Diagnosed 10 November 2023
NETs? In working in pharmacy for the first part of my professional life, I had never, ever heard of it. I knew “neuro” had something to do with the brain and “endocrine” with the hormone system, but that was it.
Everything changed in late October 2023, when sudden, strong abdominal pains above my navel led me down a path I never expected. On 10 November (coincidentally World Neuroendocrine Cancer Day), my GP advised that I had what pathology had deduced was a neuroendocrine tumour. Just 4 days later, I sat with a specialist surgeon, who showed me the scan and explained what he could see and his plan.
We scheduled surgery and a week later, the primary neuroendocrine tumour was removed, the diagnosis was confirmed but then came the word I had been dreading, metastatic. In that moment, cancer became part of my story.
Life had already tested me before this, as I lost my husband to prostate cancer 7 years before in 2016 and just 14 months before my diagnosis in 2022, I lost my beautiful mother at 101 years old, during the pandemic. Not long after in 2022, I suffered a major fall down a staircase while on holiday in WA, dislocating my shoulder and spending a year with vertigo. I thought I had faced enough challenges and then, out of nowhere, came those three words, “You have cancer.” At that precise moment, I felt like I had hit a brick wall at full speed, but deep inside, my meditative self, reached for calm. I have tried to always listen to my body and this time it was crying out for help. I knew this was the beginning of a new chapter and having walked beside my husband through his cancer journey, I understood the road would not be easy, but this time, it was my turn to walk it. While still in hospital, I turned to online research, with an intention not to overwhelm myself, but to find clarity around my health condition and to discover where I could find support. By January 2024, my medical team had come together and during my search, I discovered NeuroEndocrine Cancer Australia. I participated in the Living with NETs workshop as a newly diagnosed patient in February 2024, and have leaned in to the nurses’ support as much and as often as I have needed. These Nurses are instrumental in keeping yourself centred moving forward.
Since then, 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, when it is after all an uncommon condition. At times it has felt endless, but I do believe it all serves a purpose for me. I choose to see each step as a learning and an opportunity to understand more about myself, my health and this condition, all with the intention of retaining my focus on my wellbeing, with my mind and body being in sync as much as it can be. I love the word homeostasis. We are born with it and the body does know how to resume and sustain it, but we do have to give it the best chance to survive a thrive. The medical space refers often to the c-world as a “watch and wait” space, but I prefer to dance on the front foot and live with hope, attention and intention and bucketfuls of strength and faith. We are worth so, so much more than the wait and I never stop asking questions. After all, it is my life and quality of life I am managing and that is a responsibility to myself, for myself in my case.
My focus now is simple. Keeping life simple is essential, from thinking to moving, from daily living to having things to look forward to and embracing things that I love to do or experience. I stay curious, I listen to learn, I remain calm to stay courageous. This is my journey, and while I didn’t choose it, I can choose how I approach it. We all approach it differently and that’s ok. Every day, I choose to walk with awareness, resilience and the belief that I am more than my diagnosis. I also believe a journey when shared, be it in voice, words or gentle silence, can make a difference to someone, somewhere.
Peace, light and blessings to you all, in whatever ‘shoes you are wearing’ if you are reading this, be it as a patient, a carer, a partner, a family member, friend or associate and in a medical/scientific or holistic/alternative space. We are all in this together!
#youarenotalonehere #neuroendocrineawareness #NETs
