Author: b-present Team

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:

The Sibling Dynamic During Cancer

Posted on by b-present Team

“Sisters and brothers are the truest, purest forms of love, family and friendship, knowing when to hold you and when to challenge you, but always being a part of you.” –Carol Ann Albright Eastman

For young adults diagnosed with cancer, life is upended, and dreams are put on hold at a time when adult life feels as though it is just getting started. Cancer also has an ability to extend beyond the patient to include the siblings and family as the entire family unit shifts into survival mode, with all attention focused on the young adult with cancer. 

Siblings, in particular, often feel the weight of a cancer diagnosis and feel the need to mask their emotions in order to be strong for their family. They may feel overwhelmed as their own social and emotional needs are sidelined to take on additional chores and responsibilities at home and in school. Anxiety, anger, isolation, abandonment, resentment, and hopelessness are just some of the feelings that may arise as the dynamic of relationships change throughout a cancer diagnosis and treatment. 

The sibling dynamics of a diagnosis 

Julianna was a 16-year-old just starting to get glimpses of freedom when her world stopped on a dime due to her cancer diagnosis. It seemed like her newfound freedom was immediately recanted as she began to feel smothered by her well-intentioned parents and friends.  

“Once I was diagnosed with cancer, I immediately lost all independence,” Julianna said, “I went from being a teenager who was starting to get all this independence to being treated like a baby. It was a really hard adjustment. I also was really craving that time with people my age, my friends, being at school – I lost a lot of time with those people.” 

Julianna is a twin, and her diagnosis completely turned her sister Alessandra’s life upside down too. 

“Where Julie feels that she was smothered, I feel the opposite. I feel I was pushed to be extra independent. We were going through this life change where we’re getting ready for senior year, getting ready to go to college. Julie talked about being excited to drive, and I ended up being the one driving but mostly to and from the hospital for doctor’s appointments. I became her transportation as opposed to me driving to a friend’s place.” stated Alessandra. 

Both Julianna and Alessandra expressed feeling isolated after the diagnosis. 

“You can have all the support, but if it’s not the people that you want [peers], you still feel very isolated.” said Julianna. 

When youth can’t verbalize their feelings, they begin to feel isolated.

Julianna and Alessandra are not alone in their feeling of being isolated. For the Wagner family, Judy’s son Jackson was diagnosed at age 16 As a parent to an adolescent or young adult that was diagnosed with cancer, she knew that her children were not getting the support they BOTH needed from her.

When Jackson was diagnosed a switch flipped. “I needed to be by my child 24/7. This is what I needed to do as a mom.” Judy stated. While longing to be with her newly diagnosed child, she felt the guilt of not being there for her younger daughter, Hannah.

“I was so torn being there with Jackson and not being with Hannah because she was suffering too. I knew where I needed to be, and that was in the hospital. I remember feeling so not able to be there for both my kids, and that tore at my heart like you can’t believe.”

A cancer diagnosis changes sibling dynamics.

An unequal split of time, attention, and energy leads to bitterness and ultimately strain to a relationship—this was the case for twins Julianna and Alessandra. 

“My perspective was never asked about. It’s always, you know, how’s your sister, how’s Julie doing, how is Julie doing with her diagnosis, etc. I kind of built a little bit of resentment or bitterness towards Julie.” shared Alessandra.

“Our parents tried to treat us equally most of the time, and then she started not being treated equally, and I could get away with a lot more because I was sick. If I was cranky, or rude, or cussed, or said no, it was acceptable.” replied Julianna.

“Even though there was a lot of tension and we argued a lot more during that time, we did get closer. She would come after school to spend time with me, and I felt like my sister was the only person who treated me normal. I appreciated that she provided me with some sense of normalcy, especially when a diagnosis kind of changes everything in your life.” said Julianna. 

How can teens get support after a sibling’s cancer diagnosis?

While a cancer diagnosis completely alters the family’s way of life, everyone in the family (especially siblings) needs a safe space where they can feel heard and supported. For siblings, it can be easy to diminish your feelings and challenges, but advocating for yourself when you need a break, help, or support will help you keep a sense of self and allow you to b-present for your sibling when they need you most.

Our b-there program provides post-diagnosis support for you as a sibling or family member. Take a look at our resources to take care of yourself first so you can provide your loved one with the support they need. In many cases, therapy can be a great way for all family members to express their lived experience and have an outlet to feel seen. 

Cancer’s impact extends throughout and beyond the family, and finding ways to express your feelings and emotions is key to maintaining the relationship dynamics between your siblings during this time. 

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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.

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

Posted on by b-present Team

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

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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Everything You Need to Know About the LGBTQIA+ Cancer Community 

Posted on by b-present Team

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 Institute, National LGBT Cancer Network, Escape, Queering 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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Improve Your Conversations With Active Listening

Posted on by b-present Team

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

Posted on by b-present Team

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

Posted on by b-present Team

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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