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1. What impact has NETs had on your life?
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby. It formed a dark cloud over what should have been one of the happiest experiences of my life. However, I was extremely lucky to have a strong and caring support team to get me through. Having to leave my newborn son to undergo further invasive treatment was one of the most difficult experiences I have ever had, but it gave me even more reason to keep fighting, and it still does to this day. NETs has impacted my life in many other ways – but I have learnt to look for the positive in every situation. My diet and lifestyle choices are very different to what they once were, which at times I still find difficult to explain to people. Learning to cope with ‘scanxiety’ has given me far more resilience than I ever had and I am grateful everyday that I was finally diagnosed and can begin to heal.
2. What drew you to become involved in the CAG?
Cancer is a taking disease. For me, it took a good part of my youth, it took time away from my new family and it took my confidence. I wanted a way to bring some ‘giving’ balance back, to not just my own life, but to the lives of others experiencing this cancer, which is so often misunderstood and misdiagnosed. Finding the Unicorn Foundation was a significant turning point for me, and broke the isolation that so often accompanies this cancer. This organisation is truly amazing in the support that it offers to NETs patients, its endeavours for fair and equitable treatment options and continued research into NETs, and I feel honoured to give what I can through the Consumer Advisory Group. Having a dedicated avenue to offer help to others is truly remarkable and the Unicorn Foundation deserves support to continue in its mission.
3. What advice would you to give to a newly diagnosed patient? What has been most helpful to you in your NET experience?
Never let this cancer define who you are. Search for the positive, acknowledge the negative and accept that each day may be challenging or require extra tissues, but other days may feel joyful. Allow yourself to go with the emotions and listen to your gut instinct. Ask questions when you don’t understand something and bring a support person to all of your appointments. The most helpful thing for me was taking control of the experience, learning the facts from the Unicorn Foundation and having a strong support person to walk beside me and face things together.