In this heartfelt episode of Aunty M Brain Tumours Talk Show, we talk with Nicole, a courageous woman who opens up about her journey with an Astrocytoma, a type of brain tumour, from diagnosis to the emotional and physical challenges she’s faced. Just before her life changed, Nicole had just married, was thriving in her dream job, and was in the best shape of her life. She shares her story from her initial seizure through the wakeful and intense moments of her brain surgery to her participation in a clinical drug trial. Nicole’s resilience and spirit shine through as she talks candidly about her seizures, treatment choices, and the personal challenges around her diagnosis.
Nicole’s Astrocytoma Story
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Life Before Nicole’s Astrocytoma
Nicole recalls how she was living her dream life—newly married and loving her career. But in February 2020, everything changed when she collapsed at the gym due to a seizure, marking the start of her journey with a brain tumour diagnosis.
The Tumour and Second Opinions
Her initial relief at hearing her tumour was benign was soon overshadowed by a second opinion, which revealed it was not benign and would require an awake craniotomy to avoid paralysis. Nicole takes us through the surreal experience of undergoing brain surgery while awake and the surprising moments that came with it.
The Clinical Trial and Hope for Recovery
One year after her surgery, Nicole was eligible for a clinical trial. Although she initially received the placebo, once she switched to the active drug, her tumour shrank significantly, providing hope and underscoring the critical timing of her diagnosis.
Seizures and Finding the Right Treatment Balance
Nicole shares the frustration of experiencing breakthrough seizures despite being on medication and the trial and error involved in finding the right combination. After multiple adjustments, she’s found stability with a mix of three medications.
Family Planning and Facing Hard Decisions
One of the most challenging parts of Nicole’s journey has been the difficult decision not to carry her own children despite her and her husband’s dream of starting a family. Nicole opens up about the conflicting advice she received from doctors and how she eventually chose surrogacy as the safest option for her and her future children.
Mental Health and the Value of Therapy
Counseling at Duke’s Brain Tumor Center has been invaluable for Nicole. She shares how therapy has provided support, helped her process her experience, and encouraged others on a similar path to seek help.
Advice for Others and Gratitude for Family
Nicole encourages those with similar diagnoses, sharing how listening to podcasts has helped her feel connected to others who understand. She also expresses deep gratitude for her family, particularly her husband, Pat, who has been a constant source of love and support.
Key Takeaways:
- Nicole’s story highlights the importance of second opinions and trusting experienced healthcare professionals.
- Her participation in a clinical trial has given her access to potentially life-changing treatments.
- Emotional support and therapy have been crucial in helping Nicole process her journey and cope with setbacks.
- Her husband, family, and the Duke medical team have provided a vital network of support that has contributed to her resilience.
Thank you for listening!
If Nicole’s story inspires you, consider sharing this episode with others who may find comfort or strength in her journey. We’re committed to raising awareness about brain tumours and helping listeners feel less alone.
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