LISTEN: Stewarton man speaks of 'hidden anguish' of bowel cancer families
A ground-breaking study by the charity Beating Bowel Cancer highlights the hidden anguish experienced by families and friends of bowel cancer patients in the UK.
A ground-breaking study by the charity Beating Bowel Cancer highlights the hidden anguish experienced by families and friends of bowel cancer patients in the UK.
The new research shows bowel cancer doesn’t just affect those going through the disease, but also hits loved ones hard – leading to family break ups, sleepless nights, fear, loneliness and even guilt.
It’s the first time the experiences of everyone affected by the UK’s second biggest cancer killer have been researched.
The report shows that only 66% of family members and friends felt they were given the information and support they needed whilst trying to support their loved one through treatment. This drops to 55% when trying to help with after-effects.
Perhaps most shocking of all only 27% felt they received enough supported following the death of their loved one.
Alan Glasswell is from Stewarton, his wife Janice died in March 2013.
He spoke to our reporter Kerry Lumsden...
It was found that talking is an important outlet for patients and family and friends alike to cope with the burden of diagnosis, treatment and life after treatment. However this isn’t always easy.
Most people in the study turn to partners, friends and healthcare professionals for support but worryingly 15% of family and friends said that they don’t speak to anyone.
Melissa Cutting, who supported her husband Chris through bowel cancer for 18 months before his death said: “There are some aspects to caring that you really can't discuss with anybody - or there certainly were in my case - particularly near the end when the cancer was ravaging his poor insides and I was trying to keep our young family together, all over Christmas time. Not even my family knew the things that I had to face but I think I would have been able to talk about it more openly with somebody else who’d been in my situation.”
Steve Guy, whose wife Wendy died of bowel cancer in 2015, said: “It’s a very lonely place because you really don’t know what to expect and there isn’t much help and support for partners at all.
“Nobody is talking to partners, nobody is taking you aside and saying this is what’s going to happen; this is what your loved-one is going through or anything like that. No one is looking after us.
“One of the things that Wendy and I agreed on was that the NHS gives you the operation and it gives you the chemotherapy but that’s it, you have a 6 weekly appointment with the oncologist and it’s 20 minutes, how’s it going and then you’re out of the door, you feel really lonely.
“So nobody tells you how her health is going to deteriorate, nobody tells you the practical things you’re going to need and it’s just like a waking nightmare most of the time, if people told you what to expect and what help was available that would be a real benefit.”
Mark Flannagan, Chief Executive of Beating Bowel Cancer, said: “What is clear from this research is that partners, relatives and close friends of bowel cancer patients can find themselves in a very desperate place.
“Time and time again people said they felt uncertain, helpless and longed for some kind of normality.
“It’s very difficult to say ‘but what about me’ when your loved-one is going through bowel cancer but the emotional impact on family and friends can be very debilitating.
“However, with the right support and information their fears and anxieties can be relieved. As a charity, we’re here for everyone affected by bowel cancer and would encourage anyone, whether they’ve been diagnosed or are supporting someone who has the disease, to contact us for help and advice.”
As part of the research, family members of those with bowel cancer were asked to keep a diary. The honest accounts of the issues they face are painfully revealing, with spouses and close relatives struggling to cope. One of the recurring themes from the study is that feelings of helplessness, panic and above all isolation can be all consuming.
Comments from the report include:
“I feel helpless! I don’t know what to do or say to help. I feel so uncomfortable in the situation we have found ourselves in and I really don’t know how to handle it.”
“The worst impact I have had is watching my husband go through this and not knowing how to help him. The feeling of helplessness has overwhelmed me.”
“I found dealing with the uncertainty very difficult. lt was like a living hell.”
Paula Madden, colorectal nurse consultant at Beating Bowel Cancer, said: “If the person going through cancer knows that the closest people around them are being supported, it will help them as well to have a more positive and calm approach to what they are going through.”
The report ‘Hidden Heartache: the untold story of bowel cancer’, is published today (29th March 2016) in the lead up to Bowel Cancer Awareness Month in April.
For more information, visit beatingbowelcancer.org. Or call Beating Bowel Cancer’s helpline on 020 8973 0011 to talk with one of the nurses about any concerns you may have.