Audience Categories: Patient Questionnaire

Caregiver Questionnaire

JPH Guide

M: Diffuse Intrinsic Pontine Glioma (DIPG)

Medical

Medical: DIPG

Medical: Tumor Types

My DIPG Navigator and the Chad Tough Foundation

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

JPH Guide

Medical

Medical - Exploring Options

Medical: Alternate Treatments (Outside SOC)

Understanding Proton Therapy

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

JPH Guide

Medical

Medical - Exploring Options

Medical: Alternate Treatments (Outside SOC)

Understanding the Gamma Knife Procedure

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

E: Caregiver - Navigating anger & fear

Emotional

Emotional - Lack of Resources

Emotional: Maintaining Hope

JPH Guide

Holding On To Hope

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

E: Prioritizing yourself as a person over identity as a patient

Emotional

Emotional - Lack of Resources

Emotional: Patient - Loss of Self

JPH Guide

Regaining a Sense of Self as a Brain Cancer Patient

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

E: Being in Nature, Gardening, and Hiking

Emotional

Emotional - Building confidence

Emotional: Tools for the emotional journey

JPH Guide

Emotional Outlet: Physical Activity

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

E: Finding a therapist/counselor

Emotional

Emotional - Building confidence

Emotional: Tools for the emotional journey

JPH Guide

Finding A Therapist and Psychiatrist

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

Caregiver Stories (Homepage)

E: Mental Health

Emotional

Emotional - Building confidence

Emotional: Mental State During the Journey

Nurturing Mental Health: Insights and Strategies from Patients and Caregivers

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

Caregiver Questionnaire

E: Finding Support Groups

Emotional

Emotional - Building confidence

Emotional: Tools for the emotional journey

JPH Guide

Emotional Outlet: Digital Support

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

E: Embracing new patient identity

Emotional

Emotional - Getting from good to great

Emotional: Patient - Loss of Self

JPH Guide

Patient Questionnaire

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. Acknowledge these feelings and allow yourself to experience them without judgment. Talking to a therapist or joining a support group can provide a safe space to express and process your emotions.  When I was diagnosed It took me some time to come to terms with the severity of this disease.  Once I was comfortable, I started talking to others about my story and listen to others talk about their journey with brain cancer and it really helped me cope and fight harder. 

Educate Yourself: Knowledge is power. Take the time to learn about your condition, treatment options, and potential outcomes. Understanding what you’re facing can help alleviate some of the fear and uncertainty surrounding your diagnosis.

Seek Support: Surround yourself with a supportive network of friends, family, and healthcare professionals who can offer emotional support, practical assistance, and guidance throughout your journey. Don’t hesitate to lean on them when you need help or encouragement.  My close circle of family and friends saved my mental and emotional health by being that support system I needed. 

Focus on What You Can Control: While you may not have control over your diagnosis, you can control how you respond to it. Focus on taking care of yourself physically, emotionally, and mentally. This may include maintaining a healthy lifestyle, practicing self-care activities, and cultivating a positive mindset.  Every day I would go to the mirror and tell myself, “I am going to beat this.” Even just the smallest thing that I was in control of, helped me have a better mindset every day.                  

Set Realistic Goals: Establishing achievable goals can give you a sense of purpose and direction. These goals can be related to your treatment, recovery, or personal interests and hobbies. Celebrate your achievements, no matter how small they may seem.  I would tell myself that I was going to make it to Halloween, then Halloween turned into Thanksgiving, then Christmas, and so on.  Each yearly milestone that I made it too, was a victory that I celebrated. 

Stay Connected to Your Identity: Your identity extends beyond your diagnosis. Don’t lose sight of the things that bring you joy and fulfillment in life, whether it’s spending time with loved ones, pursuing hobbies, or engaging in meaningful activities. Stay connected to these aspects of your identity to maintain a sense of normalcy and continuity amidst the changes.  During treatment I still tried my hardest to continue doing the things I loved most.  Spending time with friends and family, skateboarding, riding my motorcycle, and frequenting my favorite coffee shop with my wife every Sunday.  It was important for me to still enjoy my life. 

Be Patient with Yourself: Healing takes time, both physically and emotionally. Be patient with yourself as you navigate this journey. Give yourself permission to grieve, to rest, and to ask for help when you need it. Remember that it’s okay not to have all the answers and to take things one step at a time.

Embracing your new identity as a brain tumor patient is a process that unfolds over time. By acknowledging your feelings, seeking support, staying connected to your identity, and practicing self-care, you can navigate this journey with resilience and strength. Remember that you are more than your diagnosis, and your identity is defined by the sum of your experiences, strengths, and aspirations.

Read More

1 2 3 4 5 6 7 8 9 10 11 12 13 14