Podcast: Sam’s Meningioma Story

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.

Listen on the Podcast

Segment 1: Diagnosis and Early Symptoms

  • Sam discussed her diagnosis in June 2013.
  • Describes initial symptoms, including pulsatile unilateral tinnitus, balance problems, and posture issues.
  • The delay in diagnosis and the process leading to medical attention.

Segment 2: Treatment and Challenges

  • Sam’s experience after diagnosis and the removal of one brain tumour.
  • Coping with psychological stress and anxiety.
  • The challenges of living with brain tumours and the need for a second surgery.
  • Discussing the inevitability of future surgeries due to neurofibromatosis type 2.

Segment 3: Coping Mechanisms and Support

  • Sam’s coping mechanisms include talking to friends and seeking counselling.
  • The impact of her diagnosis on her children and managing the genetic aspect of NF2.
  • The importance of connecting with support groups like Meningioma UK and Can You Hear Us.

Segment 4: Naming the Tumors and Fatigue

  • Sam and the host discuss naming tumours as a way to gain a sense of control.
  • They share stories about fatigue and the various ways it manifests.
  • Amusing anecdotes about mixing up words due to brain fog and fatigue.

Segment 5: Living with Uncertainty

  • Sam talks about the challenges of living with uncertainty regarding her health.
  • The difficulty of making plans and commitments due to potential surgeries.
  • The importance of flexibility and understanding from friends and family.

Segment 6: Medical Monitoring and Knowledge

  • Sam’s experience with MRI scans and the importance of early detection.
  • Discussing the NF2 clinic and the need for better information and understanding.
  • The varying ways people cope with and process medical information.

Segment 7: Hospital Memories and Support

  • Sam reflects on her time in the hospital and the exceptional care she received.
  • Stories of kindness from healthcare professionals and friends.
  • The significance of support networks during challenging times.

Segment 8: Preparing for the Future

  • Sam’s thoughts on her upcoming surgery and the lessons learned from her previous experience.
  • How her determination and positive attitude have helped her through difficult times.
  • The importance of understanding and accepting one’s condition.

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