Patients & Survivors: Your Brain Tumor Journey

Explore patient & survivor resources and stories.

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Patient Stories

Explore inspiring journeys of resilience and hope through our Patient Stories

Episode 18 of the Rare Enough Podcast: Featuring Luke Anderson

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 Role of OT in the Rehabilitation of Brain Tumor Patients

Occupational therapy (OT) helps brain tumor patients do the tasks they need or want to do to get through the day when faced with physical, cognitive, or emotional changes. OT takes a big-picture view of …

Problem-Solving Strategies for Brain Tumor Patients

In some cases, brain tumors can affect a person’s problem-solving abilities. This can happen due to the tumor itself or as a result of the effects of standard treatments such as chemotherapy or radiation. Rehabilitation …

Seizure Preparedness and Management

Seizures and Brain Tumors Seizures are a common concern for many brain tumor patients due to changes in brain function. Seizures can result from the disruption of normal brain activity caused by brain tumors. Knowing …

What is the Karnofsky Performance Status (KPS) Scale?

The Karnofsky Performance Status (KPS) scale is a tool that helps doctors measure a person’s physical abilities, independence level, and how well a person can manage daily activities when dealing with a chronic illness, particularly …

Planning and Organization Strategies for Brain Tumor Patients

Why Planning and Organization Matter After brain tumor treatment, changes in the brain can affect important thinking skills that help with planning, organizing, and starting tasks. These skills are necessary for managing day-to-day activities like …

Navigating the Role of Caregiving

Caring for someone with a brain tumor is a significant responsibility that requires both the caregiver and the care recipient to navigate numerous changes together. Having the right tools and support is essential for caregivers …

Memory and Attention Strategies for Brain Tumor Patients

Brain tumor patients often face difficulties with memory and attention. The tumor itself can cause these challenges, as well as treatments like chemotherapy and radiation. Patients may struggle to remember daily tasks, stay organized, and focus on conversations or activities. Fortunately, some strategies and tools can help manage difficulties with memory and attention, making day-to-day life easier. How Memory and Attention Impact Daily Life Memory and attention are important thinking skills for daily tasks. Memory is the ability to store and recall information, which we use for tasks like remembering names, recalling directions, or following a recipe. For example, when …

The Importance of Staying Active After a Brain Tumor

Staying physically active after a brain tumor diagnosis can be beneficial for your overall health. Regular exercise helps strengthen your heart, improve/maintain your mood, and prevent stiffness and weakness in your joints and muscles. Practicing …

Mindfulness Tools for Brain Tumor Survivors and Caregivers

Mindfulness has gained significant attention in recent years as a valuable tool for emotional well-being, especially in healthcare settings. It involves paying attention to the present moment, with an attitude of openness and acceptance, helping …

Patient Stories

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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

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

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.