When caring for someone with cancer becomes a second job

Research shows one in two Victorians will be diagnosed with cancer by age 85. This means that most of us are likely to get a cancer diagnosis or know someone who has cancer, as well as someone who has been (or will be) a carer.

More than 90 per cent of people living with cancer in Australia have at least one informal carer (a family member or friend) supporting them with care over the course of their illness, treatment, and through to end of life.

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These carers provide vital practical, medical, emotional, legal, and financial support without compensation, and are mostly females.

This National Carers Week we’re recognising and celebrating carers, and raising awareness for the essential role they play in supporting those diagnosed with cancer.

Jacinta and Tony’s story

In 2009, after feeling a sore lump on the side of his neck and having it biopsied, Jacinta’s husband Tony was diagnosed with head and neck cancer originating in his tonsils.

Jacinta says that at first, she went into denial. ‘I just convinced myself that he was fine. I just couldn’t comprehend it,’ she says. ‘I just kept soldiering on and trying to work the first couple of weeks, through the stress.’

Feeling that his prognosis was fairly positive, the pair decided Tony would be fine to take the two-hour round-trip train journey for his treatment and that Jacinta didn’t need to take time off from work.

However, once he began his full-time treatment regimen of radiation therapy and chemotherapy, they both realised they were going to need to make major changes.

When caring becomes a full-time job

Before long, caring for Tony became a full-time job for Jacinta. He needed help in all aspects of his daily life as he experienced painful changes to his skin, nausea, weight loss, fatigue, and difficulty swallowing due to his harsh treatment.

‘I think caring is a job,’ Jacinta says. ‘It’s just, you’re not paid for it.’

Jacinta provided medical, emotional and practical care. Tony’s ambulance membership included patient transport, which he used at first, but Jacinta started driving Tony to and from appointments almost every day of the week once that became too difficult.

She was able to access her Employee Assistance Program for counselling to manage the emotional impact of Tony’s diagnosis, and her employer granted her paid carer’s leave. Without these supports, Jacinta says it would have been a ‘daunting and complex time’.

‘I’m so grateful to that particular workplace,’ Jacinta says. ‘I ended up having about eight weeks off work, fully paid. If I didn’t have that, we would have lost our house.’

Cancer carers can spend 17–40 hours each week looking after someone with cancer (dependent on the cancer type). This can be equivalent to a monetary cost of over $2500 per month.

At the end of his treatment in 2010 Tony was cancer-free, but still dealt with ongoing effects from his treatment with Jacinta’s support. ‘I joke sometimes with people that I could seriously be a nurse now,’ she says. ‘I had to give him injections regularly and monitor him so closely.’

The emotional impact of being a carer

Unfortunately, in 2023 Tony found a lump in his groin area and was soon diagnosed with non-Hodgkin’s lymphoma. His doctor recommended chemotherapy and immunotherapy as treatment, and luckily he had a very positive prognosis as the cancer was found early.

Jacinta says that as a carer, this second experience was harder and easier at the same time. ‘It was easier because I was familiar with the cancer centre and what I needed to do,’ she says, ‘but also harder because we’ve got our daughter now’.

The pair decided to be honest with their daughter, drawing on resources such as Talking to kids about cancer to manage sharing the news. Their community also offered support, helping with school pickups and turning it into a positive experience where possible.

Luckily, their daughter didn’t have to see her dad in too bad a state as the treatment wasn’t as harsh. But Jacinta still remembers that first experience, and the trauma she experienced as a carer.

‘To see someone that you love suffering so much is really, really hard. But you’ve got to keep it together for them,’ she says. ‘Because you want to support them, and to care and show empathy. But you can’t fall apart either, because then it could potentially make him feel worse. So, it’s a bit of a delicate balance.’

Studies have shown that carers experience higher levels of anxiety, depression, and feelings of burden.

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As a psychologist herself, Jacinta reached out to those around her for emotional support. She also made sure to find time for small things which would give a sense of normalcy, like walking down to the local café for a coffee whenever possible.

‘Don’t try to do it all yourself,’ Jacinta says. ‘Ask for help… It’s really challenging, and you’ve got to look after yourself equally as much as the person you’re caring for.’

Tony reached out to Cancer Council’s peer support program and was able to talk about his experience with another man who’d experienced throat cancer. He’s now in remission, going for three-monthly checkups and being careful to take care of his health with good nutrition and exercise.

Influencing change for carers

Cancer Council Victoria and the McCabe Centre for Law & Cancer are advancing the rights of cancer carers.

Their recent work influenced an Australian Parliamentary report to improve recognition for unpaid cancer carers, with a number of their recommendations being taken up in the review of Australia’s federal Carer Recognition Act 2010.

‘We know that the vital contribution that carers make is often unseen – and we are seeking to make the unseen seen at the highest levels.’

– Tarishi Desai, Manager – Treatment & Supportive Care, McCabe Centre.

The McCabe Centre for Law and Cancer also share insights and lessons around the world from law reform, economic research, and policy implementation for carers rights – speaking at last month’s World Cancer Congress in Geneva.

In an ideal world, Jacinta says, carers would have almost as much support as the person diagnosed with cancer – both from the health care team and from their workplace.

‘Of course I understand, the focus is so much on the patient,’ she says. ‘But the carer is incredibly important.’

Jacinta says the essential role of carers should be recognised and valued more.

‘It should just be an absolute given that… you get the leave and the support that you need,’ she says. ‘Because my experience is not what everyone experiences as a carer and as a worker.’