I was so shocked when I was diagnosed with a Neuroendocrine Tumour at Stoke Hospital in June 2020.  I called it a ‘baseball bat’ moment. One of those life changing moments, when you are getting on with life, and juggling work and family, feeling a bit under the weather now and then- but I’d had ‘IBS’ and Diverticulosis for years, I was used to having ‘stomach problems’.

I always thought that I was allergic to some foods, or tired or some other excuse.  I was also newly wed, (Christmas Day 2019) and at 61 I was so very happy. My husband and I had met at a funeral, and we had both been on our own for some 10 years, me divorced, and Robert had nursed his late wife Glenn for 2 years with pancreatic cancer.  And there we were, seated in the same office, and Robert sitting in the same chair as when he heard Glenn’s fatal diagnosis.  I thought his head was  going to hit the desk.  Neither of us saw it coming.

I went very quiet, trying to digest it all, and come to terms with my Incurable, Stage 4, Grade 3 diagnosis.  It sounded like ‘go home and die and we will give you morphine when you need it’.

I asked for a second opinion, and was referred to the Queen Elizabeth Hospital in Birmingham. I was re-graded to Grade 2, and therefore eligible to receive treatment.  I was put on monthly Sandostatin injections, and I tried to re-adjust to this new way of life.  I didn’t want to talk about ‘it’. The Disease, The Condition. Cancer. I hated it.

Then one phone call changed everything for me. A call from a Cancer Research Doctor, who engaged in conversation about my extensive fundraising skills, all the volunteering I do, and in particular my beloved Harley Davidson. He asked me why I hadn’t become ‘an expert in my condition’? I’d attained my degree at University aged 60, so why didn’t I want to know more?  Why didn’t I go on the Neuroendocrine Cancer UK website and listen to podcasts? Why hadn’t I joined any ‘groups’ and spoken to other NET patients?  I’m a very sociable, chatty person and he persuaded me that I would benefit from talking to others.

So the next morning (Saturday) there was a NET Natter – in Worcester on Zoom. I wasn’t very well and I was in my nightie. I clicked in (with a photograph) and just lay there and listened.  There were two ladies on there, with the Facilitator Nurse, chatting away.  It was SO normal. They were both looking forward to a glass of wine that evening, they talked about Creon, and I asked some questions, and yes, I learned lots of hints and tips. Maybe there was something in joining a Natter Group after all?

The next group, I felt well that day. I did my hair and makeup and went ‘live’, and once again, a group of people, saying where they were with their treatment, sharing the things that helped them. I found out about the TOILET CARD!  The Radar Key, the sunflower lanyard … oh my goodness, there were benefits from having NETs!

I now have a disabled badge, I have read and read, and now I feel far more confident when asking questions of my Oncologist and Consultant. I look forward to the friendly Natter Support groups, and I look forward to meeting up in person very soon. I’m on round 2 of Cap-Tem Chemotherapy, and I’m learning about the side effects of the treatment – so that I dont end up in hospital again!

Would I recommend joining a Natter Group?  Absolutely yes. Learn from the experiences of other patients – the Doctors have never had this cancer!