I had been feeling unwell for some time but nothing specific, a bit nauseous, a lot of flushing (which I thought was probably something to do with menopause) and diarrhoea. I presented the Doctor with a diary of my week with details of my severe diarrhoea which had worsened about July. Her response was but that is only a week, and I said that is what every week is like.
The Doctor mentioned I should start studying as he was very confident of what the diagnosis would be and told me it was very rare and many doctors would not understand or would not have seen it. This was the best advice I ever received.
The NECA NET Nurse gave me so much support and information. The phone support wasn’t rushed like medical appointments, the resources that she emailed me were full of useful information that I could share with my family. I feel better equipped to advocate for myself now. I don’t feel so alone anymore.
Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on. I decided that I was not going to be defined by this condition. It is a small part of me, I am NOT part of it.
My neuroendocrine tumour (NET) story begins in the year 2000 when I was in my twenties.
I was diagnosed with a low-grade pancreatic NET because I was having stomach pains. First off, the GP thought it was me being blocked up, but stomach pains persisted, and I had an ultrasound and then a CT scan that confirmed a pancreatic NET.
In August 2022 I was enjoying life, working as a PE Teacher, fit and healthy (I thought I was) when I visited my doctor for my yearly check-up. The only complaint I had was some reflux and a little bloating. He sent me for blood tests and added an ultrasound. Two days later he delivered some news that would change the course of my family’s life. I had a mass/tumour on the head of my pancreas
The specialist NECA NET Nurse was not only a sympathetic ear, but she was also practical and very efficient. Within weeks, she had secured me an appointment at Peter Mac, with Associate Professor Michael Michael, and for the first time in the many months since diagnosis, I felt heard, safe, and confident that my treatment was in the right hands.
Friends and family look at me and say and think I must be cured as I look so well post lutate. It has taken some “character building” to understand from the start that I have inoperable cancer in terms of resolution.
