I just want to talk to someone who will really listen.
During breast cancer treatment, that’s all I really wanted in terms of support from others. I wanted to be able to share my feelings and musings on life freely as I faced my mortality and tested my mettle in ways I’m still processing.
I just wanted to be heard; for someone to say, I hear what you’re saying, and that sounds tough. Tell me more. And then actually listen.
I really needed good listeners in my life, and fortunately, I had a few golden ones who got me through the thick of it, my husband Ron being number one, and family members. Now that it has been almost two years since finishing treatment, I’ve had some time to reflect upon the support and love I received. I am so grateful for everyone’s support, no matter the degree.
I also learned that there were some things I wish people didn’t say to me – not to attack anyone personally in my life, but to highlight some of the common themes that emerged in people’s comments. Inspired by other women’s posts about what not to say to someone going through breast cancer treatment, I am ready to write my own. I realize I may be repeating what has already been written by other cancer survivors, and it’s no surprise there are common feelings among all of us. I don’t want to come across as ungrateful, or judgmental, but this is how I felt. I’ve hesitated to share my thoughts as I don’t want to deliberately make anyone feel bad, but life is too short to hold back – something reaffirmed to me during breast cancer treatment.
Agree with me or not, if you’re ever so lucky to have cancer someday, then you can write your own list. This is just my two cents for supporting a loved one through breast cancer treatment.
Let’s start with what not to say or do.
1) Don’t play doctor.
When you are diagnosed with cancer, you spend most of your free time diving deep into research about your disease. You look at forums online, scholarly science articles, books, you name it. But you listen to your doctors’ advice, because they ultimately know more than you do (unless you yourself are a medical doctor with expertise on your cancer).
I was surprised by how much advice I got from people, whether it was a lifestyle change, an exercise regimen, energy work, dietary recommendations, supplements, or even my cancer treatment plan. Multivitamins, keto diet, intermittent fasting – you name it, it was probably suggested to me by someone. It’s funny how everyone becomes a nutritional expert through Google; I suffer the same pitfall sometimes, too. We get a little bit of information, read someone’s testimony to a diet or supplement, and we’re sold.
Diet is already a highly individualized thing. There is no one-size-fits-all, only what works for you. Though I appreciated that people were suggesting things out of love, it was kind of annoying. Did people think I wasn’t already eating healthfully? Did they assume I hadn’t already asked my doctor about anything special I should be doing? Everytime someone made a suggestion, it felt reductive, as if they were reducing my entire cancer – which is colossally intimidating – down to something so simple as a dietary change; if I just changed one thing in my diet, ate this one food, took this one supplement, that would be the game changer to kill my cancer and keep it from coming back. It was over simplistic, and frustrating.
I never make suggestions to people about what they should or shouldn’t eat. When I’m offered alcohol or meat, I simply say, No thank you, instead of charging into a rant about how I don’t drink, or why you shouldn’t eat meat. I appreciate when people do the same for me.
And please don’t tell me what my survival odds are, or what my risk of recurrence is. If you know about breast cancer, you know it’s not a one-size-fits-all prognosis. There are multiple variables to consider. When people tell me, “You have a 90% chance of survival at 5-years”, I want to pull up all of the bookmarked articles I have from NCBI to prove them wrong. No, I don’t have a 90% survival rate. My recurrence risk is about 50% over the next 15 years, and if it comes back, it will likely kill me, and it’s most likely to recur around the 5-year mark. A young age at diagnosis, large tumor size, high Nottingham grade score, and lymph node involvement all put me at a high risk for recurrence.
That’s why my doctors advised me to be as aggressive as possible in my treatment: bilateral mastectomy with axillary lymph node removal (I had three cancerous nodes in my left axilla, or armpit), chemotherapy, radiation, followed by 10 years of Tamoxifen, since my cancer was hormone-receptor positive. It wasn’t a “choice” for me to complete all my treatment, as people like to say sometimes; it was what the doctors advised me to do, and I heeded their recommendations.
2) Please don’t tell me that you understand, unless you’ve had cancer yourself.
Sorry, but unless you’ve lived through cancer yourself personally, you do not understand because you cannot understand. I know people are just trying to be compassionate, but it was the most disingenuous thing I think I heard from people. All I felt like saying when I heard that was, NO YOU DON’T! And the fact that you think you understand only shows me how little you understand what I’m going through.
I know I sound bitter; again, unless you’ve lived through cancer yourself, you can’t understand. I don’t blame you; it’s not your fault you’ve never been so blessed to fight for your life with a cancer battle. But please, don’t tell me you understand. It doesn’t matter that your friend, mother, second cousin, or neighbor down the street had cancer; that you sat by a loved one’s side as they sadly passed from their battle. You may understand parts of the experience, but you can’t understand exactly how someone with cancer feels. Nothing can prepare you for it, and it’s something you can’t know until you experience it. Even if you’ve had cancer yourself, it’s still a different journey than mine. Respect the process and uniqueness of everyone’s stories.
3) Please don’t placate with platitudes like, You’re going to be just fine! It’s God’s plan!
There is no way to know the future, nor determine whether my cancer treatments worked; only time will tell, and until I die, I’ll never know for sure. Though platitudes like this are common during a difficult time, it made me uneasy anytime someone said this to me. I’ll never forget an encounter at the radiation clinic; I met a woman in the changing room, and we made small talk while waiting for our appointments. She was getting radiation for her jaw; I was having my left chest wall and clavicle treated.
When she left for her appointment, she turned to me and said, You’re going to be just fine. I can feel it.
I smiled politely and thanked her, but I didn’t particularly like hearing that. How do you know I’m going to be okay? You just met me; you know nothing about me. You can’t predict the future, I thought.
Everytime someone told me I was going to kick cancer’s ass, or was going to be just fine, I cringed a little inside. Again, I’m not trying to attack people for sending me well wishes, but I need to be honest about how it felt to be on the receiving end. Cancer humbles you, and teaches you that you really aren’t in charge of your body after all. We think we are – with our dietary choices, exercise, and lifestyle – but ultimately, cancer can fester silently inside you for years before emerging as a volcano on your life, covering everything with scarring lava, filling the skies with the choking ash of death. You learn a necessary fear and strange respect for it, knowing it is now the boss over you.
You don’t talk sassily to it; you don’t pull the tiger’s tail. You never beat it, especially since it can always come back. I don’t call myself a cancer survivor, because I don’t know that I will survive it. I only know that today I am alive, and feel mostly well. But as I learned before, it could all change in the blink of an eye. Therefore, I never assume that I’m going to be just fine.
4) Don’t ask: How do you know your treatment worked?
This is one of the most difficult questions I get asked. It’s a fair question, really, but a difficult one to answer. The nurse at my port-removal surgery asked me this question; I was shocked he didn’t have the wherewithal to realize what a stupid question it was to ask someone who’d just lived through a double mastectomy, four months of chemo, and five weeks of radiation.
What the hell do you think I’ve been thinking about this entire time, everyday? What do you think my life is like now that I get to live with this dark shadow on my shoulder following me around, everyday, eternally threatening to kill me?! I mused in my mind.
Did it work?!
This is the essence of my newfound anxiety about recurrence that I have to fight from dominating my mindset everyday. I wish there were a guarantee that it worked for the long run, but only time will tell.
I will never know the answer until I die – from cancer, or something else. I’ve been asked the same question by other people, and I know it’s only an innocent, warranted question. I would love to say, Yes, but then if it comes back, it clearly didn’t work. This is the limbo you are stuck in as someone who has lived through cancer.
This is why I call myself a breast cancer zombie, not a survivor. I feel like a zombie of my former self, walking around in the shell of my old body, my old identity, echoes of songs sung years ago reverberating in my nostalgic heart. Glory Days is an apt soundtrack for me right now, I begrudge. Ask me how I’m doing today, that’s fine, but please don’t ask me how I know my cancer treatments worked. It only reminds me that I’ll never know for sure, and how unsettling that is.
5) Don’t make it about you.
This is the one time in life where you should not wait for your turn to speak; where you should not think of that one time you had a health scare that turned out to be fine, ready to share it as if you know exactly what we’re talking about (see #2). I appreciate a good back-and-forth dialogue, but please don’t appropriate our suffering by acting like you know it first-hand.
Sometimes when I opened up with people, it was as if they hadn’t heard a single word I said and were just waiting to tell their own sob story, as if trying to one-up me. It’s not a competition. I felt dismissed every time I tried to share my experience only to have the conversation flipped back away from me, and refocused on someone else. Sorry, but I don’t want to hear about your friend I’ve never met who had cancer, or how Angelina Jolie had a prophylactic mastectomy, and how that must be like what I’m going through (not in the slightest).
People on the outside looking in think all of us cancer patients have basically the same experience, and though there are universal themes (feeling alone, terror, immense gratitude for the simplest of things), everyone’s story is uniquely their own. When people tried to say they understood because they knew someone with cancer, it only made me feel like they weren’t actually listening to my story.
I just wanted someone to talk to. Don’t judge how we’re coping with cancer, or for being who we are. Don’t judge us for being selfish for once in our lives. Everyone deals with adversity in different ways, and what works well for one person doesn’t translate to everyone else. There is no one right way to deal with a cancer diagnosis and the ensuing treatment. Some people questioned how I was dealing with it, thinking only of how they would approach the situation if they were in my shoes (again, making it about themselves). Shouldn’t I be meditating everyday, or seeing a therapist, or taking that one special supplement that will fix everything? Am I “thinking good thoughts”, and visualizing my healing?
When I was first diagnosed and told a few teachers at my school, one of them told me they’d talked about how they could support me during treatment. Expecting your usual meal-train idea or something similar, I was taken aback when she said, “Someone said they didn’t know how to help you or what you’d want because you’re so quiet all the time”.
All I heard was that being an introvert automatically excluded me from receiving support from my colleagues, and a subtle dig telling me it was my fault if I didn’t get any support from others. And then, I thought, Have you ever tried asking me a question? I have a lot to say – if you actually listen. Maybe it wasn’t that I was so quiet, but that I didn’t want to waste my breath if someone wasn’t listening. My colleagues were supportive of me during treatment, coming together with generous donations and cards. For whomever had thought I was too “quiet”, there were several who were truly there as friends, checking in on me often, which meant the world to me. I could have done without hearing that comment, however.
During treatment someone else asked how I was doing so well amidst everything, that I was making it look easy; was I really doing as well as I seemed to be? You can’t win with everyone. You’d think people would want you to be happy and deal with it as best as you could, but sometimes it felt like people were disappointed I didn’t crumple to the ground in total surrender to the gravity of my experience.
Staying busy during treatment with regular time outside in beautiful places was my therapy; that precious, invaluable time kept me focused on the big picture – that life is so much more than my little life, scared as I was for it. Leaning into the beauty of the world, and learning about it, kept me inspired and helped abate some of my hardest days, but it didn’t diminish the difficulty of every step of treatment. When someone says it looks like I had an easy time with cancer, I want to remind them of all the times I cried, felt alone, or felt terrified that my death was imminent. Just because I remained committed to outdoor exercise during treatment doesn’t mean I didn’t suffer. Before cancer, time outside – paired with the endorphins of a good workout on my bike, two feet, or otherwise – had always been my best medicine. I’ve known the secret of movement through nature all of my life, and it definitely helped me through my treatment. It’s part of my identity.
But it’s only what worked for me. That doesn’t mean my way is the right way, the best way, or the way everyone going through cancer ought to approach their treatment. I would never push my lifestyle onto someone else, as I wouldn’t expect anyone to force their lifestyle upon me. Thus, when going through a hard time, let people deal with it how they know best. Don’t judge, don’t question, and don’t give unsolicited advice about how we ought to be dealing with it. Just let us deal with it how we know best, even if it’s not what you’d do.
#6) This last year was SO hard…
I know this one may make me seem cold. I realize these last couple of years were really hard for people, in many different ways – some obvious, some subtle. But unless you had cancer yourself, had COVID-19, lost a loved one, or had your life imminently threatened – beyond the risk of catching COVID – I would beg you to reconsider your blessings. All I heard people talk about is how hard 2020 was, or 2021 or 2022 for that matter. When I heard people complain, it made me wonder if they knew their audience; if they’d actually seen what I’d been through? It made me want to ask:
Would you rather have had drains hanging from your chest wall for nearly three weeks after you had a bilateral mastectomy with 33 lymph nodes from your armpit removed? Would you rather have sat in a chemo chair for five hours at a time, cold-cap freezing your head only to barely save some of your hair, over a four month period?
Would you rather have endured five weeks of daily radiation to your chest, knowing every treatment increased your risk of heart disease, and permanent fibrosis of your lung tissue?
Would you rather have pondered your death on a daily basis, genuinely wondering if this year might be your last on this planet?
Would you rather have evacuated your house for 11 days while a wildfire threatened to burn it all down? Would you rather have had to teach remotely for distance learning, having to rework all of your lesson plans to be delivered over Zoom, without much thanks from parents or students? Then again, would I have rather had a loved one die from COVID? Gotten COVID myself? Fought for my life on a ventilator? Lost my business? Had to bury a loved one in a mass grave?
Everyone has a story to tell from the pandemic, but I realize many had it way harder. I try not to complain about how “hard” treatment was, despite it actually being quite challenging. The lesson all along has been to take what you’ve been dealt, be grateful for what you have, and try to make the most of it.
Now, the #1 thing I would recommend to support someone going through breast cancer:
I’m sorry. That sucks. I wish you nothing but love and courage to fight this. Then, put your phone down and ask, How are you?
And really listen, compassionately. That’s all. No need to compare battle stories, or try to fix it.
Give yourself fully to the moment. Don’t wait for your turn to speak, or to share your own experience with your Aunt So-and-So who had a scare on her latest mammogram, or your friend who died from Stage 4 breast cancer after having celebrated being “cancer-free” for five years.
Listen with an open heart. Ask questions. Care. Put yourself in our shoes, and imagine how you might feel going through it. Don’t shy away from us when we’re going through our darkest, hardest moments. Be a good listener.
If you can’t handle the depth of such subject matter, then thank you for supporting me in ways you know how, like sending a card, flowers, or delivering a home-cooked meal. Some people don’t want to talk deeply about mortality, and that’s okay, but I really appreciated those who went there with me.
Adversity will reveal who truly has your back in life. At this point in my life, I don’t want to waste time with people who don’t care to ask how I’m really doing, who dismiss me. Some people I’d see after months since treatment wouldn’t even ask how I was doing, or about what my experience might have been like. Again, some people don’t want to talk deeply about mortality, but it was flabbergasting to be greeted as if everything was the same.
Conversely, I had some of the best conversations of my life while going through breast cancer treatment, catalyzed by the indisputable realization that my life as I knew it was over, and that my death may be more imminent than I had imagined. There’s a lot of deep issues you face when pondering your mortality, and talking with your loved ones about them helps.
My husband Ron was my de facto therapist, best friend, husband, house cleaner, personal masseur, personal shopper, and chauffeur, but the thing I appreciated most during treatment was his good ear. Having someone to talk to about the roller coaster of emotions I was experiencing made me feel far less alone, even if he couldn’t exactly understand what I was going through. That was the beauty of his gift of listening: he didn’t pretend like he understood, or knew the perfect thing to say, or try to fix it. He just nodded and listened with emoting eyes, an open heart, and genuine love for me. That is a quality about him I’ve always cherished, but was the biggest present; not to be outdone was my Dad, who visited regularly during treatment, and leaned into every conversation with an open heart, as he did all my life before passing away from cancer himself in March 2022.
I had some amazing conversations with other family and friends, too, my sisters and mom. Sometimes it was in-person, sometimes over the phone, sometimes through email or social media. However it happened, every connection I had with someone helped me feel better. I could not put a price on the value of those who were good listeners. To be seen and heard is really all I needed from my loved ones at a time like this. I realize I may sound bitter, but if you’re ever so lucky as to get cancer, then you, too, can write your own list of things you wish people wouldn’t say to you.
May you never have that chance.
Lastly, send a card. It’s cancer, not the flu.
That’s just my two cents, though.