Families and friends of bowel cancer patients are experiencing "hidden anguish" following the diagnosis of a loved one, a new report shows.
This can lead to family break ups, sleepless nights as well as feelings of 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.
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."
The report from Beating Bowel Cancer suggests 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 support following the death of their loved one.
Opening up and talking was identified as an important way to patients and their friends and family to cope with the burden of diagnosis, treatment and aftercare.
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, added: "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 six weekly appointment with the oncologist and it’s 20 minutes...then you’re out of the door, you feel really lonely."
He added: "Nobody tells you how her health is going to deteriorate, nobody tells you the practical things you’re going to need - 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."
Discussing the report's findings, Mark Flannagan, the 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 information."
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 in the lead up to Bowel Cancer Awareness Month in April.
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