Aunty M Brain Tumours Talk Show
By Claire Bullimore
Aunty M Brain Tumours Talk ShowJul 02, 2019
Johnathan's Glioblastoma Multiforme Story
In this episode of Aunty M Brain Tumours Talk Show, Johnathan shares his brain tumour story. Johnathan experienced a sudden and severe onset of symptoms the day before Thanksgiving, leading to an unexpected diagnosis of glioblastoma multiforme (GBM).
Johnathan recalls the ordinary start with what he assumed were hereditary migraines. Still, he details how things took a severe turn when he could no longer comprehend text and experienced severe dizziness and vertigo, prompting an emergency room visit. This visit quickly escalated as medical tests revealed a mass on his brain, leading to urgent referrals and treatments that upended his life.
Despite the shocking and rapid progression of his condition, Johnathan talks about the ongoing treatment, including surgery and the use of an Optune device, and how these have impacted his daily life. He also touches on the emotional and psychological effects of his diagnosis, both on himself and his family.
Throughout the conversation, Johnathan shares insights into his coping mechanisms, including starting a blog to share his experiences and connect with others in similar situations. He emphasizes the importance of community support, positive thinking, and adapting to a "new normal."
Visit Johnathan's blog and connect with him here www.johnvsgbm.com
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Pamela's Meningioma Story
Welcome to Day 29 of Brain Tumour Awareness Month on Aunty M Brain Tumours Talk Show. Today, Pamela shares her poignant journey from diagnosis to recovery and beyond. Pamela introduces us to Brain Tumour Ireland, the sole charity in Ireland dedicated to supporting individuals and families affected by brain tumours. Unfunded by the government, this small charity plays a big role in the community, from raising awareness to providing support and information. Pamela shares how the charity has been a pillar of support, offering resources, connections, and hope during her journey.
Find out more:
Find Pamela and Her Music on:
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Laura's Glioblastoma Multiforme Story
Welcome to Day 28 of Brain Tumour Awareness Month on Aunty M Brain Tumours Talk Show. In today’s heartfelt episode, we are joined by Laura. Laura shares her intense and emotional journey with a brain tumour, from the first symptoms during pregnancy to her current battles with the disease. Her story is a tale of personal struggle, a beacon of hope, and the importance of awareness.
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My Granddaughter's Optic Pathway Glioma Story
Hayley Conroy shares her granddaughter Lily's compelling story in this episode of Aunty M Brain Tumour's Talk Show. Lily's early life hinted at no challenges until her family started noticing unsettling signs a few weeks post-birth. Despite being a happy and active baby, Lily struggled with feeding issues and an unexplainable high-pitched scream, leading to a misdiagnosis of lactose intolerance. This episode delves into the trials and tribulations faced by Lily and her family, from initial feeding difficulties to a shocking diagnosis of an Optic Pathway Glioma, a type of Brain Tumour coupled with Diencephalic syndrome.
Contact Hayley HERE
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Brenda's Meningioma Story
In this episode of Aunty M Brain Tumour's Talk Show, Brenda shares her journey of being diagnosed with a brain tumour and undergoing surgery and radiation treatment. She talks about the strange symptoms leading up to the diagnosis, including memory lapses and severe headaches. Brenda's resilience shines as she discusses her recovery and a newfound appreciation for life. She also emphasizes the importance of seeking multiple medical opinions and cherishing the support of loved ones. Through her advocacy work with the National Brain Tumor Society, Brenda strives to raise awareness and provide hope for others facing similar challenges.
Find Brenda on her website: HERE
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Matthew's Astrocytoma Story
In this podcast episode of Aunty M Brain Tumours Talk Show, we speak to Matthew. Matthew recalls an ordinary Thursday in October 2023, playing football and feeling fit, only to experience what he describes as being struck by lightning 60 minutes into the game. This moment marked the beginning of a completely heart-wrenching journey for him, leading to the diagnosis of a brain tumour.
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Mel's Pilocytic Astrocytoma Story
In this podcast episode of Aunty M Brain Tumours Talk Show, Mel Kelly shares her journey from the initial misdiagnoses of persistent headaches and vision loss to her brain tumour diagnosis on December 19, 2022. Despite the shock and challenges, including a crucial surgery just before Christmas and the struggle to regain her driving license, Mel's story is one of encouragement for awareness.
Post-recovery, Mel actively participates in fundraising and awareness campaigns, notably organizing a 12-mile walk and raising funds for The Brain Tumour Charities. She also supports "It's a No Brainer," advocating for a national brain tumour strategy. Mel's experience highlights the importance of support, awareness, and advocacy in battling brain tumours.
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Kimberley's Astrocytoma Story
In this podcast episode of Aunty M Brain Tumours Talk Show, Kimberley talks about her Astrocytoma diagnosis and the support she has found in brain tumour charities. Especially in The Brain Tumour Charity and Brain Tumour Support.
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Stefania's Meningioma Story
In this podcast episode of Aunty M Brain Tumours Talk Show, Stefania shares her meningioma story from the first symptoms to the diagnosis, treatment, and ongoing challenges she faces. She highlights the crucial role of support systems like the charity Brain Tumor Support.
Join the urgent SOS Appeal.
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Yaron's Glioblastoma Multiforme Story
In this podcast episode of Aunty M Brain Tumours Talk Show, Yaron shares his extraordinary journey of facing a Glioblastoma Multiforme diagnosis at 29. Yaron's story is not just about survival; it's a testament to the power of medical intervention. Yaron recounts the subtle symptoms that initially appeared in 2003, including frequent headaches and a peculiar incident of temporary leg weakness. Despite these signs, Yaron was deeply engrossed in his work, notably contributing to the sequencing of the SARS genome. His life took a sharp turn when he experienced a grand mal seizure, leading to his diagnosis with a Glioblastoma Multiforme intertwined with oligodendroglioma elements.
Website:
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Paris' Pituitary Tumour Story
In this podcast episode of Aunty M Brain Tumours Talk Show, Paris Dancy shares his battle with a pituitary tumour. Starting in 2013, Paris began experiencing symptoms like weight gain and severe headaches, which he initially attributed to stress from his demanding job as an investigator. He was finally diagnosed with a pituitary tumour. The diagnosis led to surgeries, including gamma knife radiation. Post-surgery, he faced a new challenge with Cushing's syndrome, likely induced by the combination of the tumour and steroid treatments. Opting against hormone replacement therapy in 2018, Paris embraced a natural route to recovery, leveraging his personal experience to help others facing similar health challenges.
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John's Glioblastoma Story (Told by his Family)
In this podcast episode of Aunty M Brain Tumours Talk Show, Charlotte and her mother, Alison, share their deeply personal journey following the loss of John, Charlotte's father and Alison's husband, to a brain tumour. Their story is a tribute to John and an enlightening discussion on the importance of brain tumour awareness.
Find John's Crew On Facebook
Just Giving Page - Donate Here
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Susan's Acoustic Neuroma Story
In this podcast, Susan Hitchmough discusses her journey of being diagnosed with an Acoustic Neuroma in 2021. She talks about her initial symptoms, diagnosis challenges during COVID-19, treatment, and lingering side effects.
Susan shares her recovery story and involvement in The Beyond Recovery Project, a non-profit community supporting brain tumour survivors. She encourages listeners to visit the project's website for support or involvement.
Inspiring and Empowering Brain Tumour SurvivorsThe Beyond Recovery Project
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Brian and Emma's Oligodendroglioma Story
In today's Aunty M Brain Tumours Talk Show episode, we speak to Brain and his wife, Emma. Brian was diagnosed with Oligodendroglioma in 2017; they talk about the process of surgery, radiotherapy, and chemotherapy and the ensuing challenges, such as memory issues, fatigue, and migraines. They emphasize the couple's engagement with Brain Tumour Research communities and charity initiatives, showcasing the power of resilience, support networks, and the impact of living with a brain tumour.
Find Emma's Fundraising Page: Fundraising Page
Find out more about Walk of Hope
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Rudy's Diffuse Astrocytoma Story
In this Aunty M Brain Tumour’s Talk Show episode, we have guest Rudy Fischmann. He discusses his brain tumour journey. He was diagnosed with a Grade 2 Diffuse Astrocytoma in 2018, which led to a Grade 3 Astrocytoma. Despite facing numerous challenges, including surgeries, radiotherapy, chemotherapy and insurance hurdles, Rudy maintains a positive outlook. He emphasizes the importance of physical activity, adapting to new circumstances, and not letting the diagnosis define one’s identity. Rudy also shares his project, a Cancer-Themed Rock Opera aimed at raising funds for Teen Cancer America and the Teenage Cancer Trust. He invites others to join him in this creative endeavour. Through his story and projects, Rudy inspires others to remain proactive and hopeful, regardless of the hurdles they face.
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Grace's Pilocytic Astrocytoma Story
In this inspiring episode of the Aunty M Brain Tumours Talk Show, Grace shares her incredible journey of overcoming a Pilocytic Astrocytoma, shedding light on the importance of Brain Tumour Awareness Month. From unusual symptoms to diagnosis, treatment, and life after recovery, Grace's story is a testament to resilience, self-advocacy's importance, and community support's power. Find Grace here:
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Henna's Brain Tumour Story
Henna shares her brain tumour story in this impactful episode of the Aunty M Brain Tumours Talk Show. She bravely shares her journey with a brain tumour. As part of Brain Tumour Awareness Month, Henna's story underscores the importance of symptom awareness, the complexities of diagnosis, and the challenges of navigating the healthcare system, especially during the COVID-19 pandemic.
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Natalie's Acoustic Neuroma Story
Today, we have the incredible Natalie Welch sharing her brain tumour story. Natalie was diagnosed with an acoustic neuroma in 2009. She shares her diagnosis, treatment, and recovery journey.
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Rebecca's Brain Tumour Story
In this episode, we listen to Rebecca's amazing journey through health challenges like Lyme disease, chronic fatigue, brain tumours, and recovering from a stroke. Her story starts with an illness in 2013 that led to misdiagnosis and a critical seizure that revealed a brain tumour. Despite severe setbacks, including speech and motor skill difficulties and dealing with vertigo, Rebecca's tale is filled with determination and hope. She talks about the immense support she received, her advocacy for better healthcare, and her part in the book "Birthing the Butterfly: A Woman of Wisdom," showing the strength found in hope and community support.
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Simona's Cavernoma Story
In this Aunty M Brain Tumours Talk Show episode, we speak to Simona Stankovska about her fight against Cavanoma—a brain lesion—misdiagnosed due to seemingly ordinary symptoms. Her journey from misdiagnosis to undergoing critical brain surgery highlights the healthcare challenges and personal upheaval a Cavanoma diagnosis brings, including paralysis and the arduous path to recovery.
Simona's experience, which led to the founding of 'The Cavanoma Society,' showcases her resilience and dedication to supporting others in similar situations.
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Molly's Astrocytoma Story
In this Aunty M Brain Tumours Talk Show episode, we speak to Molly; she shares her diagnosis, treatment and recovery. Molly was diagnosed with an astrocytoma; her story unfolds from a serendipitous trip to Thorpe Park, where the G-force from roller coasters inadvertently led to the discovery of her tumour to the challenging path of diagnosis, surgeries, and recovery. From a series of misdiagnoses, including celiac testing and dismissals of her symptoms, to the eventual lifesaving surgeries and treatments she underwent, Molly's tale is one of hope and the power of medical intervention at critical moments. Her experiences highlight the importance of awareness, early detection, and the support of loved ones in facing such daunting challenges.
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Ashleigh Hunter: Me and My Dad
In this Aunty M Brain Tumours Talk Show episode, we speak to Ashleigh, about coping with her father's long battle with cancer, which ultimately led to a devastating diagnosis of brain cancer. Ashleigh shares the emotional rollercoaster of her father's initial diagnosis of thyroid cancer, the subsequent spread to his lungs, and the final discovery of brain tumours after he started exhibiting symptoms like severe headaches, memory issues, and mood swings. Despite the challenges, Ashleigh talks about the resilience and strength her father demonstrated, his desire to maintain his independence, and how these experiences influenced her path of grief and healing.
Links Mentions:
Ashleigh Hunter - Website
Buy A Copy Of 'A Different Day' - Paperback
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Lucy's Astrocytoma Story
In this Aunty M Brain Tumours Talk Show episode, we speak to Lucy, who shares her brain tumour diagnosis, treatment, and recovery. Lucy recounts the moment of having a seizure at home, leading to the discovery of a mass in her brain, and walks us through the subsequent steps of her medical journey, including surgery, radiation, and chemotherapy. Despite the challenges, including fatigue, hair loss, and the emotional toll of facing a life-altering diagnosis, Lucy discusses the impacts of her treatment on her daily life, her experiences with medications, and the support she's found in online communities.
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Stephanie's Mother was Diagnosed With A Brain Tumour
In this episode of the Aunty M Brain Tumours Talk Show, we speak to, Stephanie, who shares the impact of brain tumours by sharing Stephanie's experience with her mother's diagnosis and treatment. The story begins with Stephanie's early realization of her mother's illness, leading to a diagnosis of a brain tumour. This episode explores the emotional and physical challenges faced by Stephanie's family, the changes in dynamics at home, and the long-term effects on Stephanie's mental health and personal development. It highlights the importance of support, understanding, and therapy in navigating the aftermath of a loved one's serious illness. Stephanie's journey through therapy, her struggles with anxiety, and her path to resilience emphasize the critical need for awareness, support, and research in the fight against brain tumours.
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Kiera's Medulloblastoma and Posterior Fossa Syndrome Story
In this episode, we hear the inspiring story of Kiera Mitchell, who was diagnosed with Medulloblastoma at 19. Kiera recounts her initial symptoms, the shock of her diagnosis, and the gruelling journey through treatment, including a 15-hour craniotomy and challenging chemotherapy. Despite facing physical and emotional hurdles, including partial paralysis and depression, Kiera's resilience shines through.
She shares her rehabilitation journey, the support from her mother and community, and how she found solace in makeup and fitness. Kiera's story is a testament to the power of perseverance, the importance of support, and the unyielding spirit of a young woman determined to reclaim her life.
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Jamie's Astrocytoma Story
In this Aunty M Brain Tumours Talk Show episode, we speak to Jamie, an Astrocytoma warrior. This episode highlights the challenges faced by those living with Astrocytoma and sheds light on the advancements in medical treatments and the importance of community support. Key Takeaways: - The importance of awareness and research funding for brain tumours. - The value of a strong support system and community resources. - The critical role of second opinions and staying informed about treatment options. - The advancements in medical technology that offer hope to those diagnosed with brain tumours. Find Aunty M Brain Tumours online:
Holly's Central Neurocytoma Story
In this episode of the Aunty M Brain Tumours Talk Show, we're diving deep into the heart of Brain Tumour Awareness Month. Our mission? To shine a spotlight on a critical issue that often flies under the radar, despite its significant impact. In today’s episode, we're speaking to Holly; she shares her symptoms, treatments and recovery. Holly was diagnosed with a central neurocytoma amid the COVID-19 pandemic. She wants people with the same tumour to not feel so alone.
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David's Brain Tumour Story
In this episode of Aunty M Brain Tumour's Talk Show, we welcome David, who will discuss his brain tumour symptoms, diagnosis, treatment, and recovery. David's story is one of determination and medical breakthroughs.
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Kate's Pituitary Tumour and Acromegaly Story
In this episode on the Aunty M Brain Tumours Talk Show, we speak to Kate Beddow. She opens up about her life-changing journey with a Pituitary Tumour and Acromegaly. From the confusion of initial symptoms to the shock of diagnosis and the miraculous joy of motherhood against all odds, Kate's story is a positive story that will give others hope.
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Maxine's Meningioma Story
In this episode of Aunty M Brain Tumour's Talk Show, we have guest Maxine. We talk about her doctors mistaking her initial symptoms for perimenopause to undergoing a full craniotomy to remove a brain tumour. Maxine's story highlights the challenges of diagnosis, the emotional and physical toll of treatment, and the importance of support from healthcare professionals, friends, and family. Through her experience, we explore the significance of raising awareness, the impact of support networks, and Maxine's contributions to 'Brain Tumour Research' fundraising. This episode is a call to action to spread awareness and support research, underscored by Maxine's powerful testimony and message of hope.
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Melinda's Posterior Fossa Meningioma Story
Melinda's life took an unexpected turn when she was diagnosed with a meningioma in her brain's Posterior Fossa, a type of brain tumour. Initially misdiagnosed as migraines, she faced walking difficulties, violent headaches, and blurred vision. Rushed to the hospital, she underwent emergency surgery to address swelling caused by the tumour. Further surgery removed 80% of the tumour.
During her hospital stay, Melinda encountered challenges, including allergic reactions to medications. Nevertheless, her strong faith and the power of prayer provided comfort. After a month, the tumour miraculously reduced in size without further treatment. This experience strengthened her faith and changed her outlook on life, inspiring her to help others and embrace positivity.
Melinda now lives tumour-free, cherishing the lessons learned and valuing each moment. She advocates treating others with kindness, giving back, and forgiving readily. Her journey reminds us to appreciate life's gifts and face adversity with hope and positivity.
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Zach's Brain Tumour Story
In this episode of the Aunty M Brain Tumours Talk Show, Zach Round shares his brain tumour diagnosis. Discovered after a mountain biking accident, Zach talks about his surgeries, complications, and meningitis. Facial reconstruction surgeries and challenges unfold, accompanied by the unwavering support of his family. Zach's passion for mountain biking becomes both distraction and focus during recovery, with insights into coping strategies. The podcast encapsulates Zach's end goal of connecting with survivors, offering inspiration, and instilling hope. The episode concludes with Zach's powerful analogy of facing life's storms, leaving listeners with a message of hope and gratitude for supportive loved ones.
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Garrett's Ganglioglioma Story
In this episode of the Aunty M Brain Tumours Talk Show, we hear from Garrett Miller, who shares his moving story of being diagnosed with a brain tumour as a child. He recounts his early symptoms, like seizures that were initially dismissed as fainting spells, leading to the shocking discovery of a brain tumour after a grand mal seizure. Garrett describes the struggles and fears he faced, including surgeries that resulted in partial paralysis. He talks candidly about the physical and emotional struggles during his recovery, the return of seizures during his college years, and the impact on his work and social life. Despite these hardships, Garrett finds solace in nature and is currently studying forestry and wildlife management. The episode delves into his mental health journey, highlighting the importance of therapy in understanding and coping with the effects of his brain tumour. Garrett expresses gratitude to those who've supported him, including therapists and friends.
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Andy's Brain Tumour Story
In this episode of the Aunty M Brain Tumours Talk Show, we hear from Andy Tudor, who shares his personal battle with a brain tumour. Initially dismissing his symptoms as age-related, Andy's life took a dramatic turn when he was diagnosed with a meningioma. He recounts the challenging period leading to his diagnosis, the impact of waiting for surgery, and the relief steroids brought to his symptoms. Post-surgery, Andy discusses his recovery and also delves into his decision to retire due to fatigue and his subsequent dedication to volunteering. Andy's story is one of inspiration, highlighting the importance of support and community in navigating life with and after a brain tumour.
Links Mentioned:
Brainstrust peer support: HERE
Become a Volunteer for Brainstrust: HERE
Become a volunteer for The Brain Tumour Charity HERE
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Marcus Elwell Brain Tumour Story
In this episode of Aunty M Brain Tumour's Talk Show, in this deeply personal and inspiring episode, Marcus Elwell, father of three, shares his journey through a tumultuous period in 2019, marked by forgetfulness, stress, and the challenges of running a retail business amid the Brexit scenario. The episode delves into his struggles with health, the initial diagnosis of vertigo, and the eventual discovery of a brain tumour. He talks about the importance of habits, routine, and meditation in navigating his life's challenges, including the physical and mental recovery post-surgery. The episode is a profound exploration of resilience, personal growth, and the power of a positive mindset.
“I want not just to survive, I want to thrive” - Marcus Elwell
JustGiving Page: CLICK HERE
Rewiring Couching: CLICK HERE
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Finding Strength in Shared Brain Tumours: Michelle and Karina
In this episode of Aunty M Brain Tumour's Talk Show, we have two guests, Michelle and Karina, who both have optic nerve gliomas, a type of brain tumour. They share their experiences of being diagnosed and their treatment journeys. They emphasize the importance of finding support and not feeling alone in their journey. They also discuss their Instagram page, ONG Awareness, where they raise awareness about optic nerve gliomas and connect with others who share similar diagnoses. Overall, the show highlights the challenges and resilience of individuals facing brain tumours and the importance of support and faith in their journeys. Find Michelle and Karina on Instagram: @ongawareness
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Israr's Clival Meningioma Story
In this episode of Aunty M Brain Tumour's Talk Show, Israr Jan-Parker shares her journey of being diagnosed with a Clevel Meningioma, a rare brain tumour. Initially, her diagnosis was unexpected as she had sought medical attention for chronic back pain. The tumour was affecting critical structures in her brain, causing various health issues. Israr's traumatic life events accelerated the tumour's growth, leading to severe symptoms.
Israr describes her 16-hour surgery to remove the tumour and the challenges she faced during recovery, including visual impairment, balance issues, and hearing problems. She emphasizes the importance of patience and determination in her ongoing journey to regain her independence and strength.
Israr also discusses her efforts to raise awareness and funds for Brain Tumor Research. Despite the hurdles she faces, Israr remains positive and encourages others to share their stories to help those going through similar experiences.
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Coping with Brain Tumours: A Conversation with Sam
The "Aunty M Brain Tumours Talk Show" is an informative and inspiring podcast featuring discussions about brain tumours and the experiences of those affected by them. In this episode, Sam shares her journey with brain tumours, beginning with her diagnosis in June 2013. She initially experienced symptoms like pulsatile unilateral tinnitus, balance problems, odd posture, and back and abdomen pain. Sam went through multiple medical appointments, leading to the discovery of two brain tumours—one in her cerebellum and another in the occipital lobe. The one in her cerebellum was surgically removed, but she continues active monitoring.
Sam discusses the psychological challenges of living with the uncertainty of her condition and the possibility of future surgeries due to her diagnosis of neurofibromatosis type 2. She highlights the importance of a support network, her new partner, friends, and counselling in coping with these challenges. Sam also talks about the impact of fatigue, speech difficulties, and clumsiness on her daily life.
The conversation touches on the significance of some people in naming their tumours, the need for knowledge and control, and the kindness of caregivers during hospital stays. Sam's story exemplifies resilience and the diverse ways individuals cope with life-changing diagnoses.
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Revolutionizing Cancer Treatment: The ChemoSeed Implant
In this Aunty M Brain Tumour’s Talk Show episode, we speak with Dr Christopher McConville, an expert in drug delivery for cancer treatment, who is dedicated to addressing the challenges in brain tumour and pancreatic cancer therapy.
These cancers have seen little improvement in survival rates due to drug delivery issues. McConville's team has developed "ChemoSeed," an implantable drug delivery device, initially using Irinotecan, designed to be placed directly into tumour tissue during surgery.
Their preclinical work is promising, but funding is needed for clinical trials to extend high-grade glioma patient survival without harmful side effects. Public awareness and philanthropic support are crucial for advancing this innovative approach and encouraging young researchers to join the field. Contact: Dr Christopher McConville Email: chrismcconville@extrudedpharmaceuticals.com
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The Power of Petitions in Brain Tumor Research
In this Aunty M Brain Tumours Talk Show episode, we speak to Hugh Adams from the charity Brain Tumour Research. He talks about their goal to reach 100,000 signatures by Wednesday. They already have well over 70,000 signatures but need one last push with your help.
Sign and share the petition HERE
Hugh talks about the power of Petitions and why the public can make history with this last push.
"We are calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028 Sign and share the petition" - Brain Tumour Research
Sign and share the petition HERE "Brain tumours kill more children and adults under the age of 40 than any other cancer yet, since records began in 2002, just 1% of the national spend on cancer research has been allocated to this devastating disease" - Brain Tumour Research Sign and share the petition HERE
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Arvin Koshal: I Had 6 Brain Tumours
In this Aunty M Brain Tumour's Talk Show episode, we have guest Arvin Koshal. He revealed his battle with Diabetes Insipidus and the discovery of 6 tumours on his right optic nerve. His tumour was found by chance after a car accident he was in. Following radiotherapy, he found himself in a new world of new friends, also affected by a brain tumour. Musically talented, inspired by his sister Avena, he began playing the ukulele and supports charitable causes with his music. Associated with the Silver Linings charity, he advocates for brain injury patients. Arvin stresses the value of perseverance and the significance of a support system, thanking his family. Find Arvin here: Website Instagram
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Ellen Yates Reflects on her Acoustic Neuroma Diagnosis and Fundraising
In this Aunty M Brain Tumour's Talk Show episode, we have guest Ellen Yates. Ellen reflects on her acoustic neuroma diagnosis, discussing initial symptoms, and misdiagnoses. She emphasizes the emotional toll, urging self-compassion for those with brain tumours. Ellen's fundraising efforts aim to combat isolation, support survivors, and honour her late friend's memory. Despite emotional challenges, she remains committed to making a positive impact. The interview highlights the hidden nature of brain tumours.
"I crocheted and donated to Brainstrust. I have crocheted the little 'female' BT awareness gnome with blonde coloured hair in memory of my best friend Dawnie who sadly lost her life to brain cancer" - Ellen
Here is Ellen's Fundraising page: Gnomes
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Harmonizing Hope: Brain Tumour Advocacy & Creative Resilience
In this Aunty M Brain Tumour's Talk Show episode, we have guest Rudy Fischmann. He discusses his brain tumour journey. He was diagnosed with a Grade 2 Diffuse Astrocytoma in 2018, which led to a Grade 3 Astrocytoma. Despite facing numerous challenges, including surgeries, radiotherapy, chemotherapy and insurance hurdles, Rudy maintains a positive outlook. He emphasizes the importance of physical activity, adapting to new circumstances, and not letting the diagnosis define one's identity. Rudy also shares his project, a Cancer-Themed Rock Opera aimed at raising funds for Teen Cancer America and the Teenage Cancer Trust. He invites others to join him in this creative endeavour. Through his story and projects, Rudy inspires others to remain proactive and hopeful, regardless of the hurdles they face.
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Carol Vaughan Was In A coma For 12 Days
In this episode of Aunty M's Brain Tumour Talk Show, I interview Carol Vaughn from California, whose life was changed in 2008 by a brain tumour. Carol recounts her diagnosis, treatment, recovery, and the vital importance of finding online support groups. Carol's journey begins with back surgery and triggering long drives, causing nausea and vomiting. Unexplained falls follow, mistaken for unrelated issues. A critical fall leads to a coma and a brain tumour diagnosis. Emerging after days, speech and mobility prove challenging, requiring extensive therapy. Grateful for God and family support, Carol faces further complications from improper surgical outcomes, leading to additional surgeries, skin grafts, and muscle grafts due to infections. Her enduring faith becomes a pillar of strength. In 2010, she endured her first seizure; sadly, because she fell to the floor, it caused her shoulder to dislocate. Seeking understanding, Carol finds solace in online brain tumour groups like 'Aunty M Brain Tumours Chat Room' on Facebook, connecting with a supportive community that empathizes with her journey. The story underscores the significance of shared experiences and support networks, highlighting Carol's resilience and her ability to find comfort in the company of those who understand her struggles.
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The Challenges of Brain Tumours and Understanding Personal Independence Payments (PIP)
Robert and Carol Shaw share their journey dealing with Robert's brain tumour diagnosis and the challenges of the benefits system. Robert's diagnosis, treatment, and the importance of faith and positivity are recounted. They highlight the misunderstandings around brain tumours and the struggles with benefits, particularly Personal Independence Payments (PIP). The system's complexity and lack of understanding are emphasized, alongside stories of financial hardship within the brain tumour community. The interview touches on PIP assessment difficulties, discomfort in seeking support, and their organization, Debt Relief Solutions. They stress the need for help and spotlight their commitment to aiding those facing brain tumours and financial crises in the UK.
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I Bounced Back Very Quickly After My Brain Tumour Surgery
In 2011, Julia's life took a turn when she began experiencing severe dizziness. Misdiagnosed with a sinus infection, her condition worsened, leaving her nauseous and unable to walk straight. After unsuccessful treatments, a private consultation revealed a shocking truth - she had a brain tumour. With two young children, Julia faced the unexpected news. The NHS support she received at Maidstone Hospital was exceptional, guiding her through scans and referrals. Julia discussed her coping strategies during MRI scans, including counting songs to gauge time. Her remarkable recovery and lack of ongoing issues have been a positive outcome. Despite not actively seeking local support groups, Julia acknowledges the importance of sharing experiences and offering hope to others in similar situations.
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My Son asked me to Write a Book about His 10-year Brain Cancer Battle
Welcome back to another inspiring episode of Aunty M Brain Tumours Talk Show! Today, we sit down with Jacky Fredrickson, an extraordinary individual who penned down a book titled "Jon: A True Story of Love, Courage and Faith", chronicling the heart-wrenching journey of her son's battle with brain cancer.
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Overcoming Epilepsy and Seizing Life
The conversation follows Joss Fleming, who began experiencing seizures at the age of 16, initially attributing them to déjà vu. Over time, the seizures escalated, leading to a notable incident during a vacation. Medical evaluations revealed the presence of a Dysembryoplastic neuroepithelial tumour causing epilepsy. After attempting various medications and enduring up to 15 seizures weekly, Joss underwent two surgeries in 2011. The procedures took place at the National Hospital and incorporated advanced imaging techniques, effectively halting the seizures. Despite post-surgery challenges, including swelling, Joss recuperated and enthusiastically embraced life, even participating in daring activities. Regular checkups and MRI scans are now part of Joss's ongoing healthcare routine. Joss encourages others not to let medical conditions hinder their pursuits and highlights the significance of consulting medical experts while chasing their goals.
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The Removal of a Sphenoid Wing Meningioma Left me with Hemiplegia
Welcome back to another inspiring episode of Aunty M Brain Tumours Talk Show! Today, we sit down with the courageous Leander Stones as she shares her remarkable story of battling a brain tumour, where the removal of her Sphenoid Wing Meningioma left her with Hemiplegia. Join us as Leander opens up about her life-changing experience and the strength she found in the face of adversity.
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My Brain Tumour is Pressing on my Optic Nerve
Emma had been experiencing persistent headaches and dizziness for six months. Despite multiple visits to her GP, various medications, and even trying beta-blockers, her condition didn't improve, and the headaches became unbearable. Emma decided to seek private medical care, leading to an MRI that delivered devastating news: she had a brain tumour pressing against her left optic nerve. She would soon be having two brain surgeries and radiotherapy.
After further consultation with a radiologist, Emma was informed that she likely had a meningioma. Unfortunately, complete removal of the tumour was not possible as it was wrapped around her optic nerve. The medical team proposed surgery to remove as much of the tumour as possible, followed by radiotherapy. However, the nature of the tumour meant that she would still lose part of her sight.
To help with the double vision caused by third nerve palsy, Emma consulted an ophthalmologist who designed a special contact lens for her. This lens, with a black backing, allows her to wear it daily and significantly reduces her double vision.
Here she shares her experience.
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