My name is Ali and I live in rural/remote SA. Surgeons discovered I had NETs when they were operating on my re-occurring bowel cancer in 2017. A PET scan followed and they found an inoperable NET tumour in my small bowel (primary is unknown).
In 2019, it was discovered that my bowel cancer had spread to my liver and lungs. They also found a NETs tumour in my lungs and all the ‘spots’ were successfully removed. My medical team and I are keeping a close watch via scans, to detect any more growths as soon as they occur. I have received chemotherapy, radiotherapy and am currently on monthly Octreotide injections.
NETs and bowel cancer have changed my outlook for the future enormously. I have sadly retired from my job, which I loved, due to my health and energy levels. This diagnosis has given me clarity on why, pre-diagnosis, I was always feeling so tired and stiff in the mornings, like I’d run a marathon. I still feel this way. Now days, I look forward to relaxing, gardening, volunteering and spending time with family and friends.
It was hard getting used to being diagnosed with a terminal illness, I found that it took me several years. I am still learning what living with cancer looks like for me. Strategies I used included seeking reliable information about this disease, accepting my diagnosis with a positive attitude, allowing my self to have down days with no guilt attached and appreciating my family and friends help and support. My advice to others in a similar situation; do what feels best for you, listen to the advice of your medical team and be curious and proactive in your own outcomes. I am surrounded by a good team whose advice I respect. We should all expect and receive the best individualised care from our medical team.
The main reason I joined CAG was my enjoyment of having a positive and productive input into life. I hope my life experiences will help raise awareness and better outcomes for NETs patients, carers and families, especially rural and remote families.