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Healthcare professionals

Angie – CNS, Newcastle

By: Leanne Talbot

Posted on: 6 years 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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Hi my name is Angie and 14 years ago my mam was diagnosed with a neuroendocrine tumour (NET) and the only change was a loss of 4lbs in weight but I knew there was something wrong. The GP examined her and she could feel the liver tumour. It all snow balled from then, scans, blood tests, biopsy and more scans and the only thing we were told was it was cancer (unknown primary) with liver metastases.

Weeks went by before we eventually got the diagnosis of NET. We were given a NHS printed information sheet and told to go home; they would see us in 6 months unless there were symptoms.

Watch and wait!!!  WOW!!

There was a lovely NET specialist nurse who only worked 3 days a week and information was limited.

So you can imagine how we were feeling, angry, frustrated and alone.

Being a daughter/nurse I needed knowledge of this cancer to support my mam and family. We were very frightened of the unknown.

But then I came across NCUK….Knowledge, information and support the 3 things we as a family were craving.

Jump 14 years later and I have been a Neuroendocrine Clinical Nurse Specialist for 6 years. I come with knowledge, information and support and empathy to my patients as I know what it’s like to walk in their shoes.

NCUK have been with me for the last 14 years and with the support and knowledge they share I know how more difficult those early days would have been and to them I say a big THANK YOU.

So when I got this job the first thing I wanted to achieve was to a set up a support group as I know how important it is to meet people, to give people the knowledge and share experiences. The same reason I want to be a part of the faces of Neuroendocrine Campaign so hopefully we can keep supporting each other and to know that you are not alone.

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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