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

Sometimes, saying nothing says it all.

 

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

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

About Hernan Barangan

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

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

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

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Examples of What to Say When Someone Has Cancer

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

 

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“I’ll be here to support you.”

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

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

 

 

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

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

 

 

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

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

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

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

 

 

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

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

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

 

 

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

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

 

 

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

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

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

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

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

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

 

 

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

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

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

 

 

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

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

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

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

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

 

 

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

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

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

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

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

 

 

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

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

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

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

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

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

 

 

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

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

 

 

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

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

A few tips:

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

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How To Stay Connected To Friends From Afar

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

Game Together

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

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

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

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

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

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

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

Watch Together

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

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

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

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

 

How do you stay connected to friends?

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

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

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

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

 

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Where Did I Go Wrong?

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

Unhelpful Things to Avoid

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Helpful Talking Tips

As you navigate your conversations, remember these talking tips: 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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What Do I Say to Someone With Cancer?

You just got the call that your friend has cancer. If you are a young adult, this may be the first time you personally know someone your age that has cancer. If that’s the case, you probably have no idea what to say or how to interact. We’re here to help you find the answers so you can be the supportive friend they need during this hard time.

 

Crush the stigma

First of all, cancer places a stigma on conversations. The perception of cancer, what it means for the future, and what it physically and mentally does to a person can sometimes make others feel uncomfortable talking to the person diagnosed. The reality is your friend has not changed as a person, so remember to speak to them the same way you did before their diagnosis. The more you change how you interact with your friend, the more they are reminded that life is different, and they have cancer. The more you filter your conversation, the more isolated and disconnected they will feel to you and the outside world. 

Every cancer experience is different, and there will be temporary changes to your friend’s physical and emotional state. Take these into consideration, but remember to stay authentic to your relationship. You won’t be giving your friend the escape and normalcy they need if you are suddenly treating them differently, holding back, acting awkward, over-filtering, or just saying weird things that you would never have said if they didn’t have cancer. 

 

 

Here are a few things to remember:

 

  • Be present, not perfect. Avoid letting your fear of making a mistake keep you away. Nobody is perfect, and missteps will happen. It is part of being human. This is a new situation for both of you, and there will be plenty of times where both of you don’t know what to do or say. 

 

  • Be flexible and meet them where they are physically and emotionally each day. It is always a good idea to check-in. Asking your friend, “What do you feel like doing today?” will help you know how to connect (tone and energy), and what to discuss (or save for another day).

 

  • If you visit in person, turn your phone off and put it aside so you are not distracted. Don’t be the person that visits, but spends more time looking at their phone than the person they are visiting.

 

  • If a misstep happens, acknowledge it and be sure to ask for forgiveness or be willing to forgive. Life is too short to stay angry.  

 

  • Sometimes having an activity to focus on can neutralize the stress of what to say and ease the conversation.

 

  • Let your friend initiate private or sensitive topics. Don’t be offended if certain topics are suddenly off the table. 

 

  • Avoid saying hurtful things or sharing information that will increase their stress. They are already dealing with a lot, and negative comments can impact their mood, stress level, and treatment response.

 

  • Don’t be afraid to joke and laugh with your friend (of course it goes without saying to not joke at their expense). Cancer creates some really ridiculous situations, so be ready to laugh at yourself for doing or saying something dumb. It will happen, so just own it.  

 

  • There will be moments of silence. Embrace those moments, learn to become comfortable with them, and realize that sometimes silence is what your friend wants…with you by their side. Silence is an opportunity to reflect, empathize with your friend, and appreciate your friendship. Many of our Talking Tips come from moments where a friend is trying to break the silence or console a friend, and it backfires. 

 

  • Know when it’s time to wrap things up. Your friend may not want to hurt your feelings and tell you it is time to leave. Be on the lookout for cues (or agree to an end time in the beginning so it doesn’t feel personal on either side). 

 

  • Keep it fresh and interesting. Find ways to learn, grow, and create new memories together. Consider planning a topic to discuss or an activity to do in-between visits (or get the materials in advance for your next visit). 

 

  • Schedule a regular time to meet or connect. It will give both of you something to look forward to and plan for.

 

Moving forward together

We highly recommend watching Hernan Barangan’s “My Friend Has Cancer” six-part video series about what to do and what to say when your friend has cancer. Hernan is a cancer survivor and director of the film Cancer Rebellion. His helpful and entertaining videos bring together survivors and supporters for a weekend getaway, sharing insights and perspectives on how to interact after a cancer diagnosis, during treatment, and beyond. Seize the Awkward also provides some great tools and tips for getting the conversation started for young adults struggling with depression, anxiety, and other mental health issues.

 

 

At the end of the day, all your friend wants and needs from you is compassion, connection, and normalcy. If you know what kind of support your friend desires, you can ensure they receive it. Here are some suggestions for how to move forward together. You can do this! 

 

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You Just Found Out Your Friend Has Cancer – Now What?

Most young adults never expect to hear the words “I have cancer” come up in a conversation, and they feel totally unprepared when it does. The news that your friend has cancer feels scary and overwhelming, but it is important to approach the news with courage and compassion. Life is upended, and your friend needs you now more than ever. Your presence will give them the stability they need as everything else around them changes. With a shared understanding of what is ahead and the support your friend desires, you will ensure your friend receives the support needed during treatment and beyond. Here are some suggestions for how to move forward together.

Step 1: Understand what’s ahead

 

  • Every person responds differently to the news, and not everyone wants to share it with others. When your friend with cancer shares their diagnosis with you, it means they trust YOU with that information, so be sure you understand and respect their privacy wishes. Sharing the news with the wrong people can impact relationships, work, school, and even insurance.

 

  • Depending on the cancer stage of cancer at diagnosis, treatment may start immediately or there may be a few weeks before it begins. It may require an extended hospital stay (inpatient), or your friend may be commuting to the hospital intermittently for procedures (outpatient). Your friend’s support needs will vary depending on their care plan as well as how they are feeling on a given day in response to treatment.

 

Step 2: Learn how your friend wants to be supported

 

  • Connection, support, and normalcy are the things your friend needs from you. Stay authentic to your relationship and remember that the diagnosis has not changed who your friend is on the inside.

 

  • When asking how you can help, your friend may not have an answer. That is okay. Sometimes just listening and providing a safe space to process their emotions is all they want. Needs may come up naturally in the conversation. If they are looking for answers or inspiration, help them find it. If questions come up, write them down so your friend can ask the medical team later. If there are resources you think might be helpful, share those when the time feels right. Be careful to not be that person that pushes all of your beliefs on them. Respect their choices and decisions and offer recommendations only when asked. Help comes in many forms, so find positive and meaningful ways to make their day better.

 

  • Clear communication of needs is key, but it is humbling to ask for help and is sometimes hard to know what to ask for in the beginning. Having to come up with needs may lead to added stress. Offering specific items or help will ease the burden of asking, but remember to give them room to decline your offer without taking offense. They may just not be ready to receive what you are offering on that day. It is not personal.  As they get more comfortable asking for and accepting help, offering and providing support will get easier.

 

Step 3: Work together to establish a support network

 

  • It is important to organize the peer support network early and emphasize the importance and impact their support will have on your friend’s quality of life.  The first few weeks after diagnosis is often when many friends and peers will fade away, never be heard from again. Reinforcing how they make a difference may help motivate them to stay connected. 

 

  • If you or your peers are struggling with showing up, find the help needed to work through it. Remember you don’t have to do something big to be in someone’s life and make a difference. If you can’t get past it, let your friend know you are struggling. Honesty and authenticity are so important during this time and assure your friend you are not abandoning them.

 

  • Create a group chat so you can stay coordinated and reach out to each other as needed. Make sure everyone is on the same page with the privacy guidelines.

 

  • Find a tool that best meets the needs of your friend and the support network. There are several online tools available to help support networks stay connected, including b-there, a connection tool designed specifically for young adult cancer patients. Other tools available include CaringBridge, MealTrain, Lotsa Helping Hands, and IanaCare. Whatever works best for your network and will help you stay connected and consistent is what you should use.

 

  • The more supporters that can stay connected, the more likely consistent support can be achieved. Your friend won’t always want or need support, but being there when support is needed is vital to their quality of life. As we have learned from COVID-19, presence is more than being in the same room. There are many ways to connect without being in the same place, and just showing up, in person or virtually, makes a big difference. 

 

 

Step 4: Be consistent and committed

 

  • If you have a busy schedule with many competing priorities, commit to a regular check-in routine, and put a reminder on your calendar. This will help you stay consistent, and your friend will appreciate the assurance that they are not alone. 

 

  • Put the device down when you are together (unless you are using it to enhance your conversation)

 

  • LISTEN without distractions or judgment.

 

 

  • Embrace the silence when there is nothing to say, and acknowledge when you don’t know what to say. 

 

  • Every day will be different. Depending on the cancer treatment, how your friend is feeling, and what other life stressors exist, some days will feel normal, and others will be a struggle for your friend. Try to understand their current emotional and physical state so you can find ways to best support them.

 

  • If you are unsure how to help during certain situations, there are resources that can help you work through the challenges and stay committed. If you need peer to peer support, options include Imerman Angels, GRYT Health, Cancer Lifeline

 

  • Don’t give up. Your friend may not be feeling well enough to answer your text or call, but know that they read and hear them all and appreciate you checking in.

 

Step 5: Take care of yourself too

 

  • You have to be present with yourself before you can truly be present for others. If you are feeling stressed, anxious, or tired, be sure you are making time to recharge and heal.

 

  • If you are feeling sick, remember you can be a health risk to your friend. Find an alternate date to hangout or a different activity, so you can keep them safe. Even if you can’t be with them in person, there are many other ways to be present. It is about finding balance, making time when you can, and prioritizing your friend’s needs when you know they need you.

 

  • There will be times when you need to talk and process your feelings to keep your own mental health in check. It’s important to avoid venting your frustrations to the person that is undergoing treatment. They are probably already feeling like a burden. Don’t be afraid to ask for help from a therapist, friend, counselor, trained social worker, or other trusted confidant (always remembering your friend’s privacy wishes). Unresolved emotions can build up and will affect your ability to support, so make sure you find the person or activity that gives you some relief.

 

Step 6: Make the best of every moment together

 

  • Make the time to be present when they need you, give them space when they need it, stay flexible, and be understanding when things do change.

 

  • Take turns answering the question “How are YOU doing?” (One-word answers don’t count 😉). It can be easy to forget that both the survivor and supporter are going through a difficult time. Allowing each to feel like their experience matters can bring you closer together.

 

  • Recreate old memories to provide comfort and a sense of normalcy.

 

  • Create new memories and traditions that you can plan and experience for the first time together.  

 

  • Find activities that you can do/learn together and keep the conversation fresh (yoga, music, art project, webinar, mini book club, etc). 

 

  • Find forgiveness when emotions flare. Life is too short to hold grudges. Work through it, learn from it, and move forward. If it helps, have a favorite picture of the two of you handy—it will remind you of how great your friendship is and can help pull you through the challenges.

 

  • We are never guaranteed tomorrow, so don’t put off a visit or connection because “something better” came up. Think of it this way, ten years from now, will you remember a meaningful one-on-one night with your friend that needed you or the Friday night party? If you choose to go to the party instead, be honest with your friend and have the courtesy to cancel or reschedule. Tables turned, what would you hope your friend would do?

 

Let us know your thoughts. If you didn’t find the information you were looking for, please don’t hesitate to contact us with any questions you have. We’re here to help.

Want more?

 

Amy Schneider – Oncology Nursing Month Highlight

Oncology nurses are there to explain the diagnosis to patients and their families and be their guide through treatment. They are there to celebrate the wins and provide comfort when the road gets rough. Their commitment, dedication, and endless compassion for their patients deserve to be recognized. To end Oncology Nursing Month, we wanted to recognize one of our own. Today, we’re celebrating you, Amy Schneider.

Amy Schneider SOMBFAB

Meet Amy Schneider

Amy Schneider, B.S.N., R.N., CHPON, is a Case Manager for Cancer Survivorship, founder and facilitator of AYA Support Group Some Of My Best Friends Are Bald, and a member of b-present’s Advisory Board. She has been at the Peckham Center for Cancer and Blood Disorders at Rady Children’s Hospital in San Diego for 33 years.

“When I started working in the clinic, it was apparent that there was very little in place specifically for our adolescent population. And here we are 30 years later still and always working on this. I have always loved working with that age group and our child life specialist at the time, and I started SOMBFAB. We will be 30 years old in April!”

What is SOMBFAB?

SOMBFAB, or Some Of My Best Friends Are Bald, is a support group for teens and young adult cancer patients and their siblings that focuses on life-lasting friendships and creating memories to last that lifetime and beyond. They provide a ton of age-appropriate activities and experiences that give AYA and their siblings a wonderful place to connect. With the recent pandemic, SOMBFAB is facing the same challenges that everyone has—not being able to connect in person. For the duration, they started ZOOMBFAB, where everyone is virtually connecting via Zoom twice a month to keep the thread of connection going during this difficult time.

sombfab BLUE logo

Her “Day Job”

Amy is in charge of coordinating care for almost 700 cancer survivors who are active with Rady Children’s Hospital, and her database has nearly 1300 people on it (this includes survivors that have moved on to adult care or moved away, etc.).

“It has always been my goal to make each patient feel just as important as they did on day one, no matter how far out treatment they are! Their Thriving After Cancer Clinic is a multidisciplinary clinic that helps our survivors move forward and Live Their Best Life. It is always an incredible blessing to do the work you feel you were born to do. I feel as though SOMBFAB is my life’s work. We have enhanced the lives of countless AYA.”

Learn more

The Support Report with b-present – How Support Changes Lives

Our new podcast launches in 3…2…1! Tune into The Support Report with b-present hosted by our very own Justin Peters. We will be sharing real stories from young adults and dive deep into how support changed their lives. We’ll explore their challenges, triumphs, and everything in between. We’re here to inspire, entertain, and empower you to create your own stories of support and presence for others within your community.

The Need

Now more than ever, people are experiencing the need to connect and realizing how much it hurts when we are not. We need to know that we are not alone in our struggles and that there is someone beside us we can lean on, laugh with, and learn from. However, providing support is not always easy, and the moments when it is needed most may also be the moments we have to dig the deepest to get through. But know this…

Those moments matter. 

 

When a young adult faces a life-altering experience, their health becomes dependent on the presence of others. Whether it is a diagnosis, loss of a loved one, mental struggles, or grief, support is needed. Having supportive people in our lives helps us through tough moments so we can enjoy moments of relief, joy, and hope. 

Let’s talk about it

The Support Report exists to help you develop empathy and compassion that leads to improved connections. We want you to self-reflect and apply what you learn to become better supporters for the future. And we want to inspire you to create change in your own lives and communities, by volunteering your time and talent, advising or starting organizations, and creating products or services that solve problems you have experienced or have the means to solve. While we may not be able to change the past, we can learn from others’ experiences and find new ways to be present with purpose and change the future for those that need us.

Want to be featured on The Support Report?

So how has being a supporter or receiving support changed your life? We’d love to share YOUR story. Email us at [email protected] so we can start the conversation!

 

Losing a Sibling to Cancer — The Struggles with Moving Forward

For siblings, who often share a deep bond, a cancer diagnosis can really hit hard as life turns upside down for both of them. It’s one day at a time, powering through, delivering support and trying to help preserve normalcy in the midst of an anything-but-normal situation. The pain and worry are often well hidden as they strive to put on a brave face for each other and enjoy the present as best they can. And when a sibling doesn’t survive, the brave face often continues as the bereaved struggle to reimagine what life even means without their loved one there and the impact on their own future. 

 

One of many things you’ve taught me is surviving isolation. Days and nights in a hospital room for months at a time, in the moment time just passed by. We spent our time building legos, playing Mario Kart, making puzzles, playing cards, painting, walking the hallways, making fun of each other, at times fighting….honestly anything seemed fine confined within those walls as long as we had each other. Kinda wish quarantine consisted of you keeping ME company, but I’m glad you are away from this world at the moment. I would have been terrified for you.

Anyways, the past three months have been spent sick trying to find health insurance and giving into the help I need. Next month starts a new chapter in my life with a new doctor and going back to therapy, not the way I expected things to go, but I thought of you and knew you’d probably want me to stop being prideful and kind of cowardly and face my fears head-on. I haven’t even processed the loss of friends and just came straight home from funerals to work nonstop until now I’ve had time to feel my body and mind struggle. I guess this moment in time where the world is at a pause was what I needed to realize the lord is telling me to just be still…and start to take care of myself again.” — Estefania Olivera

 

Ruben Olivera (left) and his sister Estefania Olivera

The Healing Process

The stigma of loss among young adults can make it particularly challenging to verbalize these emotions, depriving them of part of the healing process. As part of the AYA cancer support community, let’s all remember how important it is to make room for young adults to grieve, process, and talk about their loss, concerns, and struggles. Comfort and healing are facilitated by just listening. And most importantly, remember to keep their sibling’s memory alive in conversations that celebrate how they lived, the things they taught us and the light they brought into our lives. It should never feel like we have moved on, but instead, it should feel like we are moving forward…together. 

Supporter Talking Tips –  Did You Really Just Say That Out Loud?

“What is the worst thing someone said after I was diagnosed? Hmm…do I have to pick just one answer? There are so many!” —Anonymous 

We asked a room full of young adult cancer patients and survivors what the worst thing someone ever said to them after they were diagnosed and some of their answers about knocked our socks off.

  • “Too bad you just dyed your hair.”
  • “Is your disease contagious?”
  • “Everything happens for a reason.”

Did they really say that out loud? When we don’t know what to say to someone to comfort them, things can get kind of awkward, and it’s easy to say things that we think are helpful when in reality, they are unhelpful and sometimes even offensive. Often, we might not even know that what we said was wrong because our friend is too nice to call us out.

The b-present Foundation’s Supporter Talking Tips are designed to help supporters avoid saying things they might later regret…because no one wants to join the “Did You Really Just Say That Out Loud?” Club.

The b-aware Program

Our b-aware program focuses on educating young adults on the importance of presence and empowering them to support their friends through thick and thin. By sharing other perspectives and lessons on how to express and provide support with our community now, they will be prepared to be strong supporters whenever their friend needs them most.

Supporter Talking Tips

We feature monthly Supporter Talking Tips across our social media channels. Our goal in creating these tips is to show the helpful and unhelpful way things can be said. Many of the tips we share are cancer-focused but can apply to a variety of life situations. Every tip is based on a real story or situation that at least one cancer patient (and often many) has experienced.

The tips are presented in a side-by-side graphic with an unhelpful phrase on the right and a helpful phrase on the left so readers can see just how easy it is to adjust their choice of words to ensure a positive outcome. The unhelpful reflects the thoughtless comments typically said in awkward small talk or when projecting our opinions on their situation. In contrast, the helpful reflects empathy and understanding of the current physical and emotional state of the cancer patient.

 

 

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Be real

Finding the right words is not always easy. Think of it less as finding the “right” words, and more as finding the best words in that moment. Candy-coating or avoiding topics altogether, in general, is unhelpful. Have the courage to engage in the topics they want to discuss. Sometimes just acknowledging the reality of the situation without being judgemental or dismissive makes a huge difference. Become comfortable with saying “I don’t know what to say” because at least you are being honest. Listening is often a good alternative and in some cases, better than saying anything.

Even with all the tips in the world, we will still make mistakes. When that happens, own it, apologize, and, if appropriate, have a laugh about it. Talk about how to fix it for next time. Then move forward…together.

Have a tip to share?

Now is your chance to have an impact on future supporters and patients. We would love to share your story and feature your talking tip on your social media! Anonymous or acknowledged—it’s all up to you.

Part of the dreaded “Club” and wish you could go back and change something you said? This is your chance for a do-over. Were you on the receiving end of an eye-rolling remark? This is your chance to fix it for all future supporters and cancer patients. Share with us here!