Welcome to Our New Ambassador – Rachel Wood

By: Ash Bryant

Posted on: 4 months ago

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

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I had never heard of neuroendocrine cancer until I was diagnosed. Neither, it seemed, had the gastroenterology consultant who delivered my diagnosis. Mine is an experience familiar to many of us: asymptomatic, a strange ‘birthmark’ on my liver, detected whilst being scanned for something unrelated. Followed by an 18-month ordeal to diagnosis.

The lack of any meaningful knowledge about neuroendocrine cancer shocked me, and I spent the next five weeks in an information vacuum. I was scared and desperate for answers.

Answers and support came in the form of Neuroendocrine Cancer UK and for the first time, I had trusted advice and an idea of what to expect.

Now, after two major surgeries, taking early retirement this summer from teaching, and currently undergoing PRRT at Queen Elizabeth Hospital in Birmingham, I have the privilege of becoming an ambassador for the charity, and the opportunity to give whatever I can to our community.

One of my goals is to prevent future patients (especially the asymptomatic or those with ‘mystery’ symptoms) from suffering in the information vacuum.

Anything NCUK can do, with a little help from me and the other ambassadors, to raise awareness within the NHS will go some way to achieving my goal and I look forward to working with them all.

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

Do you have a story to share?

Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

Share your story
Share your story

We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


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