Supporting the

Neuroendocrine Cancer Community

I’m Maxine Patterson and seventy-four years old. I was a deputy headteacher, but my first love was teaching English. I really enjoyed the connection with young people and helping them begin their adult lives. 

When I retired, I became involved in the U3A in my local area, establishing two Book Groups; a Creative Writing Group and a Photography Group. During the pandemic all the groups have continued remotely using zoom.

I’ve always had “tummy” problems with ongoing investigations that stretched over more than twenty years. Things got serious during my final years teaching and my retirement. In 2015 there were endless visits to the doctor where I asked repeatedly was going to the toilet twelve times during the day actually normal? Patient and kind and completely out of his depth, he suggested the FOD map diet and referred me for tests. The specialist was positive that I had IBS and that I just had to follow the diet. Just as a precaution I was sent for yet another colonoscopy. They couldn’t insert the camera, so I was sent for a scan which identified the tumours, and I was referred to the Freeman MDT in Newcastle. 

I had no idea where or what the tumours were, but after a biopsy at North Tees Hospital it was confirmed on the phone that I had cancer. Luckily, the Consultant diabetes and endocrinologist had trained under the consultant at the Freeman and was able to explain a little about neuroendocrine cancer. He was so hesitant and unsure that I realised something was different and immediately got a pen and paper and wrote down everything he said. That became the start of my neuroendocrine journey and my attempt to maintain some control over my life.

In January 2016 I had to have an emergency small bowel resection right hemicolectomy. I had no idea what that meant although the letters from the hospital used all the technical language and “assured me that they had explained it all very clearly.”

My G.P., a very kind and caring person knew nothing about NETs, just didn’t have the time to research. Any issues I raised were met with; “ask your specialist nurse.” In desperation I used the internet and found the Royal Free Hospital website’ Ronny Allen’s site and finally the NET Patient Foundation website.

I am on monthly Sandostatin LAR (Octreotide) injections and take colesevelam 3 times daily. I find life has to be taken day by day, planning ahead allows me to  enjoy the good days and allow space for rest on the not so good days.