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Families, friends and carers

From Business Analyst to Caregiver Advocate: Polly’s Story

By: Leanne Talbot

Posted on: 3 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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I’m Polly, 68 years old. In a former life I was a Business Analyst and IT Project Manager. Taking early retirement in my late 50s, it was to be a venture into the unknown but what followed was not quite what I had in mind. 

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So how I got here…. I’m a partner to Mike who was diagnosed in 2014 – following some very vague symptoms – with a primary in the small bowel and extensive metastases. Major surgery, a long recovery, followed by ‘stability’, and monthly injections. However, curved balls do have a habit of coming along to interrupt the ‘new normal’. Including: ‘Just because you have one cancer doesn’t mean you can’t get another totally unrelated one (btw now clear)’ and ‘Take your eye off the ball and the metastases decide to go walk about into your heart muscles’.  
During the past 10 years there’s been, both physical and emotional, highs and lows and everything in between. We’re still together, supporting each other with the invaluable assistance of a working black lab called Elder. And back to ‘static and stable’ for now.  
My role in this…. It isn’t easy being a ‘carer’. There’s been a steep learning curve, I can probably now add the following onto my CV: erstwhile expert, advocate, nurse, secretary, chauffeur, all round pain in the backside.  
I’ve coped. I’ve hit rock bottom. I’ve experienced compassion fatigue. Finding my way initially to Maggie’s at Newcastle for weekly Tai Chi and an 8-week mindfulness course certainly helped.  
When Neuroendocrine Cancer UK set up a Friends and Family Facebook group and corresponding Natter meetings it was just what I needed. It’s a hugely supportive group of people who understand the complexities of what we face. It’s a ‘safe place’ where we can raise questions and cover topics with Lead CNS, Nikie Jervis, we might not otherwise be able to ask.  
I’m a great advocate that we, as carers, have a responsibility to our own wellbeing. If we do not take care of ourselves how can we hope to care for someone we love.  
So yes, sometimes you have to put yourself first. It’s ok to insist on ‘me time’. It’s strange to think that I now have a creative side I didn’t expect to have, watercolour painting, photography and philosophy are part of the new me. 
So why become an Ambassador?…..Perhaps the following best sums it up; The opportunity to represent Friends and Family within the Ambassador’s group, and the wider audience, with advocacy for the sometimes unspoken role of the carer. 
March 2024

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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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.

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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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