My name is Jacqueline Gillespie, and I live in Annandale in Sydney with my partner Meg and two miniature schnauzers. We also have a house in Blackheath which is our sanctuary and has become my place of healing and recovery.
I was diagnosed with NETS on my 55th birthday in 2016. Like many other patients I had a range of symptoms over about 7 years that escalated over time. These included gut issues, shortness of breath, fatigue, anxiety and heart palpations. Up until my diagnosis these symptoms were treated as separate and distinct issues rather than indicators of a broader diagnosis of NETS. At the time my partner and I were living and working in Asia travelling a lot, working hard and enjoying our lives.
When we returned to Australia, I was finally diagnosed with NETS. My primary tumour is most likely the small bowel however the cancer had metastasised to my liver and bones. I have had a range of treatments to help slow the progression and in some cases shrink some tumours. I have monthly Lanreotide injections, quarterly XGEVA injections, TACE, 2 SIRT and 2 rounds of PRRT. I feel like I have an amazing multidisciplinary team looking after me.
Being diagnosed was and is such a shock. I hadn’t even heard of NETS. Luckily the oncologist suggested I get in touch with The Unicorn Foundation which is now Neuroendocrine Cancer Australia. I found it to be a wonderful source of support, knowledge and care. It is an organisation that really arms patients with knowledge and support to take on their diagnosis and treatment plan with more confidence, to ask questions and to better understand the journey ahead.
Like many people my life changed the moment I was diagnosed. Over time I realised that it was better if I stopped working, took away the stress and focus on my health and well-being. As part of that shift, I really wanted to contribute to the NETS community. I joined CAG in 2018 and it has been a wonderful experience. I learn so much from being on the CAG about NETS but also about being resilient, managing my overall health, overcoming anxiety and much much more. The Neuroendocrine Australia team is small, but it is full of amazing people and really achieves a great deal for NETS patients. I am proud to be a small part of the CAG contribution.
