How this husband and wife stood united against cancer and are now stronger than ever
- Health & Wellbeing
When Sue Neville was diagnosed with throat cancer, her husband Stephen threw all his energy into supporting his wife. Although the cancer journey took a heavy emotional toll on Stephen, he didn’t want to burden his wife any more than necessary. So, like many spouses of cancer patients, Stephen’s own wellbeing took a backseat. To overcome the challenges ahead, Stephen and Sue soon realised that ultimately they would need to lean on each other for support.
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“I was very conscious that I wasn’t the focus. Sue was the focus and we needed to do everything we could to get her better,” says Stephen, who took four months off work to support his wife after her diagnosis.
According to Stephen, the cancer came as a bigger shock to him than to his wife. “I think it struck me harder than it did Sue. She knew something was wrong and was prepared for it,” he said.
From time to time Sue experienced sore throats and it was always attributed to minor conditions. However in 2009, Sue started noticing something more sinister.
“If I looked in the left side of my mouth I could see the roof of my mouth coming down, it wasn’t a straight arch. Over a few months I could see one side moving in,” said Sue, who was eventually diagnosed with throat cancer later that year at age 50.
Stephen says that after the initial shock of diagnosis, the biggest challenge was coming to terms with the treatment preparation phase. “When you hear about the treatments in one way it’s a bit of a blur,” says Stephen.
Since high dose radiation in the neck area could compromise the health of the teeth, Sue had six teeth removed on the tumour side and two on the other side as a precautionary measure. She also had to have a special tube inserted through her throat before starting chemotherapy and radiotherapy to help her swallow during and post-treatment.
Sue was dependent on the tube for about two months but kept it in for another four months to help make meal times easier. She lost around 30kg, had problems speaking and felt very ill for months.
“You try to do everything you can for the person you’re supporting obviously, but sometimes I felt like a fish out of water,” says Stephen. Although doctors were available to answer any questions, at times this loving husband still felt shut out of the medical process. “I didn’t know how I should be reacting, or if how I was reacting was right or selfish,” he adds. “There weren’t any specific materials for me as the carer. It would have been useful to have someone to talk to.”
Sue, on the other hand, says although she too shaken by the whole process she didn’t feel the same burden as her husband. “I remember my first appointment, I was totally overwhelmed and it was so unexpected. But I felt like I could leave it in my health professionals’ hands,” she says. Then adding, “I saw a counsellor and psychologist before starting treatment. There was support available for my family as well but it wasn’t targeted or structured.
According to Dr Janelle Levesque, a researcher at the Ingham Institute in Sydney, there’s a growing body of evidence that suggests partners experience more anxiety or stress than the cancer patient. “Partners feel less control than the patient and they often feel they don’t have a legitimate role in care. They may attend appointments with the patient but they may feel rushed, or the doctor may not give them as much attention,” says Dr Levesque.
In a recent Australian study involving around 400 partners and caregivers of cancer survivors, researchers found that almost a third of participants reported anxiety, even 12 months after the initial diagnosis. When they compared their results with those of cancer patients, they found that the patients reported less anxiety than their partners at six months post-diagnosis, while depression rates were similar across both groups.
Another study involving around 200 American prostate cancer patients and their partners mostly aged in their 60s, found that partners report poorer mental health than patients at pre-treatment, at six months and at 12 months. Only at 18 months post-treatment did partners start to report better mental health than the actual patients.
In an Australian-first, Dr Levesque and her team are currently trialling a program they developed specifically for couples trying to cope with a recent cancer diagnosis. The Coping Together program and study provides a step-by-step guide to addressing a range of issues confronting patients and their partners including communicating with each other and health professionals, and managing mental health issues like anxiety and depression.
“There’s a relationship between the partner’s stress and anxiety and that of the patient. One affects the other,” says Dr Levesque. As a caregiver, Stephen says he would have liked more support and some reassurance along the way.
“In the middle of it, in the peak of treatment when Sue was so physically ill, she just didn’t want to engage and we didn’t talk about it,” Stephen said. Then adding, “There were probably times like that where it would’ve been useful for me to talk to someone about what I should be doing, and ask, ‘is it normal to feel this way?”
Stephen and Sue, who have been married for more than thirty years after first meeting at university, say they were in some ways extremely lucky as Sue responded well to treatment and it wasn’t too long before they were able to resume normal life.
Sue and Stephen together in 1981
While the Coping Together program wasn’t available at the time, they both say they would have greatly benefited from this initiative. “Until you’re in it you don’t realise how much it is about you and your family – kids and husband – not just you,” Sue says. “You just have to be kind to each other. Underlying all of that we both find each other incredibly funny. Stephen would say inappropriate things at wrong times and we would have a good laugh.”
Coping together: a practical guide for couples facing a recent diagnosis of cancer
The Coping-Together intervention aims to help couples manage a recent cancer diagnosis by:
- Increasing awareness of challenges to prepare for.
- Facilitating independent coping.
- Providing a sense of normality.
- Connecting patients and partners to people and services.
- Complementing support received from health care professionals.
- Giving hope that something can be done to ‘pull through’.
For more information visit this website.
Calling for study participants
The Ingham Institute is currently recruiting recently diagnosed cancer patients and partners to participate in the Coping Together program and study. To get involved call 1800 104 597 or email here.
Have you and your partner or spouse experienced a health crisis? What kinds of coping mechanisms helped you and your family through this tough time? Join the conversation below…