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Pancreatic Cancer Patient Group UK ‘living with and beyond’

Patient Group

The Pancreatic Cancer Patient Group UK ‘living with and beyond’ has been set up to allow people living with and beyond pancreatic cancer in the UK to connect and chat in a discreet environment. The idea is to share experiences, tips, meeting dates and generally not to be alone in this experience.

Postponing the Pancreatic Cancer Patient Group UK ‘living with and beyond’ meetup (25th April)

Following the outbreak of Coronavirus (COVID-19) we have taken the decision to postpone our Pancreatic Cancer Patient Group UK ‘Living with and beyond’ meetup on the 25th April. The wellbeing of people affected by pancreatic cancer is of paramount importance to us and we have taken this decision in light of the most recent government guidelines.

Please note, our specialist nurses are still available through our Support Line to talk to you. You can chat confidentially about anything that might be concerning you or ask any questions you have including any worries about COVID-19. Do give our nurses a call on Freephone 0808 801 0707 or email nurse@pancreaticcancer.org.uk.

The group are currently discussing potential ways to maintain communication and will update as soon as a decision has been reached.

How does the group work?

The group predominately support one another on a private Facebook group. The group are free to post without concern that the ‘wider world’ can see it and there is always someone who will write back to posts, day or night. Some members might also decide to communicate outside of the Facebook group and offer support over the telephone or by meeting up.

There are currently over 100 members in the group and all of those are keen to involve and welcome new people to the group. The group are based across the UK which can make meeting up a little more challenging, however the online support has been invaluable in ensuring people can be connected.

Carol's experience

"My name is Carol and I was diagnosed with pancreatic cancer in August 2017. During treatment I found it incredibly useful and reassuring to be in touch with someone who had already been through the process I was embarking on and it was from this contact I heard about the Pancreatic Cancer Patient Group UK ‘living with and beyond’.

To be honest, I had doubts about whether a support group would be for me. It was therefore with some trepidation that I attended my first meeting. How wrong can you be? From the moment I entered the gathering prior to the meeting, I felt warmly welcomed as people went out of their way to put me at ease. I found the meeting very reassuring and useful; to hear from others who are living fulfilling and active lives post cancer was uplifting; and to hear first-hand from those attending from Pancreatic Cancer UK about current projects they are funding, possible future developments in treatment, as well as current concerns, was informative. I also felt the meeting was a useful opportunity for the partners of pancreatic cancer sufferers to meet and exchange experiences as I feel this is a much neglected area. In short, in not attending these meetings earlier I was missing a trick and would, as a result, highly recommend them to fellow patients."

How can I join the group?

You can join the group by following the link to their Facebook page or searching for the Pancreatic Cancer Patient Group UK ‘living with and beyond’ on Facebook. Once on the page, if you click ‘join group’ then Karen will get in touch with you and ask for a little bit more information about you before you join. 

If you are not a Facebook user but would like to get in touch with the group, you can contact them at pc.livingwithandbeyond@gmail.com.