Supporting the

Neuroendocrine Cancer Community

I was a partner when Neuroendocrine Cancer came into our lives. We had been together for 26 years, had talked about getting married, but just hadn’t gotten around to it.  Finally in 2018 we tied the knot.

We forgot about the Neuroendocrine Cancer that day, Carcinoid Heart Disease was still a world away, so we just celebrated with those we love most in the world. A day of pure joy (and Prosecco….)!!

We all need times to unwind in whatever way that works, depending on where you are on your journey through Cancer, we really do need those days to just try and push it to the back of our minds for a while if we can.

The wife became the carer more recently. Carcinoid heart disease was a whole new ball game and, after years of fairly uneventful cancer issues, this has wiped him out. My husband has changed through no fault of his own bless him. Circumstances have changed, life has inevitably changed.  I am so grateful I still have him; it has been such a rocky eight months since his open-heart surgery.  It has all taken quite a toll and he struggles now, both physically and mentally as he recovers.

The latest blow, proving a big setback in his recovery, was contracting Infective Endocarditis, a serious infection within the heart and potentially life threatening. It meant another month back in hospital (Cheltenham) earlier this year, he was back home for nine days, then re-admitted (Gloucester) for another two months. Thankfully, he is now back at home but the battle continues to regain his strength and fight the infection.

He tires so easily and is very low at times. I no longer feel I am just a wife, but that is ok. I have had to learn to encompass wife with carer/companion and to learn just what that means. I feel the privilege of caring for him, but also the pain, wishing he had never had to go through so much of course, yet at the same time celebrating the fact that I still have my husband, grateful, glad, scared, happy, weepy. How did we get so many conflicting emotions and sometimes all in the same day?

I always write with my heart on my sleeve, reaching out to anyone who has been or may be going through something similar. None of us must ever feel alone.

At this point I have to acknowledge some very special people at the Queen Elizabeth Hospital in Birmingham – Cardiothoracic Surgeon Mr Ahmed Ashoub who operated and saved Ian’s life, Professor Rick Steeds (Head of Cardiology), Dr Tahir Shah and the Neuroendocrine Team, Tessa, and the Critical Care Area C Staff and also the Ward staff, Physios and Reena the Dietician.

More recently, grateful thanks to Dr Ubaid and the team on the Cardiac Ward at Cheltenham General Hospital and Dr Saha and Cardiology team at Gloucester Royal Hospital, not forgetting for one minute the wonderful nurses for all they have done.

Between them all, they fought and won the battle to get Ian home and we can never thank them enough. They are all true heroes. If you ever find yourself in the care of anyone I have mentioned, you could really not be in better hands.  To all the lovely team at NCUK, long may you continue to support, guide, and inspire, especially those newly diagnosed who need you the most as they struggle to cope with life changing news – thank you so much for everything.

So, whatever role I find myself in going forward, it will be fine. They are all important and each one equally valid. It will be the same for you too, in time you realise it doesn’t matter because you will do anything for the one you love.

A few years ago we were on a cruise ship watching the sun go down and both thinking how lucky we were. Cancer hadn’t prevented us from having that special holiday and we counted our blessings, just like we are now. Yet I realise that I don’t have to be on a cruise ship to see a gorgeous sunset and we don’t have to have perfect health in order to count those blessings over and over again, although we all know that during the more difficult and anxious times, it is more difficult.  We are only human after all and having to do the best we can whilst trying to accept we can’t control things and make everything ok (believe me when I tell you I am still a work in progress on that one……)!!!

I truly wish anyone reading this moments of peace where there has been pain and smiles where there has been sadness. We can make it through life’s curve balls when they hit, one difficult day at a time, try to enjoy the things that inspire you. For me it is the sea, new friends we have made through the cancer journey, but not forgetting the old friends of course, a cheeky robin and the beauty of a rainbow (not necessarily in that order….). Of course, without the Covid restrictions, the all-important hugs from family and friends.

Take care, thinking of you always,

With love,

Sue xx