What to Say and What Not to Say with Heidi Floyd

When someone has breast cancer it’s scary for them – and for you! What can you do to really help? What should you say? Is it better to just listen? There are as many ways of being a good co-survivor as there are people! The qualifications? A willingness to be yourself and be present. 

Today’s guest describes herself as an enthusiastic optimist. Being first diagnosed with breast cancer just weeks after learning she was pregnant, Heidi Floyd was in a unique position of knowing what was ahead since she had lost her own mother to breast cancer at a young age. Today, Heidi uses her experiences to share and help others. Heidi is a speaker, author, and advocate for those affected by breast cancer. 

Follow Heidi’s journey through her blog here, or on twitter @followheidi

About Heidi

Heidi Floyd is a sought after influencer with over 10 years of experience in healthcare and breast cancer non-profit management. Her diverse skill set includes social media marketing, corporate philanthropy, relationship management, partnership cultivation and program development.

Heidi is a powerful communicator, public speaker and published author. She is a passionate advocate who is effective in discussing all aspects of oncology. As a thought-leader in all things breast cancer, she highlights treatment options, quality of life and community concerns.

Ms. Floyd has served as the “voice of the patient” for myriad organizations including Ford, Google, the US Department of Defense, the American Cancer Society and Susan G. Komen. Her experience has helped to establish and strengthen relationships with patient advocacy organizations that support patients and their families, and educate corporations on compassionate outreach to the cancer community.

Her written work has been featured in Forbes, Huffington Post, CNN, and The NY Times.


Adam: [00:00] When someone has breast cancer, it’s scary for them and you. What can you do to really help? What can you say? Is it better to just listen? There are as many ways of being a good co-survivor as there are people. The qualifications? A willingness to be yourself and be present.

[00:16] Today’s guest describes herself as an enthusiastic optimist, being first diagnosed with breast cancer just weeks after learning she was pregnant, Heidi Floyd was in a unique position of knowing what was ahead since she had lost her own mother to breast cancer at a young age. Today, Heidi uses her experiences to share and help others. Heidi is a speaker, author, and advocate for those affected by breast cancer. Heidi, welcome to the show. Thanks for joining me.

Heidi: [00:42] Thanks for having me. This is very exciting.

Adam: [00:44] I am excited to chat with you. Can you give us just a little bit more information about your story? I’d like to hear a little bit more about you.

Heidi: [00:51] So all I had known about breast cancer previous to my own diagnosis was what I had gone through with my mom. So I lost her when I had just started college. And for me, that situation was very unique in that I was a kid and I felt utterly hopeless and all I could do was watch her go back and forth to treatment and kind of go through that situation and I was powerless to help other than driving her or helping her go to the restroom or come back, like that was it. That was all I could do. Afterwards, when we lost her, I was desperate to do anything. So I did runs and walks and bought yogurt and licked the lids and mailed them back. I did everything I could think of. If it had a pink ribbon on it, I would save up enough money to buy it, thinking that it would help somebody, somewhere out in the stratosphere without actually knowing.

[01:32] That was my commitment. I did what I thought— I knew what I was doing, but I had no idea where the money was going. Nothing. And then when I was diagnosed myself, I was utterly floored because I had done what I thought we were all supposed to do. Right? No smoking, eat healthy, exercise, don’t drink to excess, nurse your children. You know, I had three young children. I had nursed them all. I did what I thought I was supposed to do. So when I was diagnosed, in my thirties and pregnant, I thought, “What— I obeyed all the rules. Like, what’s going on?” For me, it was just terrifying because when they went in and did the exploratory surgery, the lumpectomy, to remove the lump, they found that I didn’t have just one little tumor, which is the one that I felt. When you’re pregnant, you can’t have a mammogram. I actually felt this tumor myself. It was very small, but underneath of it was a nest of tumors that I could not have felt.

[02:24] So not only was it bad, but it was really bad, and it was aggressive stage three B cancer. For me this was just a whole new world that I was not prepared for. All I had known about it was, as my mom went through chemotherapy, the devastating effects. The first doctor that I connected with— Actually, I went through a kind of a litany of doctors. The first group that I connected with assured me that due to the foundation of my cancer, if you will— So it was fed by estrogen, and when you’re pregnant, your body produces a lot of estrogen. That which was helping my baby was also unfortunately helping my cancer. So because of the aggressive nature of my cancer, and I had just learned I was pregnant. The doctors thought it would be wisest for me just to terminate my pregnancy so they could go at it really aggressively. I thought that’s— If we’re going to talk about choice, then for me, mine is, I want to keep this baby.

[03:16] So it took me a while, but I found a doctor who knew how. He was a clinician and a researcher. So he spent time in the lab and with patients, so he knew that he could take care of both of us at the same time and he assured me, “From the time we lost your mom to now we’ve made radical progress. We now have medications that will keep people, their white blood cell count up when they’re diagnosed, or going through treatment and they won’t be nauseous and they won’t lose their hair.” He said, “Of course, you can’t have any of that because you’re pregnant. But you can have the chemo.” And it was aggressive. They treated me aggressively, but he knew because of his research what would and would not cross the placental barrier. So he knew what medications were safe for me and the baby. We went the entire second and third trimester all the way through getting chemo the entire ride.

Adam: [04:02] Wow. That is— I can’t even imagine how— I mean pregnancy is intense, and chemo is intense; doing both at the same time, I just— I can’t— I genuinely cannot imagine.

Heidi: [04:13] There’s no— People talk about morning sickness; there’s no morning sickness like that.

Adam: [04:19] I can imagine, yes. Well, so tell us a little bit— Let’s talk just a little bit about supporting; you’ve played the role of being the supporter. You’ve been in the role of needing to be supported. Can you give us an overview or some ideas of like how people can offer support? Like what can they say? How do they listen? Like what’s helpful in those situations?

Heidi: [04:38] Oh god, I’m actually out on LinkedIn and I have a list, literally a giant list of things that you can do. The easiest thing when you get up in the morning and get out of bed, think about every step you take, every procedure you do, everything you do and think about what it would be like to be someone going through chemotherapy or radiation. So do you get up in the morning and walk your dog? Well, someone that you love might not be able to do that. So even if you’re not in the house with them, might you offer to take care of their pets for them? Because a lot of people, pets are a great resource and helpful aid when it comes to like the mental health of someone going through cancer. If they know that their pets are being taken care of, that will help them because they’re being loved and nurtured.

[05:22] Same rule applies for every family member. If you have children, it’s difficult when you’re a parent going through cancer because you have little one. If you have little ones, you only want someone you trust to be around them, because you love them so fiercely. But they need that break too. You know, even if your kids are like toddlers or in elementary school, they need to be able to just get away from the world of cancer that exists in their home. They need to be able to go to the movies, go to the aquarium, go to the museum, just go to the park. It doesn’t even have to cost money. If you are someone that the mom or dad trusts and loves, offer to take their children for an afternoon. Then when they come home, bring dinner for the whole family.

[06:00] So the basics that everyone thinks of, gosh, I can make a lasagna because everybody makes lasagna. Do it, make them a meal, mow their lawn, shovel their snow, take care of their pets. If they have a nice front porch, make sure that their pots are taken care of with flowers and things like that because they won’t have the energy to do it. So everything that you do during the day, someone needs help with, when they have cancer.

Adam: [06:20] So just kinda little chores, really. Any little thing?

Heidi: [06:23] Absolutely. And if that’s not your thing, like if cleaning the bathtub isn’t something you do, well, you know what, maybe you can write a check to pay a cleaning service to come in to do that. Very easy.

Adam: [06:32] Absolutely. That’s amazing. I love that advice. What’s one piece of advice you’d give to a family member or someone that was maybe just diagnosed with breast cancer?

Heidi: [06:42] It’s kind of like the Winnie the Pooh quote, you’re stronger than you think you are. For the person being diagnosed, it’s going to be hard. There are days that you will just want to stay on the bathroom floor all day, and if you have to, do it. There’s no shame in this. You haven’t done one thing to deserve this. You did not cause this cancer to come inside of your body. If you have breast cancer. That’s how it is. So don’t whisper about it. Don’t be ashamed about it. Don’t be ashamed to have a bald head and no hair on your face. It doesn’t matter. What matters is you fighting through and being as strong as you can.

[07:18] Also to know that those of us that don’t get to live past a certain age, that doesn’t mean that they were defeated or that cancer won. In my mind, my mom, even though she died in her early forties, she still beat cancer because she lived a very good life. There’s hope in the fact that you don’t have to be a perfectly healthy normal person because your normal will never come back. Your body will never be the same. Just know that living the very best life you have with the moment you have, that’s what matters.

[07:47] As far as caregiving is concerned, be extra compassionate. People when they’re feeling really not well, they’ll be short-tempered, they’ll be angry, they’ll be exhausted, and that’s not even appropriate word. It’s the only word that the English language has to offer us is just sheer exhaustion. They can’t tell you that sometimes, but just know that you’re going to have to be extraordinarily patient for a few months. They might rebound, but just keep giving as much grace as you can.

Adam: [08:12] Right. Wow, that’s really fantastic advice and a little humbling to hear on this side of things. So breast cancer is a tough subject. It brings up a lot of tough subjects around it. Can you give us some advice on how people might begin to discuss those tough subjects when they’re diagnosed with breast cancer and talk about things that are difficult for them?

Heidi: [08:34] I think being able to reveal yourself. Like I said, first of all, get rid of any stigma of shame that you might have, because even if you did smoke, you know what I mean? You didn’t ask for this, you know what I mean? So I’m talking about like lung cancer, some people think that certain types of cancer, you’ve done something to deserve it. We don’t have time for stupid. So let all go and let’s be more healthy within our own space. So if you are a patient, learning to say things like, I do need help. Be completely candid with people when they say, Gosh, let me know if I can do anything to help. Realize that some people really mean that. So say things like, Gosh, you know what? I really need help. I couldn’t shovel my driveway because I live in the north and it’s December. I really need help with that. Or gosh, you’re an accountant and I’m struggling right now because the bills are overwhelming and I need some sort of financial advice.

[09:25] Reach out to people and let them know what’s going on. Just be completely candid. With your children or with your spouse, be as honest as you can, with that level. So if you’ve got a five-year-old, you don’t want to talk about death incessantly, but you can let them know. You know how sometimes if you want to take a nap and you’re a little bit grumpy? Mom’s going to be like that a lot, but that doesn’t mean that she doesn’t love you every second, even when she’s a little bit grumpy. So just be patient and come back and come sing her a song, like she used to do for you, just put it at their level and let them know that you still adore them even though you might be a little bit tired.

Adam: [10:01] Right. Oh, I love that. That’s really, really helpful information. I love how you prefaced that, like this is nothing to be ashamed of.

Heidi: [10:11] Yes.

Adam: [10:11] This isn’t something that you brought upon yourself. Right? I think that’s really critical to sort of own and that’s really helpful, from both sides of it, from the person that’s struggling and from the loved one’s side of it as well. So to expand on that just a little bit more, what are some of the best ways that we can stay honest to keep communication open and honest as we’re going through this process, both the person that’s struggling with the cancer and the people that are supporting? Could you have any advice on that as well?

Heidi: [10:42] Sure. We’re going to focus on the people who are supporting right now. So just be aware of what might be going on. They might be trying to hide things from you. Like the biggest thing that I’ve seen when people in my cancer community reach out to me is that they’re struggling with finances and that’s like deep-seated shame. Like they won’t get their radiation this week because they have to pay rent. Like, just know that that kind of cloud is hovering over them. If they’re too proud, if you will, to say anything, then just know that they could really use a hundred dollar gift card to the grocery store, that they can do some— And now we’re at the point where you can get your groceries online. So give them, you don’t even have to leave your house. You can Amazon Gift card it over and they can get Amazon Prime, have the groceries delivered, so that no one has to leave their house.

[11:25] And yet, you know, that just by doing that, that will help them not have to worry about, “Do I get my medication or do I pay the light bill?” You know, things like that. As far as being a patient is concerned, it’s the same thing. You don’t have to ask for help because people will be coming to you asking how they can help. So it’s not like they’re going out soliciting and all you’re doing is responding to people and you’re allowing them to give something. So if you’re just in the community, you’re not the immediate caregiver, but like a friend and you want to help, you feel handcuffed because you want to do something and you don’t know— As the patient, just know that you’re allowing them to be philanthropic, to be generous, to help feel like they’re doing something because they’re suffering too, in a very small way. They want to help you. They love you. Let them. Just find a way to let them do it but don’t hog that all onto yourself. You know what I mean? Don’t be selfish with your needs. Let other people find a way to, to give you grace.

Adam: [12:21] I love your approach. It sounds to me like you really look at this as sort of a community overcoming together and a cloud of people, as it were.

Heidi: [12:30] Oh gosh, yes.

Adam: [12:31] I love that. That’s a beautiful, beautiful image.

Heidi: [12:33] That’s the only way we can make it as an entire community. I’ve learned everything I know from my experience in my growing up and I’m also a person of faith, and so I looked at— And I don’t mean that by like religion, we-hate-you kind of thing, but I look at like biblically, Jesus did everything with a cloud of people. He was never like, okay, you are just going to do this by yourself. He’s like, no, no, no. We’ve got five thousand people here, we got to feed them together. That’s how I look at it. Let’s all do it together.

Adam: [12:59] Yes, it’s a community endeavor. I like things that are done in community. I think there’s a beauty in that, for sure. Well this has been great. Just last question. If there’s someone listening to the program that needs to talk or needs help, do you have sort of any advice for first steps for them?

Heidi: [13:17] Sure. So for me, there are a lot of resources out there and it depends if we’re looking specifically at breast cancer. I think going to look at the Susan G. Komen website, CDC, Center for Disease Control, if you want to know specific things about like your region and that diagnosis, you can, but there are just a myriad of ways to connect with your community. If you’re like me, if you’re pregnant, diagnosed while you’re pregnant, social media is a huge way to connect.

[13:44] Just don’t be alone, stay connected and they are closed groups so you can be as candid as you want to. You can be as open and honest as you want to and you know, your next door neighbor’s not going to know it unless she happens to be diagnosed while pregnant as well. So it’s a safe place. Find your safe place, find your group, find your tribe, and stay in it.

Adam: [14:03] I really liked what you said there. You said don’t be alone. And from everything we’ve talked about today and all the stories that you shared, that’s kind of what reverberates in everything, is just don’t be alone. Allow people to help, allow people to come in, allow people to be a part of your world and you can overcome together instead of alone. Right?

Heidi: [14:23] And that goes on— Kind of what we’ve been focusing on right now is the chemo and the radiation part, but six months after, when your hair starts to come back, or a year after, and you’re on this continuing medication for years and years, you still need your group. I mean, you still should go to as many summits or cancer conventions as you can, so that you realize, oh my gosh, I’m not the only one who has this happening. I’m not the only one who’s going through this. Again, it’s the same groups, or scholarships and grants out there.

[14:52] Stay with your community as long as you’re comfortable. I mean, if you feel like you’re healthy and fine and you want to move on, that’s fine, but we’re always still here should you need to jump back in.

Adam: [15:01] That’s great. Well, Heidi, this has been truly inspiring. Your story is amazing. I really appreciate you taking the time to join me on the show.

Heidi: [15:10] My pleasure. Thank you so much for having me. I hope somebody out there is helped.

Adam: [15:14] I certainly hope so as well. For those that are listening, if you’re interested in becoming more involved in the fight against breast cancer, please make sure to visit komen.org, connect with your local Susan G. Komen affiliate, or walk with us at an upcoming Susan G. Komen event in your area.


This podcast is sponsored by Sideways8, an agency on a mission to improve communication through digital marketing.