Ruth, Patient

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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Thanks for the invitation to tell about myself for the « Faces of NCUK «  campaign. I am a patient (diagnosed with primary tumour in the ileum and mets in the mesentery and nearby lymph nodes requiring the removal of a third of my colon) but by way of introduction to me the person not just the patient …

.. I was born and brought up in England but have spent many years living abroad mostly in France, and learning foreign languages is one of my passions. I spent many years of my life bringing up children, so it is fair to say that family is very important to me. 

Just before my diagnosis (November 2019) my most recent life events had been the death of one of my daughter’s, Rose, aged 24 in 2014. Followed by the death of my husband, Henry, in 2016.  Suddenly all the children had grown and flown (one heavenwards) and then I was widowed.  Suddenly all alone.

I feel it is extremely important for us to share our Neuroendocrine cancer stories as doing so goes a long way to alleviate the feeling of isolation that follows upon a diagnosis of an illness no one has heard of. Everyone always immediately looks for more information, right ?  It is re-assuring to read other’s stories. I myself benefitted from that, and I would like to contribute to others also so benefitting. What goes around, comes around!

I feel passionately that the referral and diagnosis process for most patients in the U.K. is lamentably slow.  Something has to change! 

I have benefitted from the help of NCUK, in particular from their excellent professional counselling service; – free to the patient! In my own case I had lived through years and years of hospitals when Rose was ill and now wanted a period of life hospital free so  I found it hard to accept that once more I had to be immersed in hospitals. I would rather it all just went away!

I would like to encourage others to also benefit from all the help that NCUK offers.  There is also a huge task of raising awareness, as most people have never heard of this cancer.  And I would like to say both to patients and carers,

« Always make a point of accepting all offers of help. »

That is a good motto and a good coping strategy.

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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