Pete, patient and fundraiser

By: Leanne Talbot

Posted on: 5 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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Name: Pete

Neuroendocrine Cancer Site: Pancreas with liver mets.

I am cycling from North to South Devon in April 2022 to raise awareness of neuroendocrine cancer and funds for the very special charity NCUK.

We are all affected by cancer in some way at some point in our lives. I would be very grateful for any donation or support you can give for this excellent charity, which covers a wide range of ‘rare’ but increasingly common cancers. I can assure you from my own experience that NCUK makes a very positive difference for people affected by these cancers, which are often not diagnosed early enough.

For some years I had bouts of abdominal pain – which doctors never really diagnosed. Then during 2020 I started to have what I now realise were episodes of hypoglycaemia (low blood sugar – ‘hypos’) after running. I thought I was just getting old but after various tests, which ruled out diabetes, in December 2020 I was diagnosed with a rare form of neuroendocrine cancer, namely ‘malignant insulinoma’. The hospital found multiple tumours throughout my liver, which had spread from the primary in my pancreas. These tumours produce insulin – which causes hypoglycaemia and left untreated can lead to coma and death. My tumours could not be removed by surgery and there is currently no known cure.

This had a devastating impact on me and my family. I had been a very fit and active recently retired 62 year old – enjoying my life including becoming a granddad. Most of last year was extremely challenging physically and mentally – I was virtually unable to do anything due to my worsening ‘hypo’ symptoms (which dominated my life, day and night), the effects of chemo treatment and 3 stays in hospital.
However, thanks to the NHS, NCUK and related patient support groups I received the help and support, including counselling, that I really needed to cope with it all and to understand more about my condition and treatment options.

Recently I have been having targeted radiotherapy (PRRT) at Derriford Hospital, Plymouth. Very fortunately, this has transformed my quality of life and I feel profoundly grateful to be able to live a more normal life again. I still have cancer but I am enjoying making the most of each day – for however long this lasts.

It feels like a miracle to be able to ride a bike again. I have bought an ebike to give me the help I now need to tackle the Devon hills! I am working hard to build up my fitness again. Having always been fit and active previously, I now realise why so many people struggle with exercise! But I am loving this and can think of no better way to say ‘Thank you’ and begin to give something back than by riding across Devon (hopefully in good weather!) with my family and friends to raise awareness of neuroendocrine cancer and to raise much needed funds for NCUK. We will be riding around 65 miles over 2 days  – mainly on cycle tracks and including a few hills!

Many thanks for reading this and for any support you can give for this great cause.

Best wishes – Pete

You can donate to Pete’s fundraiser here.

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

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

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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.

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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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