Everything You Need to Know About the LGBTQIA+ Cancer Community 

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

 

LGBTQ+ Cancer Awareness Week

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

LGBTQ+ Living With HIV Increase Risk of Cancer 

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

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

Grief and Loss Among the LGBTQ+ Cancer Community 

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

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

The Transgender Cancer Community

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

 

Self & Community Care

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

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

 

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

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

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

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

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

 

Talking Tips to Help you Avoid the Pitfalls as a Supporter

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

Remember: 

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

 

Navigating Cancer with your Friend and Moving Forward Together

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

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

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

 

Learn More About How You Can Support 

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

 

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Supporting Someone with Cancer While Putting your own Mental Health First

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

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

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

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

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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Cancer Humor: Coping Through Laughter

I’ll never forget the first time I told a cancer joke around people who haven’t experienced cancer firsthand. I was chatting with friends about the COVID vaccines in late 2020, just before they were approved. I had said that I was excited to be able to get the vaccine early since I’m immune-compromised from my cancer treatment, and a friend asked me if I was scared to be one of the first to get a vaccine that was so new. “What’s it going to do?” I replied, “Give me incurable cancer? Oh, wait…”

I thought this was funny, but when I looked at the other little squares on Zoom staring back at me, wide-eyed with jaws dropped, I realized this joke didn’t land with any of the people I was talking to. It was in that moment that I realized the dark sense of humor that came with my cancer diagnosis might not be appreciated outside of the cancer community.

Impact of Cancer Humor

Cancer jokes remain taboo in our society, and that’s a real shame. The world we’re thrust into when we are diagnosed with cancer is incredibly dark, and it can be hard to fight that darkness as it tries to consume us. One important coping mechanism for cancer patients is joking about what we’re going through to make it feel less dark. In fact, the impact of humor during cancer treatment has been studied in a variety of scientific studies, and it has been proven to lessen anxiety and discomfort, have a positive effect on the patient’s immune system, and improve pain thresholds.

When the people around us show us that humor surrounding cancer makes them uncomfortable, though, it can make us feel more lonely and isolated, an already overwhelming emotion we often feel during and after treatment. One of the first things you can do to support your friend with cancer is learn about the landscape of this new world that they’ve been thrust into, and try your best to understand what they’re now dealing with while keeping in mind that you will never truly get it unless you experience it firsthand. Learning about this cancer world can help them not feel so alone and take the pressure off of them to explain every new medical term that is important for their treatment. 

Familiarize Yourself with Cancer Humor

As you’re learning about the cancer landscape, I suggest also familiarizing yourself with cancer humor. Check out which cancer accounts your friend is following on Instagram and Twitter – are any of them meme accounts? If so, it might be helpful to follow these accounts yourself to get familiar with the things that your friend might find funny during cancer treatment. While nobody is expecting you to be comfortable telling cancer jokes (and, in fact, I would suggest following your friends’ lead when it comes to cancer humor), seeing more humor surrounding cancer in your feeds can help normalize it for you. 

Not sure where to start when it comes to finding cancer humor? My personal favorite cancer meme account is @thecancerpatient on Instagram. It’s an account run by an anonymous nurse and 2x cancer survivor, and it’s incredible how close to home many of those memes hit for me. As a Schitt’s Creek superfan with a visceral hatred for the phrase “you don’t look sick,” this is my favorite cancer meme I’ve ever seen:

Support Your Friend with Humor

For some supporters, and even some patients themselves, humor surrounding cancer can simply be too much. That doesn’t mean that you can’t still support your friend with humor and help your friend get all the great benefits of humor during cancer treatment! Try and plan some get-togethers with your friend surrounding things that will make them laugh when they feel up for it. One of my favorite activities to do with friends that always brings on lots of laughs for all of us is virtual trivia nights. It’s a COVID-safe activity that I could do when I didn’t feel like leaving the house, and there are plenty of places that put on themed virtual trivia. We would often do trivia about topics such as Schitt’s Creek, Disney, and even 90-Day Fiancé, which were always especially entertaining.

But it doesn’t have to be as involved as a trivia night – that might be something your friend isn’t feeling up for if they’re experiencing chemo brain or fatigue. If they’re feeling up to having a visitor, though, you could do something as simple as watching a funny movie or bingeing a funny show together. 

The Bottom Line

The bottom line is that humor, whether about cancer or just in general, can feel like a huge sigh of relief for someone going through cancer treatment. While what your friend is going through is very serious, that doesn’t mean that all of your interactions with them need to be. They are still the friend they were before cancer, and they want to laugh with you the way they did before cancer. Help them feel that sigh of relief by bringing humor into your interactions with them!

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Chiara vs Cancer: Adapting to a New Life with Support That Makes Life Better

My Story

My name is Chiara Riga. I am 28 years old, a marketing operations manager, dog mom, lover of exercise and the outdoors, and in September of 2020, I was diagnosed with stage IV metastatic breast cancer. A year before my diagnosis, I had gone to the doctor to have a lump in my breast checked out and was told that I was “too young” for breast cancer and that it was a cyst. A year later, I went in to have the “cyst” drained and walked out with a cancer diagnosis. This came as quite a shock to me and my entire support system as I was in the best shape of my life when I was diagnosed and had no family history, genetic mutations, or any other significant risk factors.

The first few months of my diagnosis were incredibly difficult. Having to come to terms with your own mortality in your 20s is not something that anyone is prepared for, and adjusting to medically-induced menopause along with the other host of side effects has been physically challenging. But over the past year, I’ve learned a lot about my diagnosis. With the help of an amazing support system, I’ve begun to learn what my new life will look like. I’m focusing on advancing my career, being outdoors and exercising as much as possible, spending time with the people I love, and helping others understand that you’re never too young for cancer, as well as sharing how best to support their AYA loved ones who are diagnosed with cancer.

 

Support Tip #1: Be Authentic and Get Creative

I couldn’t have gotten to this place of acceptance of my new life without an incredible group of people around me. When I was first diagnosed, there was an outpouring of support from what felt like everyone I’ve ever met. But as most AYA cancer patients can probably relate to, many of those people slowly started to fade away as the novelty of my diagnosis wore off. Luckily though, most of my favorite people held strong in their support of me. While many people asked what they could do to help, my favorite ways that my friends have supported me were creative ways that they came up with themselves.

The one that sticks out the most was when my best friends, many of whom don’t know each other well, all came together and bought me a beautiful charm bracelet. They each put a charm on the bracelet that they felt represented our friendship, then they each wrote me a little letter explaining the charms and wishing me luck through my treatment. Since I was diagnosed when we were still in lockdown, they weren’t able to come with me to any appointments or be with me much, so the charm bracelet always brought a smile to my face when I looked at it during appointments.

Another really creative way that people supported me was when a group of colleagues created a signup list, and each week, one of them wrote me a beautiful card. They decided that instead of overwhelming me with support at the beginning and then fading away, they wanted to ensure that I felt loved and supported continually. It’s been a year, and the letters are still coming! They somehow always end up arriving during the hardest part of my week and always bring a smile to my face.

 

Support Tip #2: Anticipate and Be Specific

There have also been other times when people wanted to support me, but they came to me to ask how they could help, and I just didn’t have the capacity to let them know what I needed at that time. It often felt easier to just get myself what I needed rather than having to explain to someone else what was necessary. The best kind of supporters are the ones who learn to anticipate your needs and provide help without asking what you need first.

Some friends have come to me and said something like, “I’m bringing you ice cream. Do you prefer mint chocolate chip or Phish Food today?” so that I didn’t have to feel bad asking for what might make me feel better. Once I told my friend that I was having trouble eating because of my mouth sores and she stopped by later that day to drop off homemade bone broth, ice cream, and other treats that I could enjoy without irritating my mouth sores. This made such an impact because I was just struggling through the side effects, and she actively tried to alleviate some of the struggles.

chiara vs cancer

Support Tip #3: Just Try! 

My best advice to someone who wants to support an AYA through cancer treatment is to just try – don’t ask what they need, don’t put the onus on them to help you be supportive, just try something. And don’t be offended if the first thing you try doesn’t land with them at first; this is a whole new world that they’ve been thrust into, and you don’t have any understanding or context into what it’s like to live with a diagnosis like this, so you might get it wrong sometimes. But the important thing is to show that you’re there, you care, and you’re willing to do the work to get it right.

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What Support Through Cancer Looks Like To Me

What does support look like? I’ve taken too long to answer this awesome question that I’ve been asked so many times. As the journey has continued to unfold, I’ve learned support really comes down to this one concept. 

On any given day, support means that my hardship, struggle, messiness, or pain isn’t too much for you to handle.

I wonder how many of us have believed the lie “we are too much.” I sure have. We feel we can’t be real because what we are going through will be too big a burden on others. It will hurt others, often those we love most. So we don’t ask for help, we say “we are fine” when sometimes we aren’t, we press on with our nose to the grind because we don’t want to inconvenience or trouble anyone else.

If supporting me means that my hard isn’t too hard for you, then what does that actually look like and mean day-to-day?

margarett and kris hansen

Margarett Hansen and her husband Kris

 

Support is two-fold.

Well, it’s two-fold. In part, it means that you are self-aware enough of your own heart, well being, and limitations; to know what you can and cannot handle or offer. And that’s not for me to determine. For me, it means asking specific questions like, “how are you, TODAY?” “Is it a good day or a hard day?” If it’s a good day, we rejoice! If it’s a hard day, and you have the capacity to offer assistance, a great follow up question is, “Do you have what you need in this moment?” Or “Is there a need I can fill today or tomorrow?”

If you can’t help because of distance or you’re also running at your max capacity, which is totally fine too, then simply acknowledging my struggle and saying, “what is hard about today?” and listening or saying, “I am so sorry you’re going through this.” is enough. We both know you can’t fix it. Ultimately, don’t we all want to be heard, seen, and known?

Things that were unhelpful

I have experienced people projecting their own issues on me too. This is NOT helpful. I had several conversations that went something like “thank you for the offer. I know I will need help, but I don’t know what that looks like yet. I will ask for help when I know what I need.” I personally felt dishonored because some people assumed I couldn’t/wouldn’t ask for help after confessing it was because they themselves had a hard time with it. I think this goes back to not wanting to burden others.

What would have honored my heart would have been to say, “I know you have a lot going on, when you know what kind of help you need, please let me know.” Or even better, “I’ll check back in on you and see if you have a better idea of how I can help you through this season.” Stop and think about asking a better, more specific, or intentional question.

Helpful support

Some offered support by sharing their own cancer journey or reaching out to friends who had been through it. They asked those with first-hand knowledge for wisdom and passed it along. I found this to be really helpful to prepare and anticipate what was ahead since everything is a new experience!

Now I am in active treatment, and I have a much clearer understanding of what I need from week to week. Chemo weeks, meals are really helpful! I’m in bed most of the week. I couldn’t tell you this in the beginning. I didn’t know. Around days 7-10 post-chemo, when I’m feeling better, I enjoy cooking for my family and doing normal things again! Help with the kids is also incredible! This is a harder need to fill, I realize.

I love the messages, the packages, Bible verses, and encouraging quotes! This is all supportive too! Come sit with me and chat while I’m laid up resting. Share what’s going on in YOUR life. I want to know your heart too. Healthy relationships are give-and-take. I may not be able to give as much right now, but I can listen, and I still care about YOU!

I hope in sharing my heart and journey it helps you support others that may be going through a hard time in their lives. I realize what may be helpful for me may not be helpful for others. Sometimes it’s best to honestly ask your struggling friend or family member, “What is NOT helpful for you right now? Answering this is sometimes easier than answering, “What can I do for you?

With much love and hope,
Margarett

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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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