Mark

It was the week between Christmas and New Year 2018. I had a smallish mole on my neck, that had been checked and re-checked. Then the doctor told me that he may need to cut it out and do a biopsy. Unfortunately, the word came back from pathology that it was melanoma. Now I’m not afraid of dying. It’s the living that worries me, especially with a cancer that spreads. That’s what threw me. That was the hardest thing to calculate how my condition might advance.

The information I received was scant. My doctor told me it was stage 1 (suggesting this was good news). But then told me that within that range, I could be stage 2.

Now the problem is when someone says you have a melanoma, everything else stops. Once he said that I thought I had stage 2. My wife looked it up on the net and of course, I was worried. My doctor having spoken with me for a short time, told me had booked me in to the Melanoma Institute for surgery (to do the margins). Then he said he had to go to tend to more patients which left me with a lot of concerns.

To be frank, I was confused and remained unclear to me how much danger I was in. I rang the NSW support service and received a phone message. Then I rang Melanoma Patients Australia and managed to talk to their Telehealth Nurse, Nita. She asked for the pathology and took her time reading it. Then explained that this was, in some form, good news. She also calmed me down and generally did what great counsellors do – she listened.

My treatment was pretty good really. (If you think a long scar on your neck that makes you look like an extra in a pirate movie is a good thing!) Seriously though, that was to clear the margins and it has healed pretty well. It’s funny, being diagnosed seemed like such a big thing to me, so just trundling in amongst all the other people throws you a little bit. In truth that’s the way medicine has to work, I suppose just to deal with the volume of patients.

My advice would be to find a knowledgeable person to look at the pathology and talk you through the options. That person ideally should be capable of empathy and allow you to say what’s on your mind. Your fears and anything else you have bottled up inside you.

For me, knowledge was the key. I was lucky that I had stage 1, but I needed good information and a willing listener. My view is that doctors are potentially great with the technicalities but because of their personalities or the pressure of the work they can’t always help you get your head right.

In my case, Nita Murray from Melanoma Patients Australia did that. I think with modern medicine presenting so much information that can be highly technical, a person who sits between the doctor and the patients is essential.

For about two years I was terrified of the sun. I’m still more cautious than ever, and I’ve been pretty careful with regular skin checks and plenty of slip, slap, slop. I think I have more proportion now. I still surf with a wetsuit, a hat and suncream – at the better times of the day. I know I’m going to die one day… so I’ve decided because I love the ocean so much that I have to take a calculated risk.

Well like I said, dying doesn’t bother me but living can be hard with a bad cancer. My dog dies, everything dies. It’s the living that I worry about. I want to choose the best terms to live. For me, melanoma is strangely inconvenient because if I get a later stage version, I can see it being a long drawn out process. Nobody wants that.

I’m dropping into a wave. I’m holding my grandson or seeing my wife and kids fulfil themselves. That’s life and I want to keep living it as well as I can.