Talking Blood Cancer

In this episode of Talking Blood Cancer, host Maryanne Skarparis sits down with Garry Kafoa, a proud Minjungbal man from the Bundjalung nation, to reflect on his experience with acute myeloid leukaemia and his journey of healing and resilience.

Garry shares how his diagnosis at age 44 dramatically changed the course of his life as a professional fisherman. He discusses his early symptoms, the delay in seeking medical attention, and the importance of creating safe spaces for First Nations men to talk about health concerns. He describes the emotional impact of receiving a confronting prognosis and how hope, the support of family, and his cultural beliefs guided him through treatment, including a life-saving stem cell transplant from his brother.

They moved to Garry’s life after treatment, touching on challenges such as depression and finding new purpose. He credits music and connection with community as vital to his recovery, leading him to roles in community service and cultural training. He highlights the importance of holistic healing, connection to country, and tradition in supporting wellness.

Providing insights into the unique experiences of First Nations people facing blood cancer and underlines the value of supportive environments, storytelling, and peer connection throughout treatment and beyond. Garry also shares a song inspired by his journey, capturing the emotional landscape of diagnosis, treatment, and hope.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this episode of Talking Blood Cancer, host Kate Arkadieff welcomes Trudy Marr to share her experience as a mother caring for her young son, Bobby, who was diagnosed with B-cell acute lymphoblastic leukaemia at just three and a half years old. Providing a first-hand look at the journey from early symptoms and the process of seeking a diagnosis, through to navigating hospital systems, and the daily reality of being a parent-carer in a regional community.

Trudy Marr shares her insights into recognising when something isn’t right with your child and advocates for the importance of trusting parental instincts, especially when navigating various medical opinions. She describes the shock and rapid changes that come with a childhood cancer diagnosis, and the emotional and logistical challenges that families face, especially those who must travel long distances for treatment.

Covering the ongoing impact of cancer beyond the completion of active treatment. Trudy Marr explains the concept of “survivorship,” highlighting how life changes for the child and their family after treatment ends. She details the lasting effects of cancer treatment, including physical, cognitive, and social challenges, and shares how important it is for parents and carers to remain advocates for their children as they continue to grow.

They also explored the unique difficulties faced by regional families, including travel demands and limited access to support services close to home. Trudy Marr discusses her current work in advocacy, aiming to improve long-term survivorship care and support for children and families affected by blood cancer.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this episode of the Talking Blood Cancer podcast, host Kate Arkadieff sits down with Denise Andres to talk about her lived experience supporting her husband, Jacob, through his diagnosis and five-year journey with multiple myeloma. Denise shares openly about the shock of diagnosis, the rapid changes it brought to their daily lives, and the shift from being a partner to becoming a carer.

Exploring the challenges Denise and Jacob faced, including managing ongoing treatment, coping with the effects of chemotherapy, and navigating the emotional strain that comes with a terminal diagnosis. Denise describes the difficulty of balancing her own health concerns with Jacob’s needs and the importance of a strong support system during such a difficult time.

Denise candidly discusses the reality of caring for someone living with blood cancer, touching on topics such as the impact on intimacy, the loss and grief that occurs before and after bereavement, and having hard conversations about end-of-life planning. Providing practical advice for others in similar situations, such as writing down important wishes and being open, where possible, about emotions.

Following Jacob’s death, Denise reflects on her journey of grief and the process of finding a new sense of normalcy. She shares how she found healing through saying yes to opportunities and eventually moved into a caring profession herself, wanting to support others going through similar experiences.

This aims to provide comfort and reassurance to those living with blood cancer as patients or carers, and that support is available through organisations like the Leukaemia Foundation.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this episode of the Talking Blood Cancer podcast, host Maryanne Skarparis is joined by guest Graham Lewis to discuss his lived experience with blood cancer, specifically mantle cell lymphoma. Based in Adelaide, Graham Lewis shares his journey, beginning with his initial diagnosis and the circumstances that led him to seek medical advice. He recounts undergoing both autologous and allogeneic stem cell transplants. Along with the coping strategies he and his family adopted during challenging phases of treatment.

Exploring the emotional impact of a blood cancer diagnosis and its ripple effect on family dynamics. Graham Lewis explains how his pragmatic approach to treatment initially helped him, but also candidly describes how “cocooning” affected those closest to him. The importance of open communication and maintaining connections within his community, offering insights on how these support networks contributed to his psychosocial wellbeing.

Graham discusses living with chronic graft-versus-host disease (GVHD) following transplant. Describing the setbacks that came with severe physical disability and how the COVID-19 pandemic compounded feelings of isolation. They emphasise the benefits of advocacy work and sharing experiences to improve healthcare outcomes for others facing similar challenges. Providing practical advice for patients and carers, and the importance of assembling your own support team, maintaining curiosity, and investing in one’s own health and relationships.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this episode of the Talking Blood Cancer podcast, host Kate Arkadieff is joined by Nicole Sanzo, who shares her personal journey with blood cancer and following diagnoses. Nicole was diagnosed with acute lymphoblastic leukaemia (ALL) at just 4 years old. She discusses the challenges of receiving a diagnosis in regional Australia, and the realities of treatment as a young child.

As Nicole talks through her experience, she reflects on how treatment affected her childhood, including her learning, social connections, and memory formation. Describing the support she received at school, with having teachers and aides who helped her negotiate learning difficulties. Along with her ongoing challenges such as fatigue and adjusting to life after treatment, which continued to affect Nicole beyond her initial diagnosis and recovery.

Nicole’s story continues with her later experiences of being diagnosed with two additional cancers as a young adult. First, a rare salivary gland cancer at age 18, and then breast cancer at 25. She details the emotional and physical toll of facing multiple cancer diagnoses, the impact on her family, her coping strategies, and the importance of seeking and accepting support. She openly discusses the difficulty of returning to a “normal” life, the experience of isolation, and the continued effects on her health, work, and outlook.

Throughout the episode, Nicole emphasises resilience, the value of psychosocial support, and the importance of peer and family connections for people navigating blood cancer and its aftermath. Highlighting real and practical considerations for patients and carers. Ranging from educational challenges, accessing healthcare in rural areas, and the need to advocate for one’s health, through to everyday adjustments for living well after cancer.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network.

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

*This episode includes discussion of suicide and may be distressing for some listeners. Please take care while listening and consider seeking support if needed.

In this episode of the Talking Blood Cancer podcast, host Maryanne Skarparis sits down with Barry Du Bois, well-known TV presenter, builder, and ambassador for the Leukaemia Foundation, to discuss his lived experience with blood cancer. Barry speaks openly about his multiple diagnosis, including his first cancer diagnosis in 2011 and his later experience with multiple myeloma, providing insight into both the patient and carer perspectives.

Barry shares the challenges he faced starting from his mother’s cancer journey in a country town, the trauma of losing a pregnancy with his wife Leonie, and then caring for Leonie during her own cancer diagnosis. He highlights the emotional toll of supporting loved ones through cancer, describing what he calls “borrowed trauma,” and reflects on the feelings of grief, isolation, and depression that followed. Sharing the importance of human connection and communication in helping him rebuild resilience during these difficult times.

They talked about the significance of honest and empathetic conversation. Barry explains the different types of conversations people need during cancer, whether it’s solution-based, social, or empathy-focused, and encourages listeners to ask questions rather than offer solutions. Barry illustrates how small acts of empathy, such as a supportive phone call or a simple presence, were key in helping him take “micro steps” toward regaining his wellbeing.

People will benefit from Barry’s honesty about vulnerability, the realities of living with an incurable blood disease, and the gentle encouragement to seek connection and small moments of joy while managing the ups and downs of a cancer diagnosis.

From Barry:

Breath work has been a quiet but powerful part of my life for many years.

When I was told I had just three months to live due to blood cancer — a diagnosis I now live with — I needed simple ways to steady myself when everything felt uncertain.

Breath work became one of those anchors.

Slow, intentional breathing supports oxygen delivery to the blood, encourages circulation, and helps calm the nervous system. That state of calm can support immune health, recovery, and the body’s ability to cope with treatment and fatigue.

It’s not about fixing anything or forcing positivity.

It’s simply about giving your body a moment of ease.

I’ve created a free, guided breath work video for anyone who feels it may help — patients, carers, or loved ones.

You can access it here:

👉 https://barrydubois.com/breathworktyp

There’s nothing to get right.

Just follow along and breathe.

—--

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this episode of the Talking Blood Cancer podcast, host Maryanne Skarparis welcomes guest Candice Forward, a mother of three, who shares her family’s experience with her youngest son River who was diagnosed with T-cell acute lymphoblastic leukaemia at the age of two and a half.

Candice describes the early signs of River’s illness and the response that led to his diagnosis. Detailing the intensive nine-month treatment period, during which River spent most of his time as an inpatient, and the impact it had on their family’s daily routine. Exploring how Candice and her partner balanced caring for River and their two other children.

The emotional and psychological challenges that come from caring for a child with blood cancer, including the importance of accessing professional support. Candice explains how engaging with a psychologist helped her process trauma and manage communication with her children. She also discusses the aftermath of treatment, including River’s bone marrow transplant with his older brother Reid as the donor.

Candice speaks honestly about managing survivor’s guilt, the emotional toll of post-treatment adjustment, and how simple daily practices like gratitude and self-care have helped her and her children move forward. They reflect on the value of peer support, the importance of open communication, and the need for ongoing advocacy to address the broader support needs of families affected by blood cancer.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

Welcome to a new season of the Talking Blood Cancer podcast!

In this episode, host Kate Arkadieff sits down with guest Alysia North who shares her personal journey after being diagnosed in 2022 with Hodgkin's lymphoma at age 28. Living in Central Queensland and navigating life as a new mother at the time, Alysia describes the sudden onset of symptoms and the psychological impact of moving from healthcare professional to patient.

Looking through the challenges Alysia faced as she underwent chemotherapy, the loss of independence, and the emotional toll of hair loss and physical changes. She openly discusses the impact on her family. The reliance on her support network, especially her husband and mother, and the adjustments required when caring for her infant son, Theo, during treatment.

A significant part of Alysia’s story is her experience with fertility preservation. She made the difficult decision to focus on recovery for the sake of her family. Despite a high likelihood of infertility following chemotherapy, nearly two years after finishing treatment, Alysia naturally conceived her second child, Charlie, whom she describes as a "miracle baby." This brought hope and joy during her survivorship and helped her heal emotionally from her cancer journey.

Throughout the episode, Alysia provides practical advice for other young people and parents facing blood cancer, emphasising the resilience of children and the importance of accepting help. Exploring how recovery is a gradual process and the ongoing need for psychosocial support.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network

Mentioned in this episode:

To help in our pursuit of better government support, sign our petition on cutcancercost.org.au.

Cut the cost of cancer – Leukaemia Foundation

In this wrap-up episode of the Talking Blood Cancer podcast, hosts Kate Arkadieff and Maryanne Skarparis reflect on the year’s conversations and the impact of sharing lived experiences with blood cancer. Together, they look back at stories shared by people at different stages of their journeys, from those newly diagnosed, to long-term survivors, young parents balancing treatment and family, and healthcare professionals offering their perspectives from within the system.

Highlighting how each individual’s story is unique, yet many common threads connect people affected by blood cancer. They discuss the honesty with which guests have spoken, not only about the challenges of fear, uncertainty, and grief, but also about moments of connection, unexpected joy, and personal strength.

Offering reassurance and appreciation, reinforcing the value of community and shared support for those navigating blood cancer.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network

In this episode of the Talking Blood Cancer podcast, host Maryanne Skarparis is joined by Ian Brandon to discuss his experiences caring for his wife Cheryl, who battled non-Hodgkin's lymphoma. They delve into the journey that began in 2012 when Cheryl was first diagnosed, reflecting on the years of treatment and care they underwent together.

Ian recounts Cheryl's initial reluctance to seek medical help and the rapid developments that followed her eventual collapse and hospitalisation. Outlining the difficult but crucial steps taken in seeking treatment, including the critical role played by the Wesley Hospital in Brisbane.

Exploring the immense support provided by the Leukaemia Foundation, including their accommodations and resources, which helped Ian and Cheryl through ten years of challenging times. Ian highlights having confidence in the medical team and the significance of the support network provided by the Leukaemia Foundation to both patients and carers.

They also touched on the emotional and logistical aspects at the end of Cheryl's journey, emphasising the critical support from various healthcare teams, including the palliative care unit and the ongoing significance of blood donations.

For more information about the Leukaemia Foundation visit: https://www.leukaemia.org.au

The Talking Blood Cancer Podcast is brought to you by the Leukaemia Foundation and is a proud member of the Talking HealthTech Podcast Network - the premier audio destination for cutting-edge insights and thought leadership in healthcare delivery, innovation, digital health, healthcare ICT, and commercialisation. Learn more at www.talkinghealthtech.com/podcast/network