MARCH 2024 NEUROENDOCRINE CANCER UK QUARTERLY NEWSLETTER

NEW BEGINNINGS: OUR NEW AMBASSADORS

WELCOME Caroline, Carolyn and Polly: who have joined our Neuroendocrine Cancer Ambassador Group. CAROLINE : I’m 56 years old and I live in Port Talbot with my husband and daughter. I also have a son and a beautiful grandson who is 5. My experience has been that I feel that I have had to fight and challenge and find a lot of information about Neuroendocrine cancer myself.

Being well informed has enabled me to manage my condition and have meaningful conversations with my oncologist. I also attend the monthly natter meetings in Swansea and have gained lots of knowledge from these.Several people whom I know have reached out to me for help after getting a cancer diagnosis and I have been able to provide them with support and information. As an ambassador I would like to give back to the community that has helped and supported me since diagnosis.

CAROLYN : in August 2005, I was in hospital recovering from bowel surgery when a nurse came up to me and said: “Don’t stop eating your lunch, I’ve come to discuss your cancer with you”. . . I was 49, a single parent with 2 daughters and I really thought it was the end. The nurse went on to tell me that I had a very rare cancer called ‘Carcinoid’ (very old terminology now) and they had only seen one other patient with this in the previous 5 years. I am an active member of NCUK support, having had 18 years of

experience of living with NETS. I have participated in surveys & meetings with drug companies & Cancer Research, face to face, online & by phone. As an ambassador I would like to promote & spread awareness of this cancer & to help other patients.

POLLY : I am 68 years old. In a former life I was a Business Analyst and IT Project Manager: I worked within NHS IT for over 10 years, regularly attending conferences and making presentations to large groups of Medical Professionals. Taking early retirement in my late 50s, was to have been a venture into the unknown . . . but what followed was not quite what I had in mind. . . I’m a partner of someone living with a diagnosis of Neuroendocrine Cancer since 2014. I have been fully involved from day 1, attending all appointments, being the second pair of ears in the room, and playing the role of notetaker and advocate where needed.

I’ve been part of the Friends and Family Natter Group since it started and have found it extremely useful in understanding how each of us are coping with this ‘new role’ we find ourselves in. I believe that the impact on those close to a person who has been diagnosed with any cancer is frequently underestimated. I think to have someone with perhaps a different perspective to the other Ambassadors could help. I believe as ‘carers’, we have a responsibility to our own wellbeing: If we do not take care of ourselves how can we hope to care for someone we love. I welcome the opportunity to represent Friends and Family within the Ambassador’s group, and the wider audience, and hope to advocate for the sometimes unspoken role of the carer. Find out more about our new, and currently serving, ambassadors and how to become one HERE

www.neuroendocrinecancer.org.uk

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