I got off the phone from speaking to the NET Nurse and broke down in tears from a sense of relief from finally feeling support in such a whirlwind year. It was a time in my pheochromocytoma journey where I truly felt medically supported. That initial phone call to the NET Nurse made me feel like I had been wrapped up in a supportive hug…and I didn’t feel alone.
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,
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.
