Stories and Experiences
Welcome to our ‘Not Just NE Cancer’ stories and experiences page. This is a safe space for those who wish to share their story and a place for anyone affected by neuroendocrine cancer to access real-life experiences and advice from those who have experienced it first-hand.
Overall though, of all the ‘gifts’ neuroendocrine cancer has brought into my life, the one I hold closest is the fellowship of those who like me, fight this battle every day – both other patients with Neuroendocrine Cancer and the staff at Neuroendocrine Cancer UK. Like me, they endure the many gifts given by this chronic cancer, whilst also giving the gifts of empathy, understanding, friendship, information, and support.
Each year in the UK, around 6,000 people are diagnosed with a neuroendocrine cancer – and the incidence is rising. Despite this increase, in a recent survey of more than 200 people with neuroendocrine cancer, less than 5% had heard of it… until they were directly affected by it.
You may be one of those people who have never heard of neuroendocrine cancer… you may have been told it is rare. You may feel isolated and afraid.
Here you will learn that you are not alone.
Continue reading to browse and watch stories by neuroendocrine cancer patients, who have bravely shared their experiences of how they became ill, their treatment, and their road to recovery. Many of the stories offer support and handy hints and tips about topics such as; preparing for treatment, or how to care for a loved one with neuroendocrine cancer.
Select play to watch Neuroendocrine Cancer patient and Ambassador, Craig share his experiences.
Trigger warning
Please note that some stories end on a positive note, but some paint a picture of the difficult road that many neuroendocrine cancer patients face.
Disclaimer
The stories and opinions posted are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
STORIES AND EXPERIENCES
Having a Cancer That No One Had Heard Of, Carolyn’s Story
Name: Carolyn Neuroendocrine Cancer Site: Bowel Hospital: The Royal Free - Carolyn's Story My name is Carolyn Evans, and in August 2005, I was in hospital recovering from bowel surgery when a nurse...
From Business Analyst to Caregiver Advocate: Polly’s Story
I’m Polly, 68 years old. In a former life I was a Business Analyst and IT Project Manager. Taking early retirement in my late 50s, it was to be a venture into the unknown but what followed was not...
Having Neuroendocrine Cancer is a Full-time Job, by Caroline
Name: Caroline Neuroendocrine Cancer Site: Colon. - My name is Caroline Griffiths and I’m 56 years old. I live in Port Talbot with my husband and daughter. I also have a son and a beautiful grandson...
PRRT Funding: Michelle’s Story
Name: Michelle Neuroendocrine Cancer Site: Primary: Adrenal gland with secondaries in lungs, liver, and lymph nodes behind the aorta - - Michelle's Story I have suffered for years with sweating,...
Newly Diagnosed, by Marie
Name: Marie Martin Neuroendocrine Cancer Site: Pancreatic Primary - I’d rather not be writing this story but it might help others - it's hard to find out anything straightforward about...
Finding Strength in Community: Carole’s Neuroendocrine Cancer Story
Carole's Story Neuroendocrine Cancer Site: Pancreas Hospital: The Christie, Manchester Carole Shaw, also known as Carole Wickets, reflects on her journey with neuroendocrine cancer and the support...
My ‘Friend’, CAPTEM
Written by Cynthia, neuroendocrine cancer patient. Neuroendocrine cancer site: Pancreas. Hospital: The Christie, Manchester. In June 2021, I was diagnosed with an 11cm tumour on the tail of...
Caring For a Loved One at Home. It’s All About Respect, By Sue
- Many of you will know or will have read my previous blogs about my husband Ian’s story and how living with neuroendocrine cancer and Carcinoid Heart Disease have brought so many irrevocable...
Acceptance, Slowing Down and Coming to Terms with my Life Now
Story by: Lisa Neuroendocrine cancer site: Lung Hospital: The Christie, Manchester - My name is Lisa Webb, and I am a 50-year-old mother of two. Diagnosed in Dec 2021 with Atypical Lung...
This is my husband, Andrew Cheetham
In memory of Andrew, written by his wife, Faye. - - I had known Andrew throughout my teenage years, he was very popular, especially with the girls. I knew him from afar, I was shy and quiet and...
A Fond Farewell to and Celebration of Barrie Edward Dack 1944 – 2023
I first met Barrie, not long after I joined Neuroendocrine Cancer UK, about 7 years ago, at a Natter group: one he co-founded and facilitated in Letchworth Garden City. He’d been diagnosed with...
Decisions on Treatment Options, by Jane
Name: Jane Since my diagnosis seven years ago, after a long search for the reason for my pain, I have become a faithful diary writer, everything from what I eat - to see if it gives me an...
From Diagnosis to YouTube, by Alan
Name: Alan Neuroendocrine Cancer Site: Pancreas Alan's story I'm a father with two adult daughters, married to Kate since 1995. I live in Cheshire with dogs, cats, hens, and a parrot! I...
From GP to Fundraiser: Dougie’s Inspiring Story
Hi. I’m Dougie, a 59-year-old retired GP from South Lincolnshire, though originally from Edinburgh. I had a sub-acute small bowel obstruction and underwent an ileal resection just before the...
That Fraudulent Feeling…
That Fraudulent Feeling … The last time I put pen to paper was November 2021 when I wrote a blog about my decision to take early retirement from a job I loved - because of a cancer I certainly...
PODCASTS
Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care.
