Supporting the

Neuroendocrine Cancer Community

Towards the end of 2022, we passed the milestone of ten years since my husband Ian was first diagnosed
with Neuroendocrine Cancer.

What a rollercoaster ride it has been, the highs, the lows, the unexpected.

With Neuroendocrine Cancer, you can never say “well it does exactly what it says on the tin”, or ‘one size
fits all’. It keeps us guessing and I can honestly say that over ten years on, we are still learning.

Of course, ten years living with cancer is also something to celebrate. We are only too well aware that for
other patients living with any form of cancer, things can turn out very differently. Certainly for the first eight
years following diagnosis Ian lived very well with his cancer and we almost became complacent at times.
Monthly Octreotide injections kept everything stable. Life is always precious and given that Ian was given
5-10 years when first diagnosed, I feel blessed and grateful that I still have him with me.

You may already know that Ian also has Carcinoid Heart Disease and Infective Endocarditis. Life for him is
a daily regime of a large quantity of meds, monthly ECGs and bloods, fortnightly Sandostatin injections
and daily blood pressure, blood sugar and SATS monitoring. He can no longer get travel insurance, but
we are not concerned because to be honest, going abroad would not be good for my peace of mind. He
gets tired very quickly and is generally lacking in stamina most days.

I try to keep his spirits up, but he remains quite low at times and has started a mild antidepressant, which
is helping him sleep better. He has struggled to come to terms with having nearly lost his life eighteen
months ago, while in a medically induced coma for four weeks in Critical Care at the QE Hospital in
Birmingham (an ENETs Centre of Excellence) following a diagnosis of end stage heart failure and urgent
open heart valve replacement surgery. The psychological effects have proved to be almost as bad as the
physical ones on his long road to recovery.

I struggle watching him struggle if you see what I mean. Thanks to NCUK, I have joined the new Natter
Group for friends and family which I really recommend. Sometimes as a carer it is hard to make any sense
of it all and having the opportunity to share experiences, thoughts and concerns is very worthwhile. It
reminds you that you are not alone in all of this uncertainty, relentless worry and being ever watchful and

I have a real problem now with overthinking (I call myself a binge thinker), but coming so close to losing
him has profoundly changed life for me in many ways. Even a simple thing like going out for a coffee
means the world, I look across the table at him and feel so very grateful he is still with me and fighting on. I
have certainly prayed a lot and am grateful for the support of family and friends. As time has moved on
though, I don’t feel I want to burden my nearest and dearest and so it has become much harder to reach
out. I tell myself that they have busy lives and problems of their own. Time has moved on since those awful
few weeks, Ian survived, there is much to be grateful for, but sometimes I feel weighed down by worry,
especially on those days when he struggles to find energy or enthusiasm for life. I get asked how I keep
smiling and cheerful, but it helps me a lot to have a positive, cup half full approach and staying grateful for
the life we still share together. Also, by reaching out to others in my situation, I know that you will
understand and be able to relate in some ways to my experiences.

So I just wanted to share my thoughts and if anyone reading this can relate to anything I’ve written, it is
always so important to know you are not alone. Even though we may never meet, we share a bond as
carers, not just caring for our loved one but also caring for each other. To be honest and truthful, none of
us expected this very different way of living, we all learn as we go along and do the very best we can in
often difficult, emotional and tiring circumstances, but with a smile, always ensuring he feels loved and
valued and that we are always a team.

So, thank you for reading this. When I write I am reaching out to all the others like me and sending you an
understanding hug.

Ten years on and counting……………

Take care,

With love and positive thoughts, as always,

Sue Bamford