Advocacy, Education, and Connection For the Brain Tumor Community

Advice, stories, and resources, in collaboration with doctors, patients, and caregivers for every step of the brain tumor journey. 

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Patient Stories

Explore inspiring journeys of resilience and hope through our Patient Stories

November 2024 Ambassador Spotlight – Erin Gaffney

Written by Erin Gaffney I’ve been fortunate to serve as an ambassador for several organizations.  I joined the Executive Leadership Committee for the American Heart Association to raise awareness for heart disease.  I participated in …

Episode 17 of the Rare Enough Podcast: Featuring Brian & Emily Godawski

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Embracing My New Patient Identity

The thought of embracing my new identity as a brain tumor patient was a daunting journey filled with uncertainties and challenges. However, it was essential to remember that my identity is not solely defined by my medical condition. While it undoubtedly plays a significant role in my life, it doesn’t overshadow the other aspects of who I am as a person. Here are some steps that helped me navigate and embrace my new identity:Acknowledge Your Feelings: It’s okay to feel a range of emotions, including fear, anger, sadness, and even relief.

The Importance of Prioritizing Yourself as a Person Over Your Identity as a Patient

In the journey of facing a medical condition, it’s easy to let the label of “patient” overshadow our sense of self. Whether it’s a chronic illness, a sudden diagnosis, or a long-term treatment plan, the identity of being a patient can consume our thoughts and actions. However, it’s crucial to recognize the importance of prioritizing ourselves as individuals over our identity as patients. Here’s why:Preserving Self-Worth: Being a patient doesn’t define your worth as a person. It’s essential to maintain a healthy sense of self-worth independent of your medical condition. Remembering your talents, strengths, and qualities can help you maintain …

Regaining a Sense of Self as a Brain Cancer Patient

Being diagnosed with a brain tumor is an overwhelming experience that can turn your world upside down. Alongside the physical challenges, the journey often takes a toll on your emotional and psychological well-being, leaving you feeling disconnected from your sense of self. However, amidst the chaos, it’s crucial to remember that you are more than your illness. Regaining a sense of self is a fundamental part of the healing process, and it’s entirely possible with the right approach. Here are some tips to help brain tumor patients reclaim their identity and find inner strength during this challenging time.Acceptance and Self-Compassion:The …

Nurturing Mental Health: Insights and Strategies from Patients and Caregivers

A brain tumor diagnosis brings forth a mass of challenges, not only physical but also emotional and mental. Managing your mental health becomes a crucial aspect of the journey for both patients and survivors. In …

Coping With Survivor’s Guilt: Navigating Life After Brain Cancer

Surviving brain cancer is a triumph, but it often comes with a complex set of emotions, including survivor’s guilt. This guilt arises from the feeling of being fortunate to have survived while others facing similar circumstances did not. Certain thoughts can take over such as, “Why did I survive while others did not?” and “What makes me special?” Coping with survivor’s guilt can be challenging, but it’s essential for long-term mental and emotional well-being. In this article, we’ll delve into the phenomenon of survivor’s guilt in the context of brain cancer survivors and provide tips to help navigate through it.

Forbes Spotlights Cancer Survivor DJ Stewart

Stewart’s journey shows how he overcame challenges with determination and positivity. His experience demonstrates the strength of resilience in facing illness and offers hope to others in similar situations. Stewart’s story emphasizes the importance of patient empowerment and serves as a beacon of hope for those navigating difficult times. Check out the complete feature from Forbes here!

Collaborative Care Against Brain Cancer

Kansas City beneficiary partners, the University of Kansas Cancer Center and Children’s Mercy, collaborated in efforts to treat a pediatric brain tumor patient.

Caregiver Stories

Gain insight and support from those who have walked the path of caring for a loved one with a brain tumor.

Episode 17 of the Rare Enough Podcast: Featuring Brian & Emily Godawski

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

The Emotional Power of Faith in a Brain Tumor Journey

ney: One Caregiver’s Perspective Written by Chris Childress, brain cancer survivor and caregiver to Daughter Allie Montgomery My prayer life has helped me navigate my own brain tumor journey, but it has also helped me …

Episode 16 of the Rare Enough Podcast: Featuring Kelly & Evie Fisher

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Episode 14 of the Rare Enough Podcast: Featuring Michael & Vanessa Hugo

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Episode 13 of the Rare Enough Podcast: Featuring Colin Gerner, CEO and Co-Founder of StacheStrong

We are thrilled to announce the release of episode 13 of the Rare Enough Podcast, where we have the privilege of hosting Colin Gerner, the CEO and co-founder of StacheStrong. This episode is set to …

Embracing My New Caregiver Identity

Becoming a caregiver for my husband with brain cancer was a transformative experience that I never imagined I would have to go through. It challenged me emotionally, physically, and mentally, pushing me to discover strengths …

Nurturing Mental Health: Insights and Strategies from Patients and Caregivers

A brain tumor diagnosis brings forth a mass of challenges, not only physical but also emotional and mental. Managing your mental health becomes a crucial aspect of the journey for both patients and survivors. In …

Navigating Caregiving and Regaining a Sense of Self

The journey of caregiving for a loved one battling brain cancer is a deep and frequently life-changing experience. As caregivers, we often find ourselves immersed in the role, dedicating our time, energy, and emotions to support our loved one through this challenging period of life. However, with the demands of caregiving, it’s easy to lose sight of our own identity and needs. In this article, we explore the steps one can take in regaining a sense of self during the tumultuous journey of brain cancer.Acknowledge Your Feelings:Caring for a loved one with brain cancer can elicit a wide range of …

Navigating Relationship Changes as a Caregiver

Caring for a loved one with a brain tumor is a trying experience that extends beyond the patient-caregiver relationship, impacting interactions with spouses, children, friends, and extended family members. Here, we dive into the complex dynamics of caregiving and explore how it effects relationships across different aspects of life. Spousal Relationships Caring for a spouse with a brain tumor often leads to profound changes in the marital relationship:Role Reversal: Caregivers may find themselves assuming roles traditionally held by their spouses, such as managing household finances, making medical decisions, and providing emotional support.

How to Cope with Caregiver Burnout

When a loved one gets a brain tumor diagnosis, someone must step into the crucial role of caregiver. This is a brave step to take, full of its own stresses and challenges, in addition to sharing in much of the stress that the patient is under. And while caregivers are understandably focused on putting the health and well-being of their loved one first, they’re often not prepared for just how hard their own road will be.

Patient & Caregiver Resource Guide

The Rare Enough Podcast is a powerful platform dedicated to sharing inspiring stories of resilience and hope. By highlighting extraordinary individuals who have triumphed over life’s toughest challenges, we can spread awareness, support, and motivation to those who need it most.
Find it on your favorite podcast platform such as Spotify or Apple Music, or listen here!

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