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Health News

‘Where was I going to find this money?’ – Cancer’s unseen side effect

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Man holding a womens hand struggling with cancers unseen side effects.
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‘Where was I going to find this money?’ – Cancer’s unseen side effect

 

UNSW Sydney

 

Finances need to be a bigger part of our conversation about cancer, UNSW Sydney researchers say.

When Jessie Oldfield was experiencing some bleeding at 23 weeks pregnant, she was worried that she had pre-eclampsia. But when the 28-year-old from Tumbarumba, NSW, turned up at the emergency department, the reality was so much worse.

“The doctor checked me all out and looked like she had run over my dog. Then she told me that I had cervical cancer,” Jessie says.

“When I heard that news, I was thinking, pre-eclampsia doesn’t look so bad now.”

Jessie Oldfield prior to her cervical cancer diagnosis. Photo: Supplied.

Jessie Oldfield prior to her cervical cancer diagnosis. Photo: Supplied.

The next months would be a fight for Jessie and her baby’s survival. Jessie underwent multiple rounds of radiotherapy and chemotherapy, taking only a short break to give birth before returning to treatment.

The costs of receiving treatment quickly racked up. Jessie would regularly make the 90-minute drive to Wagga Wagga and the five-hour drive to Sydney for treatment. She received some support from Can Assist and the Isolated Patient Transport and Accommodation Assistance Scheme (IPTAAS), but paid the remaining travel and accommodation expenses out of pocket.

“I freaked out when I saw the costs. Where was I going to find this money? I’d just gotten pregnant,” Jessie says.

The treatments themselves were also expensive, with chemotherapy and radiotherapy only available through the private system in Wagga Wagga.

Thankfully, now both Jessie and her son Jack are doing well. However, Jessie worries about what will happen if her cancer returned.

“I’ve decided that if my cancer was to return or a new cancer found then I wouldn’t go through treatment because of how expensive it has been,” Jessie says.

“We simply can’t afford it, especially with the price of everything going up and now having a little one to look after.”

Jessie Oldfield with her partner Daniel after the birth of her son Jack. Photo: Supplied.

Jessie Oldfield with her partner Daniel after the birth of her son Jack. Photo: Supplied.

Financial toxicity of cancer

Jessie is one of many Australians who experience significant financial difficulties, or ‘financial toxicity’, due to cancer.

According to Dr Jordana McLoone from UNSW Medicine & Health and the Kids Cancer Centre at Sydney Children’s Hospital, financial toxicity goes beyond treatment costs.

“Financial toxicity is the negative patient impact coming from the cost of having cancer treatment. There are the direct costs of treatment as well as the indirect out of pocket costs related to your care and follow up, and potentially loss of income if time off work is needed,” Dr McLoone says.

People living outside of metro areas, as well as those who are already financially more vulnerable, are more likely to be affected by financial toxicity. However, as the cost of living goes up in Australia, this is likely to be an issue for more and more cancer patients.

Gaps in healthcare system

According to Dr McLoone, financial toxicity is a ‘blind spot’ within the cancer care system.

Dr McLoone has been conducting research as part of the Clinical Oncology Society of Australia (COSA) Financial Toxicity Working Group, to understand how healthcare professionals perceive and approach financial toxicity.

This is part of the working group’s broader program of research to define financial toxicity, scope current support services and resources, and develop solutions and innovations to address the issue. A key component of the working group’s research has been speaking with cancer patients (including Jessie) to understand what they are experiencing, and how they could be better supported.

Recently, Dr McLoone led a nationwide survey with Professor Louisa Gordon from QIMR Berghofer. They collected data from 277 Australian healthcare professionals in the field of oncology , including social workers, nurses, and medical specialists.

The survey analyses, published in Asia Pacific Journal of Clinical Oncology and Supportive Care in Cancer, show that 88 per cent of participants believed that discussions about financial toxicity are an important part of high-quality care.

“Healthcare professionals believed it was their responsibility within oncology care to have these discussions with families and to try and be as supportive as possible,” Dr McLoone says.

However, 28 per cent of health professionals said that they struggled to have financial toxicity discussions, because they lacked time during consultations and information about the topic. Also, some of the health professionals felt that there weren’t sufficient support services and resources to refer patients to.

“They feel they have no solutions to help patients that are sitting in front of them, very sick and very financially stressed,” Dr McLoone says.

Man holding a womens hand struggling with cancers unseen side effects.

Many Australians are unprepared for the financial toxicity of cancer. Photo: iStock.

Not a simple fix

According to Dr McLoone, training for healthcare professionals could be useful to enable them to talk to patients better about financial toxicity.

“This could involve education about the support services and resources available – but also the importance of just listening, acknowledging, validating and walking alongside the patient and their family,” Dr McLoone says.

However, to help patients with financial toxicity, there are also complex systemic issues that need to be addressed.

“There are certain issues that we weren’t even aware of until we started talking to patients. For example, you cannot apply for the Disability Support Pension unless you have a chronic, stable illness. And if you’re receiving cancer treatment, technically your illness hasn’t stabilised, so you’re ineligible,” Dr McLoone says.

Government, healthcare providers, patients and researchers will need to work together to identify and solve these gaps in support. Dr McLoone says that it is critical to address financial toxicity as for some patients, it can lead to truly poor outcomes.

“Some families have great support networks and they make it through and recover. But for some families, they do make difficult decisions like treatment abandonment. It’s a question of: do I feed my kids, or do I get my chemo?”

In May this year, the COSA Financial Toxicity Working Group, led by Professor Raymond Chan, hosted a National Think Tank on the topic of financial toxicity, bringing together researchers, health professionals, policy makers and patients. From these discussions the working group is developing a road map of the next steps to combat financial toxicity. Dr McLoone and others in the working group are optimistic about developing and implementing real solutions for patients and their families.

Cancer Council Helpline:   13 11 20   Cancer Council support resources

Dr Jordana McLoone, from UNSW Medicine & Health and the Kids Cancer Centre at Sydney Children’s Hospital, is researching the financial toxicity of cancer. Photo: Supplied.

Dr Jordana McLoone, from UNSW Medicine & Health and the Kids Cancer Centre at Sydney Children’s Hospital, is researching the financial toxicity of cancer. Photo: Supplied.

Key facts:

– Many Australians experience significant financial difficulties, or ‘financial toxicity’, due to cancer – particularly now in the cost of living crisis

– E.g. our case study Jessie Oldfield, a 28 y.o. based in Tumbarumba, was diagnosed with cervical cancer at 23 weeks pregnant – had to cope with costs of treatment + travel to treatment + new baby

– Dr Jordana McLoone from UNSW researches financial toxicity. Her new research shows that 88% of health professionals believe they need to talk to patients about financial toxicity, but 28% lack the knowledge/time/resources for these conversations

– Managing financial toxicity is crucial to protect patients financially and prevent outcomes like treatment abandonment (which Jessie is sadly considering)

 

For more health news, click here.

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Breast Cancer Awareness Month

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Breast Cancer Awareness Month

The Honorable Aileen MacDonald has reminded the public that October is Breast Cancer Awareness Month.

Ms. MacDonald emphasised the importance of supporting the National Breast Cancer Foundation during this time, as breast cancer remains the second most commonly diagnosed cancer in Australia, claiming the lives of nine people each day.

“The aim of Breast Cancer Awareness Month is to shine a light on the devastating impact breast cancer has on thousands of Australians each day,” Ms MacDonald said.

“The statistics are alarming. Every year more than 21,000 people in Australia, including around 200 men, will be diagnosed with breast cancer,” she said.

“It saddens me that every year more than 3,300 people in Australia, including 33 men, will die from breast cancer.”

Ms. MacDonald encouraged everyone to undergo screenings, as early detection significantly improves the chances of successful treatment for breast cancer confined to the breast.

“If you experience any symptoms such as lumps, dimples, discharge or discolouration, head to your doctor for further examination,” she said.

For further information Ms MacDonald said visit the National Breast Cancer Foundation website.

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headspace music program hits right note for mental health

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headspace music program hits right note for mental health

It is Mental Health Month and headspace Lismore and Tweed teams are emphasising the importance of seeking support, saying it may look different to what people think.

headspace Senior Manager, Sim Balzer, says nowadays mental health support can take many varied forms.

“It can be creative, or active; in groups with peers, or it can be one-on-one and from the comfort of your bedroom. The great thing is, we can connect young people with the support style that works for them,” Balzer said.

Wednesday 9 October is National headspace Day and this year’s theme, “Pause. Reflect. Reconnect.”, encourages young people to find balance amidst life’s challenges by reconnecting to things that bring them joy. If that thing is music or filmmaking, then headspace Lismore have some programs for you.

Level 3 Music Studio

The Level 3 Music Studio is delivered by headspace Group Facilitator, Vincent McManus, better known as Vinnie. Passionate about the therapeutic benefits of music, Vinnie supports more than 30 young people a year through his music studio.

“Music not only allows young people to engage in creative expression, but it also helps them to define who they are and their place in the world and can bring about a wonderful sense of confidence and achievement”, Vinnie said.

“I believe the creative process is a powerful therapeutic avenue for young people to explore. And if some young artists want to find a pathway into the music industry, I can help them along their way,” Vinnie said.

Vinnie has assisted young musicians to enter national songwriting competitions, find paid performing gigs and record their music, as well as helping young actors with showreels and understanding what it takes to work in the film industry through his other group, the filmmakers Media Hub.

To connect with these groups young people first sign up to headspace support and meet with a member of our intake and access team.

“Often what’s been happening is, people find out about Music Studio and how awesome it is, and then sign up to headspace so they can access it,” Vinnie said. “Before signing up many don’t realise they get access to a counsellor completely free. And they may not have considered doing those sessions before. It is this wrap around support that can be so effective.”

“When you pull off a good song with someone who was feeling quite broken, and you create something so beautiful… it is wonderful. You watch them grow this confidence in themselves,” Vinnie said.

Local Lismore singer songwriter Mia French has been part of the Level 3 Music Program and supported by headspace for several years and says it is helpful to find someone to talk to and who listens and understands.

“And then I found out there was a music studio program which was crazy! And just perfect for me,” Mia said.

“I was able to record and produce my own original songs in a professional little studio, which was an amazing opportunity and something I had never had the chance to do before.

“I got to collaborate with other musicians, make new friends and even perform live gigs.

“I can honestly say that the support from the people and programs at headspace have really helped me find a stronger sense of what I can actually achieve,” Mia said.

Vincent ‘Vinnie’ McManus

Film, art and fresh fruits groups

If music isn’t your thing, there are other activities and groups to access including arts, games, Fresh Fruits LGBTIQSB+ group and of course, the film group, Media Hub.

“With the Media Hub, what I love seeing is the peer support,” Vinnie says. “When someone comes in and they’re talking about their stuff and someone else in the group says, ‘you know, I’ve been there, you should try this…this is what I’ve done’.

“There’s an incredible sharing of real information, and I love that. It is group members saying, “I’ve got you. I’ve got you.”

Youth mental health from the view of a young person

Sam Baynham is a member of headspace Lismore’s Young Peoples’ Advisory Committee (YPAC) and says there are still multiple barriers to young people seeking support for their mental health including transport access issues, stigmatisation, and cost of living pressures.

“The constant comparison where you are told there are people who are worse off – it’s a barrier to seeking support, it invalidates your experience. That stops a lot of people from seeking help, they think ‘there are people who need it more than me’, or ‘my issues aren’t enough,’” Sam said. “The cost of everything is a barrier also. Even just getting into a GP to get a care plan made up is difficult.”

When asked about some of the key challenges facing young people Sam said the impacts of the pandemic and flood are still lingering.

“They are still having a big ripple effect on young people’s mental health, and I think this will be around for quite a long time yet.”

“Definitely over the past couple of years the main challenges have been cost of living, cost of housing, food security and climate change – the worry is a big weight. Especially after Covid and the floods – at some point it all intertwines with one another.”

“I think social media is a big issue also, especially stuff like Snapchat and TikTok. Cos’ you know, people just post little snippets of the good parts of their lives. And there’s a lot of comparing that goes on in social media. A lot of it is false stuff, it can be damaging.”

“There’s no escape from social media. And if bullying is happening over Snapchat, it disappears, there is no trace of it.”

Sam’s message to other young people is to connect in to support at any time.

“Even when things aren’t going on, it’s ok to have those conversations at any time. You don’t have to be in a bad space to seek out support.”

Anytime is the right time for support

headspace Senior Manager Sim Balzer says it is encouraging to see young people accessing various forms of support at headspace Lismore, whether it’s counselling, seeing a GP or clinic nurse, attending groups, or producing film or music.

“This integrated, multi-faceted approach to care places the young person’s interests and strengths at the heart of the support, which is what makes it so effective.”

She also wants to stress that anytime is the right time to seek support.

“There are pointy bits to life, that’s for sure. But you don’t need to wait until things get worse. There is no judgment on whether your problem is too big or too small – we’re here for anyone who needs to chat,” Sim said. “Don’t be afraid to walk through the door.”

headspace, Australia’s National Youth Mental Health Foundation, provides early intervention mental health services to 12–25-year-olds.

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New volunteer opportunities at Grafton Base Hospital

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New volunteer opportunities at Grafton Base Hospital

Grafton Base Hospital has new opportunities for community members to join the volunteering program, where they can provide comfort and social support to patients during their hospital stay.

Following the success of the initial rollout of the new Healthcare Helper Volunteer Program across health facilities in Clarence Valley, Grafton Base Hospital has now opened up new roles in additional departments.

Clarence Health Service General Manager, Dan Madden said staff really welcome and value volunteers’ contribution to the hospital.

“We have been very pleased with the first cohort of volunteers and are encouraging more people from all walks of life to join us as Healthcare Helpers,” Mr Madden said.

“We are keen for the new volunteers at Grafton Base Hospital to reflect the diversity found within our broader community to ensure all patients feel comfortable and supported.

“We have several new patient companion roles now available in our oncology, renal, surgical, and medical wards.”

Volunteer at Maclean District Hospital, Ellie Walsh said she finds giving assistance to both patients and staff rewarding.

“Having the opportunity to help hard-working staff, while supporting patients during their stay and recuperation is a privilege,” Ms Walsh said.

“Seeing a patient smile in recognition, to laugh with them, to listen to their stories and help time pass more quickly, enriches my life.”

More information can be found online.

Volunteer enquiries about Grafton Base Hospital can be directed to the General Manager’s office via email: nnswlhd-volunteer@health.nsw.gov.au or Phone: 02 6643 0355.

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