Tag: cancer support

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

Posted on by Aarushi Gupta

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

Milestones like:

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

 

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

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

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

Cancer in High School: The Statistics

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

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

(Source: Cancer.org)

 

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

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

The Diagnosis

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

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

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

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

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

Cancer in High School: The Experience

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

School Life

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

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

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

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

Isolation and Normalcy 

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

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

(Picture credit: Sana Moezzi)

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

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

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

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

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

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

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

Want more?

 

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

A Letter to Parents of a Young Adult Diagnosed with Cancer

Posted on by Abby Westerman

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

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

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

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

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

Parents, find a balance between giving care and giving space

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parents, watch for signs of financial stress and guilt.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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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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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Supporting Someone with Cancer While Putting your own Mental Health First

Posted on by Chiara Riga

May is Mental Health Awareness Month, and I’ve been loving seeing all of the honest conversations about mental health happening all around the internet this month! I’ve seen so many frank conversations about how cancer has changed patients’ mental health (for worse and for better!), and it’s helped me so much in feeling less alone as I share so many of those mental health experiences. One thing that I wish was talked about more, though, is mental health as a supporter of someone with cancer. Taking care of your own mental health should always be a top priority. You can’t pour from an empty cup, right? I wanted to share some ideas for how to put yourself first. 

Schedule in some “me time”

Think about what really helps you recharge. Is it a walk around the neighborhood? A good sweat session at the gym? A relaxing bath? Maybe it’s just laying in your bed doing nothing. Whatever it is, schedule it in. Physically put it on your calendar to ensure that you don’t blow it off – it can be so easy to treat things like this as a “nice to have” if you have the time, but recharging your batteries is incredibly necessary. By scheduling in time for yourself, you ensure that you prioritize it as important as it actually is. 

Talk to Friends

There are probably things that your friend with cancer will say to you that can make you anxious and stressed. Cancer is really anxiety-inducing, as is watching someone you love go through it. As I talked about in my Ring Theory blog, you obviously can’t talk to the patient or their close family about the anxiety you feel, but I bet that there are others in your life (or even in their life!) who share those same struggles and would love to talk about it with someone who gets it. Talk to friends who are farther removed from the patient than you are, and you may be surprised by what a load this takes off of your shoulders!

Therapy

This one goes along with the last one, and it probably seems obvious, but this is often the first thing to go when life gets busy. It gets seen as a luxury so often, but sometimes you need a non-judgmental person to talk to about all of this! Being a supporter of a cancer patient is HARD, and often there are thoughts you have about cancer or being a supporter that many would think you were a monster for saying. Honestly, we’ve ALL had those thoughts, and they’re 100% valid in the right setting. Talking through them with a therapist can be so helpful to clear your head and help you work through the trauma of your friend or family member having cancer.

Mindfulness or Meditation

I know that this one isn’t for everyone, but hear me out here. I was a skeptic too, but my work recently gifted all of us a year subscription to the Calm app, and I decided to give it a try. Things like a quick body scan or breathing exercises were such a great way for me to get a very quick moment of calm and me time when I have a few free minutes in my day. I’ve found that since starting to use the app and make it a point to be more mindful in my everyday life, my anxiety has gotten so much better, and I feel overall calmer. 

All of these are mere suggestions, and the most important thing is that you prioritize your own mental health in whatever way works for you. It may feel like you’re taking time away from the patient you support by focusing on yourself, but I promise you, we understand, and we want you to be able to keep living your life and taking care of yourself. We understand that cancer affects not just us but everyone around us, and we want everyone to care for their own mental health. So let go of the guilt (easier said than done, I know), and start taking some time to take care of yourself. I promise you and the person you’re supporting will feel better if you do. 

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Sympathy vs. Empathy vs. Compassion: Cancer Support and Where Each Fits

Posted on by Chiara Riga

Sympathy, empathy and compassion are likely all words you’ve heard used a lot within the cancer space. They might even be used interchangeably! But the truth is, they’re all different, and they each have their own unique role when supporting the cancer patient in your life. 

Sympathy

Sympathy is defined as pity or sorrow for someone else’s misfortune. Sympathy was likely one of the first things you felt when your friend or loved one told you they had cancer, but when it comes to expressing sympathy to the person you’re supporting, it can be complex. The last thing we as cancer patients and survivors want to hear is pity; it feels patronizing and will most likely make them feel worse. While sympathy is not something to be ashamed of feeling, it is an emotion that is best kept to yourself, or at least not shared with the person for whom you feel sympathy. Instead, channel those feelings of sorrow or pity into something more productive like empathy, compassion, and support. 

Empathy

Empathy is defined as being able to understand and share the feelings of someone else. Where sympathy is seeing your loved one with cancer’s experience from your own perspective, empathy takes it a step further to see their experience by putting yourself in their shoes. When your friend is going through something as serious and scary as cancer, your first reaction may be to relate their current experience to something you’ve gone through in order to relate to their feelings.

If you have never experienced cancer yourself, though, there’s no way you can truly understand what they’re going through. What you can do, though, is listen to what they are telling you and really take it to heart, rather than trying to assume things about what they feel. When supporting the cancer patient in your life, it’s important to show empathy by listening to how they feel rather than assuming how they feel. 

 

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Compassion

Compassion takes both empathy and sympathy and takes them a step forward; compassion is the understanding that someone is going through something incredibly difficult and then actively trying to alleviate the struggle they are going through. While sympathy and empathy both have distinct roles within the cancer support experience in their own right, we should all strive to be compassionate in every aspect of our support for our loved ones. There really is no such thing as good support without compassion. 

So what does sympathy, empathy, and compassion look like in practice?

Let’s say your friend had a PET scan a few days ago and they call you to let you know their results weren’t good and the cancer is growing.

The sympathetic response would be to shift your tone and body language to sadness, as that’s what her words make you feel, and tell them that you’re sorry for their PET scan results.

The empathetic response would be to shift your tone and body language to match their mood as you think about what they’re telling you about their feelings. An empathetic response would be to listen to their anger, fear, sadness, and frustration and tell them, “It sounds like this has been a really difficult day for you.”

The compassionate response would be to continue with your empathetic response by sharing their feelings and saying something like, “This has been such a difficult day for you today. Can I grab you dinner from your favorite restaurant to help you relax?”

It is clear that sympathy, empathy, and compassion all play a distinct role in your support of a cancer patient. Now that you know when each comes into play within the support experience, it’s time to start putting them into practice! 

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Ring Theory: The Ins & Outs of Sharing Feelings

Posted on by Chiara Riga

When your friend gets diagnosed with cancer, it can be hard to know what to say. We all know that cancer affects everyone around the patient, not just the patient. But when you center yourself in conversations about someone else’s cancer, you’re likely to offend them inadvertently. I recently learned about a concept that helps handle crises and I think all supporters of cancer patients should become comfortable with it: Ring Theory.

The Ring Theory

Ring Theory was a concept developed by a psychologist named Susan Silk when she had breast cancer. She found others around her consistently centering themselves in conversations about her cancer, something most of us with cancer have experienced. Through this experience, she developed Ring Theory as a technique to help others avoid making the same mistakes, and it applies to all crises you may encounter, not just cancer.

Start by drawing a small circle in the middle of a page and write the name of the person dealing with the crisis in the center. Then, draw another circle around that circle and write the name(s) of the people closest to the person in the center. Continue drawing concentric circles and writing names inside them as much as necessary, putting closer people toward the center and more distant friends and relatives in the larger outside circles. Now that you have your concentric circles, you have only a few simple rules: 

  1. The person in the center is the only one who can complain about whatever they want, to whoever they want. 
  2. The people in outer circles can complain as well, but only to people in the larger circles. 
  3. If you’re talking to someone whose circle is smaller than yours, you are only allowed to provide help and support. 

In essence, comfort goes inwards, and dumping goes outwards.

Ring Theory

Illustration by Wes Bausmith for the Los Angeles Times

This sounds very simple and something that everyone should know, but when a crisis occurs with someone you love, it’s often difficult to remember that you’re not in the center of it all. We all know that you would never tell a cancer patient that you weren’t prepared for how sick they look, but would you remember not to say that to their significant other, parent, or best friend? Maybe not. Ring Theory helps us put into perspective how the crisis affects everyone and gives you an idea of who you can dump your feelings on versus who you should provide help and support to. 

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Staying Connected Even When COVID and Cancer Keep You Apart

Posted on by Chiara Riga

COVID and Cancer—The Challenges

When you’re first diagnosed with cancer, it’s usually a time when everyone you’ve ever spoken to comes out of the woodwork to support you. MealTrains are started, flowers are sent, donations are given in your honor. But for those of us diagnosed or going through treatment during COVID, that support looks a little different.

I was diagnosed with metastatic breast cancer in September of 2020, right in the middle of the pandemic. I remember when I was first diagnosed, all I wanted was a hug from my best friends. Because of COVID though, I was forced to only see them outdoors, from a distance, with masks on. I was so grateful for their support, but I always wished that we could safely be close to each other. 

When I started treatment, it became even more difficult to spend time with friends. There were many times where my blood work would come back showing that my immune system was dangerously low, and that I shouldn’t be around others at all. Cancer is already isolating, but when you add COVID on to that, it can become even more isolating to not be able to see others in person.

With the surge of the delta variant in the US, these COVID precautions have become important for cancer patients again despite vaccinations. If you are trying to support your friend through cancer during COVID, here are some suggestions for safe things you can do:

covid and cancer

Plan Something Virtual

Some of my favorite times I spent with my friends while COVID kept us physically apart were the virtual activities we planned. I love games and have a very competitive streak, so we did a lot of virtual trivia and virtual escape rooms. It was always a fantastic time “seeing” my friends on the screen and playing something together like we would if we were able to be in person. These are just some ideas that I have tried, but the sky is the limit on virtual activities!

If your friend is into crafting, why not do a craft night together on Zoom? If they love to cook and still have an appetite, try a virtual cooking class through Airbnb’s virtual experiences! It doesn’t matter what you do, just knowing you’re thinking of them and are setting time aside to be with them will surely brighten their spirits. If you’re interested in some of the virtual activities I tried, here are my recommendations: for virtual trivia, check out Sporcle as they run live virtual trivia most days, often with fun themes, and it’s always a great time. For virtual escape rooms, The Escape Game has a variety of great options. 

covid and cancer

Outdoor Socially-Distant Activities

When cases were low in my area, and my blood counts cooperated, I loved spending time outdoors and socially distanced with my friends. We got really creative with how we spent time outside, from carrying a TV outdoors and having cozy movie nights under the stars (with masks on and our chairs spread out) to outdoor tea parties where we each sat at different tables and wore masks when we weren’t eating or drinking. This was about as close to a normal friend hang out as I could get, so I cherished this time so much and appreciated my friends for being willing to sit outside bundled up in blankets just to spend time with me.

FaceTime Them While They Get Treatment

Many cancer centers still aren’t allowing patients to bring support people in with them for chemo infusions. This can lead to AYAs feeling especially lonely – I know when I’m at the cancer center, I’m always the youngest one there by at least 20 years and can often feel isolated because of it. Talk to your friend about their treatment schedule, and ask whether they would like to chat while receiving chemo. You can FaceTime them, call them, or even just text (I love when people send funny memes while I’m getting treatment).

Knowing you’ve set aside time to be there for them, even though you can’t physically be there, can help with the isolation of being there alone. I have one cancer friend who always gets chemo in a chair by a window. Her friends drop by that window with signs cheering her on, or even just sit outside the window and chat on the phone with her so that it’s almost like they’re hanging out in person. Depending on the setup at your friend’s cancer center, this could also be an option! 

Help Them Out with Chores from Afar

Your friend might be too tired to grocery shop, cook dinner, pick up prescriptions, or even walk their dog. These are all things that you can help them with while still staying socially distanced! You can drop food, prescriptions, or their favorite takeout/a home-cooked meal on their porch, and if they’re up for a visit when you drop things off, you can stand outside and distanced while wearing a mask. If they need help with a pet, you could pick the pet up from their yard or other outdoor area and walk it while they rest. While being indoors with your friend might not be an option right now, you can still support them from afar if you talk to them about their needs. 

Use the b-there Tool to Plan Support

Most of the suggestions I have listed here for supporting your friend from afar require that friend to be feeling well enough to spend time with you. The b-there tool is a great way to understand your friend’s needs and limitations, and using the information they share within the tool, you’ll be able to plan your support accordingly. In addition to coordinating activities, it also lets you know how they want to connect and what they are in the mood to do. Flexibility is key. Remember that they might wake up one day and not feel up to something you had planned that day. While it might be disappointing or even hurtful, try to remember that it’s not personal. 

The Bottom Line

Don’t let the pandemic restrictions keep you from spending time with your friends. You may not be able to do something every day, but by allowing yourself to get creative and think outside the box, you will be amazed at how many ways you can continue to enjoy each other and have fun doing something together…even if it is more than six feet apart.

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Cancer Support Challenges for Active Duty Military: Q&A with Rebecca Satterwhite

Posted on by Rebecca Satterwhite

Did you know that  over 80% of the nearly 1.33 million active duty military personnel are young adults between 18-35? Imagine getting a cancer diagnosis while you are serving your country. Social support for this unique community can often be hard to find. Rebecca Satterwhite, a member of the U.S. Navy, received a devastating breast cancer diagnosis at 26. Due to her own experience with inadequate support throughout treatment and beyond, she is on a mission to make a change and amplify support for military members whose lives have been touched by cancer. Here’s her story…

Tell us about yourself, pre and post-diagnosis?

Before I was diagnosed, I felt smart. I was the strongest I’d ever felt and the fastest because of the training I was in, I put up with a lot more BS, work was my number one priority, I felt like I had a lot of good friends and awesome people that I worked with. After I was diagnosed, I wouldn’t say my main goals changed that much, maybe just my timing. 

I always wanted to retire from the military, and I still do, but I’m more focused on switching career fields sooner than I had previously planned. My job right now is pretty cool because of where I work, but I don’t want to work on electronics forever, and after chemo, I feel like I lost a lot of my knowledge on the subject. 

The main life change I was not expecting was meeting my husband. We met right before I started chemo, and lucky for me, he didn’t let any of the medical stuff phase him one bit. The second time we really got to hang out was right after I lost my hair, and I was so nervous for him to see me. I had built up this whole situation in my head, and all that went away when he saw me, smiled, and kissed the top of my baby-smooth head. That was the start of a new mindset on my part; I was spending a little too much time worrying about work, and I needed to spend more time on what and who makes me happy. 

Post-diagnosis and post-treatment, I really started to realize I had to get used to what everyone calls their “new normal,” which is always rough. I’m not going to lie, I’m still fighting that internal battle that I’ll never be exactly who I was before, and it’s hard. I’m still as smart as I was before, but now it takes me a lot more time than I’d like to be able to think of the right word or remember where I put something earlier. 

I’m not as physically strong as before, and it sucks starting over; I have pain in weird spots, and parts of my body feel numb, which is strange. I might get as strong and as fast as I once was, but it will take more time and more effort.

 

Tell us about your cancer experience?

Right in the middle of a pretty tough military training school, I found a lump in my left breast. I immediately thought it was cancer. Most of my family members that were over the age of 40 have had some type of cancer, so I guess I always thought it would happen to me someday too. I just didn’t expect it to be at age 26. 

I found out later on that it wasn’t genetic at all and that it had probably been growing for a little over three years. After that, I always wondered if it was job-related, and honestly, I may never find out. I’m active duty in the Navy, and I work on communications equipment, which means when I worked on an aircraft carrier, I was constantly working and living around RF radiation among all sorts of other chemicals for roughly five years. 

 

 

Once I was diagnosed, I was told my best option was to have a lumpectomy with sentinel node biopsy and radiation therapy following the surgery. The first surgery went well, but more information came from the biopsy. I was told the cancer had started to spread, and I would need another surgery followed by chemotherapy before I ended the treatments with radiation. 

Up until this point, I had, of course, been upset that I had cancer, but I always felt that I would be alright once I got through all of the treatments. But after finding out that I would be getting 12 rounds of chemo, I started to feel crushed. I wasn’t ready to feel sick all of the time or tired or lose my hair or any of the number of things I felt once I actually started. 

I had no idea what to expect or how I’d feel, and that was scary. I googled a lot, which was not the right answer, but I like to try and feel as prepared as possible. I was not prepared, though. 

In my first chemo session, I packed some books, a blanket, snacks, and my laptop. My mom came with me, and I think she was more nervous than I was, but of course, she was trying to look fine. I was glad she was there, but I also didn’t want to look worried. For whatever reason, I felt like I needed to be the strong one. 

Sitting in the hospital getting pumped full of meds and chemicals, I was actually not as sick or tired as I expected, but once I got back home, I felt like all I wanted to do was lay in bed. I went from feeling like a pretty healthy and fit 26-year-old to feeling tired constantly and having bone pain that made me shuffle instead of walk normally. After a while, I got used to how it would feel, only to have them start me on a new kind of chemo that comes with different side effects. 

Still, I knew it would end eventually, and I would get back to normal life! That definitely was not the case. I did finish treatment and was told I was cancer-free, and I’d be taking one pill (tamoxifen) a day for the next ten years to try and keep me cancer-free, which is fine. I can deal with a pill a day, as long as I’m back to normal, right? 

I never got my “before normal” back, which for me was actually one of the hardest things about my cancer experience. I had gone into all this thinking that it would end; if I just get through this part, I’ll be back to how I was before. 

At home, I’m usually pretty comfortable with my “new normal.” I have a routine, my family is there, my dogs are there, I’m in my own space, and if I forget something, my husband knows where it’s at or knows the word in the sentence that I can’t think of and helps me out. I have my moments where I get upset or a little mopey at home, but for the most part, I’ve become happy, even a little more confident at home than I was before. 

Once I get to work, though, I usually struggle a little more. I’m lucky enough to work with some of the military’s smartest, fittest, and dedicated people. I used to be one of them; I could tackle tons of problems and fix things, keep up with most of them during workouts, and I felt accepted. Now I almost avoid those situations entirely, and I feel like my once good friends avoid me too. Most of the people that know what I went through don’t talk to me much anymore unless it’s specifically work-related, and those that don’t know what I went through give me a puzzled look when I pause in the middle of a sentence or tell me I shouldn’t have my hair that short because it’s not in “navy regs.” 

 

 

On one hand, I completely understand why they say or look at me funny. Before I went through this, I probably would’ve done the same things. Now I either politely try to explain myself or just get angry in silence and keep it all bottled up. There are understanding and helpful people, but most don’t know how to help, and I feel like a lot of people are surprised that I still have issues a year after my treatments ended. It seems like many people, military or not, think once treatment is done, you should be functioning as you were before.

 

What never failed to make your day during treatment?

Three days after my first surgery, I ended up adopting my sweet pup, Cypress. I lived alone at the time, so it was wonderful to have him around. He was from a rescue, a little over a year old, and I remember right after my mom dropped me off at home following my first chemo session, he knew something was wrong. Throughout all my treatments, he was so calm and patient with me when normally he would be jumping and running all over the place, being a normal, energetic German Shepherd/Husky mix. He followed me around and would lay his big ol’ head on my lap to keep me company. Aren’t animals just amazing?

 

 

If you could tell new supporters one thing not to do, what would it be?

Don’t talk to them any differently than you would have before, and definitely don’t completely avoid them. If you don’t know what to say, just let them lead the conversation or bring up something you can enjoy talking about that has nothing to do with the cancer subject.

 

If you could tell new supporters one thing to do, what would it be?

Offering help is great, in my opinion. It doesn’t have to be something huge, maybe just a ride to the hospital if you know they don’t feel well enough to drive themselves. If you miss them and want to hang out, let them know that, and offer to come over and watch a movie or go for a short walk.

 

Cancer Support for Military Members

When I was first diagnosed, I looked for a military-related cancer support group, and I couldn’t find one, and I felt a little out of place in regular young adult groups. They were always very accepting, but they just didn’t understand some of my military-related frustrations. I started SMAC (Service Members Affected by Cancer) recently to try and give service members a place to feel more comfortable to talk, share their issues, or get some support from other service members. I have some military therapists willing to help out if anyone needs assistance. You can visit our website at smacancer.org, email us at [email protected], or follow us on Instagram @servicemembersaffectedbycancer. 

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