In this Aunty M Brain Tumours Talk Show episode, we speak to Lucy, who shares her Astrocytoma diagnosis, treatment, and recovery in observance of Brain Tumor Awareness Month. 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.

LUCY TALKS ABOUT HER SYMPTOMS, ASTROCYTOMA DIAGNOSIS AND TREATMENT.

SHOWNOTES

Diagnosis Story

• Lucy describes having a seizure at home, leading to her diagnosis. Her son’s quick action to alert her husband and call 911 was critical in getting her the immediate help she needed.
• Waking up in the hospital with no memory of the event, Lucy learns about her brain tumour from her husband and doctors.

Treatment Journey

• Lucy underwent surgery in June, followed by radiation in August and six months of oral chemotherapy.
• The challenges of treatment included severe fatigue, hair loss primarily from radiation, and the struggle with the physical and emotional side effects of chemotherapy.

Experiencing Side Effects

• The fatigue was overwhelming, significantly impacting Lucy’s daily life.
• Radiation was tougher on her than chemotherapy, causing significant weight loss and appetite issues.

Surgery Details

• Lucy had a craniotomy with considerations for awake surgery, ultimately opting for general anaesthesia.
• The surgery was deemed the easiest part of her treatment, with a recovery that included managing a scar and staples.

Medications and Reactions

• Lucy discusses her seizure medication, Keppra, noting its effectiveness despite challenging side effects, including mood changes.
• She also mentions the temporary use of steroids post-surgery, familiar to her due to her asthma, but with known side effects like increased appetite and energy.

Community Support and Research

• Turning to online communities and avoiding overwhelming research, Lucy found solace in shared stories and factual information, particularly appreciating the long-term survival stories.

Reflections on Recovery and Adjustments

• Nearly back to normal, Lucy acknowledges the ongoing adjustments and challenges, including cognitive changes and physical strength.

Stages of Grief and Acceptance

• Lucy shares her process of grieving for the life she thought she’d have, emphasizing the importance of allowing oneself to experience these emotions.

Media Representation of Brain Tumors

• Lucy highlights the importance of more accurate and hopeful representations when discussing the often negative portrayal of brain tumours in media.

Coping Mechanisms and Support Systems

• Staying busy and connecting with others who understand has been crucial for Lucy’s mental health and recovery.

 

Watch via YOUTUBE HERE