I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

My days and months have been spending time and money on and in medical appointments, tests and scans, rooms, clinics and medications and listening to profoundly specialised medical jargon, which is not always explained fully and sometimes assumed to be common knowledge,

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.

The hardest thing has been actually finding out what was wrong with me. No-one could tell me for months and the toll it took on me and my family was devastating. The lack of knowledge of NETs amongst the medical fraternity amazed me. Still a long way to go.