Supporting AYA Cancer Patients Impacted by the Overturn of Roe vs. Wade

Effects of Roe v. Wade Overturn on AYA Cancer Patients

Here at b-present, we boldly and proudly support our adolescent and young adult (AYA) cancer community. We are committed to ensuring the survivors we work with feel seen, heard and less alone, and have access to the support and resources they need to navigate their experience –on their own terms– during treatment and beyond. The Roe v. Wade decision has created new challenges within the community that we are only beginning to understand. It has challenged organizations to take a hard look at their mission and values to navigate the messy, sometimes uncomfortable, conflicted, emotional discussions to decide where they stand, often in the face of their own personal beliefs. We respect one another at b-present,  hold space to listen and feel heard, and are proud of our commitment to the AYA cancer community.  

To the AYA cancer community that is hurting right now in the wake of the Roe v. Wade decision, we stand with you. We will continue to advocate for you through education and information that creates awareness, empathy, and advocacy within your own support network for the new and difficult challenges you face as a result of this ruling. This is our first step in offering that support. 

For supporters who may be unaware of how this decision may affect loved ones with cancer, we’re here to educate and support you, too. Being a good supporter does not require you to change your beliefs or who you are. Providing support does entail listening to understand what your loved one is going through, and standing with them so they are not alone during this difficult time. Some AYA cancer patients and survivors will need your support now more than ever, so here’s what you need to know:

As noted by the National Coalition for Cancer Survivorship (NCCS), “access to quality care begins with open and candid communication between patients and physicians about the patient’s diagnosis, underlying health status, comorbidities, goals of treatment, and medically appropriate, evidence-based treatment options. For some cancer patients, doctor-patient communication and shared decision-making will include consideration of pregnancy, fertility, and abortion. The overruling of Roe v. Wade and actions by the states after the decision will limit access to appropriate care and stifle open communication between health professionals and cancer patients that supports patient-centered decision-making and care.” 

At Diagnosis

Being diagnosed with cancer while pregnant is so many people’s worst nightmare, and according to the American Cancer Society, this nightmare occurs in “up to 1 in 1,000 pregnant women each year.” In considering which medical approach to take for cancer treatment, pregnant patients and their healthcare professionals must additionally weigh the risk of treatment on fetal development if the pregnancy is continued.

While there are treatment regimens for some cancers that are possible during pregnancy, there are other treatments that are either not safe during pregnancy (such as chemotherapy during the first trimester and radiation), or there isn’t enough data to attest to their safety during pregnancy. This can leave some pregnant patients with heart-wrenching decisions to make: terminate the pregnancy that was likely wanted or delay cancer treatment at the risk of their cancer growing, spreading, or becoming untreatable. Now, in many states, patients are losing the ability to have these conversations and decisions with their healthcare providers—forced to prioritize a pregnancy over timely and evidence-based care to improve their cancer treatment outcomes.

 

During Treatment

While most people won’t actively try to get pregnant during cancer treatment, accidents happen, and pregnancies can occur. These patients may now be forced to adjust or dangerously delay their cancer treatments. Additionally, there are concerns among the medical community about the implications of the overturn of Roe v. Wade on the use of medications that can cause birth defects when terminating affected pregnancies is no longer an option. There have already been reports of individuals capable of becoming pregnant facing barriers to receiving their methotrexate prescription, which can treat numerous diseases and certain cancers.

 

Fertility Preservation & Family Planning

It’s no secret that cancer can steal a person’s fertility, but did you know that it can be difficult for cancer patients and survivors to adopt children? Some adoption agencies require the patient to be in remission for five years and to provide a recommendation from their oncologist that they are not at high risk of recurrence in order to even be considered as an adoptive parent, and even then, people have reported it can still be incredibly difficult to get approved. That leaves fertility preservation and IVF as the only option for many cancer survivors to start a family.

But if states define life as the point of conception, IVF and fertility preservation could be considered illegal. These procedures require the physician to discard unviable or extra embryos that they’ve collected in this process, which could be considered a termination of life in states where life legally begins at fertilization. This decision could drastically impact cancer survivors struggling with infertility who wish to have children. 

 

How to Support

Be present for your loved ones who are currently affected by the overturn of Roe v. Wade. Actively listen to what they’re going through, what pain and grief they may be feeling, and hold their hand through it. Don’t try to provide solutions unless they ask for them; just listen and affirm that yes, this really does suck, and their feelings are completely valid. 

 

Resources

If you are interested in learning more, we encourage you to seek authoritative resources to better understand the health care implications and real stories within the AYA cancer community.  Read about the impact of state policies, the compiled list of responses from  U.S. cancer centers, advocacy groups, professional societies, and medical journals, and the position of AYA cancer advocacy organizations have taken concerning the impact of the Roe v. Wade decision on the young adult’s ability to navigate cancer treatment and survivorship on their terms.

For free, phone-based counseling to offer compassionate, unbiased, nondiscriminatory support, including faith-based non-abortion support: All-Options

If you or the person you’re supporting are seeking information on where to access a legal abortion, this site helps you find a clinic and does not save user data: INeedAnA.com

To learn more about how to identify regulated, licensed, and credentialed facilities to support safe family planning: Healthline

For a free, confidential helpline where you can get legal information regarding abortion access: ReproLegalHelpline.org

For financial and logistical needs regarding abortion access: National Network of Abortion Funds

To join advocacy efforts to improve abortion access: Bans Off Our Bodies

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

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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Everything You Need to Know About the LGBTQIA+ Cancer Community 

This June, in honor of Pride Month, we are partnering with Escape, an organization created to provide a sense of Escape for LGBTQIA+ Adolescent and Young Adult Cancer Patients, Survivors, and Caregivers, to amplify awareness for LGBTQ Cancer Awareness Week. 

 

LGBTQ+ Cancer Awareness Week

Information on the impact of cancer on the LGBTQIA+ community is limited, and this week (the second week of June) is to highlight the need for comprehensive LGBTQIA+ cancer support services and care. LGBTQIA+ stands for Lesbian, Gay, Bisexual, Transgender, Intersex, Queer and/or Questioning, and Asexual and/or Ally. Adolescents and Young Adults make up the majority of LGBTQIA+ Openly Identifying individuals in the USA.

LGBTQ+ Living With HIV Increase Risk of Cancer 

During the early ’80s to ’90s, a whole generation of LGBTQ+ elders was lost due to the lack of support from the US government or institutions that were supposed to help. The LGBTQ+ community had to rely on each other for support, education, and survival during the HIV/AIDS pandemic. The medical trauma continues today as we continue to fight for access to adequate care. For those living with HIV having access to gender-affirming medical care to prevent the risks of developing cancer is critical. Since HIV attacks the immune system, it’s important to detect cancer risks early through regular check-ups and cancer screenings.

We are all connected and must do our part to support each other. Be informed, learn about how we can help each other, and address barriers to medical care. 

Grief and Loss Among the LGBTQ+ Cancer Community 

Navigating cancer is already hard and can be even more difficult without community support or appropriate care. Support through grief can look different for the LGBTQIA+ cancer community. LGBTQIA+ people experience a loss of community due to community rejection or rejection by friends and family and multiple bereavements, leaving them isolated during a cancer diagnosis.

If you are currently supporting an LGBTQIA+ person grieving the loss of an LGBTQIA+ loved one who has passed from cancer, be sure to validate their feelings and provide a shoulder to cry on. They deserve to feel safe, cared for, and seen fully for their wonderful, authentic self as they process the loss and honor the memory of their loved one.

The Transgender Cancer Community

Transgender youth are being targeted in the United States, as the challenges of accessing gender-affirming care are becoming more and more difficult due to anti-trans legislation being passed nationwide. Insurance companies have been granted authority to choose what is covered in their plans, making treatments or procedures like gender-affirming surgery (not covered by insurance). Cancer preventative care has also been denied to individuals who have had their gender marker removed. While we continue to fight for proper representation and awareness, there is still much that has to be done to change the care given to transgender youth diagnosed with cancer. 

 

Self & Community Care

As an LGBTQIA+ person, self-care may take more intention due to additional stressors like the lack of support, rejection from friends or family, and discrimination from healthcare professionals or institutions. In addition to that, being diagnosed with cancer can change the way an LGBTQIA+ person practices self-care. Like allowing themselves to accept their body can’t physically do what it was able to before cancer.

Community care is a huge component of self-care because, oftentimes, having the right people around us is exactly what is needed. We will all be impacted by cancer at some point in our lives, whether as a patient or a supporter. We must help each other, knowing we will need to lean on others in the future. 

 

Understand what it means to be an LGBTQIA+ patient with cancer

It’s important to learn more about the challenges and health disparities most LGBTQIA+ face due to the lack of knowledge and awareness within the healthcare system for LGBTQIA+ community members.  There are many organizations out there like The Fenway InstituteNational LGBT Cancer NetworkEscapeQueering Cancer, and so many more that have resources available for cancer patients who identify as part of the LGBTQIA+ community.

Cancer can happen to anyone, and sexual orientation and gender identity should not prevent anyone from getting adequate and appropriate support.

One of the greatest challenges most LGBTQIA+ face is the lack of comfortability, affecting overall experience and health. This community often struggles with sharing personal and vital information for fear of discrimination, trauma related to treatment, lack of treatment due to unpleasant prior experiences, or inadequate/improper health care due to lack of knowledge around the LGBTQIA+ community. Not being appropriately treated or denied access to appropriate screening or check-ups not only increases the inability to treat an LGBTQIA+ patient because of a lack of trust and comfortability but also contributes to cancer patients’ health conditions worsening due to a lack of proper medical care. 

Thankfully there is hope, as much is being actively pursued to obtain long-term results that lead to better cancer care for the LGBTQIA+ community from screening, diagnosis, treatment, and beyond.

 

Talking Tips to Help you Avoid the Pitfalls as a Supporter

In cancer conversations, comments intended to express empathy or comfort can backfire when they are dismissive of the person’s situation, choices, decisions, or emotions.

Remember: 

  • It’s normal and natural to feel unsure about what to say. The fact that you feel uncertain means you care about your friend’s feelings.
  • Avoid commenets that are dismissive of their diagnosis, experience, how they are feeling, or their choices.
  • Only offer advice when asked.
  • Do your best to be mindful, but don’t over-filter what you say.
  • It’s important to own up to your mistakes. Apologize. Learn from it and then move forward. We are stronger together and better when we can learn from each other.
  • The best thing you can do is be present and aware of their physical and emotional state

 

Navigating Cancer with your Friend and Moving Forward Together

Finding out your friend has cancer can be scary and overwhelming but having a shared understanding of what’s ahead is essential so that you can best support your friend during treatment and beyond. Everyone responds differently. Your friend’s support may vary based on many factors: mood, treatment, and care plan. Remember to always respect their privacy.

Connection, support, and normalcy are the things your friend needs from you; learn how your friend wants to be supported. Remain authentic, and remember that the diagnosis has not changed who your friend is on the inside. Your friend won’t always know what to ask for, just listen and provide a safe space for them to process. 

Help comes in many forms, so find positive and meaningful ways to make their day better. Make sure to establish a support network for your friend so that you can stay consistent, coordinated, and connected, as support is vital to your cancer friend’s quality of life. Don’t forget to take care of yourself too. Make time to recharge, heal, and keep your mental health in check by asking for help from a therapist, friend, counselor, trained social worker, or other trusted confidant (always remembering your friend’s privacy wishes). Make the most of every moment and be present. 

 

Learn More About How You Can Support 

Educate yourself on how to support a loved one with cancer better. Check out the different organizations specifically curated to help support LGBTQIA+ cancer patients and LGBTQIA+ caregivers and how you can be a part of the progress. 

 

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Sources: 

Improve Your Conversations With Active Listening

Have you ever been in a conversation and thought to yourself, “Wow, this person really hears me, understands me, and supports me?” We have. It’s those moments of genuine connection that we cherish so dearly. But great conversations take practice and dedication from both parties. If you’re looking to level up your conversation skills and nurture your relationships, practice and master active listening—giving your full attention to the speaker and focusing on what is being said rather than just passively ‘hearing’ them.

Why practice active listening?

It earns the speaker’s trust and helps you to understand their situation. Active listening consists of a desire to comprehend and offer support and empathy to the person speaking. Be fully present, engaged, and immersed in what the other person is saying. Prepare to listen, observe what verbal and non-verbal messages are being sent, and provide appropriate feedback to show attentiveness. 

Unhelpful listening habits:

  • Interrupting
  • Not making eye contact
  • Rushing the speaker
  • Becoming distracted
  • “Topping” the story
  • Forgetting what was said
  • Daydreaming

How does active listening benefit your relationships?

It allows you to ask questions so you can fully understand where the other person is coming from and respond with empathy. And, it validates the person speaking and makes them want to continue talking to you.

Listening actively to a friend going through a difficult time is a valuable skill because you will be less likely to jump in with a “quick fix” when the other person just wants to be heard. It’s one of the best gifts you can give your loved one.

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Young Adult Cancer Education — Events and Activities

b-present overcomes the stigma of cancer through education, community dialogue, and experiences that improve empathy and compassion and lead to action. These events and activities create a shared understanding of the young adult cancer experience and the impact of presence.

Community Events and Workshops 

These events provide a safe and inclusive environment to learn about the young adult cancer experience and the barriers to providing good support. Diverse perspectives and thoughtful discussion leads to a roadmap for change that best meets the community’s needs.

Partner Campaigns

Our partner campaigns create fun and rewarding activities that support others in need. Participants learn presence comes in many forms, has a tangible impact, and is within their reach.

School Events and Activities 

The earlier we learn about the importance of presence, the better prepared we are when called on for support. In 2021, we will be introducing our school outreach program to educate students about the needs and challenges of the AYA cancer community. In addition, we invite students  to work together to create their own events that promote connection and support for each other and for  the young adults in their community.

Education and Outreach at Public Events

We participate in public events throughout the year. This includes virtual conferences as well as in person meetings and events. 

Young Adult Cancer Education — Events and Activities image 1

Being Present In the Community – Highlights

Connecting with our community is an inspiring and eye opening experience, and we feel so honored to be connected to such an amazing group of people. Highlighted below are a few of our awesome events over the last couple of years. We can’t wait to share more about the activities we are planning for the future. Stay tuned and we hope you will join us! 

Inspiring The Support Community Through Film and Conversation

It is not just about watching a film together. It is about immersing ourselves in the stories of young adults going through cancer,  and having the community conversations that help us develop a deeper understanding of how a cancer diagnosis upends each young adult life. Only then can we have a better appreciation how vital social support is to this age group. In 2019, our first movie premiere and community event  featured Cancer Rebellion , and we were so grateful to have film director and survivor Hernan Barangan with us to share his insights and answer questions. You should have heard the cheers for Hernan! Looking forward to more opportunities like this when the world opens back up.

Young Adult Cancer Education — Events and Activities image 2

Workshops with Purpose

In November 2019, we hosted the first-ever workshop focused on improving the quality and impact of support for young adults with cancer. This event brought together medical professionals, cancer survivors, supporters, and like-minded nonprofits to discuss the young adult support network. First we discussed the challenges, needs and gaps unique to each phase of the cancer experience (diagnosis, treatment, and beyond treatment).  Next we identified the programming needs for the future. The final outcome of the workshop was a prioritized set of recommendations and next steps to be addressed in 2020 and beyond.

Young Adult Cancer Education — Events and Activities workshop image

In November 2020, we partnered with Elephants and Tea and Stanford AYA Advisory Council to conduct a writer’s workshop focused on communication and getting the needed support after a cancer diagnosis. This event included cancer survivors, supporters and health professionals, and we learned the many perspectives on sharing the news and the importance of clear communication and setting boundaries. Sometimes these conversations are hard to initiate between patients and their community of support. We will be looking at developing tools that break down the barriers and facilitate these important connections.

 

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How To Be A Better Supporter Q&A With Jessica Florence

Tell us a little bit about yourself, pre and post-diagnosis.

My name is Jessica Florence. I am a 4th-year architecture student at Florida A&M University. In 2016, I was diagnosed with stage 3A breast cancer at the early age of 22. I am HER2+ with no family history of breast cancer. Four years later, I am now diagnosed with stage 4 advanced metastatic breast cancer. A lot has changed since my first diagnosis. I am more aware of the importance of time and patience. I lived with a lot of depression and anxiety so I had to get into a routine of diet and exercise, studying, and praying to get me through. My goal is to continue to educate others on breast health and to become an architect.

Tell us about your cancer experience.

I felt the world literally spinning when I was diagnosed. I felt like I wasn’t being taken seriously because, according to doctors, I was “too young” to have breast cancer. This led to a lifelong diagnosis of breast cancer that could have been prevented if the doctors would have just listened. I’ve also endured systemic racism during my journey. It’s quite frustrating because black patients with breast cancer who are in poverty or isolated lack funds and support. I was introduced to a hyperbaric chamber by a family member who owns a recovery center to try a holistic approach to healing. Cancer cannot survive in oxygen, and the chamber or (HBOT) involves breathing nothing but oxygen. Its main use is to treat diving-related illness, but it may help heal people with other conditions such as cancer. I asked my doctor why it wasn’t recommended. His response was because it was too expensive, as if I couldn’t afford it or I had no way to pay for the treatment.

What never failed to make your day during treatment? 

A lot of different things can make your day or make you smile during treatment. It could be as simple as a card, a warm hug (pre-pandemic), care packages, or prayers. It never failed to make my day during treatment.

If you could tell new supporters one thing NOT TO DO, what would it be?

I would tell new supporters not to say, “I’m sorry this happened to you” or “let me know if you need anything” because most times, you’re already feeling bad for yourself and afraid to ask anyone for help. Also, with cancer patients, you can’t take anything personally. If we are not up to talking or hanging out, there’s always a good reason, but don’t hesitate to still ask and offer the invitation or simply ask if the person is okay.

If you could tell new supporters one thing TO DO, what would it be?

If I could tell new supporters one thing to do is to educate yourselves on cancer and how it affects people mentally, physically, and emotionally. You will then know what to do and say to someone going through cancer.

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My Friend Has Cancer?! Part 3 – The Power of Silence

Sometimes, saying nothing says it all.

 

When you are with a friend that is dealing with cancer, know there will be moments of silence. Embrace those moments, learn to become comfortable with them, and realize that sometimes silence is what your friend wants — with YOU by their side. The most impactful thing you can do for your friend is to be there for them. If it means sitting in a quiet room reading books together, going on a walk around the hospital, or having a movie marathon, know that it gives your friend strength to see that they aren’t doing these things alone. Silence is an opportunity to reflect, empathize with what your friend is going through, and appreciate your friendship. It assures them that you are in this for the long haul, through thick and thin.

The My Friend Has Cancer?! video series by Hernan Barangan offers strategies for friendship during cancer, with specific examples from survivors’ and friends’ real stories.

About Hernan Barangan

“I was 15 when I went through treatment for Acute Myelogenous Leukemia. Somehow I beat it – but I felt so much was wrong about my experience. Things that could have helped other young people survive were missing.

With hopes that I could improve the cancer experience for others, I started making short films about it. I wanted to show other patients that they are not alone — and to show the world that there are young people fighting cancer all around them. But I knew that in order to do this, I would have to hit the road. So I packed up my gear and set out on a trip that would take the next year of my life to complete.

I went to all 50 states, drove 25k miles of road, and collected 28TB of footage. But more important than that – I met 90 great people who I now call my friends. I hope you enjoy their stories as much as I enjoyed this journey.”

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Examples of What to Say When Someone Has Cancer

In cancer conversations, comments intended to express empathy or comfort can backfire when they are dismissive of the person’s situation, choices, decisions, or emotions. We designed our Talking Tips to help supporters avoid these pitfalls. Our Talking Tips compare unhelpful comments that, believe it or not, have actually been said to a someone with cancer with an improved and more mindful way of phrasing the sentiment.

 

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“I’ll be here to support you.”

Talking to a friend with a life-threatening illness can be intimidating, stressful, and even awkward. It is often hard to find the right words to say, but remember, your friend feels just as unsure as you about what to do or say.

One thing that is unhelpful is making promises you can’t keep. Instead, start by letting your friend know you will be there for them, and then you can figure out what’s next…together. They need you to b-present now more than ever.

 

 

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“I’ll tell you about my day, and then you can tell me about yours.”

Everyone has their struggles. Holding back information because you think it’s not worthy can make the conversation feel abnormal and frustrate the other person. They just want to have regular chats like you did before they were diagnosed. Just b-yourself, don’t be afraid to use humor, and when it comes to steering the conversation, let them be your guide!

 

 

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“I am going to the store. What can I get you?”

A lot is going on the first few weeks after the diagnosis. Even though it may seem helpful to say something like, “Let me know if you need anything” to the patient or caregiver, it isn’t. It puts the burden on them and gives them another task they need to perform before they can receive help.

Instead, offer tangible things on your own and follow through. For example, offer to set up a meal train, provide rides, do laundry, get groceries, sit with the patient while the primary caregiver takes a break, etc.

Remember, it is humbling to ask for help and is sometimes hard to know what to ask for at the beginning, which can often lead to added stress, so try not to be too pushy. There may be some resistance to accept help at first (the “I don’t want to impose” feeling). Give the patient room to say no, but reinforce that it is no trouble and you are happy to help. As they get more comfortable asking for and accepting help, it will be easier as a supporter to pitch in where needed.

 

 

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“I can’t imagine what you are feeling. How can I help?”

Expressing empathy by sharing stories about someone you knew who had cancer and passed away or had severe complications is not helpful. Knowing someone else’s cancer experience doesn’t mean you know what your friend is going through. Negative stories are upsetting, and often cause the cancer patient to expect the worst instead of being hopeful. So what do you say?

It’s okay to admit you have no idea what your friend is going through, so start there. Then ask how you can help them get through this. If they don’t know, then just listen. If they are looking for inspiration, help them find it. If they have questions, write them down so they can ask the doctor later. If there are important questions or resources you think might be helpful, share those when the time feels right. Help comes in many forms. Work with them to find positive and meaningful ways that get them through the day.

 

 

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“Now that treatment is over, what’s next? I want to stay connected.”

Just because their treatment is over, doesn’t necessarily mean they are “cured.” Every cancer is different, but cancer survivors will still be in a maintenance period that could last months or years. ⁣⁣After treatment, survivors AND supporters will be re-adjusting in different ways. There will be a sense of relief and a desire to get life back to “normal,” but there will also be anxiety and post-traumatic stress. This transition can feel even more lonely, so remember to continue to be there for each other. Offer to meet for coffee, go for a walk together, or watch the sunset.
⁣⁣
Being a good supporter means being present and staying connected through good and bad times. If you are finding it hard to make time, add an event to your calendar that reminds you to reach out. It will mean so much!

 

 

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“Yes, you look different, but it does not change who I see.”

No, it’s not just hair. It is a part of one’s identity. It is a way to express ourselves. Most of us have the freedom to style our hair to look the way we want it to look, and when you all of a sudden have that freedom taken away from you, it can be devastating and make one feel vulnerable, insecure, and uncomfortable. ⁣

Cancer patients are already going through the most challenging time in their lives, and hair loss adds to their concerns about being treated differently. When you see your friend without hair for the first time, it will be emotional, but try to match their emotions. If they cry, it’s okay to cry with them. If it seems like they want a regular hangout, hug them, sit back, and follow their lead. Remind them with your words and actions that even though they have lost their hair, it has not changed how you see them.⁣

Avoid comments like, “It will grow back.” While it might seem like these words are encouraging, it can make your friend feel like you are disregarding their emotions. Remember, they are constantly reminded of their illness every time they look in the mirror, and yes, even though hair can grow back, it could take years.

Also, b-aware of your friend’s personal space and comfort level. Initially, they may not want visitors until they have gotten used to their new look, but you can still call or text them and give them a chance to talk about how they are feeling. Once they are ready for visitors, they may prefer to wear a hat or wig when they are around others, so make sure not to drop in unexpectedly. Give them the time to prepare so they are comfortable.⁣

Whether it is giving them space, going with them to buy a hat or wig, connecting with them online, or simply just listening to them, the best thing you can do is b-there for them in ways that feel right at that moment. As long as you are there for them, no matter if that’s in person or online, they will always appreciate your unconditional support.

 

 

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“I’ll be here to help you through this.”

Have you ever found yourself in a painful or confusing situation with a friend, and in your struggle to find the right words to say, you settle for “everything happens for a reason”? And…that’s where the conversation probably ended because, well, what could one say in response to that?⁣

Instead of engaging in a potentially helpful and supportive conversation, we can unintentionally shut it down…covering up their pain with a blanket statement because we feel uneasy. If you want to be the best supporter you can be, learn to sit with your friend in their pain. Don’t let your discomfort get in the way of your ability to b-present for them. Assure them that you will always be a part of their support squad, through the good times and the bad.

 

 

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“I see you are wearing a mask. What activity would be best today?

Have you ever seen someone wearing a mask, and thought to yourself, “I wonder what they have that could make me sick?” or “I’ll wait for the next elevator, I don’t want to be close enough to get whatever they have.” Yes, these situations have happened, and it can be very upsetting for a cancer patient that already feels different and isolated.

We often associate someone wearing a mask with a contagious disease, but did you know that when cancer patients wear masks, it is not to protect you from them, it is to protect them from their surroundings. Cancer is NOT contagious, so avoid treating someone with cancer like they have an infectious disease. Cancer patients undergoing treatment or recovering from treatment will often have compromised immune systems. This means they are more vulnerable to having severe reactions to common illnesses because their immune system is not strong enough to fight. For them having a fever doesn’t just mean taking aspirin to reduce the symptoms, it means a trip to the emergency room to avoid a life-threatening situation. Wearing a mask is part of their defense in public places.

So what should you do? When you see them with a mask, look past the mask, but don’t ignore what it might mean. Don’t make a big deal about it. Instead, follow their lead. When out in public, ask if there are any limits to activities or places they can go. Don’t make them feel bad for being cautious. Germs are their enemy, and they need to be careful, but they still want to do normal activities so help them find an option that works. Also, if you know you have a cold or are just getting over the flu, let them know, and it may be best to reschedule for another day, especially if they are in the hospital.

Being a good supporter means understanding your friend’s situation and not making them feel bad about the things that they have to do or wear for their own health and safety. This includes looking past the mask and seeing them as the incredible person they are and respecting their limits. Remember, the only thing wrong with them wearing a mask is you can’t see their beautiful smile!

 

 

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“Tell me about your treatment so I can help you through this.”

Cancer patients are fighting for their lives. Do you think they really want to do chemotherapy or radiation or take the long list of pills to manage the side effects? No way. ⁣Cancer treatments are complicated, and every patient’s treatment will be different depending on the type of cancer they have as well as their own health and history. They have consulted their doctor and other specialists and made their decision.

Unless they ask for your input, it is not helpful to judge them for their choices, make general upsetting statements about treatment, or suggest alternatives that could impact their life. Imposing your beliefs and opinions will only place doubt and worry in their mind, and lead to frustration that you are not supporting them. So what should you do?

Listen first. If they want to talk about their treatment, take the opportunity to learn more about what it is, how long it will last, and what they will be going through during each phase. Then find ways to be supportive. ⁣If they have questions about the treatment, write them down, so they remember to ask the doctors later. Ask how you can help make them comfortable or reduce their stress during their difficult treatments. Determine if there is a favorite item or activity that will take their mind off the side effects. There might be an errand or chore that they can’t do that is causing stress, so offer to do it for them. Sometimes just hanging out with them will reduce the stress, knowing they are not alone during an uncertain time.

Every day will be different. The more you understand about what they will be going through and how they feel about it, the better prepared you will be to support them in meaningful ways that bring comfort and reduce stress.

 

 

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“I want to give you a break. When is a good time?”

A reminder that the primary caregiver needs our support too. They are not only experiencing high levels of stress and anxiety about the future health of their loved one, but also the future of their family unit. The primary caregiver has to be a patient advocate for an illness they knew nothing about before diagnosis and providing care and comfort in the face of unknown challenges. They can become isolated and feel they have no one to talk to for encouragement, answers, or just let off some steam. This adds to the daily stress of keeping the house and finances in order, going to work or school, and caring for the rest of the family, including pets. ⁣
Being supportive of the primary #caregiver is important to their health and well-being, so find things that will give them a physical or emotional break. It can come in many forms, like…⁣

– Running errands
– Helping with household chores
– Bringing meals
– Bringing requested entertainment for a welcome lift
– Staying with the patient while the caregiver takes some needed “me” time

And most importantly, just listening. Give the caregiver a chance to talk and process their feelings. ⁣Whatever support you offer, ensure it reduces stress. Remember, directing help or entertaining visitors can sometimes be stressful and don’t take it personally if they decline. Agree to a fixed amount of time, so they can plan other activities, and be sure to re-confirm on the day of the event since issues will come up at the very last minute.

Be flexible with your visit, and wrap it up if it looks like they are ready for some space. Being present for the caregiver, and being mindful of their emotional and physical state when we offer support will ensure the best and most positive impact for them. It will give them the boost they need so they can continue to b-present in the best way possible for loved ones.

p.s. Don’t forget to acknowledge the primary caregiver’s sacrifices. They have given so much of themselves to bring comfort to our loved ones, and they need to hear out loud that those sacrifices are noticed and appreciated.

 

 

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“I’m so glad I get to hang out with you today!”

If your friend is dealing with a life-threatening illness, saying “I feel so sorry for you” through your words and body language is unhelpful and discouraging. Ditch the pity party and figure out how to bring normalcy back into their life. Find an activity you used to enjoy together and know will give them a lift. Often the actions and words that are most appreciated are the ones that make them feel more like a person less like a patient.

 

 

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“You are not alone. It is okay to be feeling what you are feeling.”

We all go through tough times, and people help us through them. When chatting with a friend who is struggling with their mental health, it is crucial to provide a non-judgemental space where they can be open about how they are feeling. ⁣

A few tips:

  • Don’t second guess their feelings. While you may be happy to chat and offer support, chances are you aren’t a trained counselor. Try not to make assumptions about what is wrong or jump n too quickly with your own diagnosis or solutions.⁣
  • Let them lead the conversation and don’t pressure them to tell you anything they aren’t ready to talk about. Talking about their struggles with someone else takes courage and trust. ⁣
  • Listen with no distractions. Your friend wants to feel heard. Repeating what they said back to them ensures them that you understood and lets them know that you respect their feelings. ⁣
  • Keep questions open-ended. Try to keep your language neutral. Give the person time to think about and answer your questions, but try not to bombard them with too many questions.⁣
  • Offer to help them find professional support. You can offer to the doctor with them or help them talk to another friend or family member. But try not to take control and allow them to make decisions.⁣

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How To Stay Connected To Friends From Afar

Friendships are one of the most important aspects of our lives, and staying connected when isolated is essential for our mental health. Whether you have a friend that is stuck in the hospital or a long-distance BFF, remember there are tons of ways to b-present and stay connected to friends from afar. Video chats like FaceTime, Zoom, and Google Hangouts have been our favorite way to check-in with family and friends, but have you tried out these fresh new ways to connect?⁣

Game Together

GameApart takes game night virtual. You can play board and card games online with your friends and family via Zoom, Google Hangouts, or Facebook Messenger. No matter where you are, you’ll never miss game night again!

Jackbox Games allows you to play with up to 10 friends in front of a virtual audience of up to 10,000. Just hop on a video chat service (like Zoom or Google Hangouts) and start a game on your laptop. You can use the screen sharing option so that players you’re on a call with can see the game. Everyone can play along on their own mobile devices by using a browser and going to Jackbox.tv.

Scattegories is a classic fan-favorite, and it is available to play virtually for free. Just download the app and challenge a friend via video chat.

Words With Friends 2 is for all the Scrabble lovers out there looking for a fun brain exercise with some company. 

Playing Cards website lets you invite friends to play board games and card games like chess, go fish, crazy eights, and any other card game using a standard 52-card deck. All movements are synchronized, and if you add in a video chat, it’s pretty much like you are playing them in real-life.

Ticket To Ride will virtually feed your and your friend’s wanderlust. It costs $7 to download for each person who wants to play, but building a virtual train ride across America is time well-spent with friends. Pair the game with a video chat, so it feels like you are on the adventure together!

Friendship Bingo keeps you accountable for staying connected. Loneliness is painful, especially when you are living with loneliness for a prolonged period of time. Putting your time, energy, and attention into your close circle of friends can help ease the feelings of isolation and bring back a sense of normalcy. It’s hard times like these that help us to appreciate the friendships we are lucky to have.

Watch Together

Netflix Parties is a fun way to watch Netflix shows and movies with your friends. There is a chat window where group members can comment and chat during the show.⁣

Facebook Watch Party allows the host to pick out a queue of Facebook videos and line them up for the party to watch together. The host invites friends (other friends can join later too), and they can see and hear each other, as well as comment on the videos. ⁣

Do a virtual workout together. There are tons of options when it comes to accessing quality fitness classes anytime from your laptop, tablet, or smartphone. The cherry on top? Many of them don’t require any special equipment! Check out virtual Zumba classes or YMCA360.

Live stream a concert Move the couch, put on your dancing shoes, and turn on the video chat so you can boogie together. Because everyone loves living room dance parties.

 

How do you stay connected to friends?

Let us know if we need to add any fun activities to this list!

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Talking Tips – How To Be There For A Friend With Cancer

Picture this. You are hanging out with a friend, and there is an uncomfortable silence. Your brain starts racing with things to say to fill the void. Then it happens. You say something insensitive out loud. You may instantly realize you screwed up, and regret your careless words. Or worse, you may be totally oblivious to the fact you said something insensitive, but you notice a sudden change in your friend’s expression and body language and think, “Uh, oh, what did I just say?”

In a perfect world, you would never say anything insensitive to hurt your friend’s feelings, but in reality, when there is an awkward situation where people don’t know what to say, they often say dumb stuff. 

 

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Where Did I Go Wrong?

In cancer conversations, comments intended to express empathy or comfort can backfire when they are dismissive of the person’s situation, choices, decisions, or emotions. We designed our Talking Tips to help supporters avoid these pitfalls. Our Talking Tips compare unhelpful comments that, believe it or not, have actually been said to a someone with cancer with an improved and more mindful way of phrasing the sentiment.

Unhelpful Things to Avoid

Below are some general landmines to look out for. Try to avoid them if possible.

  • Part of the Plan
    • “Everything happens for a reason.”
    • “You are only given what you can handle.”

 

  • False Empathy – I know someone
    • “ My ______ had cancer and they died!”

 

  • The One Up / Compare and Contrast
    • “My grandpa had cancer and that was much worse. You’ll be fine.”

 

  • Dismissive Comments
    • “At least it’s just cancer.”
    • “You should feel lucky it’s not stage 5 cancer.”  

 

  • Questionable Questions
    • “Are you going to die?”
    • “Don’t you feel like less of a man/woman now?”

 

  • You did something to deserve this
    • “You must have must have done _____ to get cancer.”
    • “You probably spent too much time in the sun.”
    • “If you changed your eating habits, this might not have happened.”

 

  • You Look Too Good
    • “You look good for someone with cancer.”

 

  • Be Positive
    • “Cancer is a gift.”
    • “You are so positive, you will be fine.”

 

  • Preaching Alternate / Safer Cures / Lifestyles
    • “Don’t do ___________ it will kill you.”
    • “If you only did ________ it would all go away on its own.”

 

  • Did you really just say that out loud?  
    • This is the catch-all category of comments that are just so off the wall random, ignorant, or cringeworthy that the recipient is in disbelief or speechless. 

 

Helpful Talking Tips

As you navigate your conversations, remember these talking tips: 

  • It can feel like you are walking a tightrope sometimes and it is natural to feel unsure about what to say. The fact that you feel uncertain means you care about your friend’s feelings. That’s good.

 

  • Avoid comments that are dismissive of their diagnosis, experience, how they are feeling, or their choices, and only offer advice when asked.  

 

  • Be present and aware of their physical and emotional state. 

 

  • It’s about being mindful of how you say something, not over-filtering what you say. 

 

  • If you have ever said any comments that fall into one of the themes above, it is never too late to apologize. Words like: “I just realized when I said _________ I was insensitive to your feelings/situation. I apologize and hope you will forgive me.”

 

  • If you mess up, own it. Be humble. Apologize. Learn from it. Move forward. 

 

We are stronger together, and better when we can learn from each other. Want to share your experience (anonymous if desired) to help others? We’re all ears and we’d love to share your cancer Talking Tip with our community. 

 

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