Who we were before a cancer diagnosis

By: Neuroendocrine Cancer UK

Posted on: 4 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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WHO WE WERE BEFORE A CANCER DIAGNOSIS AND WHO WE ARE NOW – THE FACE IN THE MIRROR

Before life changed forever, before in fact everything changed and life was turned upside down, we would look in the mirror and see the people we had always been, going about our daily lives and work. Then, out of the blue, the invitation to take part in the bowel screening programme at the age of 60 arrived in the post for my husband and life, as we knew it, would never be the same again.
Nine years later almost to the day, we are now facing a very different challenge with the discovery of my husband’s severe Carcinoid Heart Disease.
Much of the last nine years has been made up of hospital tests, scans, check ups, most recently four rounds of PRRT to tackle his multiple liver tumours and he is now waiting  for urgent open heart surgery to replace two badly damaged valves due to the cancer which, over time, has caused this damage, due mainly to a combination of peptides and chemicals given off by the tumours over the years. We didn’t see the heart failure coming and it has hit us like a battering ram.  Having had nine years to come to terms with cancer, we have had just nine weeks to face up to this new and very serious setback.
Yet today, as we look in that same mirror, we see the same people we were before.  Not defined by cancer, not defined or defeated by carcinoid heart disease.  We are the same people fighting the same fight, but just that bit harder, but appreciating and valuing our family and friends, our lives, even more than we did before.  Everything is ever more precious, because time is against us now.  We refuse to give up or give in so that when we look in that mirror, we can smile and face it all anew.
I see my husband struggling, now in end stage heart failure and facing the biggest fight of his life.  I try not to let him see me cry but my emotions are raw right now.  But, it is not about me, it is about him. I am so so proud of him, the courage and tenacity he has displayed since being diagnosed with Neuroendocrine Cancer nine years ago.  It is that same courage and tenacity that all of you reading this are going through, each fighting your own fight every single day.  So, when you look in your own mirror, be proud, remember the person you were before and smile at the same courageous one you see now, hold your head high.  You are not alone, none of us are.
In leaning on each other and offering support in whatever way we can, we are not letting cancer win without a fight. We deserve the good times when they come, we chose from the beginning to be positive and cup half full, although in all honesty it is not always easy. But we feel it is the best way, maybe the only way to strive to stay on top of it, one step ahead of it, to not give up without a darn good fight.
To all of you reading this, I empathise and genuinely care very much about all of you.  Over the years we have met wonderful people who have inspired us and hopefully we, in our own way, have helped inspire others in looking for the positives.  We would never have met these new friends were it not for cancer, which proves it is not always all bad. We appreciate and value so much the wonderful hospital teams, Maggie’s and of course Neuroendocrine Cancer UK.  
The Natter Patient Support Groups are invaluable, my husband looks forward to them, the fun conversations and the chance to catch up on how everyone is doing.
Stay strong, allow yourselves the wobbles and off days when they inevitably come, but look in that mirror and see the same wonderful person smiling back at you and be very very proud.
Love and hugs,
Sue Bamford

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.

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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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