Patient Stories

My role change from working life to a carer was rapid and willingly undertaken even though it was not what I had in mind for our future lives.

Although I think I’d been unwell for a while I don’t think I spent as long on the diagnosis path as some others with NETs.

It's almost two years now since I was given the diagnosis of Neuroendocrine cancer

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.

Cancer stole our Mum’s right to see her children get married, to meet her grandchildren and to grow old with her husband.

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.

When my GP rang me a few hours after my scan and told me to come in immediately my life changed for ever.

The most helpful thing to me was talking to someone who had been living with NETs for 20 years. Listening to hers and others experiences and tapping into their knowledge was reassuring and comforting.

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.