Diagnosed: 2012
Diagnosis: Clear Cell Carcinoma
My Cancer Journey
I first noticed blood in my urine in September 2012. I tried to ignore it, but the following month I had a major bleed. I caught it in a Vegemite jar and took it straight to the doctor. That was at 9am. By 1pm I was already having tests. Two days later I was told I had a rare kidney cancer and that I would need major surgery.
Thirty-five days later I was on the operating table with a team of 12 doctors around me. The operation went for 13 hours. I was cut from my navel to my backbone. During the surgery I died three times. My right kidney was destroyed by a tumour weighing 1.8 kilos, about the size of a football. The kidney and tumour were removed and four ribs had to be cut to scrape the tumour out before my ribs were put back together.
I spent six weeks in hospital before I could even begin treatment. I was put on a new drug called Sutent but after 12 months my body could not handle it anymore.
I was told my cancer was called Clear Cell Carcinoma. The doctors said there was no cure and that I only had 12 months to live. They told me to get my affairs in order. That was twelve years ago and I am still here.
I believe eating plenty of stone fruit helped me recover from the cancer that spread to my lungs and liver. But it has not been easy. Many friends turned away from me, thinking cancer was something they could catch. It was one of the hardest things, to be left alone at a time I needed support most. My wife was later diagnosed with cancer and I lost her three years ago. Through it all, my family and a small circle of true friends kept me going.
For a long time I did not realise that Clear Cell Carcinoma is a subset of Neuroendocrine Cancer. The cancer that took my brother and sister’s lives. It was only when I went to NeuroEndocrine Cancer Australia’s Launceston Forum, in support of my brother Rob, that I met the specialist NET Nurse and learned more. Rob lives with MEN1, a familial form of neuroendocrine cancer.
Rob spends a lot of his time fundraising to make sure Tasmania will have a state-based full-time NET Nurse. This is his legacy, and it will impact our entire family, and all NET patients in Tasmania. It means my children, grandchildren, nieces and nephews will always have the support they may need in their lifetime. I support Rob’s fundraiser because I know just how important that care is, and I want our family’s struggle to mean something for the generations to come.
