THE BLOG

Hidden Heartache: The Untold Story of Bowel Cancer

03/04/2016 19:41 | Updated 03 April 2016

When we think of cancer we think of the patient, the individual who is going through treatment, the person who is facing their darkest fears. But new research by Beating Bowel Cancer has highlighted not only the fears and feelings of those directly affected by bowel cancer, but also their family and friends. This research is driving our new campaign to raise £100,000 to provide support and information specifically for these people.

Our research shows that bowel cancer can be a dark cloud and that its shadow is never far away, both for patients and their family and friends. For every person diagnosed with bowel cancer there are perhaps at least four more people who are also affected.

Our study found that family and friends in particular didn't feel their support and information needs were met. They've told us that they go through their own turmoil. They wonder why someone they loved should get bowel cancer. They lose sleep worrying about whether, once treatment is over, the cancer will return to their loved one. They desperately want their own form of support to help them cope with the complex emotions that dealing with their loved one can bring.

While it is only right to focus on supporting people with bowel cancer, it's vital not to forget family and friends. As Kerry, whose mother-in-law has bowel cancer, said: "Bowel cancer is never off my mind". People like Kerry need to be helped to understand bowel cancer, what is happening to the patient, and how they can help.

Through our nurse helpline, our online forum and through social media, Beating Bowel Cancer hears every day from not just patients but their family, friends and colleagues who ask us questions about everything from symptoms, treatments and how best to manage once treatment is over. Our expert nurses guide and provide information about what to expect and how to cope. Our nurses can also put individuals in touch with others going through the same experiences.

Our forum is a particularly special place just because it is run by those with personal experience of bowel cancer. We have recently launched a new, private part of the forum specifically for family, friends, and those close to bowel cancer patients. We did this because we recognised the pain of the wife of one patient who told us: "I look at my husband and think it's so unfair he is going through this, he is the best daddy and husband there is. I wonder why him? Why us? How can I find the strength to help him through it?"

Two-thirds of family and friends said they got the right information about bowel cancer during treatment, but this dropped to nearly half when dealing with the after-effects of bowel cancer. Every fifteen minutes in the UK someone is diagnosed with bowel cancer. That means there are many tens of thousands of people who do not get enough support and information. For the patient this is critical as they need care and help from those closest to them. They need the understanding of those closest to them about what they are going through at every stage.

Our research found that family and friends often experience the same issues and concerns as patients, from being scared to pluck up the courage to search for information on Google, to fear, embarrassment and depression about the disease, to real concerns about the impact on a couple's sex life. Also equally worrying is that family and friends have found that their employers are not always sympathetic and getting time off to be with a patient can be difficult.

Beating Bowel Cancer exists to help everyone affected by bowel cancer. We already do a very great deal, through our Nurse Helpline, through our website, through special days for patients to help inform them about their cancer, and through raising awareness of bowel cancer to break the taboo that surrounds it. But we need to do more. Our research has shown that the family and friends, carers and colleagues of bowel cancer patients need their own dedicated information booklets, their own special support day, their own place online to help each other, and they would like their own nurse to talk to about their specific fears and concerns.

That is why our Hidden Heartache Appeal is seeking to raise £100,000 to fund these new sources of help and support. We want to double the number of people we support, reaching many more family and friends. We want to hold a Family and Friends Day dedicated to those supporting a loved one. And we want to employ a specialist nurse who specifically understands and supports the needs of those people close to bowel cancer patients.

If you want to get involved and support our Hidden Heartache Appeal please visit www.beatingbowelcancer.org.

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