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
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...
Becoming Your Own Expert by Ronny Allan
Recorded November 2020.
But Debra, you look so well …
But Debra, you look so well … Some of you will recall that I was diagnosed with Neuroendocrine Cancer in February 2021, with a primary site in my rectum and metastases to my liver. This is an update...
Finding a new role in life after a cancer diagnosis, by Simon
I was a “typical boy” throughout my own education. I did as little as possible and hoped for the best. I had no idea what I wanted to do with my life and very little in terms of education,...
From Cancer Diagnosis to Parenting with Purpose, by Kate
Name: Kate Neuroendocrine Cancer site: Tail of pancreas and secondaries in the liver KATE'S STORY Hello, my name is Kate and I have been living with neuroendocrine cancer for 13 years. I feel...
Stable: So, is that it?
For six years my life with Neuroendocrine Cancer has had a rhythm that has enabled me to live a positive and organised life. Last month, that changed for me. And that change rocked my confidence. My...
Travelling – Be Prepared: Kath Lewis
On the whole, travel should be fairly easy in everyday life, with the odd curveball thrown in here and there…. Happens to us all. I am not talking about just nipping out, but about going out for...
You couldn’t write it …
You couldn’t write it … by Jane Dayus-Hinch Four weeks ago, I woke up with a headache, which is nothing new for me. I took a couple of paracetamol, got up, washed, and dressed, and carried on… Four...
Ten years on and counting…..
Towards the end of 2022, we passed the milestone of ten years since my husband Ian was first diagnosed with Neuroendocrine Cancer. What a rollercoaster ride it has been, the highs, the lows, the...
Chrissie Barlow – My NETS Journey … to Liver Transplant and Beyond
I was diagnosed with my first Neuroendocrine Tumour (NET) in 1997, when I was just 24. It was in the tail of my Pancreas and was secreting PTHrP - causing very high calcium levels, and oddly giving...
Guilty as Charged, by Kath
A cancer diagnosis is a lot to get your mind round. It brings a whole new set of complexities to try to understand. Whilst at the same time, trying not to dwell too much on the fact that things can...
Who we were before a cancer diagnosis
WHO WE WERE BEFORE A CANCER DIAGNOSIS AND WHO WE ARE NOW - THE FACE IN THE MIRROR Before life changed forever, before in fact everything changed and life was turned upside down, we would look in the...
“The Cancer That Just Keeps Giving”, by Bethann
I was diagnosed in May 2019 and can remember thinking “Ok, I think I know what I have ahead of me…” but unlike other cancers, Neuroendocrine Cancer (or NETs) has proven, for me, to be “the...
Radioligand (PRRT) – Cycles 5 & 6, by Carolyn
For any of you who have had the magic words ‘PRRT’ mentioned as part of your treatment & you are feeling apprehensive, I would like to offer some re-assurance based on my own experiences. I have...
BLOG – Diary of a Cancer
I suppose it all started with a Heart Attack at the end of March 2019. This has since been queried by the Oncologists, but the Cardiologists inserted two more Cardiac Stents. We (because this really...
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.
