Category: JPH Guide

Caregiver

E: Finding Support Groups

Emotional

Emotional - Building confidence

Emotional: Tools for the emotional journey

JPH Guide

Emotional Outlet: Digital Support

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

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E: Embracing new patient identity

Emotional

Emotional - Getting from good to great

Emotional: Patient - Loss of Self

JPH Guide

Patient

Embracing My New Patient Identity

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

E: Caregiver - Watch and wait feelings

Emotional

Emotional - What Ifs

Emotional: Caregiver - Emotions Felt

JPH Guide

Coping With The "What Ifs" and “Watch and Wait” Feelings Associated With Brain Cancer

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

E: Caregiver - Navigating anger & fear

Emotional

Emotional - Building confidence

Emotional: Caregiver - Emotions Felt

JPH Guide

Navigating Through the Emotions That Come with a Brain Cancer Diagnosis

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

Caregiver

E: Caregiver - Balancing care and self

Emotional

Emotional - Lack of Resources

Emotional: Caregiver - Loss of Self

Navigating Caregiving and Regaining a Sense of Self

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

E: Caregiver - Overcoming anxiety

Emotional

Emotional - Lack of Resources

Emotional: Caregiver - Emotions Felt

JPH Guide

Believing the Diagnosis and Overcoming Anxiety

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

E: Balancing hope with reality

Emotional

Emotional - Getting from good to great

Emotional: Maintaining Hope

JPH Guide

Balancing Hope With Reality

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

JPH Guide

R: Sharing the diagnosis

Relational

Relational - Finding Rhythm

Relational: Struggling to sharing the journey

Sharing the News With Your Co-Workers

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

JPH Guide

R: Sharing with nosey people and intrusive acquaintances

Relational

Relational - Finding Rhythm

Relational: Struggling to sharing the journey

Sharing Information with Nosey People and Intrusive Aquaintances

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

Caregiver

JPH Guide

R: Caregiver - Having outlets and asking for help

Relational

Relational - Finding Rhythm

Relational: Approach to sharing the journey

Telling Your Close Friends and Family

Receiving a brain tumor diagnosis is a difficult moment for you or your loved one. Then, telling your close friends and family can be overwhelming and just as scary. Finding the right way to communicate such information is a personal choice, and each individual may have their own approach. In this article, we explore different methods, including calling/texting, in-person conversations, and the unique dynamics surrounding recurrences.

Calling/Texting:
Communicating through calls or text messages allows for immediate contact and provides an opportunity to express thoughts and emotions. It’s a direct method that many find effective, especially when seeking immediate support or sharing updates.

In Person:
Opting for face-to-face conversations is a more personal approach. Being physically present allows for nuanced communication and provides an opportunity to gauge the emotional responses of those receiving the news. It fosters a deeper connection during challenging times.

Blackout:
Some individuals temporarily distance themselves from social interactions after a diagnosis like this. This “blackout” period allows for personal reflection and preparation before engaging in conversations about the diagnosis. It’s essential to communicate this choice with loved ones to manage expectations.

Recurrences:
Dealing with recurrent diagnoses adds another layer of complexity to sharing the news. Over time, some individuals develop a “system” for communication. Allie M, a patient, shares her experience of having designated family members share updates after the initial calls with immediate family. This approach allows for efficient communication without the emotional burden of repeating the same information.

Allie M, an Ependymoma Patient, reflects on her system, My husband and I talk to our parents and his siblings and our grandparents. Then, they take it from there. They each have people they reach out to. It’s the one-time gossiping that works in our favor! This system came to be naturally over time. People just took their role. I learned there’s nothing wrong with asking someone to tell someone else. Sometimes, it’s just too hard to say over and over again.”

Sharing a brain tumor diagnosis is a deeply personal journey. Whether through direct calls, in-person conversations, a brief “blackout” period, or a structured system for recurrences, the choice of how to communicate rests with the individual. Understanding that each person may have a unique preference helps foster supportive environments that cater to the needs of those navigating a brain tumor diagnosis.

Read More

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