You hear the sentiment that you should live every day as if it’s your last, but when you’re looking down the barrel of your mortality that is so exhausting because everything you do in your daily life you’re doing because you’re dying.
I don’t go a day where I don’t think about the fact that I’m dying. I sometimes get sad and angry, but mostly I’ve just accepted it. For me now, it’s not about getting better, or a miracle cure, it’s about buying time to live a little bit more with the people I love before this cancer takes me away.
I was working in East Timor in 2012, and on my weekends off I was a keen scuba diver.
One day I was removing my wetsuit when a complete stranger noticed I had an unusual looking mole. I’m a blue eyed, red-head and I’d always been careful in the sun because I’m the type of complexion that burns instead of tans.
I was going home for a holiday anyway so I booked an appointment, and my doctor removed the mole immediately. They sent it off for testing the results told me it was a melanoma.
The good news was that it was a “good melanoma” because it was really thin, only half a millimetre deep, so after they cut it out they gave me a 95 per cent chance of it being cured – to me that meant 100 per cent.
I went back to Timor with doctor’s orders to have three-monthly check ups which I flew home to Brisbane for religiously. The biggest concern with melanoma is that another one will pop up somewhere so I was being vigilant with checks and sun safety.
About a year later I discovered a lump under my left arm, same side as the melanoma, and I immediately thought “lymph.” I packed up my life and came home for good.
I did a biopsy straight away and it appeared that I was in the unlucky 5 per cent where the melanoma had spread. Full body scans revealed that it was only in my lymph nodes, so we removed them. Stage 3 melanoma has a 70 per cent chance of recurring which was devastating for me to hear.
This felt like everything was over for me. I would never get married. I would never have children. I couldn’t see this having a happy ending.
I began dating a beautiful man I had known for a little while at the time I was diagnosed as Stage 3 and pretty quickly we fell in love. Serge has been there with me from the beginning of it all, and even though I had such a poor prognosis I was falling in love at the same time. It was a great distraction.
I underwent tests to check eligibility for a trial drug to decrease chance of recurrence and they discovered the cancer had spread to my liver.
I was 22 years old and I had terminal cancer. I changed my focus from survival to just trying to buy time. I set little goals, and we got engaged.
In October 2013 I started on a drug that was predicted to buy me 18 months, but it didn’t work. My cancer had spread throughout majority of my major organs and in January 2014 they gave me six months to live.
People often think that someone living with cancer is really sick and in large amounts of pain but usually I just feel normal. It’s not until the very final stages of dying of cancer that it hurts. I had some pain, the large lesion on my pancreas gave me pain like severe indigestion but I took pain killers and I just got on with it.
We brought our wedding forward and in March 2014 Serge and I got married.
In October 2014, my oncologist suggested a new trial of a drug, and for me it has been amazing. It has limited side effects aside from losing all of my pigment so my skin and red hair is now white. My tumours decreased in size and I have bought a little more time.
Serge stopped work for a while so we could spend all our time together, but it was too much.
I struggle with the concept of a bucket list. I craved normality. I started a blog, Dear Melanoma, to share my experience and to have a purposeful thing to do. I took a job in a shop one day a week, and we bought an apartment. I just want to live life like everything is normal, with the odd inappropriate joke about the fact that I’m dying.
I’m not going to tell people to be afraid of the sun, just have respect for the sun. Prevention is the key to melanoma. Be aware of your skin, because early detection is so important. For most people if you get it early, you can be cured.