Supporting the

Neuroendocrine Cancer Community

Who we were before a cancer diagnosis

Oct 6, 2021


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 waitingfor 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