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Families, friends and carers

Lucy, Supporter

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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NCUK have invited me and my lovely Dad to share our story of his battle with this awful disease over the last 2 years, as part of their campaign: Faces of NCUK. So here we go I guess…

March 19th 2018 – my Dad sat my two big sisters and I down and gave us the devastating news of his diagnosis. He had incurable pancreatic Neuroendocrine cancer which had also spread to his liver. He told us life was going to be a little different now, that we were to stick together like the strong little team my parents had raised us to be and to try and search for the positives in every scary day. I genuinely thought that right there, life was coming crashing down, but somehow, my Dad still had the strength to hold it up. Heartbreakingly, this illness isn’t going to go away – but importantly, my Dad is living with it, not dying with it.

There’s been too many scary days to count, but two of the most painful were having to walk out the hospital with my Mum and two sisters, leaving my Dad alone in the hospital the evenings before two life-extending operations, we couldn’t be absolutely certain that we would get to see him again, based on how life-threatening these operations were. The operations (between them) saw him have around 70% of his liver removed, his spleen removed, gall bladder removed, pancreas reduced, as well as the removal of various tumours. The operations themselves were of course, traumatic. I cried seeing my Dad cry in pain, but I also smiled – so proud – on his first days out of intensive care, first walks up the hospital corridor and of course, being able to walk back out of the hospital with him – these were the kind of positives that my Dad encouraged us to look for in every day. The small steps to others, which to us – were indescribable.

The last couple of years have been really frightening and I’ve been learning to cope with the high levels of anxiety, but through every scary day, every scary scan and every scary meeting – my Dad and I sing together. At the top of our lungs every night after dinner, I grab my guitar and we jam to our favourite songs – e.g. “My Girl” by The Temptations – and quite simply, it’s my happy place. For a while we can just escape. Music has been such an important coping mechanism for me through all of this, being able to sing out my thoughts, worries and fears on the days when I don’t want to physically talk about them. Even listening to and playing covers of my favourite songs helps – aside from my song writing. I’ve always been a huge country music fan and there’s something really special about the way tracks have the ability to positively impact my mood, especially on the days when I didn’t even know I needed lifting.

I’m absolutely certain we will find a cure one day. I cannot thank NCUK enough for the support they have offered my family through the most difficult days, I have taken great enjoyment from participating in fundraising events and bringing family and friends together to raise funds for such a special charity. In September 2018, my two older sisters and I ran the 5K Mud Run, raising over £1000, and in November 2019 I held a tea party with loved ones, raising over £300. I am so proud to be able to give back in whatever way I can to a charity which I hold so closely in my heart.

To me, my Dad simply is my hero. To me, he is the strongest man to set foot on earth. He possesses a type of bravery and resilience that I did not know existed, he is positive, fierce and most of all, he has a heart that is made entirely of gold. He listens, he never judges and he stands up for what is right. I wish there were more people like my Dad in this world, so I count myself unbelievably lucky that I get to live life right by his side.  He is my source of strength, my widest smile and my loudest laugh. I can only dream of becoming half the wonderful soul that he is, I thank my lucky stars that I get to call him my Dad.

I’ve been trying really hard to remind myself that it’s okay not to feel brave every single day and it’s okay to cry – because this is terrifying. But it’s also so important to remember to enjoy the finer things in life, to laugh often and show kindness, because we never know the scary battles that others are facing. I’ve been so lucky to be surrounded by the most supportive network, my friends have never allowed me to feel alone and always know exactly how to pick me up on the days when things feel a little more painful. And as for my two big sisters…I can only wish that everyone got so lucky to have sisters like mine.

This is the short version of the Shaw’s story. There’s a lot I could go on to say, but we have more milestones to be watching my incredible Dad achieving instead. “I didn’t believe in superheroes, but your hospital gown looked more like a cape.”

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.

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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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