A friend sent the URL to an essay at The Oncology Underground on Substack: Words and Phrases That Should Be Banned From All Cancer Conversations. It’s a good list.
No one with cancer needs to hear about any of these common topics:
Journey. Battle. Warrior. Brave. Lost (such as “the battle”). Inspiring. Everything happens for a reason. God only gives you what you can handle. At least. Blessing in disguise. Treatable. Manageable. Good cancer. Stable. Toxins (as in “flushing them”). Have you tried…. Kale. My aunt’s friend. Big Pharma. Positive attitude. Fighter. Bucket list. Remission. Scanxiety. —By Hans Casteels, “Patient, Amateur Linguist, and Reluctant Recipient of Other People’s Vocabulary”.
Yeah, he knows that’s more than 20, “but cancer vocabulary is so bad it requires overflow storage.”
We don’t want to be your inspiration, we want to be well. We don’t want to be a fighter in a war we didn’t start, and have no weapons to use in said “battle.”
“We”? Yes, as noted in my previous post: No More Pussyfooting.
Even “remission” and “stable” aren’t quite the positive things you think they are. Have you ever seen a news report that says someone is in “critical but stable condition”? “Stable” means “unchanging”: do you think that it’s good to be in bad “but yay, unchanging!” condition? You may as well say “You will have cancer for the rest of your life.” Which in too damned many cases is true.
Of course, each of his words/phrases has a short discussion along the lines of what I just wrote about a few of them, so do read the full essay if you have interest in knowing any of the whys. There is no paywall for his essays “because civilization has already suffered enough.” Thanks for sending it, Marty.
And Out Came My Own Essay
It’s one that I had been thinking of writing anyway. I was replying to Marty, saying that I was already thinking about writing my own essay about something that “bothered” me when people started finding out I was ill.
As I was telling her what I planned to say, I discovered the whole thing was coming out of my fingers: it has been percolating long enough on a back burner in my brain that it just flowed, fully formed:
Don’t tell them, ‘Let me know if there’s anything I can do.’
Yep, I get it: you’re stuck for something to say, and this phrase means well. It’s also better than avoiding cancer’s random victim. But what it really does is transfer the burden onto the person you’re saying it to.
“Burden”!? Yep: you’re suggesting that they figure out something that you might be willing to do. Are we supposed to guess?
- “Take care of my dog for three months?”
- “Well, not that: we have cats. But ANYTHING!”
(Kit and I took care of a gal’s dog while she sat in hospice with her dying brother. We had cats. The dog was very used to cats: he lived with them. He didn’t care about our cats carefully creeping up to sniff him.)
The best thing a ship-board buddy did was give a great example of how to say this right:
“Let me know if there’s anything we can do. [pause] Even fly to Bangkok to help get you and your luggage back to the ship.”
See the difference? He didn’t just make a suggestion, he also made sure I knew where the bar was. Not “I can water your plants” level, but “I can fly to another country and carry your bags” level — a truly high bar.
And that was when I was going in for surgery and biopsy; I hadn’t even been diagnosed with cancer yet, let alone received the update that it was Stage IIIB, which he still might not even know about yet: I literally have no idea who Kit or I have told at this point.
Back Pocket
Getting a suggestion like that wasn’t a burden; it was a feel-good card I could keep in my back pocket “just in case” what I needed was a pretty darned big favor. Thank you, Paul. It’s a relief that I haven’t needed to ask anything, but I know I still can, and if things get bad enough, I might — because I know where the bar is.
(He didn’t even add “…if you cover my travel costs,” but I would. He’d probably refuse, but here’s how I insist: “I need you to take it so I can feel OK about asking you something else in the future, if it comes to it.”)
In case it’s not obvious, putting an emotional/intellectual burden on someone dealing with a bad diagnosis isn’t really help. Sometimes when heading to dinner, which is on Deck 6 (my office is on Deck 5, and our cabin is Deck 7), Kit will ask me “Which way do you want to go?” as there are several paths.
Sometimes I’ll just take her by the hand and signal her with tiny twists when we need to turn. Other times I tell her, “I don’t know,” which means I’m tired enough that I can’t make such big decisions by myself, which signals that she needs to lead me instead.
Yes, I already get “that” tired, pretty much every day: not because of being emotionally overwhelmed, though yes, this kind of news is pretty overwhelming. It’s more because the first round of drugs to slow the cancer down slows down your body and mind, too. I still have a full week of one of those drugs to go, which means I’ll need to travel while still on it — flying back to Bangkok — for the next round of testing and treatment.
What To Say
I learned what to say when I got divorced. When I told friends (I was still at NASA), what I heard most often was:
- “You don’t have kids, right?” (No.) “Well that’s good.” Gee, thanks.
- “Let me know if there’s anything I can do.” Grunt.
- “She was a bitch anyway.” Actually, no: she was a scared little girl who needed to get away from strong male figures so she could understand what her life was going to be about. I wouldn’t have married her if she was a bitch, you cretin! (Which I never said because it took awhile to gain my own perspective.) And besides: you liked her every time you met her …didn’t you?!
But there was one guy, a good friend I still keep in touch with to this day even though he long ago moved out of the U.S. (thank you, Internet), who simply said, “Oh. I’m sorry, man,” with body language to match.
No questions, not even “how are you doing?” No doesn’t-really-help offer. Just genuine man-to-man empathy. Thank you, Rick. It was perfect.
Another thing it might be valuable to say is, “If you ever need to talk with someone, I’m available.” Especially if you can add, “I went through it X years ago.” It’s a powerful offer because what they’re doing is offering to relive their own worst months to ease your fear. (Thank you, Jia and Christy.)
“I’m sorry.” No need to add anything unless you have a genuine offer to make, like being there for them, and then let it go. Yes, it’s that easy.
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You’re welcome, Randy. I like what you put together. And your examples are priceless!
My takeaways: be present; listen; be clear when offering help. And when you don’t know what to say, be quiet. (That is not the same as disappearing.)
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Good summary, with a good reminder at the end. -rc
At a very sad post-funeral dinner for a great-uncle I barely knew, but who was very important to my mother and her kin, I was asked to go sailing by a much older neighbor. I was a bit surprised, but accepted his offer. He mumbled an “I’m sorry” to everyone else at the table. Once we left the house, he told me that he didn’t say anything more, knowing that he might be thought a fool, lest by opening his mouth he totally erased any doubt.
There was no wind that day. After fiddling around on the boat for a short while we went out for burgers and fries.
My favorite was “When one door closes, another door opens.” I have a refrigerator that does that: close the fridge and the freezer opens; and vice versa. NOT a blessing!!!
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Heh. Yeah, another trite and unthinking grasping at straws. -rc
Thank you. I remember that moment and am profoundly touched you do. What a difficult and cathartic work that must have been hard to write. Of course it’s well-written, but also important to read. Thank you for sharing. You’re speaking for many.
Please share your progress. We want to know. And if there is anything I can do, I will, including listen.
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I’m glad you remember it too, my friend. -rc
I’m sorry.
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Thank you. I’ll let this be “the” one to represent all who are so inclined. -rc
Not a cancer survivor but my wife is. We were lucky in that my wife didn’t need chemo or radiotherapy, but she did need radical surgery to remove her oesophagus (yes, we’re Brits). The reality is that for many people there really isn’t much that others can do to help. They can’t help with the treatment, they can’t sleep in the same room as the infusion pump going all night, and if I’m honest doing the mundane household chores was a way of keeping my brain occupied.
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This is an excellent reminder that if the patient is lucky enough to have a care-giver, like you have and I gratefully have, they need rest, care, help, and respite too. I thank my wife daily because I really feel the gratitude. -rc
My wife has severe Alzheimer’s, and I had to put her in a memory care facility for her own safety. I constantly hear, “Let me know if there is anything I can do”. I know they mean well, but I usually come back with, “Find a cure for Alzheimer’s”.
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Send them to this page, and give them a chance to try again. You miss your wife, in more ways than they grasp. -rc
So sorry to hear that. My mom had Alzheimer’s and my dad cared for her at home for as long as he could before he realized it was time. We visited her twice a week, and it was so hard cause she was always so happy to see us, but never understood why she couldn’t come with us when we left. She was only in memory care for 9 months, but due to covid and our inability to visit her, her disease progressed much faster than it might have normally. I got to see her once before she passed and she had no idea who I was, it shattered my heart into a thousand pieces. It’s been 6 years since she passed, and I miss her every day.
And yes, someone please find a cure for Alzheimer’s.
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I’m quite convinced the Covid isolation pushed my mother down faster too. I was glad I could be there when she died; so many didn’t get that opportunity. -rc
My BFF was going in for knee replacement surgery, and was feeling overwhelmed. We were talking about it, and I said something like “This sounds really scary to me.” Her response? “THANK YOU! Everyone else is saying stuff like ‘you got this’ or ‘it’ll be worth it’, but YES it IS scary!”
A modicum of empathy is worth more than a thousand platitudes.
If possible, I try to offer several specific options. “I love to read out loud if you’d like to listen. And I’d be happy to just be physically present if that is comforting, even if I just sit quietly. But if you are up to reading yourself, give me some guidance and I’d be happy to pick out books from the library and return them when it is time.”
I’ve had several people close to me that had cancer who weren’t up to visitors but did like having people around, making no demands on them. You might be chatting with a spouse, or might visit with others and talk to them. The patient can drift in and out of sleep while basking in the presences of others. And don’t discount the possibility that one of your friends *would* be ok with hanging out in the infusion room. I would happily do that (and have).
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Just being there is huge. So many are simply abandoned. -rc
I’m sorry.
And thank you, I needed this article really badly right now.
A very dear friend of many years was just diagnosed with late-stage leukemia and I just feel lost — they start chemotherapy this week.
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Offer to be there with them, or to bring them some food that they love. If they decline, don’t take it personally. They are probably even more overwhelmed. -rc
I have a rare cancer that will kill me at some point. Doctors call it an indolent cancer, I have no noticeable symptoms now. When the cancer goes active I will have 6 to 9 months where I will go into decline as my blood turns to sludge. Palliative treatment only at that point. The thing is that no one knows when the decline will start. It could be next Tuesday or 5 years or more from now.
So when people learn about my cancer, it usually catches them by surprise and they really fumble around sometimes. I just figure they are trying and let it go.
I wish people wouldn’t say they will pray for me. As an atheist, it doesn’t comfort me, but on the other hand if they want to spend their time that way it certainly doesn’t bother me. But it does bug me when they ask what religion I am and when I say atheist they want to tell me about their religion and how it will help me. I just tell them “You know what people say at an atheist’s funeral? He’s all dressed up and no place to go.”
i was diagnosed with prostate cancer at age 45. I was very selective about the few people I told because I didn’t want to hear the above. It’s back at age 77. Still not telling. I don’t want to be “that guy.”
I get you.
I’m learning things from my wife (we’re both widowed, etc.).
We live in a rural area. 2 years ago, we befriended a similar, younger couple a few miles away through a common activity. Five months ago, she had a sudden health problem and died in short order, leaving a husband and three pets. We sat with him a lot, brought meals, took him to small outings, etc. He rejoined the activity, but …
He now needs 2 joint replacements, separate operations. Here’s where my wife’s skills took over. She started a list of needs from 2 days before until he regains self-sufficiency in about 5 months. Then, she organized a party at his house (with his support, of course), helped him clean the first floor, and invited the other concerned folks from our activity.
His great room was filled with a dozen supportive folks and a fleshed-out list of needs (three of us contributing by then). Everyone from three branches of his small social network got to know one another, play together, eat together, and get a handle on our individual, diverse ways to contribute.
We don’t yet have a solid plan, not until he gets more insurance and timing details, but he now has a stellar knowledge of an integrated, cross-connected network. I know his insurance para-legal; his north-side friend knows the computer engineer less than 10 minutes away.
We built practical hope.
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Wow, what a terrific effort! Fantastic. -rc
Thank you for this essay. As a cancer survivor myself (tongue/tonsil), my father dealt with prostate cancer for the last several years of his life, and I am a Nurse Anesthetist who has participated in hundreds of prostate surgeries, I feel this from many different angles. The list of things not to say really hits me. When people say I was strong, I don’t feel that. I just did what I had to do. If emailing or messaging will help, I am here. I know you have a good support team, so I don’t know if I will do any good, but you are a person I admire, and I want to provide what support I can, even at a distance.
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Right: the first therapy has practically dropped me to my knees with fatigue. Luckily my brain’s writing channel still works, but I have to make my way to and sit down in front of the computer to do it! Thanks for your support. -rc
I’m eleven years out from testicular cancer, so I’m pretty familiar with what you’re going through. Although I didn’t have to endure chemo, the month of daily radiation treatments definitely took it out of me, constantly being nauseated and extremely tired all of the time. Just sit back for the ride and know that the doctors, nurses and techs are doing all they can to cure you; you can better use your energy to be positive and calm through the process.
And if you want to talk, I’m available. 🙂
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Cool you you beat it (caveats understood), and thank you. But daily!? I’d probably ask if they could slow down! OTOH, it seems to have worked…. -rc
Actually, the radiation doc said that “radiation doesn’t work on weekends”; which basically meant that HE didn’t… 😉 But yes, thirty consecutive weekdays of getting zapped the equivalent dosage of about 200 clinical X-rays, very highly focused. If that kind of assault doesn’t tire you out after a week, they’re not doing it right.
When my wife was diagnosed with stage 3 cancer, she was lucky enough to have several sisters to rally around us. One of her sisters stepped up to be the point person. She set up a meal train and fielded a lot of the “how can we help?” offers so we could focus on recovery.
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Family is such a big factor! Mine is thousands of miles away, but supportive emotionally. -rc
My first diagnosis was stage IV esophageal cancer, which I saw as a death sentence. My oncologist told me there was no cure for this type of cancer, and discussed my upcoming treatments ending with the last stage as a “Quality of Life” treatment. Three years later another diagnosis was APL — a very treatable form of leukemia. I wasn’t too worried about that one, but now there were two problems to deal with. The short story is 11 years after the first diagnosis I’m still here — no signs of either one. (My doctor referred to me as the oncology Poster Child!)
I had the same question at the beginning of this story as I have still: Why Me? The first answer is easy — why not me. I don’t know if I will ever find the second answer….
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There are two “Why me?” questions here: “Why did I get these diagnoses?” and “Why did I survive ‘terminal’?” Neither is really answerable, but both are worthy questions. -rc
Randy,
Damn.
I’m so sorry.
DAMN.
I thought adding, “I’ll say the rosary…” (on fb post) along with explicatives may seem in bad taste, but that’s what my heart and brain said.
My car has gas; let me know if you need something picked up/sent.
Kiss your wife for me. Kit- give him a squeeze.
I’m here for either of you in whatever capacity you need or don’t wish to ask for. Love you both. ♥️joan
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Thanks, Joan. The hard part isn’t picking something up, it’s the next 5,000 miles after that! 🙂 -rc
Wow. That is an awfully big number of words to avoid, and even though I think I wouldn’t go for platitudes about “battle” and “be strong” etcetera, I would likely let something very stupid slip out. But, being a genuinely pessimistic person myself, it would probably be best to keep quiet entirely, even though it sounds like a subterfuge.
Picturing me in the situation, I would appreciate an offer to help me with s*cide, but I guess that would sound very wrong to most people. Or some people.
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Depends on the particulars of what one is facing, and the resources available (medical care, hospice, and more). This is not really about prohibited words and phrases; it’s actually about (as usual!) thinking about what you’re saying when faced with friends and family hit with a bad diagnosis. People too often mean well, but say things that are just dumb. I even got a “thoughts and prayers” the other day — and then her face immediately fell as she realized how dumb, meaningless, and inadequate that is. (I said “thank you” and moved on.) Plus, suggestions for what might be better, of course! -rc
Your essay and Hans Casteel’s essay about “what not to say” were both brilliant. I have Stage 4 breast cancer, and I’ve heard so many of those infuriating words and phrases! Thank you very much for including those links in the newsletter.
Cancer sucks, and I’m sorry you’re dealing with it.
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Glad to get a feminine perspective on this from someone who knows all too well. Thanks. Yes, it sucks not just for us, but our families and friends too, who are forced to watch and often feel powerless. -rc
Okay, no good wishes for you. But as one prostate cancer survivor to another in progress — maybe we can get together and compare Gleason scores sometime.
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Well MY Gleason is Jackie, and I know you’re old enough to get that joke. (For others, Dennis is an old JPL friend.) -rc
It’s been over a decade since my Son fought cancer (successfully) and I was unable to travel to be with him or even visit. He still had his stent in when I finally got to be with him a few years later. I felt helpless, and terrified. I shared his battle with friends and told him of all the well-wishes. But mainly, it was “If you absolutely need me, I will find a way to get to you, even if I gave to break laws.” And “I Love you”.
I’m afraid I won’t go that far for you Randy — but know that I do care. And obviously so do the very many other lives you impact.
And I do still intend to follow up on your last message to me when I am up to it. Something to look forward to.
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I am certainly glad you give your Son priority over me, and I appreciate your kind words.
I looked up my last email to you to refresh myself. Yes, still interested in how you chose Mazatlan. 🙂 -rc
A chapter in my cancer joke book, Tumor Humor, concerns the strange things people say. It’s sort of on the topic of what not to say to someone who has cancer.
I’ve had cancer twice, once 23 years ago and once last year. Two different types of cancer, cured of both of them. (I figure that if I must get cancer, I might as well get the curable kind.)
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That’s a great strategy: why didn’t I think of that?! (I know: I might still be curable.) -rc
Mine was colon cancer (Stage IIIB) a couple years ago.
You already have “Everything happens for a reason”, but the one that surprisingly upset me was “How are you doing?” First of all, do you really want to know or are you just looking for the social small answer. And if you are really asking, the answer is “I don’t know. My treatment sucks, but the way it makes me feel changes about every 5 minutes.”
One of the best outreaches was when I was recovering from my surgery. A friend who knew were enjoyed playing simple games reached out and said “I want to bring over a game our family really likes some afternoon”. When she came over, it was a game I already owned and liked so we we just ending up hanging out and talking, but it was so great because she decided on an activity and which didn’t require me to go anywhere. And even though we were only doing it because of my diagnosis, it wasn’t about that.
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I usually answer “Very tired.” It’s almost always absolutely true. And yes, what your friend was really doing was saying, “Let’s spend some time together doing whatever you have energy for.” When I sat with a dying friend, it was 1) simply “being there,” which enabled him to rest better, because 2) we were someone for his wife to talk with. And that was fine with us as we knew we were helping both of them. -rc
I agree on the words never to say. Using the “fight” concept has always driven me crazy. Whatever the outcome it was the treatment and all the people behind and administering that treatment and your luck of getting a treatable or non treatable cancer counts. It had nothing to do with your fighting. I had Non-Hodgkins Lymphoma. Many types (and mine was very treatable). The funny/interesting part was after the treatment I was on steroids for 3-5 days, basically to keep side affects down. However this side affect was see food eat food and who needs sleep, but it worked and having it come back it worked again. My hope/wish is in a while you can proudly wear the T shirt that says “I didn’t survive cancer to die of stress”.
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My life isn’t all that stressful, so we should be good there. 🙂 -rc
I’m a cancer survivor (23 years). We just found out that my husband has prostate cancer. I’m so sorry you are going through this, and I’m so sorry for what he will have to go through. I’m glad you have Kit to help you, and I’ll do my best to be as great a caretaker for my husband as he was for me. This can be so exhausting and sometimes terrifying.
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Indeed it is. Remember, that 23-year-old experience will help you both. Yes, “it’s different” in that they’re different cancers and treatment has progressed, but that’s a good thing. I’m glad you have each other. -rc
I have Stage 4 breast cancer. Maybe tomorrow or in 10 years…What I need to know is what to reply. People say: How are you? I cannot tell them the truth, so what do I say?
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If it’s a close friend, tell them the truth — that’s what friends are for; they can’t be there for you if they don’t know. But in most cases, “How are you?” is a silly cultural greeting ritual: they don’t really want an actual answer, they expect “I’m fine.” (And maybe, “And you?”) Sometimes I’ll reply, “About an 8.” and let them puzzle it out. -rc
A friend used to use “Fair to partly cloudy” as a reply to that question. If they want to think about it, it could be a valid response, or it could just be a joke.
I was diagnosed with colon cancer in 2021. I have no words of comfort, there truly aren’t any. But I also know that every person who told me I could beat it, or that they knew I was a fighter, or they were going to pray for me meant it from their heart. Even having gone through it (and beating it) I still have a hard time expressing myself to someone about such things. All I can really say on the matter is… CANCER SUCKS!!!
I’m so sorry you’re going through this. Pretty much everything about it sucks.
Thanks for the article. I’ve never known what to say, now I know what not to say.
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And, it seems, you now know what TO say. 🙂 -rc