Kath Lewis

Writing this has reminded me of how far I have come since my diagnosis….

I received my diagnosis on 22nd June 2015, 6 weeks before my grandson was born. Telling family and close friends is never easy, but that made it especially hard. But I was determined to be part of his life for as long as I can, and 11 years later I’m still doing that.

I was diagnosed at the age of 53 with a small bowel primary with metastasis to my liver, peritoneal wall and lymph nodes, including one wrapped around my main artery. I am not a candidate for surgery unless they have no choice, because of the position of my tumours, so I am classed as ‘watch and wait’. I call my tumours my illegal aliens as I did not give them permission to settle or breed. I believe though that I still have a full life to live, with plenty of new experiences and opportunities waiting for me along the way.

Before my diagnosis I worked in IT for over 20 years. I enjoyed my job but decided to take early retirement due to the unpredictability of my symptoms. I missed it though, especially my work family, but I still meet up with them regularly. 

NET Patient Foundation (as it was then) had my back from day 1, so I volunteered to become an Ambassador for Neuroendocrine Cancer UK in 2017 in the hope that my work and life skills could be of use. I see it as my way of giving something back for the all the help and support they give to me.

NCUK keeps me sane. The Facebook forums, the Patient Support Groups and the new friends I have made help me enormously. 

In early 2020, I did a term as Ambassador Chair for 2 years, stepping down in 2023. 

I also help to facilitate our local Patient Support Group (PSG) in Stoke-on-Trent. 

As an Ambassador, my interests lie in working to make this cancer more visible outside of our immediate community, and to support and help others, especially those newly diagnosed; as I still remember all too well how hard it is to get your mind round this disease and how its complexities cause so much confusion.

As an Ambassador over the years, I have worked with both pharmaceutical companies and healthcare professionals, talking about it is like to live with neuroendocrine cancer and its effects on me both physically and emotionally by sharing my experiences of treatments including PRRT (Peptide Receptor Radionuclide Therapy). 

I also contributed to the updates needed for PILs (Patient Information Leaflets) and the Liver Pilot Programme. I’ve written about handling the emotional fall out of living with a long-term cancer diagnosis, and other articles on travelling and managing day to day life – and took part in several Podcasts and Webinars raising awareness of the challenges living with neuroendocrine cancer.

On a more personal level, one of my main joys is walking. Neuroendocrine cancer now prevents me from doing the more challenging walks I used to, and I am slower. I miss that. In fact, for me the way it has affected my walking has been one of the hardest things to deal with, but walking poles help, along with lovely scenery, fresh air and wildlife to enjoy. Not perfect, but I’ll take it. 

I love to cook and read – and to crochet, which act as my forms of mindfulness. Who would have thought a crochet hook and a ball of wool could take my mind off the pain and discomfort so well, but it does! I continue to remain open to new challenges though, including any that may come up in my Ambassador role, and I feel honoured to be part of such a special group of people.