Speaking to someone who knows what I’m going through makes all the difference

It’s so important for people affected by pancreatic cancer to have a range of support available to them; from our dedicated Support Line to peer-to-peer support.

Guest author
24 September 2019

Jean Edwards is a member of the Living with and Beyond Pancreatic Cancer Patient Group on Facebook, which she joined about two years ago.

When I was diagnosed with pancreatic cancer two and a half years ago, I didn’t know anyone else who had pancreatic cancer – let alone anyone who lived near me. I was desperate just to talk to someone who was going through the same things that I was, so I did a bit of research and discovered the Living with and Beyond Pancreatic Cancer Patient Group on Facebook.

At my age, I’m not really that comfortable talking to people online but the Facebook group has been so helpful. One of the best things for me is meeting others in the group who have lived years beyond their diagnosis, which keeps my morale up.

Last year we organised to meet in person in Wakefield and it was wonderful. It’s lovely to meet the members in person.

An online group is not for everybody but if you need support and someone to talk to, at any time of the day or night, then just go for it and join! I’m so glad I did.

Steph Gooder is an HPB Oncology Clinical Nurse Specialist at Stockport NHS Foundation Trust and has helped facilitate the Manchester Hepato-Biliary Support Group since it started almost three years ago.

I was told it would be difficult to set up a support group because of the poor prognosis that comes with pancreatic cancer. They said, “Steph it can’t be done” and almost three years later the group is going from strength to strength.

Our first meeting had only six people and it felt like hosting the most awkward dinner party imaginable as no one knew each other or what to expect. As a nurse, I can give professional support and experience, but I cannot give a personal perspective.

This is why it’s so important for people with pancreatic cancer to have the peer-to-peer support that this group provides and to feel like they are not alone. Everyone knows someone who has had a breast cancer diagnosis but very few know anyone who has had a pancreatic cancer diagnosis.

The group meets every two months at the Maggie’s Centre in Manchester, which is a really lovely setting. It’s helpful having the group here because people can see all the other services that they can access.

Find a support group in your area.