Talking with someone who’s dealing with a serious illness is never easy, whether you see them every day or much more infrequently. (Thanks, COVID!)
Well-intentioned people try to come up with something (anything) to say to let the person know they’re there for them, and that they’re sorry it’s happening.
They want to make them feel better. They want to give them the world. Instead, they often end up, unwittingly, saying something hurtful.
I can say this with some authority because, just over a year ago, at age 37, my cancer diagnosis was upgraded to stage 4 metastatic breast cancer, or “MBC.” For newcomers to the cancer world, that means that the cancer is advanced and has spread to other organs.
In the past year I have also been the recipient of some of the best — and worst — comments and advice.
So as a member of a club nobody wants to join, I’m here to share a few things to never, ever say to someone with MBC, as well as some basic phrases which mean the absolute world to someone like me.
Let’s Start With the Good, Shall We? (It’s a Short List, But It’s a Solid One)
I don’t know what to say to make you feel better, but I am here, and will always be. Side Note: Please make sure that you make good on this statement. Be sure to show up throughout the good and bad times. No matter how hard it may be for you to face, it is always more difficult for us, and we need you.
This sucks! I hate this for you! We hate it too, and it feels so good to know you feel the same way. We don’t know what to say or do either sometimes, but just knowing you’re as pissed off as we are is somehow comforting.
I’m sending you dinner on Tuesday. What time can I have it delivered? Saying “how can I help” puts the burden back on us to find ways that you can help us, when it already feels incredibly sad and gross that we need the help in the first place. If you think sending us dinner would help (and trust me, it does!), just do it. If you don’t know what our family eats, gift cards for local restaurants are amazing! And it doesn’t always have to be about food. If there are other tangible ways you can help us (think: cleaning services, taking our children to extracurricular activities, grocery shopping, walking dogs), please be specific with your offering, and thank you.
Now on to Things You Should Never Say, and Why (Unfortunately, They Outnumber the Good)
When will your treatment end? Unfortunately, never. When someone is diagnosed with MBC, they will only live as long as there are treatments available to stabilize their specific subtype of cancer.
Are there instances where MBC patients won’t be on treatment? Yes, but those are very specific situations, and treatment will usually resume at a later date, if there are any left that they haven’t yet tried.
You don’t look sick. I know — when you think of a cancer patient, you think of bald heads and frail bodies. So someone with stage 4 cancer would probably look like the sickest cancer patient you’ve ever met, right? Not necessarily. Treatment for MBC is very different than treatment for early-stage cancer. The goal of treatment for someone with early-stage cancer is to be cured. But with MBC, there is no cure, so the goal is to keep the patient alive as long as possible with the best quality of life. It is more a marathon than a sprint, therefore, the treatments are oftentimes less toxic and patients may look incredibly healthy (and have a lovely head of hair, too).
Have you tried … ? It is so incredibly kind of you to share information that you learned with those of us with MBC. We know that thinking about us dying from this disease scares you so much that you just want to tell us everything and anything you may have read about. But trust me, if there is something out there that could cure us, we would know about it. And if we didn’t, our very knowledgeable cancer care team would.
You shouldn’t do that, it isn’t good for you! Whether you think that sugar feeds cancer (Newsflash! It doesn't!), or that we’re not strong enough to play sports with our children, or anything else you may see someone with MBC doing, please know that we have had extensive conversations with our cancer care team about what our limitations are, and we know what’s best for us. Do we sometimes do things that aren’t great for us (like maybe I shouldn’t have eaten that entire tub of ice cream last night)? Yes! That’s what makes us human! Plus, when you know that your life may be significantly shortened, sometimes you just have to go for it, even if you may pay for it tomorrow. Life is for living, so join us or go away.
You just have to think positive! So, yes: It is scientifically proven that positivity does have an impact on how someone manages an illness. I happen to be a very positive person and can attest that the days when I feel like I will live long enough to meet my grandchildren feel so much better than the days that I am planning my own funeral. But it is also scientifically proven that positivity does not increase overall survival for those with an incurable illness. Positivity will keep us happier while we are alive but will not cure what we are dealing with.
Also, it is so hard to keep positive all the time when faced with a terminal illness. Plus, you know, life is hard without managing cancer and medicinal side effects, and "scanxiety." We think about our pending doom at all times, and although we try to be positive, sometimes it’s impossible, and you telling me to do so really doesn’t help.
You’re going to beat this! Yes, we’re strong! We have to be to walk this path each and every day. But, no, we are not going to beat this. Unless something else takes our lives first, or the miracle of a cure surfaces, this disease will be our ultimate demise. It sucks, and it makes me so sad to put that down in black and white, but it’s the truth. Please don’t make us have to explain this fact to you because saying it makes you feel better. It just reminds us that we will not beat this — and that really, really hurts.
My (insert family, friend, coworker here) died from cancer. No. Just. No.
What did (or didn’t) you do to make it come back? Trust me, if there were anything we could do to avoid the cancer returning, we would have done it. Cancer metastasizes when even one, single, solitary, microscopic cancer cell has traveled from the original cancer site to another place in your body. I had the most aggressive treatment for my early-stage cancer, because I was willing to go through hell and back to be able to live the rest of my life cancer-free, and even that could not prevent the cancer coming back in my liver 18 months later. A cancer recurrence is not our fault, and we should never be made to feel like it is.
Don’t worry, you’ll get back to your old self again soon! Nope, we won’t. But you know what? That’s okay. Because this new version of us — this raw, scarred, not-afraid-to-tell-you-how-it-is, living life in the moment because we know it’s all we’re promised, literally not caring at all about the small stuff, person we have become — is so much better than who we were before. You may not be used to her, she may not be as fun or agreeable as she was previously, but that is because she is no longer taking one single second for granted. You could learn a lesson or two from her. And we are proud of this new person we have become, even though we, too, are just getting to know her ourselves.