I went from being monitored for MEN1 from the age of 12 so was used to blood tests and scans and seeing specialists but routinely rather than rushed or just told to do something without much explanation.
When I was 16 years old (1990) I was quite sick and always tired, I was always vomiting. Eventually I was diagnosed with glandular fever, the doctors said it was very unusual to have the vomiting I had so they never looked for it.
Like so many others, it took 2 years from my first scans showing tumours to be diagnosed with NETS. It was long, frustrating and physically and emotionally draining not only on me, but also my family.
NETS has hugely impacted my life…going from a full and hectic life, of designing objects and exhibiting our art installation works and jewellery, everything had to stop so I could just focus one day at a time.
My diagnosis with a pancreatic neuroendocrine when I was 36 was out of nowhere… More recently my auntie has been diagnosed, and family discussion have identified a distant cousin as well. This has now had a larger impact on not only myself but my larger family, and made us more aware of our health.
For approximately seven years, my health continued to decline and impact on my quality of life, my career goals, my social life and my own self belief. I was diagnosed at age 29, and two days after my diagnosis I found out I was pregnant with my first baby.
Honestly, pre-NETs now seems like another life for me. The biggest change is becoming a diabetic as a result of tumours on my pancreas and it therefore being removed.
For years I had felt unwell and not my normal self. I was a confident, happy go-getter who had become tired, anxious and nervous without cause and ultimately developed an extra short fuse.
