Suffolk mother-of-four recalls the fear, loneliness and pain she felt as her husband, 41, lost his battle with bowel cancer
- Credit: Archant
A new report reveals the depths of loneliness and despair suffered by relatives of bowel cancer patients.
Sheena Grant finds out about an initiative to improve support and talks to a Suffolk woman whose husband died of the disease.
Melissa Cutting’s husband, Chris Goodhead, died of bowel cancer in January, 2009. The fear, loneliness and pain she felt, trying to maintain family life for the couple’s four young children as his illness progressed, is all too easy to recall.
“Over the Christmas I was decorating the house, wrapping presents and trying to be jolly for the boys at the same time as caring for Chris, who was by then very unwell,” says Melissa, who lived in Essex at the time but has since moved to Helmingham.
“With cancer, everything is, somewhat understandably, directed at the patient. I used to sit in meetings with Chris and hospital consultants and it was like I wasn’t there. Yet I was the one doing the care and research. I was managing the illness.”
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Melissa, whose children were aged between just five and 11 when their father died, is not alone in experiencing these feelings. Research by the charity Beating Bowel Cancer shows just how hard the disease hits not just patients but their loved ones too, leading to sleepless nights, loneliness, guilt and even family break-up.
It is the first time the experiences of everyone affected by the UK’s second-biggest cancer killer – patients and their relatives – have been researched.
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The research report Hidden Heartache: the untold story of bowel cancer was published to coincide with Bowel Cancer Awareness Month in April. It found that most people in the study turn to partners, friends and healthcare professionals for support, but, worryingly, 15% of family and friends said they don’t speak to anyone. In addition, only 66% of family members and friends felt they were given the information and support they needed whilst helping 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. To try and address the issues the report highlights, the charity has launched its Hidden Heartache appeal, which aims to raise £100,000 to expand services and support more people affected by bowel cancer.
For Melissa, family support was vital, but she wishes she’d been able to connect more with others in the same situation as her.
“My greatest support personally came from friends and family, and we also had the most wondrous chemo nurse,” says Melissa. “After Chris died I became a big user of the Merry Widow website and the forum there. If there had been a similar forum for carers when we were going through our nightmare, where I could have chatted online with people who were experiencing similar situations, that would have been really useful and I’m sure I would have used it.
“There are some aspects to caring 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 was having to face but I can imagine that I would have been able to talk about it more openly with somebody else who understood, and especially as I could have done it anonymously.
“The emotional impact on family and friends can be very isolating. It might appear you are coping but the reality is often different. It can make such a difference to talk to someone who understands what you are going through.
“I’d urge anyone having a hard time to contact Beating Bowel Cancer, where you can speak to one of their nurses or chat to someone on their forum who’s been in a similar situation.”
Chris, an IT consultant, was just 39 when his cancer was diagnosed and 41 when he died.
“The illness was exhausting for both of us,” says Melissa, who has since remarried. “He would have a blood test, then start his chemotherapy the next day. He would be very unwell until the chemo was detached two days later. Then he would begin the process of recuperation and would be functioning almost normally before we had to start the whole process all over again.
“He was a fit man and ran the London Marathon only six weeks before he was diagnosed.” He’d had rectal bleeding two years before, but the illness was more advanced by the time it was diagnosed.
“We were told up front that he was not going to survive,” says Melissa. “They said he was young and they could control the condition. In our eyes, that translated to: ‘We can beat this’. We always kept a positive frame of mind about it and genuinely believed we would be able to beat it.
“We took the stance right from the start of trying to be as honest with the children as we could. I remember one asked: ‘Does this mean daddy is going to die?’ We said we were going to do everything we could to make sure that didn’t happen. They were so young, that was really hard for them to grasp.”
Chris took part in a gruelling drug trial which Melissa now believes hastened his death.
“It became a car crash at the end,” she says. “We couldn’t see it happening at the time, though.
We thought it was a response to the trial. He started to withdraw from the family. Nobody recognised that this is a typical response when someone is dying. Trying stoically to get through that whole Christmas thing was horrendous. I was so unprepared.
“My world imploded when he went. We were a very close family. He was the most wonderful husband you could ask for and I was devastated.
“I had a lot of support from family and friends but I had very little professional help.
“The kids did not want anyone else looking after them. They wanted my food and I carried on taking them to school.
“I was aware people were talking about us all the time. I was in survival mode, just trying to breathe. It took my breath away. I have never experienced pain like it. You can’t comprehend how awful it is until you are in it.
“Anyone looking from the outside can feel sad for you and feel as sorry as they want. For us, it was all-encompassing, all the time.
“I would love Beating Bowel Cancer to be able to offer the extra support they want to give to carers.
“Caring is a tough job. Watching someone you love go through that is a tough job. I just hope they raise this money.”