Talking Blood Cancer

In this episode of the Talking Blood Cancer podcast, host Kate Arkadieff speaks with Bhaskar Majumdar and his daughter, Urvi Majumdar, about their experience with blood cancer and the profound impact it had on their lives.

Discussing the complexities of Bhaskar’s journey, beginning with his initial diagnosis of acute lymphoblastic leukaemia (ALL) and the subsequent need for an allogeneic haemopoietic stem cell (HPC) transplant. Bhaskar shares his initial reaction to the diagnosis, the sudden and unexpected changes to his health. They also talked about the various complications Bhaskar faced post-transplant, including fluid in the lungs, infections, and the challenges of prolonged treatments, highlighting the unpredictable nature of recovery.

Urvi shares her perspective as the donor, recounting the emotional weight and concerns associated with the process. Emphasising the importance of a reliable support system and the unique emotional challenges that come with being a donor, such as the fear of potential COVID-19 exposure that could jeopardise the procedure. Both Bhaskar and Urvi mention the critical role of family support and the valuable assistance provided by the Leukaemia Foundation.

They reflect on the broader healthcare landscape, contrasting accessibility and systemic differences between countries. Bhaskar praises the collaboration of healthcare professionals in Australia and the practical support they received. Urvi's role as a National Ambassador for the Leukaemia Foundation was also highlighted and the importance of sharing their story to support others.

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 Michael Burridge, who candidly shares his experience living with blood cancer.

Michael, a resident of Emerald, Queensland, recounts his life before diagnosis, working in the mining industry and living on a farm. He delves into the four years leading up to his diagnosis when he was misdiagnosed with various conditions such as Ross River fever. Michael then describes the severe pain that led him to the ICU, where advanced scanning technology helped identify his condition, leading to an immediate flight facilitated by the Royal Flying Doctor Service to Brisbane.

Michael shares the emotional and physical journey following his diagnosis with myeloma. From his initial treatment at Royal Brisbane Hospital to his ongoing outpatient chemotherapy, Michael details the significant role of healthcare professionals and support services. He acknowledges the support he received from the Leukaemia Foundation's accommodation and social workers, which played a pivotal role in his ongoing journey.

Michael's story shows the importance of remaining positive, staying engaged in physical activities, and maintaining strong social connections to aid in his treatment and recovery. Offering valuable insights and advice for others undergoing treatment for myeloma, and highlighting the benefits of a supportive network and maintaining a positive outlook.

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 Kate Arkadieff is joined by Siobhan Hoy to discuss her experiences living with blood cancer and the aftermath of her treatment.

Siobhan's journey with leukaemia, starts from her initial diagnosis at 14 to her experience with a relapse at 18. She opens up about the physical and emotional hurdles she encountered, the impact on her family, and the logistical difficulties of receiving treatment far from home. Sharing candid insights into how she navigated these challenges, including her role in her close-knit family and her decision to focus on being an aunt rather than having children of her own.

Siobhan shares her unique perspective on life after a bone marrow transplant. She talks about the challenges she faced, such as the development of graft versus host disease that initially attacked her skin and eventually led to lupus-like symptoms. Highlighting the difficulties in diagnosing post-transplant complications and the importance of effective medical support.

Kate and Siobhan talk about the emotional toll of long-term illness, with Siobhan describing how she managed judgement and misconceptions about her appearance due to her autoimmune disease and cancer scars. Emphasising the importance of communication, education, and humour in addressing such challenges. It shows Siobhan's resilience and adaptability, alongside her belief in the power of laughter and support from loved ones.

They conclude with a shared hope that their conversation will resonate with others facing similar struggles. Siobhan's story is one of strength and optimism, providing a source of comfort and inspiration for listeners.

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 Rosie Proctor to recount her journey with acute myeloid leukaemia. Diagnosed in 1993 at the age of 32, Rosie shares the initial symptoms she experienced, including pain in her hip and a high fever, leading to her diagnosis.

Rosie elaborates on the challenges and emotions she encountered following her diagnosis, particularly during her bone marrow transplant, where she received her sibling's marrow. Despite developing graft versus host disease, she persevered through chronic fatigue and other health hurdles. Also delving into her coping strategies, such as journaling, music, and the unwavering support from her family and partner, which helped her manage anxiety and unease before and after her transplant.

Rosie's post-transplant journey, returning to work less than a year after her transplant. Rosie found purpose and fulfilment in helping others, particularly in operating theatres. Her story emphasises the importance of maintaining trust in medical professionals, the value of communication with the treating team, and the significance of emotional and practical support for patients and their loved ones.

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 Dr Ralph McConaghy to discuss the important topic of having early conversations about serious illness and end-of-life decisions.

Dr McConaghy, who is the Medical Director of the Palliative Care Service at Wesley Hospital in Brisbane, emphasises the necessity of open communication with loved ones about potential outcomes and the end-of-life process. He believes that such discussions do not alter the outcome but can help individuals cope better with what lies ahead.

He shares his personal experiences and insights from his career in palliative care. He candidly talks about the emotional toll his work can take and the methods he employs to manage this stress, such as exercise, photography, and maintaining a sense of humour. He also reflects on the rewarding aspects of his profession, including the deep connections he forms with patients and the satisfaction of helping them find dignity and humanity during their final days.

They also centred around the misconceptions about palliative care. Dr McConaghy stresses that palliative care is not just for the final days or weeks of life but is crucial throughout the course of an illness for symptom control and emotional support. He discusses how supporting patients and their families with advance directives and resuscitation plans can provide much-needed clarity and comfort.

Dr McConaghy also touches on the transformative moments in his career, learning from failures, and the profound impact of discussing love and relationships with his patients. Highlighting how the dying can sometimes become a source of comfort for their loved ones, demonstrating remarkable strength and peace.

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 Sage Wilder to discuss his personal journey with acute lymphoblastic leukaemia (ALL). Diagnosed in 2016, Sage details his experiences from the initial symptoms, including extreme fatigue and night sweats, through to his intense chemotherapy treatment and eventual bone marrow transplant.

Sage discusses the physical and emotional challenges he faced during his treatment, such as commuting long distances to the Prince of Wales Hospital for a clinical trial. He shares insights on how he managed these difficulties with the strong support of his family and friends, particularly highlighting his father's role as his bone marrow donor. Sage’s background as a rugby league player played a significant role in his determination to regain physical fitness post-treatment.

Exploring how Sage found therapeutic value in physical activities, like walking his dog on the beach, and gradually rebuilding his strength with the help of a coach. He talks about the importance of listening to his body and setting realistic goals during recovery. Sage’s story emphasises the critical role of maintaining a positive mindset and the therapeutic effect of staying physically active.

Moreover, Sage opens up about his concerns regarding relationships post-treatment and how he met his supportive partner at the gym. Together, they navigated challenges such as infertility caused by cancer treatment but found joy in the birth of their naturally conceived son, Ziggy. Sage concludes by expressing gratitude for being part of the conversation and offering support to those facing similar battles, reinforcing the message that there is light at the end of the tunnel.

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 Kate Arkadieff is joined by Eleanor Davis to explore the vital topic of estate planning, particularly in the context of those affected by blood cancer.

Eleanor Davis, a Senior Associate and Practice Manager with David Davis & Associates, shares her professional insights on the importance of appointing Financial and Personal Attorneys as well as a Medical Treatment Decision Maker. Appointing people you trust to the role of a Financial and Personal Attorney as well as Medical Treatment Decision Maker Attorney ensures that a patient's financial, personal, and medical wishes are respected, even if they lose capacity, and that their decisions are not overridden by family members. Eleanor explains that seeking professional help for estate planning is essential, especially if there is no trusted family member or friend available to take on this responsibility. 

Highlighting the necessity of timely estate planning, including making a will, appointing powers of attorney, and setting up advance health directives. Eleanor discusses the different types of property ownership and their implications for estate planning, stressing the importance of understanding the rules around jointly owned properties and bank accounts. They also delve into the critical aspect of appointing trustworthy executors and the legal implications of intestacy laws in Australia.

Kate and Eleanor underscore that while these discussions can be uncomfortable, they are crucial for ensuring a smoother process and providing a sense of control in the face of uncertainty. Emphasising the moral obligations to dependents and partners, the need for backup executors, and the benefits of joint will-making for couples with differing family dynamics. The episode provides practical guidance on capacity considerations and the importance of early planning to avoid complications later on.

The Leukaemia Foundation strongly recommend that everyone seek their own legal advice when considering their options. We also would like to highlight that advance care directives are available in every state and territory, and if you wish to seek more information, please connect with Advance Care Planning Australia

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 guest Joshua Gourlay, who shares his personal journey of living with blood cancer. Joshua candidly reflects on his experience of processing the diagnosis and the subsequent impact on his life, asserting the mindset that "life is too short" to waste. This led him to make a significant and impulsive decision to relocate to Canberra, which ultimately brought him unexpected happiness and a fresh start.

He provides insights into his hospital stay, describing it as a "forced holiday" where he brought personal items like a gaming console and TV to keep himself occupied. Despite the surreal experience and initial difficulty processing his diagnosis, Joshua found solace in writing, which he had stopped for several years. This led to the creation of his blog, "But What If It's Cancer," which engaged and supported many of his friends and family.

Touching up on Joshua’s professional life as a consultant in the public service, noting his successful reintegration into work post-remission. His reflective blog post from November 2022, "The Phantom," is also discussed, underscoring the misconception that life immediately returns to normal post-cancer and the journey of rebuilding oneself.

In the face of financial insecurities and the emotional strains of a failed marriage, Joshua recounts how the unwavering love and support from his parents helped him through the most challenging post-treatment years.

Joshua opens up about his challenges and triumphs, including his move to Canberra which allowed him to rekindle self-love and meet his new partner. He appreciates the immense support from his family, friends, and the Leukaemia Foundation, highlighting the pivotal role of a supportive community in overcoming cancer. He advises listeners to seek support, accept the changes brought by cancer recovery, and find joy and fulfilment in life despite the challenges.

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 commercialization. Learn more at www.talkinghealthtech.com/podcast/network

In this episode of the Talking Blood Cancer podcast, Maryanne Skarparis is joined by guest Vince O'Donnell to talk about his experiences living with hereditary amyloidosis. Vince shares that he was diagnosed at 59 and has surpassed his prognosis by about seven years, thanks to advancements in treatment options. They discuss the impact of genetic testing in identifying hereditary conditions, the symptoms and diagnosis process, as well as treatment options over the years.

Vince highlights the financial burden and stresses of living with a chronic condition, including the cost of medical appointments and medications. He and his wife made life decisions, such as giving up work and accessing financial support, to sustain themselves during illness, further emphasising the importance of planning to tackle health issues and making decisions to live the best life possible.

Touching up on the significance of peer-to-peer social support in facing challenges related to health, as Vince reflects on his improved outlook and quality of life over the years. Sharing his mantra of "tomorrow will be a better day," Vince offers valuable insights into living life with hope, making proactive treatment decisions, and the importance of acceptance and courage in approaching difficult situations.

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 Kate Arkadieff is joined by Nerys Welch, who shares her deeply personal experience as the caregiver and widow of her husband, Richard, who battled T-cell acute lymphoblastic leukaemia.

Kate sets the tone by acknowledging the sensitive nature of grief and loss, encouraging listeners to approach the episode with compassion towards themselves and to step away if the content becomes too overwhelming. This precaution sets a respectful and understanding atmosphere right from the beginning.

During the conversation, Nerys recounts the tumultuous journey from Richard's diagnosis through his bone marrow transplant to ultimately managing life and parenting solo after his passing. She describes the emotional weight of caregiving, the challenges of watching a loved one suffer, and dealing with the resultant grief that continues to play a role in her daily life. Nerys’ story provides invaluable insights into the struggles faced by families dealing with blood cancer from a caregiver's perspective, highlighting issues such as adjusting to a new normal, the impacts on children, and the importance of seeking support.

Furthermore, Nerys touches on the significance of community and shared experiences, emphasising how connecting with others through online support groups helped her navigate her grief. This episode not only shares one woman's story but also offers comfort and understanding to others who are living through similar hardships.

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 commercialization. Learn more at www.talkinghealthtech.com/podcast/network.