Tag: cancer support

Cancer in High School Series (Part 4): How a High School Can Rally Together to Make a Difference for Classmates

Posted on by Aarushi Gupta

“My school has been so supportive and helpful and I couldn’t be more thankful for that! A friend of mine hosted a swab drive with DKMS and they had a great turnout. I am so grateful for everyone that swabbed [to determine whether they are a stem cell donor match]! The most challenging thing is that nobody, including your closest friends, will ever understand what you’re going through or how you feel but I appreciate the ones that truly try” (McNamara 2017).

There are a few steps you need to take to become the best supporter you can be and contribute to a greater movement at your school to make a positive difference for classmates in your community. Before proceeding with any plans for a specific classmate with cancer, the first and most important step is ensuring that you are honoring their support needs and privacy wishes. Not everyone wants their cancer diagnosis to be public knowledge at school. Always ask first. For more information about how to navigate this difficult time, check out our supporter roadmap.

cancer in high school

Creating a Safe Space

After understanding the classmate’s support and privacy wishes, you can move forward confident that the support you organize aligns with these needs. One of the most important things to create positive change within a school community is providing a safe space for the students to educate themselves through respectful conversation and questions. As noted above, discussing the cancer diagnosis at the discretion of the family and student affected will help the community adjust to the news, become better informed, and become better supporters.

“Establish if and how the family would like information about the student’s diagnosis and treatment to be shared with teachers and the rest of the school community. You might suggest confidentially informing a small team… who will respect the family’s privacy while coordinating care and support for the student and any siblings at the school. It may also be helpful to develop a plan in case students learn about a classmate’s diagnosis from the student or from social media, and need support in managing their reaction” (Cancervic 2018).

cancer in high school

Get your own questions answered

Before you can help contribute to making a difference in your community, you need to ensure you are actively getting your own questions answered and have taken the time to gather your thoughts and fully understand them. As a student, ways you can do personal research and become better adjusted to the news.

  • Making the most of authoritative online resources
  • Talking with trusted friends, family, counselors or advisors about your thoughts and feelings
  • Journaling to write down any questions and how you are feeling

 

Have a trusted point person who communicates with the family about what they feel is best to create this safe space and to what extent of information they want to be shared. As appropriate, schools can use resources to distribute information and help start conversations that will help the community understand the situation and work together to make a difference.

Means to distribute resources can include:

  • The school website
  • A school newsletter
  • An email or physical letter mailed out to students
  • School presentations hosted by trusted faculty or a clinical nurse consultant
  • Advisory sessions
  • Conversation circles within each classroom

Fundraising and Events

Being present and supportive does not require doing big things to make a big difference. However, there are times when classmates are inspired to work together to host a fundraiser or event that will lift the spirits of the classmate with cancer, help their family, or increase general awareness about a cause they feel passionate about.

“We wanted to do something to help raise awareness to women who could easily let small symptoms go unchecked. The climb took a lot of training and mental strength but it was such an adventure and completely worth it to raise the money for Cancer Research UK.“

Coordinate with your school’s leadership team and relevant staff members to host fundraising or awareness events on your campus. It is an excellent way to get the community involved in supporting a cause and, overall, creating positive change. Listed below are potential event ideas your school can participate in. 

Rally Your Support Squad

Support young adults with cancer by throwing a dance party, having a backyard bbq, putting on a volleyball tournament, etc. The possibilities are endless. Whether you want to honor a friend, recognize a survivor, or inspire the community, there are many options, so get creative and be authentic to the person and the cause. Contact us if you are interested in hosting a b-present fundraiser, and we will help you get the party started!

American Cancer Society Relay For Life 

“The Relay For Life movement is dedicated to helping communities attack cancer. Through funds donated, time given, or awareness raised, our communities are teaming up – virtually or in-person – to make a difference. When we rally together in the fight against cancer, we can accomplish anything.”

The Relay For Life event helps “develop leadership and community service by encouraging students to lead and support their peers and teachers and can make a big impact on your campus and your community.”

Support Cancer Awareness Months

There are a variety of national cancer awareness months that improve awareness and support, fund research, and amplify the gaps and work still to be done. Choose a cause you are passionate about and one that feels authentic to your experience and goals. Rally community support by…

  • Hosting a sporting event or another type of event while raising money through concession stands and donations
  • Selling merch with proceeds going directly toward supporting cancer awareness
  • Hosting a 5k run with participants asking friends and family as sponsors to donate per mile or upon completion of the run
  • Start an online or in-person fundraiser

cancer in high school

Planning the Event 

Define the goal

  • Is there a certain patient or family you hope to financially and emotionally support?
  • Is there a certain organization whose mission closely aligns with yours that you would like to organize a fundraiser for?
  • Are you hoping to provide better education to those in your community about a focus topic?

Write out your specific goals so you can clearly communicate them to your audience and those helping you plan the event. Once your campaign focus is identified, you can more clearly visualize what you want the event to accomplish.

Potential cancer awareness campaign focuses include:

  • Providing support for survivors
  • Specific Cancer Awareness
  • Early indicators for cancer

 

Plan the logistics

  • Setting a date. When do you want this event to take place? How long do you want the campaign to last?
  • Finding a location. Where will this event be most suitable? What place will help you gain the most attraction and participation?
  • Talking with the relevant people. Will this event take place on or off your school’s campus? What administrative work needs to be done to host the event? 

Detail all the logistics while monitoring things that may pose as obstacles when the date for the event comes closer. Make sure to talk to relevant administrators to file any necessary paperwork and to make sure your event follows your school’s guidelines.  

 

cancer in high school

Find supporters to help plan and run the event

You can’t do everything on your own or even with a very small group. Appoint volunteers and delegate tasks to make sure progress happens on all fronts. Work toward devising plans to advertise your event. You want to reach the largest audience you can to help achieve the goals you set in the beginning. For advertising, consider some of the following options:

  • Reaching out to local businesses within your community to create “goody bags” you can auction off as part of the event
  • Advertising to not only students at your school but other schools in the area: elementary, middle, and high school, depending on the goals of the event

 

As we continue to find ways we can be the best supporters possible and how to communicate these ways to more people in the community to promote a collective effort, we also need to remember how to give support to supportive classmates and family members during and after treatment. How can we be respectful to those affected by the diagnosis? How can we help support the patient’s close support system while being sensitive to the issue? The next and final segment of the Cancer in High School series will cover how to support the supportive classmate during and after treatment.

Want more?

Sources:
https://www.teenvogue.com/story/dkms-what-its-like-to-have-cancer-in-high-school
https://www.cancervic.org.au/cancer-information/children-teens-and-young-adults/cancer-in-the-school-community/student-has-cancer
https://www.maurerfoundation.org/we-need-your-support/host-a-fundraiser/ 

Forgiveness and Cancer: Letting Go for Healing and Recovery

Posted on by b-present Team

Forgiveness is essential to any relationship, but it can be especially crucial for adolescents and young adults with cancer and their support community. Cancer is a life-changing event that can turn a person’s world upside down, causing immense physical and emotional pain and a whirl of misunderstandings and hurt feelings. It can be challenging to move forward from such a traumatic experience. Forgiveness can be a powerful tool to help young adult cancer patients and survivors heal from the emotional wounds caused by the disease. 


 

What is forgiveness?

Forgiveness is the act of letting go of anger, resentment, and bitterness toward oneself or others. It is not an easy task, but it can be transformative. The person facing cancer may feel guilty or ashamed about their diagnosis and blame themselves for its impact on their relationships. Understanding that cancer is not their fault can help them release feelings of guilt and move forward. Forgiving oneself for the physical and emotional changes caused by cancer, such as hair loss or fertility issues, can also be a crucial step toward healing. 

Additionally, forgiving others for their actions or lack thereof can release the negative energy and emotions that may have been holding one back. Forgiveness will help mend these relationships and allow young adult cancer patients and survivors to move forward with the support of loved ones.

 

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Supporters need forgiveness too.

In addition to the perspective of the cancer patient, it is also important to consider the role of supporters in the forgiveness process. When a loved one is diagnosed with cancer, family members and friends may also experience anger, resentment, and other negative emotions toward the disease or those they feel are responsible for it.

Supporters may struggle with feelings of guilt or regret, questioning whether they could have done something to prevent the cancer. They may also feel anger toward medical professionals, researchers, or society as a whole for not finding a cure or better treatments.

Forgiveness can be just as important for supporters as for cancer patients. Holding onto anger and resentment can strain relationships and cause additional stress and anxiety during an already difficult time. By practicing forgiveness, supporters can let go of negative emotions and focus on providing love, support, and care for their loved one. Supporters can offer encouragement and support as the cancer patient works through the forgiveness process, but it’s not always easy.

 

Here are some tips that can help in the process of forgiveness:

 

  • Acknowledge the hurt: Recognize and acknowledge the hurt that has been caused. This can validate both parties’ feelings and provide a sense of understanding.

 

  • Communicate: Communication is key to forgiveness. Talk openly and honestly about the hurt caused, and listen actively to the other person’s perspective.

 

  • Take responsibility: If you have caused hurt, take responsibility for your actions. This can help to show the other person that you are truly sorry and willing to make amends.

 

  • Practice empathy: Try to put yourself in the other person’s shoes and understand their feelings. This can help to build compassion and understanding.

 

  • Let go: Forgiveness is about letting go of negative emotions and moving forward together. Focus on the present and the future rather than dwelling on the past.

 

Ultimately, forgiveness is a process that can benefit both cancer patients and their supporters. It can strengthen relationships, promote resilience, and lead to a greater sense of peace and acceptance in the face of adversity. By letting go of anger, resentment, and blame, individuals can focus on healing, both physically and emotionally.

 

Learn more about supporting a friend:

Perfecting Communication After a Cancer Diagnosis

Posted on by b-present Team

Cancer is a difficult and life-changing experience that can significantly impact an individual’s mental and emotional well-being. Good communication skills can help build trust, alleviate anxiety, and improve the overall experience of managing cancer. These skills are essential when seeking or offering support after a cancer diagnosis. Without clear communication, problems can arise, expectations can go unmet, feelings can get hurt, and the mental health of all involved can suffer as anxiety, fear, withdrawal, and isolation mount.


 

Active Listening

The first step in practicing good communication is to be an active listener. This means giving your full attention to the person speaking, acknowledging their feelings, and responding in a supportive and empathetic manner.

For example, if a friend is telling you about their cancer diagnosis, listening attentively, validating their feelings, and expressing your support is critical.

Be Honest

Another important aspect of good communication is being honest and transparent. This means being truthful about what you know and what you don’t know and avoiding giving false hope or sugarcoating the situation.

For example, be honest and acknowledge when you don’t know what to say. This is likely new territory for both of you, and it’s okay not to know what to say. You can embrace the silence and use it as quiet time to reflect.

Respect Boundaries

Remember to be respectful of the person’s boundaries and needs. This means being sensitive to their emotional state, mindful of their physical limitations, and respecting their decisions.

For example, if a colleague is undergoing chemotherapy, be mindful of their fatigue and avoid scheduling meetings at times that would be difficult for them.

Avoid poor communication practices

  • Interrupting the person speaking
  • Dismissing their feelings
  • Giving unsolicited advice

For example, if a friend is telling you about their cancer diagnosis and you interrupt them with your own story or dismiss their feelings by saying something like “at least it’s not stage 4,” it can make them feel unsupported and invalidated.

Communication is a two-way street

Good communication is a two-way street and is key to every aspect of the cancer experience, the quality of our connections, and ultimately our experience as a survivor or supporter. Remember to be aware of your own communication style and be open to learning and practicing different techniques to support and help others in the best possible way.

Learn more about supporting a friend:

Social Isolation After a Cancer Diagnosis: How to Be Supportive

Posted on by b-present Team

Adolescents and young adults with cancer face a unique set of challenges, particularly when it comes to isolation. The physical, emotional, and social effects of cancer can make it difficult for them to maintain connections with their peers, leading to feelings of loneliness and isolation. This can be a difficult experience for any young person, but it can be especially challenging for those going through cancer treatment. And the health risks of feeling lonely and isolated are the equivalent of smoking 15 cigarettes a day. We owe it to each other to do what we can to reduce the impact of isolation and help avoid this added health risk. It will improve the quality of life and health outcomes for those in our community touched by cancer.

Social isolation can be felt in many ways

Here are some examples of social isolation that young adults with cancer and their support communities may experience:

  • Physical isolation: The physical isolation that can come with cancer treatment can be especially difficult for adolescents and young adults. They may be unable to attend school or work or miss out on activities they previously enjoyed. This can cause them to feel disconnected from their peers and social networks. Additionally, the physical side effects of treatment can be distressing and make it difficult for them to maintain relationships. 
  • Emotional isolation: Many adolescents and young adults with cancer may feel ashamed or embarrassed about their diagnosis and may be reluctant to share their experiences with others. They may also feel guilty for not being able to participate in activities with their friends, which can lead to feelings of isolation.
  • Social isolation: Adolescents and young adults with cancer may feel socially isolated due to their peers’ lack of understanding of their condition. They may feel left out of social activities and events and struggle to maintain friendships during treatment.


 

Isolation felt by the support community.

The social support network can also feel physically, emotionally, and socially isolated. They may feel helpless and unsure of how to support their loved one undergoing cancer treatment. They usually have to take time off work or school or work longer hours to care for their loved one while still tending to their other responsibilities. Supporters may feel disconnected from their own friends and colleagues, feeling that life is passing them by.

With dual responsibilities, they often feel like they have no time to recharge or care for themselves. They may feel angry, frustrated, or left out but unable to express their emotions for fear of coming off as selfish or inconsiderate. Even the healthcare team and support staff can feel isolated due to the demanding nature of their work and the emotional toll of supporting patients with cancer. If you know someone who is caring for a loved one with cancer, whether it is a friend, family member, classmate, student, or work colleague, be sure to keep these challenges in mind and offer support authentic to your relationship.

The importance of staying connected.

Isolation and its effects can differ for each individual, and it is crucial to address and support those experiences. Staying connected can make a big difference, and having a support system of friends and family can provide a sense of normalcy and help them feel less alone in their experience. Additionally, being able to talk openly and honestly about their feelings and experiences can be a powerful way to feel heard, understood, and supported.

Technology can also play a role in staying connected for adolescents and young adults with cancer. Social media and messaging apps can provide a way for them to keep in touch with friends and family, even when they are unable to physically be together. Be mindful of what is said online and recognize that the fear of missing out is a very real issue during cancer treatment. Posts about parties, social gatherings, and other events can amplify the sense that the social network is moving on and they are being left behind. Online support groups can also provide a sense of community and a place for them to connect with others who understand what they are going through.

Another important way to stay connected is by connecting with healthcare professionals and support services. Adolescents and young adults with cancer may benefit from talking with a counselor or therapist who can provide emotional support and guidance. Additionally, support groups specifically for young people with cancer can provide a sense of community and a way to connect with others who are going through similar experiences.

Find Excuses to Connect

In episode 22 of The Support Report with b-present podcast, our guest Richard Lee Thai emphasizes that loneliness is a common feeling and social health is a skill to cultivate. During his conversation with co-hosts Justin Peters and Chiara Riga, he offers several helpful strategies that focus on creating the conditions to make meaningful connections easier, including having better conversations, observing the fear ladder, using connection cards, and much more.

Ways to provide support

Supporting people who feel isolated can be challenging, but there are several ways to provide support. Remember, everyone’s experience with isolation is different, and what works for one person may not work for another. Be open and willing to adjust your approach if needed. Here are some ways to support people who feel isolated:

  • Listen actively: Try to understand the other person’s perspective. This can help to build understanding and trust.
  • Be present: Be available to talk or simply be there to hold their hand. Your presence can be a great source of comfort and support.
  • Communicate: Encourage the person to communicate their feelings and thoughts. This can help them to feel heard and understood.
  • Offer practical help: Drive them to appointments, help with grocery shopping, or prepare meals. These are all helpful examples.
  • Connect them with resources: Share online support groups, community organizations, or counseling services that can provide additional support.
  • Show your support: Gestures such as sending a note or gift or giving them a call can help to validate their feelings and provide a sense of understanding.
  • Maintain contact: Make an effort to maintain contact through regular phone calls, text messages, or visits.
  • Be patient and understanding: Remember that isolation is a process that takes time to overcome. Be patient and understanding in your support and approach.

Isolation can have a significant impact on the experience of adolescents and young adults with cancer, but by staying connected, you can make a big difference in their experience. Friends and family can provide a sense of normalcy and emotional support, technology can provide a way to stay in touch, and healthcare professionals and support services can provide guidance and community. Keep in mind that staying connected is an ongoing process, and be patient and understanding when supporting a friend with cancer.

Learn more about supporting a friend:

Cancer in High School Series (Part 3): Supporting a Classmate After Treatment

Posted on by Aarushi Gupta

If you have a friend or classmate who has been away for a long time and is ready to return back to school, keep in mind that their life is slowly returning to a “new normal.” However, transitioning back to school post-treatment can be a difficult adjustment for teen survivors. Be ready to assist them both physically and emotionally, be aware of the changes and effects of their treatment, and be sure to handle your own emotions in the process. 

After an extended period away, cancer patients often think about missed academic and social activities. Some common questions include:

  • How will my classmates react to my return?
  • How will they react to my physical changes in appearance??
  • What did I miss out on?
  • What academic work do I have to make up?
  • Will I be able to catch up?

As you think about how to support a classmate post-treatment, it is important to remember that things may feel different, but you can help support a seamless transition back to a “new normal.” 

Returning to Campus

Before their first day back on campus, try to recognize and understand your classmate’s feelings about returning to school. Returning to school can be unsettling and even scary having missed a significant portion of school due to treatment. By planning ahead, you can determine how the student wants to be supported.. Is it a grand welcome with posters, cheering from various classmates, and balloons? Or is it a quiet “welcome back” from close peers, making the return as undisclosed as possible? Focusing attention on the fact that they had cancer can often do more harm than good as they try to return to a normal existence on campus. The last thing they usually want is to be constantly referred to as “the one that had cancer”. By talking to close friends, siblings, and your classmate’s parents, you can plan a welcome back that fits your classmate’s wants and desires.

Understanding the Situation

Post-treatment physical and emotional changes can include hair loss, self-consciousness, anxiety, depression, physical fatigue, problems with concentration and comprehension, and sensitivity. It helps to be informed about what they have had to go through during cancer so you can be better prepared and more empathetic towards their situation. For more information, check out our first blog in this series, Overview of the Teen Cancer Experience, our Cancer 101: Understanding the Road Ahead, and our supporter roadmap web page to learn more and find answers to other questions you might have about your classmate’s experience. Life by Ella, streaming on Apple TV does an excellent job portraying the challenges Ella, a 13-year-old cancer survivor, experiences with her family and classmates after returning to school. 

How to Help the Returning Classmate Cope with Anxiety

Returning to school is a big step for someone who has gone through the grueling process of cancer and its treatment. Some concerns the student may have include:

 

  • Being in the spotlight and the center of attention at school. The student may be worried about how people around them will react. Refer back to the “Coming Back to Campus” section to see how you can best support them.  

 

  • Fitting in with classmates and returning to a sense of belonging. The student may be worried about having trouble fitting back into the school because of changes in their physical appearance and mental health. Help the student feel as comfortable as possible and be mindful of topics they may feel sensitive about, including hair loss, weight loss, and other physical changes.

 

  • Feeling excluded. Your classmate’s extended absence likely means they have missed out on big milestones and events that occurred while they were away. When they return, be sure to let them know that you missed having them around. Fill them in on any changes or events that will help them feel “caught up.” Include them in conversations and group activities, and help them adjust, during this challenging transition phase. 

 

  • Dealing with bullying or teasing from other students. Although schools typically have anti-bullying policies, it, unfortunately, still happens. Your classmate may be afraid of the negative, targeted attention they receive. As a supporter, do your best to intervene when you see bullying or harassment. Talk to a trusted school administrator for help if it is a recurring thing, you see taking place. Always try to educate and point out when someone is doing something wrong. 

 

Support During School

“My identity had been reduced to simply being “the girl with cancer,” without everyone having the facts to inform their bewildered stares. Suddenly, classmates who I’d scarcely spoken to were holding my hand with teary eyes and my crush from Spanish class was asking me if my cancer was terminal, mid-verb conjugation. I’d scurry through the halls, trying to escape the eyes of my peers.” —BELLA ARNOLD

 

As supporters, friends, and peers, it is important to be mindful of our returning classmate’s support needs but continue seeing them as a person and not equating them to with cancer. Think about how close you are with the student; if you do not feel as close with them, try to be sensitive to the situation. If necessary, take the time beforehand to ask questions to trusted adults and teachers to ensure a safe environment for the student’s return. The student may come back with visible or emotional changes; be mentally ready for these changes to ensure a welcoming return. 

“My school has been so supportive and helpful, and I couldn’t be more thankful for that! A friend of mine hosted a swab drive with DKMS and they had a great turnout. I am so grateful for everyone that swabbed [to determine whether they are a stem cell donor match]! The most challenging thing is that nobody, including your closest friends, will ever understand what you’re going through or how you feel but I appreciate the ones that truly try.” —AUTUMN COLE

 

What Should I Avoid Doing?

Sometimes things slip out, or curiosity gets the best of us. Here are some things you should avoid bringing up in conversation with your returning classmate unless the student engages in that conversation.

  • “I know someone who went through a similar situation.” Avoid bringing up other stories, as everyone has a different experience with cancer and faces different challenges. Sometimes, this statement can seem like you are comparing their story to someone else’s and are dismissive of their own experience. 
  • “I know exactly how you feel/what you are going through.” Everyone feels differently about the situations they face. Even if you went through a significant illness or injury, the experience is never the same; show empathy. 
  • “You are so brave for coming to school.” Putting labels on them, while well intentioned, can keep them from being their authentic selves and cause them to feel isolated. For example, telling them they are so brave can keep them from showing anything other than a brave face, even when they may feel otherwise inside.
  • “Your appearance has changed.” or “You look different.” Comments like these can make the student even more self-conscious and apprehensive about their appearance. Even if they do look different, drawing attention to it is not helpful. 
  • “Everything will be okay.” Although the first impression of this statement seems to be positive, talking about the condition or state they are in and making positive assurances when you don’t have control over these promises is dismissive of their feelings. The student may fear the return of their cancer and statements like this one can cause anxiety over this fear.

 

In general, stay authentic to your relationship and the topics you would naturally discuss as part of that relationship. Follow their lead on topics specific to their cancer or changes in appearance and mood. If they want to talk about it, they will take the lead. When they do, don’t change the subject. Be a good listener and provide a safe and non-judgmental space. If they don’t want to talk about it, find other common ground to connect on.

In addition to being supportive on an individual level, students and schools can rally together to create positive change for classmates in their communities. Questions like, “How can I do more to raise awareness?” and “What events can help educate our community about cancer and support community members?” will be answered in our next segment of the Cancer in High School series. We will also cover how high school students can rally together to make a difference for teens in their community. 

Want more?

Sources:
https://www.cancercouncil.com.au/cancer-information/schools-and-teachers/cancer-in-the-school-community/ 
https://www.kidshealth.org.nz/supporting-your-student-returning-school-after-cancer-treatment 
https://www.lls.org/blog/after-cancer-treatment-when-going-back-school-isnt-exciting 
https://www.teenvogue.com/story/dkms-what-its-like-to-have-cancer-in-high-school
https://www.cancer.org/treatment/caregivers/how-to-be-a-friend-to-someone-with-cancer.html
https://www.cancer.net/navigating-cancer-care/young-adults-and-teenagers/school-and-work-during-cancer/managing-school-during-and-after-cancer 

 

Cancer in High School Series (Part 2): Supporting a Classmate During Treatment

Posted on by Aarushi Gupta

“Over the years, I’ve answered, ‘What’s the hardest part about having cancer as a teenager?’ in the same way: feeling forgotten.”

Treating cancer is a difficult process and should certainly not be faced alone. Yet, many high school students diagnosed with cancer feel isolated from those around them immediately following the diagnosis and face increased separation during the treatment process. Preserving a sense of normalcy and helping a diagnosed classmate stay connected with their community is one of the best ways you can be there for them.

Support comes in many forms—emotional, verbal, and physical. You can stay connected online, plan in-person visits, write cards, give gifts, deliver their homework, etc. While all great efforts, support heavily depends on the patient and should be tailored to their specific needs and wants. To do so, you must first understand the process of giving and managing effective support.

Understanding a Classmate’s Situation

Receiving the news that your classmate has been diagnosed with cancer is shocking. It can stimulate so many different feelings—confusion, discomfort, and anxiousness, to name a few. 

And many questions immediately come to mind…

  • How should I react? 
  • What is okay to say and what isn’t? 
  • What can I do to be there for them and/or their family? 

 

While these immediate questions and feelings might feel overwhelming, they are normal and vital to address and reflect on. Use these feelings to educate yourself on what your classmate is going through. Find someone to talk to, like a parent, teacher, or counselor. Being aware of what your classmate is and will experience during this challenging time allows you to meet them where they are and provide the best support possible. For example, suppose you know your classmate has an upcoming surgery. In that case, you can start rallying their support network to take turns planning virtual or in-person hangouts, taking notes for them during class in their absence, or fulfilling needed wishlist items. Equally important is ensuring that the support offered is aligned with how they want to be supported and feels authentic.

Preparing for Change

During cancer treatment, they may experience physical and emotional changes, including but not limited to hair loss, weight gain or loss, mobility limits, endurance limits, “chemo brain” (challenges with concentration and comprehension), neuropathy, etc. These temporary changes may make them feel more self-conscious and sensitive to their physical and social environment.

“A big struggle for me was my appearance. I used to have the longest brown hair, and now, here I was with the shortest pixie cut I’d ever seen. And I HATED it. Oh, my word, it was the absolute worst!”

Preparing for these changes can help you maintain your relationship and minimize changes to how you perceive or treat them. It will create a more comfortable environment once you become familiar with the changes and know what to expect. Remind yourself that these changes are associated with cancer or treatment, and do not change your relationship or the person you knew before.  

Emotional Support: Holding Conversations with a Classmate

One of the most significant ways to be there for your classmate is to have normal conversations with them. Whether it be about a recent news headline, classmate updates, or celebrity gossip, offering a diversion from cancer is always welcome, as it has quickly taken over their entire life. As a friend and classmate, you should focus your time spent together on staying connected and building your relationship, just as you did before their diagnosis. Your goal is to preserve a sense of normalcy.

“Stay connected with friends through social media and texts, inviting friends to the hospital during visiting hours and playing video games or watching movies when at home.”

“For times when you can’t see friends or family you can stay connected through social media, email, blogs and phone or video calls.”

Equally important is following their lead when it comes to important topics. As important as it is to preserve normalcy and have lighter conversations, do not be ignorant of cancer. If the topic comes up, it means they want to talk about it. Be a good listener. Friends and peers who go through this often like to share their feelings and talk about the overall situation. This is a good outlet to help you understand what’s going on at a deeper level and get a better sense of their wants and needs. 

“We relied on each other for comfort and understood what each was going through. We were able to let out frustration when times were hard or when we didn’t feel our best.”

Patience is key when communicating with a classmate who is diagnosed. Since they are going through so many changes in such a short amount of time, it may take a while for them to wrap their head around the fact that their world was completely flipped upside down. Treatment often causes a decrease in energy and mood swings, so don’t be overwhelmed if your classmate struggles to feel happy and enthusiastic. With cancer, every day is different and brings a new set of challenges. Do not back away from the situation and leave them to deal with it all alone. Keep showing up to avoid stimulating feelings of isolation and distance. 

General Tips to Support a Classmate

While you continue to talk and meet with your classmate going through treatment, here are some general things to keep in mind during your interactions:

  • Take the initiative to make plans and be flexible with them. Keep inviting them even if they decline sometimes. It is important to feel included and not forgotten.
  • Stay positive and friendly, even when the same feelings are not reciprocated. Remember, they are going through a lot and it is not personal.
  • Understand their perspective. Try to imagine what it must feel like (without saying “I know how you feel”) 
  • Hold space for uncomfortable topics.
  • Treat them the same, don’t view them differently because they have cancer.
  • Always be ready to help: mentally, physically, and emotionally. 
  • Self care is also important – take care of yourself and find your own outlets to destress, talk and process. You can’t be present for them if you are tired or preoccupied.
  • If they have siblings going to the same school, be sure to check in with them too. Remember cancer affects the whole family, and siblings can feel even more isolated and abandoned.

 

“It’s never easy dealing with an illness like this, but I’m blessed to have the great support system that I do. I don’t know what I would do without my family being here for me.” —Autumn Cole

Continue being there for them. Show up and don’t distance yourself from the relationship or situation just because it may be a little uncomfortable.

Visual and Practical Support

Visual and practical support is equally important to emotional support. As supporters, we should not only help facilitate emotions and stay verbally connected with them but assist them in daily tasks, getting things they may need, etc

Be a Liaison

Offer to help communicate to all necessary people, whether it is with other classmates or teachers. Offer to send messages on a regular and recurrent basis. Take the initiative to curate a list of contact information to help you relay important news

Schoolwork and Education

“When I was having chemo, the school didn’t [realize] how sick I was going to get and they kept sending me assessment tasks. After a while, they stopped doing that and just asked how I was now and then.”

Keeping up with homework is difficult for many high schoolers going through an intensive treatment program. They may tire more quickly, both mentally and physically, which makes it hard to keep up with class assignments; this is something many fail to recognize. Helping to offer them balance school and treatment, from taking notes and tutoring to something as simple as passing along assignments, can be very appreciated. 

Care Packages

Mixing creativity with the needs and wants of your classmate can be a fun project to show support. Consult with their parents about foods and drinks they currently enjoy, include some personal care items like scented hand sanitizer and fuzzy socks, and add a few enjoyable activities that can be done to occupy time alone like small puzzles, books, or a journal. Put it all together in a decorated box and deliver it to them. When you take the time to bring them meaningful items that correlate with their interest in a nicely-wrapped package, it shows how much you care and that you are there for them – it builds a sense of trust and connection.  

Miscellaneous Gifts

Some ideas to show support include

  • Pajamas
  • A thoughtful, interactive card
  • Souvenirs 
  • Pictures 
  • Self-care items
  • Games or activities

Tips for Maintaining Contact with a Classmate

Sometimes it’s hard to find time to connect with your classmate because of the conflicts between their treatment schedule and personal health and yours. That is the beauty of virtual communication. Take the time to send a text message, mail a gift, or leave a voicemail. Contact their parents for their schedule and spend a few minutes finding a time that works for both of you. Even the smallest gestures show you care.

A strong support system is vital during the treatment process. Supporters must try to understand the situation, the person, and their diagnosis to the best of their ability and act accordingly to maintain connection and be there for them when needed. 

And as we begin to think about post-treatment support and lifestyle changes, more questions arise on how to help create a smooth transition into their “new normal.” 

  • How do I continue to support the student after treatment? 
  • What questions should I be asking? 
  • What support should I be giving? 
  • How do I preserve the feeling of “normal”? 
  • What things should I avoid saying/doing? 

 

The next segment of the Cancer in High School series will cover how to support a student after the treatment process: the do’s and don’ts of support.

For more tips on how to show support to a classmate, visit the following resources:

Want more?

 

Sources:
https://www.curetoday.com/view/missing-out-on-the-high-school-experience-is-painful-but-its-also-survivable
https://together.stjude.org/en-us/teensand20s/keep-up-with-school/starting-high-school-with-cancer.html
https://teens.aboutkidshealth.ca/Article?contentid=3509&language=English#:~:text=Stay%20connected%20with%20friends%20through,and%20phone%20or%20video%20calls.
https://together.stjude.org/en-us/blog/article/Facing-Cancer-Together-A-Story-of-Two-Best-friends.html
https://www.teenvogue.com/story/dkms-what-its-like-to-have-cancer-in-high-school
https://www.cancercouncil.com.au/cancer-information/schools-and-teachers/cancer-in-the-school-community/stories/#ruby

Cancer in High School (Part 1): Overview of the Teen Cancer Experience

Posted on by Aarushi Gupta

Receiving a cancer diagnosis is devastating at any age, but receiving a diagnosis in high school is particularly disruptive and comes with its own challenging obstacles. High school is a unique time in a teen’s life filled with memorable experiences and milestones that define the path they take and who they will be in the future: a development of social and emotional attributes, career building, etc. This includes gaining independence, building new relationships, and finding their way in social situations.

Milestones like:

  • Learning to drive
  • Getting a job
  • Preparing for and applying for college or career
  • Attending school dances
  • Social clubs and activities

 

And even sharing the classroom experience feeds life lessons, develops personal character, how to build trust, and how to process challenging emotional situations with the support of their peers. With a cancer diagnosis, all of these life-shaping experiences are disrupted as the teen diagnosed is removed from school during treatment. Social connection is vital for this age group. Yet, it is often completely broken after cancer and extremely difficult to pick up the pieces and return to “normal” after treatment is over.

As a community, we have the opportunity to improve the teen cancer experience. In this five-part Cancer in High School blog series, we will explore cancer’s impact on the high school experience and what we can do to make it better. Part one provides an overview of cancer in high school and what the experience looks like for the teens diagnosed. Future blogs will cover topics that include how to support a classmate (or student) during treatment, the do’s and don’ts after treatment is over, and how to support the close friends or siblings of the teen diagnosed. We will also discuss how schools can rally and organize to make a positive difference for other teens struggling with cancer and social isolation in their community.

When an unexpected cancer diagnosis enters a student’s life, it immediately impacts every aspect of their life and reroutes their path to now account for cancer. Understanding the experience of a high school student dealing with cancer can help us show empathy and be better supporters.

Cancer in High School: The Statistics

“When I was diagnosed, I was genuinely terrified. I didn’t know anyone else with cancer and was treated alongside young children and older adults.” Diagnosed with Hodgkin’s Lymphoma at age 15, this survivor’s experience is common amongst teens in this country. 

Nearly 89,500 Adolescent and Young Adults (AYAs) between the ages of 15-39 are diagnosed with cancer in the United States each year.

(Source: Cancer.org)

 

This population is the most underserved by age, and treatment is often split between pediatric and adult hospitals. “I was treated at a world-class institution with some of the most brilliant and caring doctors and nurses in the world, but AYA-specific care was the missing puzzle piece for me.” It is well documented that AYAs fall through the gaps in the hospital system. Within this underserved age group, approximately 7 percent (5,000-6,000) are teens ages 15-19.  

Cancer types found in teens 15-19 include a mix of those that develop in children and adults. The most common types seen in this age group are different than in older or younger adults, including lymphoma, leukemia, thyroid, brain and spinal cord cancers, testicular, sarcoma, melanoma, and ovarian cancer.

The Diagnosis

Finding cancer in adolescents is often delayed and in a more advanced stage than seen in other age groups. There are various reasons why cancer diagnosis is delayed, including symptoms or discomfort that are ignored or having similar early symptoms for other more common illnesses. Even when seen by a doctor, it is more likely that their symptoms like pain or fatigue will be attributed to something other than cancer. 

However, once the cancer is recognized, the general sentiment of receiving the news includes shock and unexpectedness, followed by feelings of isolation and loneliness. In Ruby’s story, she shared that her cancer treatment required surgery and extensive chemotherapy and radiation treatments concurrent with school. 

“After surgery to remove the [tumor], I found out my treatment wouldn’t end there. Six weeks later, I started radiotherapy. I kept on going to school and had the treatment in the afternoons. Even though it made me nauseous, I pushed through. Then I had four rounds of high-dose chemotherapy and was off school from November to March.” (Cancer Council NSW 2021).

Following a diagnosis comes informing school personnel, activities, and relevant people. It is important for the student to have the opportunity to maintain a comfortable lifestyle while adapting to sudden change, especially being in high school—a time dedicated to preparing for their transition into adulthood. Making plans for the future must now account for cancer, including but not limited to treatment plans, doctor visits, and mental and physical health. 

While the communication aspect is being delivered, what is not well recognized is the immediacy of what follows. Allie Newman was diagnosed with Osteosarcoma at the age of sixteen in 2011. She learned that her treatments would begin the following morning, which gave her a mere 10 hours to understand her complicated and life-changing situation. Being instantly told what she would be able to participate in and what she would have to leave, what she could and could not eat, and the sudden increase in doctor visits gave her little time to adapt to this new lifestyle, something many teens with cancer have to face. 

Cancer in High School: The Experience

Every experience with cancer is different; each individual attends to a unique set of positives, negatives, and hardships. When someone receives a cancer diagnosis in high school, their experience depends on their support system, individual character, and how well treatment is balanced from their social, school, and family life. 

School Life

Many students who were able to share their stories recalled positive experiences when it came to maintaining school requirements; school administrators and faculty took great care to accommodate their needs. Jeremy, who received his diagnosis during his junior year of high school, shared his positive experience with his school. He was provided flexible options to stay on track with his schoolwork, and the school emphasized that his health was the main priority. Ruby also showed her appreciation for having a designated teacher to communicate with for school needs. 

Schools will generally appoint a teacher or administrator to regulate the student’s progress and serve as a liaison between the student and the school. This helps create a healthy balance of school during treatment; the student can efficiently communicate any needs, meet their academic expectations, and have access to a more flexible schedule.

One common theme throughout high school students dealing with cancer is declining academic capabilities. Ruby explained needing to lower her academic performance standards from the level she used to achieve post-chemotherapy. She also mentioned starting tutoring and how, to catch up, she focused on learning what was seen as the most important topics because of just how much she missed. Jeremy shared a similar experience where he only learned key concepts instead of the entire curriculum; he targeted achieving the minimum requirements to complete year 11. 

“I still struggled watching my friends play volleyball without me.” Because of the physical tolls treatment has on your body, patients are often restrained from participating in physically-demanding activities. Many high schoolers have to drop sports and find other ways to be involved in the activities they love. “Since I couldn’t be out there doing everything I wanted to do, I found ways to participate. Instead of being on the volleyball court, I took photos for the team. And I felt included!”

Isolation and Normalcy 

“I sort of remember my first week at the children’s hospital where I received all my treatments. I sat up in my hospital bed, hair hadn’t even started to fall out yet from the chemo, and I asked my oncologist, “How long will it take me to feel normal again?”

Another common theme many high school students with cancer face is losing connections with themselves and those around them. Maintaining relationships during treatment and returning to normalcy once treatment is over proves to be one of the biggest challenges. Some teens returned to a spike of enthusiasm and consideration from their friends and peers to help them transition back to the school environment. Yet, as time progresses, those same friends aren’t there to stick around even when help and support is still needed.  

(Picture credit: Sana Moezzi)

“I lost a lot in the first year after I was officially discharged for my cancer treatment. I lost my partner, I lost some friends, I lost my mind several times … But what’s important to me now is that when I look back at myself, I see this severely injured being who maybe just didn’t have the right support around them at the time.” 

“From the beginning of my journey, I was alone and isolated. I felt my teenage years were being cut short and I was utterly out of place in high school. Surgery caused me to miss school trips, hospital stays prevented me from attending school, homecoming fair, and dances. In three months, I attended only 14 days of school. And for a girl like me, who loves learning and reading, doesn’t mind homework, and secretly smiles when a presentation is assigned, I witnessed a huge passion dissipate. I grew distant from my friends and struggled to stay in the loop of it all. Many days I struggled with depression, not seeing a single teenager in treatment, convinced I was alone. I was lost and separated amid the jumble of small kids in pediatrics.”

Teens who experience the side effects of cancer treatment face feelings of discomfort when going back to what they used to define as normal. “Everyone looked really shocked. People stared a lot, especially the younger students. I hated it.” Cancer treatments cause visible changes to your body, common ones being weight and hair loss from chemotherapy and radiotherapy. Because their bodies undergo intense treatment, they become much weaker.

Going from resting and internally fighting to daily physical movement is a significant change; some use mobility aids like wheelchairs to assist them as they are unable to move on their own. These physical changes prompt many unwanted questions and shocking looks from those around the teen, which adds to these feelings of discomfort and isolation. 

“I felt like the only teen in the world with cancer.” —Lauren Telesz

The entire process of dealing with cancer makes high schoolers who are diagnosed feel more alone. They miss out on memorable high school experiences, attending school dances, dressing up for school spirit weeks, and connecting with students through group projects and clubs. And the effects don’t stop once treatment is over. The recovery process is longer than you think. Not only do they need to make up for the time lost during treatments, but they return to a “new normal” where cancer becomes part of their story. 

So how do we as a community of friends, classmates, teachers, and counselors help reduce the sense of isolation and abandonment that often occurs with a high school cancer diagnosis? How do we preserve their sense of normalcy without focusing only on their cancer and the temporary physical and emotional changes that come with it? How do we stay connected and also keep our own mental health in check during that process? Stay tuned for our next installment of Cancer in High School to learn how we can make a difference and overcome the stigma that drives a wedge between us and the teens who need our support.

Want more?

 

Sources:
https://www.mskcc.org/experience/hear-from-patients/emma 
https://www.yalemedicine.org/news/teen-cancer-diagnosis
https://www.cancercouncil.com.au/cancer-information/schools-and-teachers/cancer-in-the-school-community/stories/#ruby
https://timely.md/blog/how-college-student-cancer-survivors-can-maintain-their-health-and-wellness/

A Letter to Parents of a Young Adult Diagnosed with Cancer

Posted on by Abby Westerman

Seven years ago today, Kirsten called with news that changed our lives forever. I still have the text exchange on my phone from July 26, 2015. She was away at college, very sick with what she thought was the flu, and a caring friend was driving her around trying to find an urgent care facility that would see her (i.e. accept her insurance). The situation was getting desperate when she texted me for help. As I frantically searched for a location in her area online, another text came through…

“Did you figure it out yet? I am f*king dying here.”

Ugh. Little did we realize. After giving up and telling her to go to the emergency room, I would wait anxiously for two hours before we would hear from her again. That call is the one that will bring parents to their knees. “The doctor says I have leukemia, and he is trying to find a hospital that has beds available. He said I need to go right away.” 

From Kirsten’s diagnosis to the tragic loss, life was disorienting, chaotic, emotional, and exhausting. We felt like we were constantly climbing the cancer learning curve, with so many lessons learned along the way. What I would have given for my future self to offer a few helpful tips before stepping into Kirsten’s hospital room for the first time later that night. 

Over time, we all become experts of our own unique experience with cancer, so my hindsight may have its limits. But in memory and in honor of Kirsten’s experience and the challenges we experienced navigating the ups and downs as parents of a young adult with cancer, I offer the following advice to other parents who have recently been informed their (young adult) child has cancer. 

Parents, find a balance between giving care and giving space

As a parent, when your child is very ill, no matter what age, it is natural to want to do everything you can to protect them. But for a young adult, that can sometimes feel smothering. Have the awareness and take the time to ask them how they want to be supported. Recognize when your care is helpful and when it might feel like too much.

I often felt like I needed to be in the room with Kirsten in case something bad happened. But bad things may happen whether you are there or not, so for your mental health and theirs, find time to take for yourselves (and give them alone time). When you are in the room with them, they may not be able to truly act and feel like themselves.

If they were an independent young adult before the diagnosis, it can be very frustrating to lose that sense of freedom and control. Yes, they will need your help. But give them control where you can, even if it is just giving them a choice about what they want to eat, when they want some alone time, or who they want to visit (or not), etc. When Kirsten’s friends came to visit, we stepped away but let her know we were a text away if needed. 

Parents, do what you can to mitigate physical and emotional isolation.

One thing that has become very clear over the last seven years, the health risks from isolation can have lasting effects. Look for the signs, and work with the psychosocial team to mitigate the impact where possible. Isolation is more than just being alone in a room. It can be felt when they can’t express how they are feeling, when they are unable to do normal activities, and when they don’t have access to peers with shared experiences. And when we apply labels like “you are strong” or “you are an inspiration,” they feel they have to live up to the label, preventing them from sharing how they are really feeling.

By providing a safe space for young adults to share their emotions – name them, understand them, and process them – they can cope and move forward. So when they are sharing how they feel, try not to change the subject, attempt to fix it, or be dismissive. All of those responses invalidate their feelings. Also, there are some topics they need to talk about, but you or other members of the support team might not be the right audience. Depending on the topic, other peers, a trained health professional, or therapist is needed. The best help you can offer in those situations is to ask how they need to be supported and then help them find those other resources.

A word of caution, hospital privacy rules can be a major impediment to meeting others going through a shared experience. Often they are just down the hall, but you will never know. Remember, YOU have control over your own privacy wishes – the best way to meet others may be to give the hospital staff permission to let others know you are there and want to meet. Provide it in writing if needed. Kirsten would do the same thing to seek out other patients. As a consenting adult, she would provide her cell phone number and give the doctors and nurses permission to share it with anyone her age who wanted to meet in the hospital. The rest was up to the recipients to follow through. Your mental health depends on connection and having outlets and people to talk things through, so find ways to make it happen. 

Parents, respect their boundaries and right to private conversations with their medical team.

Let them be the ones in control of the speed and direction of information flow with the health professionals. Their body, life, and future are at stake – give them the opportunity to have full access to the information that affects their future – they should feel comfortable speaking freely, asking questions, answering honestly, and being involved in the decision-making process. Also, respect their privacy boundaries – and try to have the awareness to know when conversations head in that direction and offer to step out without being asked.

And this can’t be emphasized strongly enough…if it gets to the point where they ask you to step out of the room, do it without making them feel bad. It takes courage to speak up, and they need to feel safe making that request. Remember, it is not personal, and it’s not about you. Private topics can include family planning and fertility preservation, sexual activity, and lifestyle choices. For some topics, like fertility, they may not have thought about it until this moment, but they deserve to know how their treatment will impact their future ability to have a family.

There is nothing worse than feeling like, “why didn’t anyone tell me?!” after treatment is over (or it’s too late to take action). Kirsten was very engaged and curious about her condition, treatment, and how it impacted her future. Due to the severity of her cancer, she did not have the time to consider fertility preservation. Still, the information provided by the medical and psychosocial team helped her gain control over one of her biggest fears – fear of the unknown.

Parents, don’t assume you know what they need, be sure to ask.

As an independent young adult, the last thing they want to feel is dependent on their parents again, but they will need and want your support. Just make sure the support you offer is the support they want. Physical and emotional needs will change as treatment and other factors change. Be mindful and present in the moment when you are with them. It will help you tune in to pick up on the spoken and unspoken cues. That means leaving work, other family stress, financial concerns, etc., outside the room when you can.

But even when you are “dialed in” after spending months together, you will still get it wrong. It’s inevitable. But by taking the time to ask the simple but important question, “How can I support you today?” you are allowing them to regain control over what they can control, and in the process, you are getting them what they need. They may not always have an answer (which is okay too), but at least you extended the courtesy of asking. 

Parents, where possible, preserve normalcy, including activities, family time, and routines.

When a diagnosis happens, it’s all hands on deck to save a life, and all focus shifts to the person with cancer. It’s a marathon, not a sprint, and that long-term focused attention can create collateral damage to other family members and relationships. As soon as possible, check in as a family and establish some important ground rules to keep the lines of communication open, find routines that you can sustain, and identify activities that are important to maintain.

Siblings are often asked to take on extra chores, help with school, and sometimes even pick up a job to help with finances. They may sacrifice activities with friends or school milestones because they feel the need to always be strong and mindful of their sibling with cancer. Unfortunately, jealousy, resentment, frustration, and isolation can build up over time, and they will feel isolated, and their mental health will suffer. Give them breaks, have one-on-one time with them to talk and allow them to do special activities. Make sure they still get to live life and have time to enjoy friends.

And for spouses or life partners, make time for each other as well. Plan your own private time away from the hospital together to talk and reconnect. Remember, your child will also want their quiet time, so this is a great opportunity for everyone’s self-care and mental health. 

Parents, watch for signs of financial stress and guilt.

The physical and emotional toll of cancer is bad enough, but the financial damage caused by cancer is also devastating and often hard to recover from. Cancer treatment and all of the secondary costs, including lodging, food, and alternate care for family, can add up FAST. When Kirsten was first diagnosed, we had no idea what to expect, and that one-week hotel reservation turned into a three-month extended stay – and it was out of network for health insurance. And since Kirsten was an adult being treated in the children’s hospital, none of us had access to any available services that would have helped offset those costs.

In the three months we were displaced, we would burn through nearly $40K of non-reimbursable expenses – just for lodging! That doesn’t even scratch the surface of the bills I saw go back and forth between the hospital and the insurance company. Without insurance, everything we had saved for the last 30 years would have been gone by the time treatment was over. My husband was between jobs, and we had no idea what would be approved or denied during treatment. Only after Kirsten was transferred back to San Diego would we become aware of just how stressed she was about the cost of her treatment and her concern for how it impacted all of our futures. That is a heavyweight for a young adult with cancer to bear on top of everything else. 

Parents, asking for and accepting/declining support is stressful, but it doesn’t have to be.

Support stresses everyone out at some level. Those in your circle who want to support worry about calling at a bad time, offering the wrong thing, or making things worse, not better. Remember, people want to help, and sometimes all they need are clear directions. And when you are the one in need of support, there is the stress of being a burden, seeming needy, weak, or incapable of caring for your own family, or on the flip side, not being in the mood for the support that is being offered and feeling guilty declining.

So much energy is wasted on the stress of communicating needs and offers of support. I regret not accepting the offers from friends and family. It would have given us welcome relief and the support system the joy of feeling helpful, making a difference, and providing comfort when someone needed them.

Reducing this stress is easier said than done, but one possible tactic is to make a list of all the things preventing you from being present for a loved one that you find yourself thinking about but don’t have the time to do. Post that list (or have it ready to share when people call or text) and let your network pick and choose what they feel comfortable helping with.

When you decline offers for support, provide constructive feedback that allows the support network to make helpful improvements for next time. Things like exhaustion, diet restrictions, changes to smell or taste, and other sensitivities are all perfectly acceptable reasons for declining or requesting an alternative. “Thank you for the offer. I’m not feeling well today. Can we reschedule for another time?” or “I appreciate the offer to bring ___, but a better alternative would be ___.” Honest and thoughtful guidance will make it better for you and them next time. 

Parents, find a method of communication that works for you and them.

The tools you need to communicate with family may be very different from those you need to communicate with their young adult friends. Find the tools and resources that make life easier, not harder, to keep everyone updated and engaged. There are lots of resources out there. Ask the care team and other caregivers and patients to find out what they use.

Respect privacy, and make it clear to others what they can or can not share. You don’t have to personalize every email – people understand and appreciate any updates. It also opens the door for them to reply when they might otherwise avoid connecting for fear of disturbing you. Also, consider how your updates will affect young adults reading it for the first time. For many, the news, and even the updates, can feel very scary, and have them worrying about death and even questioning their own mortality.

It is okay not to provide updates until you have more information. Avoid throwing the word cancer out there and then going radio silent for days. Only share information with people that you know and trust. And don’t be afraid to remove or block people that feel toxic or are less than helpful. Information sharing is first and foremost to help people provide support and comfort. If they create more work and stress for you than comfort, it is okay to take a break from connecting with them. 

Parents, be patient, be kind, and find forgiveness.

Being in close proximity for extended periods, mixed with fear, uncertainty, loss of independence, and friendships combine to turn life into a giant pressure cooker. The stress is enough to end relationships, break up marriages, create long-term resentment amongst siblings and parents, and unfortunately, contributes to all kinds of physical and emotional baggage down the road. It will be hard work to keep it together sometimes, but for everyone’s sake, do your best to act with kindness and when that fails, gather the courage to ask for and find forgiveness.

When feelings start to escalate, breathe. Have the self-control to take a break and walk away (but don’t storm away). It doesn’t do any good to argue and negatively impacts their health and yours. The closer we are, the more comfortable we are to vent and even say hurtful things. Hold the space for each other to express those feelings and try not to take them personally. Mistakes will be made but do your best. That is all anyone can ask

Keep your head up. Take care of yourself and each other. There will be good days and bad days, but every day you get to spend with each other is a gift. Many things about cancer are out of your control. So don’t waste time worrying about those. What you do have control over is how you choose to live each day and how you choose to treat each other. Do your best to make every day a little better.

Want more?

The Bond of a Cancer Best Friend

Posted on by b-present Team

The Story of Shauna and Rosalina

Cancer best friend: a person that you met on your cancer journey that you share your experience with, and someone you can truly lean on for whatever you need during your cancer experience.

We often place more focus on sibling—or parent—relationships when talking about cancer diagnosis and treatment and how they provide support, but we don’t talk as much about the immense importance of friendships.

Friendships during a cancer diagnosis are game-changing. Friendships allow individuals to adjust to the changes cancer brings, have a more positive outlook, and often report a better quality of life. Friendships that are forged as a result of a cancer diagnosis can be some of the strongest bonds, as such a small number of people truly know what a cancer patient is going through. This is the case for Rosalina and Shauna, two best friends on opposite sides of the country who are now best friends after meeting through their cancer diagnoses.

The Bond of a Cancer Best Friend

Cancer Best Friends: Shauna and Rosalina

Shauna and Rosalina, both diagnosed with hormone-positive breast cancer before age 35, met through a Facebook support group where both had an intense desire to start a podcast to share their cancer experience.

“What I’ve learned [breast cancer] happens more in older women and not necessarily younger women. I felt really alone, and then I just woke up the day after my mastectomy surgery and thought, I’m sick of being angry and feeling alone.

I joined all these Facebook support groups and posted to each, sharing my story and asking if there’s anyone out there around my age that has a similar experience and wants to be a co-host of a podcast with me.

I met Shauna, and I felt like when we did our first zoom meeting together, I just thought that we clicked automatically. I kept thinking about Shauna for like the next couple of days and finally realized she would be a perfect fit for this podcast, and she is so. I’m super glad to have met her.”

Too Young For This Sh*t

Together Shauna and Rosalina started the podcast ‘Too Young For This Shit’ with the mission to bring awareness of breast cancer to young women and create a supportive space where no one is alone on this journey. In episodes, they dive deep into their treatment plans, journeys, struggles, and mental health as they navigate life in their “new” normal.

Even though they are on opposite sides of the country, they have been there for each other and have learned from each other along the way.

“I don’t think I could do it without her. I wouldn’t be where I am right now without her. We are such a good team, we have gone through our cancer journeys together, even on different chemo regimens, and we still had each other’s backs throughout the entire time. We are always texting and on the phone. I’m crying. She’s crying. I try to be super funny at certain times where she is super serious.”

What Shauna and Rosalina Taught Us

A few pieces of advice that we learned from Shauna and Rosalina on what friendship means during a cancer experience include:

  • Laugh together: Be humorous and funny in the right situations and when needed. A funny story, meme, or joke can help lighten the mood and make your friend’s day.
  • Allow space for all emotions (including sadness and frustration): Be a safe and open space for your friend to feel whatever emotion they need to express. Do not steer away from uncomfortable topics or emotions.
  • Talk about topics other than cancer: Your friend is still the same person they were before their diagnosis. Ask about interests, hobbies, or other topics they enjoy. Do you both enjoy a podcast, book series, TV show? Talk about your shared interests to allow them to take a break from talking about their cancer.
  • Ask permission: Asking is always a good place to start. Ask how they want to be supported that day. If they are up for a visit, ask if you can ask questions or talk about certain topics. More important than asking is to ask in a way that your friend knows that saying ‘no’ is a totally valid and acceptable answer.

 

Learn more about cancer best friends Shauna and Rosalina on our podcast, The Support Report with b-present.

Want more?

Friendship and Loss: How Being Present, Not Perfect Can Help You Live with No Regrets

Posted on by b-present Team

Cancer is full of difficult emotions, from diagnosis through treatment and beyond. Here, we discuss the experience of loss and how to maximize the time you have together.

The catalyst for change

The b-present mission started with a lived experience: we lost our inspirational force, Kirsten, to leukemia in 2016. This loss felt abrupt and inexplicable: shortly after ringing the bell to signify the end of her treatment, an infection set in that, without an immune system, her body was unable to fight. The unexpected end to her story shattered the lives of all who knew and loved Kirsten. 

Survivors’ Guilt and Isolation After Loss

When we hear about survivors’ guilt, we often hear stories from cancer survivors who feel immense guilt that they are still alive and their friend with cancer is not. Supporters of a loved one often feel lost and alone as they struggle to process losing someone so young. 

Friends may be uncomfortable talking about death and are quick to change the subject when it comes up, or they may listen but are at a loss for how to offer comfort and support. The result? The friend or survivor is left feeling even more isolated and alone at a time when they could use a friend the most.

“I almost felt this sense of guilt carrying out my life still after the fact,” said Kelly, Kirsten’s friend since first grade. “I almost felt like, how is this fair? … I am here and I am able to do this … and Kirsten is not.” 

Kirsten (left) and Kelly (right) celebrating Kirsten’s 10th birthday.

 

We know we are not alone in experiencing this loss. As part of our mission, sharing our genuine emotions and experiences is vital to help  others out there who may be going through similar difficult times. 

In the seventh episode of our Support Squad webinar series, Kirsten’s friends Kelly, Bri, and Jordann offered candid insights into their journey as friends and supporters of a young adult going through cancer. 

‘It’s very isolating’

Life was looking up after Kirsten rang the bell, celebrating the end of her cancer treatment, which is why all of her friends were surprised by her subsequent rapid downward spiral. Kelly, Bri, and Jordann agreed—none of them thought the last time they saw Kirsten would be the last time.

“I remember walking through the grocery store and everyone is moving around me and living these lives and I am numb,” said Brianna. “Looking back, you always wish that you visited more. A lot of times it’s realizing that you don’t need to be perfect to show up … Even if you showed up for an hour.”

Be Present, Not Perfect. 

We say ‘live life with no regrets,’ but many young adults have never experienced a peer that has been diagnosed with cancer, and fewer have experienced losing a friend at such a young age. 

“Shocking doesn’t even begin to describe the experience,” Jordann said. “Cancer is one of the most complicated things you can go through regardless of the role you play in it.” 

From left to right: Jordann, Bri, and Kirsten at a concert.

 

Learning the news of a friend’s diagnosis can be both devastating and surreal. It can feel like a complete shock, and the array of reactions to this life-changing news is normal and expected. 

“It felt like I was watching a movie. It didn’t feel real.”

Feeling closed off and isolated, wanting to ‘fix’ the problem, and jumping in to do everything and anything you can—having so many unanswered questions is the hardest part.

  • What type of cancer is it? 
  • What is the prognosis? 
  • What’s appropriate to say? 
  • How can I be there for her?
  • How can I support my friend? 

 

It is normal to want everything to be perfect, but striving for perfection can get in the way of simply being present. 

At b-present, we are passionate about empowering the network of people that will be present for their loved ones. Social support is critical to a newly diagnosed young adult’s cancer journey and health outcomes. b-present is on a mission to improve the experience for both young adults with cancer and their supporters. 

“Supportive friends are a huge untapped resource.” 

Young adults diagnosed with cancer are required to press pause during such a pivotal time in their lives and often do not receive consistent support, leading to isolation and poor quality of life. The health care system is often at capacity, and caregivers are stretched to their limits. Friends have this incredible opportunity to provide some relief to their friend with cancer and the people who care for them—finding the time and making time to be present with your loved one has a tangible impact on your friend and the support network. And remember, you don’t need to do something big to make a big difference. 

Every person has the potential to provide the support and love that is needed during this difficult time, and yet isolation is still a problem. So what’s the problem? Inexperience? Fear? No time? We find all kinds of excuses not to stay connected. The challenge is to turn that response on its head, get out of your own way, and lean into the fear, self-doubt, and the awkward unknown. 

Remember…

The experience is often new for everyone, so take comfort in knowing you are in it together and finding your way. Try not to get hung up on the perfect support experience. Instead, stay authentic to your relationship, and accept that there will be imperfections and mistakes along the way. Have patience and be kind to each other, find forgiveness when mistakes happen, and keep moving forward together. The rewards will be many, but the best will be the lifelong bond and stronger relationship that grows out of overcoming adversity together. 

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