Supporting the

Neuroendocrine Cancer Community

OUR EXPERIENCES OF LIVING WITH NEUROENDOCRINE CANCER

My husband Ian was diagnosed almost exactly nine years ago with Neuroendocrine Cancer with liver metastases.

He had the primary tumour of the ileum removed in November 2012 at Gloucester Royal Hospital, recovered well and has thankfully been living very well with his cancer and medications, continuing to lead a full and active life.

We joined the monthly Rare Cancers Group at Maggie’s Cancer Centre in Cheltenham soon after his diagnosis, where Ian was under the care of Dr Farrugia and his Cancer Nurse Specialist Donna Norman.  We never regretted for a moment joining as we were warmly welcomed and quickly came to realise we had so much in common with other members and their carers.  

I definitely found it as beneficial as Ian did, joining the Carers Course which was an opportunity for me and others in my situation to discuss anything we wanted to, in an atmosphere of mutual understanding and empathy.  As a carer, it is of course difficult to watch someone you love going through the treatments and the ups and downs of a cancer diagnosis which is of course life changing, presents many challenges and turns your world upside down. I felt helpless, on the outside looking in, knowing there was little I could do but love and support him every step of the way. 

Joining with others and chatting and yes having fun because the conversation at our Maggie’s group was always upbeat and we were all happy to realise that it is ok to laugh while dealing with cancer.  Yes, there were tears also along the way, we sadly lost several dear members of our Group over the years, but we made valued friendships that we would not otherwise have made and we came to realise that, believe it or not, there are good times and an upside to having cancer.  There is always light within the shade, even if sometimes you have to look a little bit harder to find it.

For the last sixteen months or so, Ian’s health has unfortunately been more of a concern.  Scans revealed that the tumours in his liver had progressed to 60%. By then his care had been transferred to the Queen Elizabeth Hospital in Birmingham with Dr Shah and Cancer Nurse Specialists Suzanne, Stacey and Joanne and also for four cycles of PRRT in the care of Dr Geh and the Nuclear Medicine Team.

During lockdown the Neuroendocrine Cancer UK monthly ‘Natter’ Patient Support Groups have carried on via Zoom, and it is so lovely to be able to see each other and still share those worries, concerns, experiences and laughs.  We all care very much about each other and are always interested to hear how everyone is getting on.  We are so grateful to Nikie and Kate for keeping these groups going. Ian looks forward to them every month and they have really proved invaluable.  The support and care of Neuroendocrine Cancer UK is always available to us, which is so much appreciated and valued.

My lovely husband now has the added problems of damaged heart valves and is currently in the Queen Elizabeth Hospital awaiting a procedure to seal a hole in his heart followed by major open heart surgery in about six weeks to replace the valves, do a by-pass and fit a pacemaker. He is receiving excellent care from both the Neuroendocrine Cancer Team and also the Heart Team headed up by Dr Steeds.  He is also in the care of the Dietician in an effort to help him regain some of the weight he has lost during the last year. I literally cannot thank them all enough for the care and support they have shown us both.

We have personally found that keeping positive as best we can, but also allowing ourselves the occasional and very understandable wobble when it all becomes a little overwhelming, is always a help for us. It is not realistic to be upbeat all the time, especially when you are living day to day with any kind of illness. I must admit, we didn’t see the heart issues coming and it has been a setback and a shock for us both.  

We have to keep looking forward though, trusting in the skills and gifts of the wonderful medical teams looking after him and also sharing our experiences with others in the hope that it helps someone else going through similar situations, worries and fears.  I have come to allow myself my off-days when they come, I have to be kind to myself as well as I continue to do everything I possibly can for Ian’s care, especially when he is recovering from his surgery.

So this is for you, the person reading this who may be facing just such a challenge, feeling fearful and not quite sure where to turn.  Help and support is there for the asking, please know that many others have been where you are now, we understand and above all we care. Cancer takes enough, I just simply refuse to let it take everything without a fight and of course a smile. Take care and all the luck in the world.

SUE BAMFORD