Supporting the

Neuroendocrine Cancer Community

I have never liked rollercoasters, even pushing my children on the park roundabout was enough for me…..

Many years later, I now in fact find myself on my own rollercoaster while accompanying my husband on his journey through nine years of Neuroendocrine Cancer and, more recently, Carcinoid Heart Disease.

Do you experience those same highs and lows? Whether a patient or a carer. I’m sure you do, appreciating and being thankful for the good days, the uneventful days, no hospital appointments so you can maybe go out if you or your loved one feels well enough, even dare to plan a holiday.  Then that all too familiar anxiety kicks back in again when the bad days come, the many trips to the bathroom, the flushing, the fatigue, trying as best you can to cling to that comfort blanket of normal and ‘it will all be ok again tomorrow’. 

That rollercoaster can take you right to the top, telling your family and friends that you are fine, coping and staying strong because that’s the way you are supposed to feel – is that right?  

Well actually, in our own way and in our own time we are allowed to admit to ourselves that we are only human.  And actually I don’t feel quite so strong, quite so upbeat, quite so able to convince everyone and myself that everything is fine. Your coping mechanism may be having a malfunction and need a re-boot.  

Mine is just like that at the moment and I feel a bit more wobbly than normal and a bit less able to cope. My husband is in hospital, I can’t visit due to Covid and he’s too poorly to talk on the phone right now so I am at home feeling constantly worried, going from ‘he’s going to be fine’ to ‘what does the future hold’?  I’m just being honest.

It is a maelstrom of feelings and emotions and can be quite exhausting to be honest.  Living from one appointment to the next, waiting for the latest round of scan or test results, making notes so that you don’t forget any vital bits of information given at appointments or on the phone.

What can I get for dinner? Everything seems to go straight through him at the moment, no matter what I make. I feel guilty because I can eat normally, but it is such a struggle for him some days.

Are you on your own rollercoaster, are you feeling the same right now?  This is just to let you know that you are not alone. It’s normal and natural to feel all these feelings.  In an ideal world we could all get together, talk frankly, honestly and openly, maybe even laugh, cry, share all those feelings and emotions, hug and be there for each other in a spirit of empathy and understanding. Neuroendocrine Cancer UK are brilliant at providing much needed support when you need them.

Whatever your situation, whether your loved one is at home or in hospital and you are unable to visit, please know that others care very much and want you to know that you are not alone.  There must be a whole army of us carers out there, each one living with these issues every day and finding the best ways we can to find the strength to cope and carry on.

Thinking of you all – always, with love,

Sue Bamford