma was running throughout my body.
I had the scan, and lucky for me there were no traces of melanoma -- at least that a scan could see. It was such a relief.
The very next morning at 6.00, I went into Royal Prince Alfred hospital in Sydney and had another 11 lymph nodes removed, along with tissue from my stomach that left me with 44 staples from my stomach to my thigh.
I got the results a few weeks later: everything was clear.
I was very lucky I went to get the mole checked when I did. My wife Janine had most certainly saved my life.
Recovery was tough. I had a drain in my leg for three weeks, and being at home during the days were the worst. Everyone was at work, I had just been given the all-clear, but fear was running through my mind.
"What if it comes back?”
"What about this massive scar?”
"Does anyone survive this disease?”
I desperately needed to speak to someone who had survived, and I needed more information right away. Back then, I didn’t know how to turn a computer on -- I didn’t even have an email address. I was a truck driver -- I never needed to do anything online, so I never learned how.
I remember waiting endlessly for my sister, who lived with me at the time, to come home so she could help me. Then for hours each night I'd Google 'melanoma' -- I just needed to know that there was hope.
For eight months I was at home and was a complete mess. Many nights were spent crying myself to sleep in the worst fear I had ever experienced. I tried to go back and drive trucks, but I just had a different mindset. I didn’t want to be sitting in a truck all day if this disease was going to come back and get me.
I could not understand why I didn’t know anything about melanoma at the age of 32.
My doctor suggested that because I had used indoor tanning machines when I was in my 20s, this may have contributed to my diagnosis -- so I started a campaign to try and ban them. They were dangerous and were killing people.
While advocating to try and change legislation, I met a bloke who was the chairman of Melanoma Institute Australia, Reg Richardson. After many phone calls chatting to Reg, he appointed me Community Coordinator a few days a week for MIA.
I stopped truck driving and absolutely loved my new role.
It was during this time that I started really feeling one of the side effects of having my nodes removed -- my left leg would swell up. So, I started swimming and walking and would elevate my leg each night to bring the fluid down.
While walking, I met a guy named Andrew Rust who also had melanoma, and we decided to walk together from Sydney to Melbourne: 16 days, 900km. We conquered it, and together with a great team of volunteers, we raised a massive $165,000 for melanoma research.
Not stopping there, in 2017 I walked from Brisbane to Sydney, and most recently, I walked from Adelaide to Sydney. The three walks have taken 95 days, over 4,000km, and have raised more than one million dollars.
It’s been a great team effort by the whole melanoma community across Australia. My goal is to keep walking, eventually covering the whole of Australia. The funds raised are very important, but the awareness, goodwill and the support these walks give to the communities across Australia is crucial.
After many years of advocating, running petitions, meetings with many politicians, Federal and State, even completing six months of work experience with The Greens' Lee Rhiannon -- commercial indoor tanning machines have been outlawed across Australia.
I like to think that the young lady Clare Oliver who sadly passed away in September 2007 started the campaign. I feel proud that I was able to finish it for her.
This ban will save our future generations from developing melanoma.
I’m a man on a mission, and not going to stop until a cure for melanoma is found.
Catch Jay's documentary Jay's Longest Melanoma Walk Sunday, September 22 at 1pm on Channel 10 and 10 Play.