Faces of NCUK
Be part of a like-minded community where you can share your own thoughts and feelings about Neuroendocrine Cancer.
Around 36,000 people are affected by Neuroendocrine Cancer in the UK, with over 5,000 people newly diagnosed each year. That is more than 13 people a day. For many the first time they will have heard about Neuroendocrine Cancer will be the day they receive their diagnosis.
Faces of NCUK is here for you to be part of a huge community of like minded people, and to share your own thoughts and feelings about Neuroendocrine Cancer. Whoever you are – a Neuroendocrine Cancer patient, a supporter, a friend, healthcare professional or a loved one – you have the power to take action and make your voice count.
By talking about your experiences, you can help us tell powerful stories that raise awareness and create a wider and deeper conversation about Neuroendocrine Cancer across the UK. People who’ve shared their story often find it a really positive experience and an opportunity to make a real difference for people living with Neuroendocrine Cancer, and their families.
Whether you are living with Neuroendocrine Cancer, or supporting a loved one who has been diagnosed, we’d love to hear from you.
How can you get involved?
All you need to do at this stage is click on the ‘Share your story’ button below and answer some questions, giving us as much information as you can and feel comfortable with. If we need more details, a member of the Stories team will get in touch to have a chat.
Thank you.
The stories here have been shared by Neuroendocrine Cancer patients, supporters, healthcare professionals and friends and colleagues of NCUK. We will constantly update this page, so please be sure to visit it again.
For some this has been the first time they have written about their experience and where they are now. Patients share their experiences of how they became ill, their treatment, and their road to recovery. Supporters and Healthcare professionals share their experiences. Please note that while most stories end on a positive note, others reveal insights into the very difficult roads that many Neuroendocrine Cancer patients face.
Please note that the stories and opinions posted in the Faces of NCUK are those solely of the authors and contributors of the stories. They do not reflect the opinions of Neuroendocrine Cancer UK.
Supporter, Lucy has written a song for her Dad.
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...
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...