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 blogs 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.
Experiences
Online Blogs
Hints & Tips
Podcasts
Videos
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 in the Faces of NCUK and Voices of NCUK are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
FACES & VOICES OF NCUK
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...
Chris
Name: Chris Age: 36 Primary Site: Central right Lung Chris's Story Diagnosed in February 2022 after visiting a private GP after my NHS GP wouldn’t see me a persistent cough which worsened with...
When Inoperable Becomes Operable
I’m Leanne, I’m 48 years old and I was diagnosed with Neuroendocrine Cancer in September 2019. My primary is in my rectum with metastases to my liver and thyroid. I started Octreotide every 28...
Graham Hunt
Hello friends. My name is Graham Shankarji Hunt, I'm 73 years old and in retirement, I am a singer/songwriter by trade. I've been lucky with my health so far and have only had one stint in hospital...
My Experiences With CAPTEM Chemotherapy and 10 Tips
My Experiences With CAPTEM Chemotherapy and 10 Tips I was diagnosed with Lung Neuroendocrine cancer in February 2021. This was my second cancer diagnosis in less than five years. It all started with...
Pete, Patient and Fundraiser
We are all affected by cancer in some way at some point in our lives. I would be very grateful for any donation or support you can give for this excellent charity, which covers a wide range of...
Coping with a Neuroendocrine Cancer Diagnosis and Dealing with the Shock
by Karen Edwards The last 6 months for me have been a rollercoaster of health and emotions. I have had IBS for years and it has been unpleasant, painful, unbearable and sometimes absolutely...
Linda, Lung Neuroendocrine Cancer
I was 64 when in February 2020 I was diagnosed with a carcinoid tumour in my left lung. I’d had pneumonia for three months the previous year which began in April 2019, and on one visit to A&E...
Daily Affirmations, by Huw
For years I’ve done simple affirmations each morning to help wire the foundation of my internal dialogue to one of thanks and wonderment. When I brush my teeth each morning, I’ve a visual reminder...
Tips on finding your way through the NHS system
So you have received your diagnosis from your Multi-Disciplinary Team and if, like me, have just learnt very long, new words all you heard was "cancer". What do you do first? After getting home in a...
Wife/Carer/Companion
I was a partner when Neuroendocrine Cancer came into our lives. We had been together for 26 years, had talked about getting married, but just hadn’t gotten around to it. Finally in 2018 we tied the...
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.
