Speaking as a stage 4 metastatic breast cancer patient, here are my thoughts: I know people mean well when they ask anxious questions--even when they offer unasked for foolish advice. It's written all over their faces that they care. In my case, only a professional whom I'd asked for help with my seriously ill husband really struck the wrong note: "you're really worried about dying!" he interpreted. I had asked for ways to get household help for my husband, and figure out how to help my teenagers. "They're fine--they don't need you!" said the pro. So for me, it's all about intention. That guy wanted to show me he knew the score--he wasn't interested in listening. People who are, even if they say the "wrong" thing, are a comfort when I know they mean well. http://www.thecriticalmom.blogspot.com
2
As a survivor (so far) of a more-or-less benign brain tumor, I applaud the suggestion of offering specific and practical help. I can't drive now, and the most helpful people are those from my church who organized to be sure that I have friendly and familiar faces to take me to appointments. So far as asking me how I am. I don't mind. My hopefully ex-tumor is nearly always on my mind and so don't think you are reminding me of something unpleasant that I would have forgotten otherwise. Many people do want to help, and will rise to the occasion as necessary. But please don't blame the patient for their illness. No one knows what causes my very rare kind of brain tumor, and I am grateful to have been spared any judgement there.
2
When my late husband came home and announced:"Honey, I 've got a problem"
I immediately answered "We've got a problem!"
I immediately answered "We've got a problem!"
5
It isn't just cancer-- we're not great at supporting one another through any illness, tragedy, or loss-- especially when these things are rare, or happen to a young person. I just lost my daughter after she was born very prematurely and, same as mentioned in this article, the questions I keep getting are: "How are you? How are you *really*? Are you OK?" But I never feel like the asker is prepared for an honest answer, and the setting where these questions are being asked is rarely appropriate.
Culturally, we're trained that if you only fight hard enough, if you're deserving enough and strong enough, horrible things won't happen. But they do anyway, and when they do, no one knows what to say.
Thanks for writing this article.
Culturally, we're trained that if you only fight hard enough, if you're deserving enough and strong enough, horrible things won't happen. But they do anyway, and when they do, no one knows what to say.
Thanks for writing this article.
7
My dear friend, who died from metastatic breast cancer last winter, loved to hang out at Starbucks and talk about books and her kids, and she enjoyed giving advice about things like furnaces and lawncare. She also loved little outings on days she felt well enough - movies, a walk, strawberry picking, a restaurant. A fun change of scene where we could giggle or talk seriously. Because she had cancer for years, I let her know what my best ways of helping were on an any day basis - I'm great in an emergency to drive or pick up her kids, drive her to the dr or hospital, pick up anything she needed at a store. But she knew to keep me away from a stove.
My thought - get to know the person again - the person might have the same interests as before or 70% of the same interests or 20% of the same interests as before - nothing substitutes for just getting to know them again and let your understanding of your friend be mobile throughout their illness. Then think about how what you're good at and what you enjoy can help meet their interests and needs now, just like we should do with all of our friends.
My thought - get to know the person again - the person might have the same interests as before or 70% of the same interests or 20% of the same interests as before - nothing substitutes for just getting to know them again and let your understanding of your friend be mobile throughout their illness. Then think about how what you're good at and what you enjoy can help meet their interests and needs now, just like we should do with all of our friends.
3
From two cancer survivors- this funny, practical book: There Is No Good Card For This: What to do and say when life is scary, awful and unfair to the people you love. https://www.amazon.com/There-No-Good-Card-This/dp/0062469991
I have had stage 4 breast cancer, with spread to bones and brain, for almost 5 years ago. At first everyone thought I was going to die; I did too. But with some great new drugs and treatments, I'm still here. So people have sort of forgotten about me. Meanwhile, I still have infusions every 3 weeks, MRIs and scans regularly, A gamma knife treatment for brain mets at least once a year. But because I still "look good" and keep up an interest in others and life, no one asks how I'm doing any more. It's rather disappointing and I often feel very alone with my struggle with cancer.
19
I feel like I'm reading from my own diary sans the brain mets our lives run parallel. Many of my friends but a couple all but disappeared and only two of three speak to me on a weekly or more basis. My post diagnosis friends keep tabs on me and have been truly great human beings. My doctors don't really seem to fully understand the extent of the psychosocial collateral damage that filets our lives into small pieces of what they once were. The pain in my instance takes such a toll on my formerly vibrant self some days, one wouldn't know it was me on the phone, and my chemo brain lingers making "forgetful" a more apropos adjective to describe me now anyway. Perhaps I can forget the life I had prior to now and the better part of my life now can become the norm. It's exhausting reading these lists - I put my own together on my blog if you care to read my take on www.cancerbus.com
6
Many friends who have or have had cancer hate being referred to as a "the cancer patient." I'm surprised the author chose to use the word "patient" in the title of his book. Aside from that rather off-putting title, I'm glad there's a new book to help friends and family. I work at a resource center for women with cancer and will recommend they add the title to their library.
1
..."even for lifelong smokers, getting cancer is often just bad luck.". NOT.
1
One thing I disagree with is the "lifelong smoker oftentimes getting cancer by bad luck".
Lung cancer is almost always caused by smoking.
Lung cancer is almost always caused by smoking.
2
I believe the point is to not make the patient feel badly when they get cancer from smoking. No one needs to hear 'well, what did you think was going to happen with all that smoking.'
We all have our shortcomings and I know smokers (only a few) who are incredible people, but they smoke. Some of us drink too much, some of us eat too much, some of us talk too much. We all have our issues. It's better not to point out someone's issues when they're already 'down'.
We all have our shortcomings and I know smokers (only a few) who are incredible people, but they smoke. Some of us drink too much, some of us eat too much, some of us talk too much. We all have our issues. It's better not to point out someone's issues when they're already 'down'.
7
I have a friend who has lung cancer and she never smoked. Imagine how she feels when people assume/criticize her for smoking.
11
10 -15% of people who get lung cancer have NEVER smoked; I am one of them. Because lung cancer is considered a self-inflicted cancer by many, it has not received the same attention as other cancers.
15
I was diagnosed with stage IV breast cancer a few months ago. I'm 41, physically active, non-smoker, non-drinker. I was lucky because I have a fantastic support system: family, friends, coworkers rallied like nothing I've seen before and I only lost one friend (although she was a bestie, and that stung a lot) who just walked away from me, she used my caring bridge page to leave supportive comments every now and then, but she never called or emailed during the months of my diagnosis and the first 2 months of chemo--a 16 year friendship. I was sick as a dog, I lost my hair, I was in the hospital. She never called me. After two heartfelt efforts to tell her what I needed from my friends, I ended the friendship. Some people aren't ready to handle these kinds of situations. It's not pretty, but it's true and it happens.
Please don't step away and stop communicating with a friend with cancer. Don't wait for them to reach out to you---they're minds are racing with everything around their illness and I promise you that they do NOT have time to reach out to every friend individually. It's up to you to check in. Showing up is the best thing that you can do for a friend---even if you don't know the 'right' thing to say or do, just admit that to them. I didn't know the 'right' way to tell friends about my cancer either, and when I shared that with them, everyone took a deep exhale and we felt better and moved on together.
Please don't step away and stop communicating with a friend with cancer. Don't wait for them to reach out to you---they're minds are racing with everything around their illness and I promise you that they do NOT have time to reach out to every friend individually. It's up to you to check in. Showing up is the best thing that you can do for a friend---even if you don't know the 'right' thing to say or do, just admit that to them. I didn't know the 'right' way to tell friends about my cancer either, and when I shared that with them, everyone took a deep exhale and we felt better and moved on together.
28
These are the kinds of suggestions that one should consider when dealing with anyone who has a potentially fatal or serious chronic illness.
I had near constant migraines for over 25 years. I didn't want advice from people who'd never had a migraine. It's not a headache; it's an attack on one's body and all one's senses. No, there are no drugs that ease the pain.
I am sure cancer patients have the same feelings. There's cancer, chemo, and radiation. Each one makes people feel feel really bad. Combined, you're beyond miserable. If you can't think of a way to help, say you're sorry.
Tales of someone else's illness are not helpful. Rides to the doctor, trips to the store, offering--seriously offering--to do housework are often helpful. Don't force your help on anyone.
I had near constant migraines for over 25 years. I didn't want advice from people who'd never had a migraine. It's not a headache; it's an attack on one's body and all one's senses. No, there are no drugs that ease the pain.
I am sure cancer patients have the same feelings. There's cancer, chemo, and radiation. Each one makes people feel feel really bad. Combined, you're beyond miserable. If you can't think of a way to help, say you're sorry.
Tales of someone else's illness are not helpful. Rides to the doctor, trips to the store, offering--seriously offering--to do housework are often helpful. Don't force your help on anyone.
9
When I was diagnosed with breast cancer, I had a hard time telling other people the news. I spent a whole day with a dear friend and held off on saying anything. Once you tell people, it becomes real--it's also quite the buzz kill. Of all the things anyone said to me, it was my psychiatrist who said simply, "I'm so sorry. I'm so sorry." So simple and so comforting. I try to remember that lesson of simple empathy when I hear other people's bad news.
20
I don't understand why "it" must be talked about to such an extent that there must be rules. Seems to me if the patient wants to talk about it, s/he will, so then I would listen but not be too intense about the subject. Would rather let my friend be the guide of how the conversation goes, but still be supportive.
7
It would be great if Ms. Brody wrote an article entitled "How to respond to your friend or family member who has just said the "wrong thing". Ms. Brody's list is spot on and extremely informative however, frozen with the fear of saying the "wrong thing", friends/family might find it safer to totally avoid the elephant in the room. Any mention of my cancer - whether in the "right way" or what I may take as insensitive, I am quick to take a deep breath, pause and reply " you are so kind to be thinking about my cancer" or "you sound really worried about my cancer". For that is really what the person is saying - in their own uninformed, awkward way.
25
Thank you. I'm a caretaker of someone with a different but fatal disease and I must say that one thing that's difficult for me are friends who want information from me that my spouse has chosen not to share!
9
Last March was diagnosed with lung cancer when I was 36. What surprised most was the fact I got flowers when I was in the hospital. I never received flowers before. Three people brought flowers and I took them home. I loved it. Some friends brought cookies. Even now months after the diagnosis I don't like to talk about it and answer questions and speculate about future. I just don't know. I enjoy the moment and little things. The cancer is gone but I feel very different. It may come back and no one knows. I got depressed and people would suggest me to go out or go to parties. I just wanted to stay home. They compared they past experiences with mine and how they got out of their problems. That made feel weak. I felt it was okay to be sad but people want to me to be positive and hopeful. I never lost hope, I just want to be realistic about what was going on. I just wanted to play my computer games and forget about cancer. Now, I just want a Corgi puppy :P I knew people cared and wanted to help. Sometimes they made me feel sad and I thought they didn't care. I was wrong. So many people helped me.
20
Your Nine Don'ts should be Trumped with an utter (malaprops on poipose): don't tell udders what not to do. Ten Demandments for your disposal!
4
Having 3 primary family member who have lived or died with cancer, know that each day of life is precious, so reach out. If it turns for the worse, meaning hospice, cancer can spread to the brain and your loved one may no longer recognize you or only be able to hear your voice or feel your reassuring hand. A priest or rabbi does know what to say in that the bible is a guide. A long distant phone call from a grandchild is not comforting at all in that the cancer patient might not recognize it or feel abandoned.
1
In my experience no one is going to say the right thing. And you are lucky if they stick around long enough to share half a sandwich and don't run accords the street with a wave and "nice to see you are better". For my parents, my spouse, my children, and the few friends I had time for it was very clear they needed me to pretend the road to recovery was easy and the under paid therapist called this adjustment.
Best of luck with the advice column here but I think your message is too hard to hear.
For now,
K
Best of luck with the advice column here but I think your message is too hard to hear.
For now,
K
7
I've been having the same experience. For two years now and the journey continues. Pretending I'm ok on the days when i can act as though..works fine for everyone. The feeling of loneliness is something i will never wish on any one..no matter what...
1
There is no right and no wrong when love is the basis of the questioning.
9
I brought my cancer-stricken friend in the hospital my used copies of the NYT. Don't know if that's a good or bad practice.
2
I really wish someone would offer to walk my 1 year old italian spinone... it would be heaven as i recover from surgery. Alas, you are right as i just get alot of questions and i get tired of talking about it to everyone except family. It is wearing me out mentally.
6
I've read this kind of article perhaps 10 times before. And I have to say that I agree with the few critics here that these lists of "horrible" gaffs and offenses made on the part of generally well-meaning people only add to the anxiety and uncertainty said well-meaning people have about engaging with those who are struggling with serious illness. And many, for that very reason, choose to avoid or pull away from "the sick" all together. There is no definitive list of do's and dont's. Something asked or said that may offend one person may be appreciated or go barely unnoticed by another. I know first-hand what it is like to care for immediate family members who are extremely ill. Ultimately, I think what matters in the end is one thing: That you show up and let people know you care.
22
My father died of lung and throat cancer on New Year's Eve. Even after many months of painful treatment, he never complained. My mother was his primary caregiver, and it was hard for her to take time for her own needs. Fortunately my brother and his wife live nearby and picked up the slack with grocery shopping, cooking and transportation. Because I live in a different state, I was not able to visit often. My only suggestion therefore is what I tried to do: let the person who has cancer - along with those who are doing the "heavy lifting" - know you are thinking of them (praying for them). My father couldn't talk, but he loved to hear our voices on the phone. In this age of instant communication, a quick text or email doesn't take long to send. My father was grateful for the many beautiful cards he received from friends and family, and these were a comfort to my mother then and afterwards.
4
Your suggestion about "supporting the supporters" is good and not one we hear often. I live overseas and when my father had ALS I wasn't able to be there as I would have liked. My brother and his wife ended up picking up a lot of the slack. I tried to show them I was thinking of them and grateful by sending messages, calling, and once sending a gift pack from their favorite deli. I sent my mother flowers and called. It's not just the patients who need care and support, but the caregivers too.
1
You still didn't offer an alternative to our normal catch-all greeting "how are you." What should one say???
4
"It's so great to see you!!"
13
My personal favorite: 'And your breasts will look better than ever after reconstruction!'
13
So bad. Another was when, shortly after my early stage diagnosis, my husband's ex told me she just came from a funeral of a young coworker who had died of breast cancer 3 weeks after diagnosis. And that that woman had missed her mammogram. I was so shocked I didn't know what to say. She also told my step daughter I would get perfect new big boobs (riiiight) but I could die. My daughter promptly repeated that to my 5 year old son. When he asked me if I was going to die-- that was literally the worst moment of the whole ordeal. Luckily I was able to tell him with great confidence that was highly improbable.
I did have some people who I really realized were going to be my friends forever. Some surprises for sure.
I did have some people who I really realized were going to be my friends forever. Some surprises for sure.
Such a great pice of advice. When my aunt was diagnosed, I didn't know how to be there for her or what to say, not say, ask, not ask. I was unemployed at the time, and I had time on my hands, so I offered to walk her dogs on a regular basis. I would walk them for a little over an hour, come back and sit for a cup of tea and talk with my aunt. We bonded over that time. She passed in February, but I will cherish these moments. Don't ask, just do it.
13
Well, I'm a cancer patient, and I can tell you intonation is all in that "how are you?" Some people ask because they're friends and they really care and want to say they are fond of you. Others ask because they are scared stiff, and for them the question means: "Reassure me that you only have cancer because you did/ate/felt something wrong, and whatever you did is something I myself would never do." What's exhausting, in the middle of breast cancer, is reassuring these worried-well types.
http://www.thecriticalmom.blogspot.com
http://www.thecriticalmom.blogspot.com
9
I wish my mother had read this article before she found out her sister was dying of cancer. My mother comment on her sister having Stage 4 Lung Cancer was "Oh, she's so happy, she's the center of attention now". Wow, just wow.
13
A friend just died from ovarian cancer. Her "village" of friends (as she called us), sat with her during her hospice experience during her last months. As she was single, we promised she wouldn't die alone, and she didn't. We were organized into time slots, and many of us had "chores" from driving her to her chemo prior to hospice, to taking out her garbage and recycling. She was rarely alone, and we had meaningful conversations as we all witnessed her courage to live, when living was being slowly yanked away from her. I was with her at the beginning of the 5 year journey, as I am an ovarian cancer survivor and reached out when I heard she was diagnosed. Knowing each of us experiences cancer in our own profound way, I let her lead me to what she needed, which in the beginning was knowledge, friendship and laughter. At the end of her journey, her "village" gave her what she needed and that was comfort, security and love.
25
Excellent article, brimming with good suggestions! The perfect Jane Brody piece. -- The psychosocial aspects of serious illness are vital to consider. Brody has the "secret sauce" that seems to make every essay beautiful and important.
1
I'd like to stress how important it is to follow through with what you offer to do for a cancer patient. When I was recovering from abdominal cancer surgery, a couple of well meaning friends and family members said they would "drop by soon" with lunch or dinner, but never came through. I know people get busy etc but don't promise something you can't deliver. It's a letdown.
12
Sadly, I fear it is lists of "cancer don'ts" that make too many people profoundly frightened to even speak to or visit friends with cancer, lest they say the wrong thing. I always remember when a friend of mine was in the final stages of leukemia a mutual friend called me up and said she wanted to go see him in the hospital but didn't think she could. "Why not?" I asked. She told me, "I'm so worried I'll feel awkward or I'll say something upsetting or I just won't know what to say." My advice to her was simply to be herself, to talk with him they way she always did and to say what was on her mind or just be with him quietly if she didn't feel like talking. I think that's what most people want from true friends in any situation: care and honesty.
She didn't go then, and time ran out, which is a shame. I think he would have taken some joy from seeing her, even if it she inadvertently said something that momentarily rankled or seemed silly or uninformed.
In the end, there is so much more than semantics to what makes meaning when the going is tough -- be it cancer or any other difficulty in life. Illness shouldn't keep us from being real with one another. You do your best in challenging circumstances knowing you might not get it 100% right; such is our lot as humans.
She didn't go then, and time ran out, which is a shame. I think he would have taken some joy from seeing her, even if it she inadvertently said something that momentarily rankled or seemed silly or uninformed.
In the end, there is so much more than semantics to what makes meaning when the going is tough -- be it cancer or any other difficulty in life. Illness shouldn't keep us from being real with one another. You do your best in challenging circumstances knowing you might not get it 100% right; such is our lot as humans.
9
You've pointed out one of the major issues for loved ones who wait to express gratitude, say goodbye, etc.: Regrets. Generally, people who are dying know it and welcome the opportunity to "tie-up loose ends,"
You're absolutely right that waiting creates more problems for the person who survives than the loved one who didn't.
You're absolutely right that waiting creates more problems for the person who survives than the loved one who didn't.
5
Another one-size-fits-all pronouncement that tries to instruct us how to speak and act in difficult situations. If you love and value the person, if you are open and compassionate, then you'll know what to say and do. If not - then why practice hypocrisy or encourage duplicity or falsehood ?
2
I wish it was as simple as choosing the most compassionate words. For many of the people I counseled, compassion wasn't enough to ease their cancer journey.
1
I don't think Jane was maintaining that there is a one-size-fits-all approach in serving the needs of people living with cancer. Rather, there are some reoccurring supportive themes that many people have indicated worked for them. We are all unique as is our cancer and the way we have chosen to deal with it.
3
HAVING NOTHING TO SAY
When people meet and have not anything to say,
should they be very frank and tell each other facts like this?
I think it's inappropriate, because such statements may
make them miss nuances of nothing while they reminisce..
[email protected]
When people meet and have not anything to say,
should they be very frank and tell each other facts like this?
I think it's inappropriate, because such statements may
make them miss nuances of nothing while they reminisce..
[email protected]
2
I've had 2 cancers, fortunately neither very serious, but I didn't know that at the time of diagnosis and treatment. Because these were rapidly treated (surgically), my appearance and behavior weren't affected in any way so people could not discern that I had cancer. In both instances I was out of commission for only a week or two. I decided not to tell anyone other than my spouse, sister, and children and asked that they not tell anyone because I didn't want to deal with the kinds of questions and comments mentioned in this article; I didn't want people's pity; and I didn't want to be the subject of their conversations. Two and four years later, I'm glad I made the decisions I did. I realize I was fortunate not only that the cancers were easily treatable and my condition was not apparent and that most cancer patients aren't so lucky. But if you are, you might consider my approach.
10
Same here. Surgery, exhausting radiation.
Only my husband, doctors, and support groups knew/know.
After long life experience, I already know people say the worst and stupidest things - no thanks.
Only my husband, doctors, and support groups knew/know.
After long life experience, I already know people say the worst and stupidest things - no thanks.
7
I was diagnosed with esophageal cancer in August 2014, and since then have had a full range of treatments, including chemo and radiation therapy and the surgical removal of my esophagus, which is not a surgery to enter into lightly. Two years later, I'm doing okay, though my life has been turned upside down.
Cancer is perhaps the most feared disease. I decided to be very open about my disease, hoping that I might help other people overcome their own fears. I don't mind talking about it, and I'll give as much or as little information as someone wants to hear. I have also agreed to be a mentor, sort of a big brother, to new patients, who need to hear, from another patient, what it's really going to be like.
We all face our own mortality; those with cancer may ponder it especially intently. My biggest challenges are to live through the treatments, but I also feel a challenge to live a meaningful life.
I truly don't mind people's questions or comments.
Cancer is perhaps the most feared disease. I decided to be very open about my disease, hoping that I might help other people overcome their own fears. I don't mind talking about it, and I'll give as much or as little information as someone wants to hear. I have also agreed to be a mentor, sort of a big brother, to new patients, who need to hear, from another patient, what it's really going to be like.
We all face our own mortality; those with cancer may ponder it especially intently. My biggest challenges are to live through the treatments, but I also feel a challenge to live a meaningful life.
I truly don't mind people's questions or comments.
27
You and other people who are unafraid to openly talk about and explain your feelings regarding a potentially fatal illness are a great resource. Like Portia's speech in the Merchant of Venice, what you're doing is "twice blessed." Your helping others confront difficulties and you are creating a legacy for yourself.
4
And above all, DON'T say, "How can I help?" or "What do you need?"
As a cancer patient or caretaker, I don't know. AND I DON'T HAVE TIME OR ENERGY TO SORT IT OUT FOR YOU.
And of all the things that are now crowding into my day, with hospital appointments, emergencies,figuring out how to make a living, trying to cope with curtailed/limited/radically different physical functioning... the LAST thing I have time for is to sit down with you and brainstorm around what you can do to make yourself feel useful. Either YOU figure it out, or don't bother.
Here are some ideas for things that are WAY better than "how can I help":
-"Do you have someone organizing errands for you? Do you want me to do that?"
-"How are you fixed for meals for you/your spouse/the kids? Can I bring something on Fridays? I know your oldest is gluten free, any other constraints I should know about?"
-"I know that you/spouse/kids need to go to (event/function). Would it help if I organized some transport for you?"
(for co-workers): "How are you fixed for time off? Would more be useful to you? Some companies let us donate unused time off. Let me check into that and see what we can do..." Then contact HR/co-workers and see about donating time off to the afflicted person or caregiver.
THESE are all questions that someone can actually ANSWER. But "how can I help?" is just more work, at a time when we're already reeling.
As a cancer patient or caretaker, I don't know. AND I DON'T HAVE TIME OR ENERGY TO SORT IT OUT FOR YOU.
And of all the things that are now crowding into my day, with hospital appointments, emergencies,figuring out how to make a living, trying to cope with curtailed/limited/radically different physical functioning... the LAST thing I have time for is to sit down with you and brainstorm around what you can do to make yourself feel useful. Either YOU figure it out, or don't bother.
Here are some ideas for things that are WAY better than "how can I help":
-"Do you have someone organizing errands for you? Do you want me to do that?"
-"How are you fixed for meals for you/your spouse/the kids? Can I bring something on Fridays? I know your oldest is gluten free, any other constraints I should know about?"
-"I know that you/spouse/kids need to go to (event/function). Would it help if I organized some transport for you?"
(for co-workers): "How are you fixed for time off? Would more be useful to you? Some companies let us donate unused time off. Let me check into that and see what we can do..." Then contact HR/co-workers and see about donating time off to the afflicted person or caregiver.
THESE are all questions that someone can actually ANSWER. But "how can I help?" is just more work, at a time when we're already reeling.
61
Thank you for writing this. People mean well and are mostly scared. To say the wrong thing, to be the next victim, often looking for that detail that would make them immune to cancer. I was very open about my diagnosis and I had to summon all my understanding when people used words I detested, like prognosis, or asked dumb questions, the mindless positivity, the abundance of fighting/battling/beating as if I was running a race or engaged in warfare. But. People mean well. Being available, being practical and asking open ended questions worked for me. I eventually chronicled my experience and even wrote guidelines similar to your article that I sent to friends and family.
19
The "stupid remarks" are used by well-meaning friends and relatives as a kind of shield for themselves. If they can just find some reason why you got it and they didn't, they can keep themselves from getting it. If they stay away from you, they can keep it from happening to them. It is not rational, it is selfish -- but it is also human nature. This applies to cancer, any other serious illness, or loss of a loved one. People with a disease or who have suffered a loss will often let you know what they need if you just step out of yourself long enough to listen to subtext.
6
I'm in chemo right now. It's my second trip through this. I don't mind at all if people ask me how I am. I'm fine with folks letting me now that they care. I feel cared for when people offer help (I rarely need it). What I really, really DON'T want is tears. Please don't cry in public over my illness. It's not about you and I really don't want to go to that emotional place in public. Also, please don't tell me how to eat, how to care for myself or which alternative medicine I should be trying. It's enough to simply let me know that you care.
13
For heaven's sake! I'm not supposed to ask 'how are you?' That's ridiculous. Instead I'm supposed to tell you I'm bringing dinner. Yes, but now you're going to be mad at me because I'm bringing dinner and you don't want it because you're doing well, but I don't know that because I'm not allowed to ask you how you are!!
Can't we just agree that it's a difficult situation and people are going to say the wrong thing, or say the thing that strikes you wrong, even if they are trying to help?
I'm getting a little tired of this kind of article.
Can't we just agree that it's a difficult situation and people are going to say the wrong thing, or say the thing that strikes you wrong, even if they are trying to help?
I'm getting a little tired of this kind of article.
28
There's asking, "How are you / Would it be helpful if I [brought over some dinner, etc]?" and there's the "How are you / I mean, how ARE you / No, really -- How. ARE. You?" [= "Please tell me all the little details, no matter how intrusive, I don't mind, including how you're battling valiantly 24/7 and meditating on zapping each and every cancer cell and drinking green smoothies to whoosh them all away but if you're not doing that then I know you won't mind if I admonish you to 'think positive' and empty your mind and eat a rainbow of raw foods that are harvested on the full moon"] which is generally accompanied by the "cancer face" [= the "Oh, poor baby, you poor poor pitiful little you" expression].
Sure, friends, family, patients, and survivors all have been known to say wrong, rude, and / or flakey things in an attempt to say something. I totally agree with you on that one.
Sure, friends, family, patients, and survivors all have been known to say wrong, rude, and / or flakey things in an attempt to say something. I totally agree with you on that one.
6
I wish i read this article when my friend was diagnosed with cancer 3 years ago. I could have used these tips. She has since died and maybe i could have said more supporting things ... but i never felt she was critical. We all can do better
3
As has been pointed out by others in this comments section, cancer victims are NOT the only victims out there, and people with illnesses of certain other kinds, fatal or not, deserve just as much compassion and care as any cancer patient. Ms. Brody's horribly long list of "Don't" orders disquietened me as they seemed exclusive and occasionally rather mean.
8
As you rightly point out, cancer is a community event, not just something confined to its victim.
Instead of focusing on the specifics of the list, think of them as well-intended words that may be interpreted differently by the person who is coping with cancer. When many of these words and phrases were said to me--and I said them to others--I interpreted them as well-meaning but not offering the help I needed.
Instead of focusing on the specifics of the list, think of them as well-intended words that may be interpreted differently by the person who is coping with cancer. When many of these words and phrases were said to me--and I said them to others--I interpreted them as well-meaning but not offering the help I needed.
And you wonder why people avoid people who are sick. It's like walking on egg shells. Give people credit for trying for pity sake even if they may sometimes say the wrong thing.
28
People can use the advice... my friend died of cancer last spring and i can say i wish i read this 3 years ago
3
I am in the middle of treatment for breast cancer. I have 10 more rounds of Taxol, then 25 sessions of radiation (so, I guess I'm not in the middle; more in the midst) For the most part, I have been overwhelmed by the kindness of others. My friend set up a "meal train" back in August after my mastectomy, and it has been a huge load off my chemo-addled mind, knowing that the family is fed.
I have one co-worker who persists in asking me what stage I am. This bothers me. I told her that I didn't know and didn't want to know because it's just a category, not my destiny. (This of course, is not true. Of course I know my stage and tumor size, etc)
Some well-meaning "friend" at the grocery store gave me a hug and said "How ARE you?" And I said "Well today I feel really well. But the bummer is I have to go tomorrow for chemo. It's my last session of Adriamyacin Cytoxin, so I am so happy about that!" And she replied "Well you know the last one is the worst of all. I hope they told that!" (Said the person who has never had cancer )
Besides these two turkeys, it's been a pretty smooth sail, socially. Of course, I mainly stick close to home. I wish all of my fellow cancer peeps the very best.
I have one co-worker who persists in asking me what stage I am. This bothers me. I told her that I didn't know and didn't want to know because it's just a category, not my destiny. (This of course, is not true. Of course I know my stage and tumor size, etc)
Some well-meaning "friend" at the grocery store gave me a hug and said "How ARE you?" And I said "Well today I feel really well. But the bummer is I have to go tomorrow for chemo. It's my last session of Adriamyacin Cytoxin, so I am so happy about that!" And she replied "Well you know the last one is the worst of all. I hope they told that!" (Said the person who has never had cancer )
Besides these two turkeys, it's been a pretty smooth sail, socially. Of course, I mainly stick close to home. I wish all of my fellow cancer peeps the very best.
21
I've also had taxol amd carboplatin for ovarian cancer 19 years ago... and radiation for breast cancer 11 years ago. It just sounds to me like you need a hug and I want to send you that hug. I wish you the very best. Different strokes for different folks ... but, for what it's worth, I found meditation helpful. Particularly, meta or loving kindness meditation. With all the stress and craziness surrounding cancer treatment ...the sense of calmness through meditation brings comfort. That and a cup of tea. Sending a hug to you now...
7
I'm a new cancer survivor, so still feel very vulnerable. I had great support from family and friends during my treatments, but there are a few more things I can add to Jane Brody's excellent article. Please do not call and weep over my cancer and especially do not say, "I wish it was me." Please do not take offense if I do not offer to have you come and be with me. This is not about you. I can only handle so much and visitors may or may not be helpful. Please do not talk about someone you know who just died of cancer. Even if you then assure me I will not. You don't know and neither do I. Please do not tell me about your research on why you think I got cancer. It doesn't matter why. I need all my energy now to cope with it, and your theories don't matter. Your support, however, is invaluable. Please support my choice of doctors and treatment, and do not recommend I try vitamin supplements, cut out sugar, or consider alternative treatments in a foreign country. I'm making the best decisions I know how, under very stressful conditions. If you really want to be helpful, love my children and do wonderful things for them. They are walking through terrible times and could use a friend. Thank you , Jane Brody, for your insightful article.
45
One of the problems with articles like this is that obviously, everyone is different. There is a certain amount of hubris in telling people what they may or may not say to someone with cancer. How do you, Stan Goldberg, know that everyone with cancer feels the way you do? I had early-stage ovarian cancer and had surgery but no chemo. I was adamant that I didn't want anyone to know I had cancer. Lots of people with cancer have no problem telling the whole world about it. So what makes the Stan Goldbergs of the world the official spokesmen for everyone who has had cancer?
18
A good question! if I believed everyone was the same, I would be just as upset about my comments as you were. But, that's not what I or Jane (if I can speak for her) believe.
We all bring into our cancer our past, values, needs, diagnostic stage and type of cancer. The result? A unique amalgam that demands an individual approach to what we need.
We all bring into our cancer our past, values, needs, diagnostic stage and type of cancer. The result? A unique amalgam that demands an individual approach to what we need.
3
When I was diagnosed with thyroid cancer this year, my own primary care physician told me that if you have to get cancer, it was one of the best to get.
Who knew there was a good cancer.
There is nothing good about cancer.
Who knew there was a good cancer.
There is nothing good about cancer.
17
Of course there is nothing "good" about cancer, but some types simply have better treatments available and better survival rates. As a recently diagnosed breast cancer patient, I indeed feel fortunate that I have one of those. It could be a lot worse, and I know it!
6
When my Dad was in hospice, the nurses used the phrase, "What kind of day are you having?" I liked this because it elicited a response that was honest and allowed him to really speak of discomfort if that were indeed the case. It seemed much more sensitive than "How are you?"
As someone with an incurable disease, please only ask how someone is if you are prepared to hear the honest answer AND offer a compassionate response. If someone tells you bad news, it is cruel to act as if you did not hear it because you are uncomfortable.
As someone with an incurable disease, please only ask how someone is if you are prepared to hear the honest answer AND offer a compassionate response. If someone tells you bad news, it is cruel to act as if you did not hear it because you are uncomfortable.
26
The phrase, "What kind of day are you having?" is one used quite often in hospice and as you point out, has more benefits than "how are you?"
And you're right that often the person who says, "how are you," doesn't understand how it is interpreted by the person living with cancer, nor may be prepared to accept the answer.
And you're right that often the person who says, "how are you," doesn't understand how it is interpreted by the person living with cancer, nor may be prepared to accept the answer.
1
I am currently in remission but neighbors asked how are you and sometimes how are you really and i was touched, not bothered, sometimes i elaborated and sometimes i didnt. the cancer functioned to bring out the best in people i barely knew, it was exhilarating to experience. The comments about being helpful were spot on, fatigue is a major side effect and people doing chores, dropping by to help, all invaluable but the best thing is that people who appear and stay for a bit are a distraction, and that's the best medecine of all. The universe checks in and it is enormously rewarding to witness.
11
That is awesome!
5
My dear friend just died from metastatic melanoma two weeks ago, and her husband and my family were the only ones (besides her two small children) she chose to share the last month or so of her life with. She just couldn't handle the looks of pity, the "how are you" questions, the "let me know what I can do" anymore. She wanted to be treated as the woman she always was. She wanted to sit and have girl talk about our husbands, to enjoy a home-cooked meal from my husband, to find out about how my daughter was liking her new school, to snuggle with her little ones. She just wanted to live, because she knew she wouldn't be able to much longer. The biggest lesson I learned from witnessing her illness was to be compassionate and take your cues from the patient. And show up, be there. Bear witness to what they're going through, even if it's the hardest thing you may ever do.
42
OMG. See my other post about "let me know what I can do". No. YOU figure out what you can do, or just hug me (or squeeze my hand) and say, "This really sucks. I am SO sorry this is happening to you."
3
It is certainly true that we shouldn't make any comments to patients that risk making them feel guilty about lifestyle issues. However, while it's also true that cancer risk is multifactorial, it's not correct to posit here that "even for lifelong smokers, getting cancer is often just bad luck". Bad luck is surely one factor, but so is lifelong smoking--an enormous factor. The fact that some people develop lung cancer without ever having smoked, and that some lifelong smokers escape cancer, doesn't contravene the powerful association between smoking and
cancer. The last thing we need is to have public understanding go backward on this issue, now that the tobacco industry's decades of fraud and concealment of smoking's dangers has been outed. Thank you.
cancer. The last thing we need is to have public understanding go backward on this issue, now that the tobacco industry's decades of fraud and concealment of smoking's dangers has been outed. Thank you.
5
Does anyone actually need reminding of the scientific evidence that smoking is a cancer crap shoot or time bomb? Furthermore, some smokers develop cancers that are completely unrelated to smoking. That is why it is silly and patently false to assume that someone's behavior is responsible for their illness. Also it is often the case that some narcissists attribute their relative health to one or another of their socially approved lifestyle choices, such as Yoga or juicing, when that is often false, unproven, magical, self-righteous thinking and extremely distressing to a cancer patient, and usually delivered blithely and indifferently. How do I know? I just do.
9
A thoughtful article ... but ... saying almost anything comforting beats saying nothing. People are scared of the word "cancer" and sometimes choose not to (or are afraid to) say anything.
What is most important is for friends to offer help to the caregivers. Spouses and family members are often with the cancer patient 24/7 - bringing in a meal, offering to do the laundry, or offering to stay with the patient for a few hours (and giving the caregiver a much-needed break) can help everyone.
What is most important is for friends to offer help to the caregivers. Spouses and family members are often with the cancer patient 24/7 - bringing in a meal, offering to do the laundry, or offering to stay with the patient for a few hours (and giving the caregiver a much-needed break) can help everyone.
7
Also see "Don't Ask Me How I Am," a blog post by Barbara Brenner: http://barbarabrenner.net/?p=20
Barbara was a breast cancer activist who died (of ALS) three years ago. "So Much to Be Done," a book of her writings about breast cancer and health activism, was published this year by University of Minnesota Press. It includes that post.
Barbara was a breast cancer activist who died (of ALS) three years ago. "So Much to Be Done," a book of her writings about breast cancer and health activism, was published this year by University of Minnesota Press. It includes that post.
5
Thanks for the thoughtful and useful advice. I'm sure I've said some of the wrong things to friends and co-workers diagnosed with cancer even though I've gone through it myself.
7
We all make mistakes Ellen. I can't tell you the number of unskillful things I've said to other people living with cancer even though I've lived with it for 13 years and have counseled many people. We do the best we can given the circumstances of our lives.
2
I have Prostate cancer. I don't really mind if people ask me how I am doing but it is hard to answer some times because frankly, I don't know. Try asking this question to yourself: how are you dealing with your own impending death? Because yeah, I got cancer but I still very well may live longer than you. And nobody escapes a final reckoning.
18
Great video on the same topic. Hilarious, funny and so to the point.
Ben died recently.
https://youtu.be/5zavfuu4w6w
Ben died recently.
https://youtu.be/5zavfuu4w6w
11
Wonderful video. Really! Thanks.
(says the breast cancer patient)
http://www.thecriticalmom.blogspot.com
(says the breast cancer patient)
http://www.thecriticalmom.blogspot.com
I'm a cancer survivor. I detest the war terminology widely used by people. Beating, fighting, battling,winning, kicking ass, defeating the beast, warrior, etc. News flash! When you die from cancer you're not a loser.
119
I don't like that rhetoric either. I am in treatment for breast cancer and that's what I say"in treatment for. " I am not battling. I am getting through. And my beloved dad, who died 15 years ago from lung cancer, did he not "fight hard enough?" Ugh
9
I totally agree with you. I think it´s really hurtful and offensive towards the people who die from cancer.
13
Amen Allison! I never refer to myself as a survivor, even though I've been living with cancer for 13 years. I find it more realistic and emotionally more satisfying to think of myself as someone who has learned to adapt. "Survivorship" has built into it the concepts of "winning," "losing," and "responsibility," none of which my clients and I have found to be particularly useful.
2
When my nephew was diagnosed with non-Hodgkins lymphoma for the third time at age 45 one of his Facebook "friends" had the nerve to post and ask what "stage" he was. I was LIVID. I posted publicly that I didn't think it was an appropriate question in hopes of shaming or at least deterring him. When he continued, I took the matter to private messaging him until he finally decided it wasn't worth my relentless hounding to continue further. I just don't understand some people.
13
I have a co worker who is desperate to know my stage. It's obnoxious. I told her that "I didn't know ".
8
Good for you. Hopefully you got through to that person.
4
I kind of think it was up to your nephew to decide how to handle this rather nosy FB friend. Your nephew was the patient...let him decide what he wants to say or not say.
2
While being treated for breast cancer, the words I heard the most were "I'll pray for you." That's nice, but what I really could've used was a few casseroles, or even an offer to pick up fast food. I was exhausted all the time, barely able to move. But lots of people were praying for me, they just didn't do anything else. Praying is cheap and easy, but actually preparing food or picking up a few groceries takes effort.
161
Maybe the people who only offered to pray for you were undergoing their own personal struggles and could barely muster the time and effort to feed themselves and their own families.
Maybe a prayer was all they could afford either financially or in terms of time to do for someone else. Many, many people's lives are filled with suffering no one else is aware of.
Maybe a prayer was all they could afford either financially or in terms of time to do for someone else. Many, many people's lives are filled with suffering no one else is aware of.
3
4th stage lymphoma, now in remission: I never minded friends asking me how I was feeling. I have a good friend, whose children had given her an expensive wig, asked me if I wanted to borrow it for my (temporarily) bald pate. I declined, but was grateful. Cards and plants cheered me up. I also liked storis of people who survived serious cancer and the necessary treatments. When I got my diagnosis I wrote to my friends to please not send me "natural" cures and healthy regimes, because I was going to follow exactly what Dr. M, a lymphoma specialist at MSK prescribed, which included eating lots of high caloric foods like whole milk and butter, yum yum. Offers to grocery shop or take me for some of my injections (my husband no longer drives) were deeply appreciated, as were occasional dinners brought to the house. What I did not like: "be strong". It is well-meant but I did not feel strong and didn't feel like trying. "I didn't write to you until I Googled lymphoma, and you have a 60% chance of recovery". PLEASE let the doctor predict odds. Advice: just be available and do what you can for your friend, business associate or, especially, lover.
14
What I did not like: "be strong". It is well-meant but I did not feel strong and didn't feel like trying. My sympathies.
My least favorite is the common "What doesn't kill us makes us stronger?" Really, those are my choices? Couldn't I just be weak?
My least favorite is the common "What doesn't kill us makes us stronger?" Really, those are my choices? Couldn't I just be weak?
15
On a variation of this theme, I find the lingo of cancer inappropriate. People don't battle cancer or put up a good fight. They go into remission (long term I guess is cured) or they don't. They have treatments that work or not. They may struggle with the effects of the disease, but I find battle a poor metaphor. I read obits of person who have passed and it says something like "after a long battle..." It you want to use the battle/war analogy why not say :
Joe Doe died of cancer, He was the grunt in what was a battle where the generals (doctors failed) as did the NCO's (nurses and other medication distributors failed. The war profiteers (big Pharma and the other medical machine companies) supplied defective weapons just like "All My Sons," so poor Joe died. He didn't choose the battle, plan it or execute it. So Joe was a casualty.
Joe Doe died of cancer, He was the grunt in what was a battle where the generals (doctors failed) as did the NCO's (nurses and other medication distributors failed. The war profiteers (big Pharma and the other medical machine companies) supplied defective weapons just like "All My Sons," so poor Joe died. He didn't choose the battle, plan it or execute it. So Joe was a casualty.
14
Now this is an excellent example of what NOT to say! People do battle cancer. People do put up a good fight. We (yes, including me) fight for our lives. We fight the side effects, the nausea, the intense pain, the body damage. We fight to move when the drugs cause our joints to lock up. We fight to carry on with as "normal" a life as possible despite the burns of radiation treatments, day after day, week after week. Many, like me, develop very militaristic lingo to describe the things we do as we fight day to day. And it is a fight. Make no mistake. We fight for our lives. And when we encounter idiotic comments, some well-meaning, some not, we just roll our eyes and walk away.
7
"What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?”
+++++++++++
I disagree with the above 100%. As for placing 'burden' on the cancer patient by saying 'let me know what I can do to help', just because someone has cancer doesn't mean they are incapable of speaking up. Let's face it, they have a lot to deal with. So they have every right to be a grown up, and ask for help, especially if you offered it to them.
Conversely, many people specifically do not want help and/or some people don't want to see anyone during this time, but maybe a very chosen few people. So for anyone to 'instruct' the patient with 'I'll be coming by with food...what day is best for you', is frankly, rude. Also, maybe the patient can't predict in advance, what days if any, they may be up for a visitor and/or a bunch of food. Esp if the person is on chemo, what they will or will not eat is very specific. Cooking a dinner is a nice offer, but it must be on the patient's terms, not yours.
+++++++++++
I disagree with the above 100%. As for placing 'burden' on the cancer patient by saying 'let me know what I can do to help', just because someone has cancer doesn't mean they are incapable of speaking up. Let's face it, they have a lot to deal with. So they have every right to be a grown up, and ask for help, especially if you offered it to them.
Conversely, many people specifically do not want help and/or some people don't want to see anyone during this time, but maybe a very chosen few people. So for anyone to 'instruct' the patient with 'I'll be coming by with food...what day is best for you', is frankly, rude. Also, maybe the patient can't predict in advance, what days if any, they may be up for a visitor and/or a bunch of food. Esp if the person is on chemo, what they will or will not eat is very specific. Cooking a dinner is a nice offer, but it must be on the patient's terms, not yours.
27
My father-in-law expected my wife/his daughter to just do everything for him, while loudly declaring he "never asked for anything." Regarless of his health difficulties, he was simply a mean man. With some people it really is a no win situation, no matter how carefully and caring you attempt to tread.
9
I agree with the fact that simply stating "I'm bringing dinner" is rude--it needs to be on the patient's terms.
But I really, really, really, double-plus strongly disagree that being asked to sort out how you can help me is just "being a grownup".
No, it's not. Solving problems and sorting out what work people can do is a JOB. It's called MANAGEMENT. It's usually paid quite well.
And if I'm sick, or caring for someone who's sick, I really don't have the time to sort out something yet another volunteer can do for me. Either figure it out yourself based on your knowledge of me and the situation, or limit yourself to expressions of sympathy. Don't ask me to figure out a chore for you to do, and don't insult me by telling me that doing so is simply "being grown up".
But I really, really, really, double-plus strongly disagree that being asked to sort out how you can help me is just "being a grownup".
No, it's not. Solving problems and sorting out what work people can do is a JOB. It's called MANAGEMENT. It's usually paid quite well.
And if I'm sick, or caring for someone who's sick, I really don't have the time to sort out something yet another volunteer can do for me. Either figure it out yourself based on your knowledge of me and the situation, or limit yourself to expressions of sympathy. Don't ask me to figure out a chore for you to do, and don't insult me by telling me that doing so is simply "being grown up".
7
Hi Lisa, You are absolutely right that the agenda of needs should be set by the person living with cancer and not the friend of loved one. I'm sorry if the example I gave to Jane implied that I was setting the agenda.
The intent to be specific is not meant to offer an autocratic choice. Rather it reflects the reluctance of many people to request help. Often it is associated with a difficulty on becoming dependent, or accepting a change in one's identity.
You don't have to be forceful in offering help. My clients have told me that offer of specific choices rather than generalities are more beneficial
The intent to be specific is not meant to offer an autocratic choice. Rather it reflects the reluctance of many people to request help. Often it is associated with a difficulty on becoming dependent, or accepting a change in one's identity.
You don't have to be forceful in offering help. My clients have told me that offer of specific choices rather than generalities are more beneficial
1
I do not have cancer, but I have been living with HIV for nearly thirty years so I do have experience in dealing with illness and the reactions of others. I have two bits of advice:
1) Do not make the mistake of defining someone by their illness. There are few things so annoying as having every thing you do viewed through the prism of your illness.
2) This advice is for the person with the illness - As someone who has been both patient and caregiver I've learned a few things. Never forget that your illness is not just happening to you. It is happening to everyone who cares about you as well. Just because you are sick does not mean that your responsibility to those you care about has ended. And remember that most people have not experienced what you are going through. They cannot know what you want or need without your help.
1) Do not make the mistake of defining someone by their illness. There are few things so annoying as having every thing you do viewed through the prism of your illness.
2) This advice is for the person with the illness - As someone who has been both patient and caregiver I've learned a few things. Never forget that your illness is not just happening to you. It is happening to everyone who cares about you as well. Just because you are sick does not mean that your responsibility to those you care about has ended. And remember that most people have not experienced what you are going through. They cannot know what you want or need without your help.
62
What a constructive, sensitive article - thank you. The best advice is to just listen and be as selfless as possible. When I was 31 and had cancer that left me unable to have children, I had to endure comments like, "Oh, you're young, you'll get over this." And an especially insensitive relative said, "I know just how you feel - I had four C-sections." (because we both had abdominal incisions). This conversation happened at my bedside right after my surgery. Another relative left a pamphlet at my house that blamed cancer on having a sinful life. Twenty seven years later, I still feel the sting of those insensitive words. Fortunately, we've been richly blessed with a child we adopted, and whom I wouldn't have in my life without also having cancer. Sometimes there are silver linings. I hope many, many people read this article, as well as the comments, and take away some wisdom about what NOT to say when someone has cancer. Saying nothing at all is sometimes better.
31
I had a student at the time of my first round of breast cancer offer to bring in her pastor to "heal" me. I had a family member's new girlfriend tell me that "I have friends who have had it & they're fine," as if I'd be failing if I wasn't fine, too. The best were inmates of a federal prison taking my writing class. When I told them I'd be bald the following week because of chemo, the outpouring of genuine compassion from every one of them was the most heartening of anyone's reaction. One offered to include me in his daily declaration of good intentions. I think they got it about my feeling of powerlessness over my circumstances, as they were powerless over theirs. People don't like you having cancer because it makes them uncomfortable, so they shove you away with pat phrases. The prisoners were already uncomfortable & took me in as their own.
74
The absolute worse are the clowns who start circling the sick with their religions and/or religion substitutes. They're like dope dealings hanging around a playground. They prey on the vulnerable. My significant other died of cancer and people with their religions and alternate therapies etc were a plague. My love was vulnerable and looking for answers and easy to seduce and it created problems between us during those difficult times since part of the indoctrination is to encourage separation from anyone who isn't "supportive" of whatever they're selling. And I do mean selling because there is always money involved. Do I sound bitter? You betcha. If you or a loved one is sick and some old friend or relative comes around selling this snake oil I recommend shutting the door and cutting them out of your life.
9
Interesting. When I was in treatment I started writing a family aquaintance that was in jail. I felt a connection with her.
6
I wrote an essay about teaching in the prison while bald from chemo called "Confinement" that appeared in "The Sun" magazine in August 2007, issue 380. I can send it to you somehow if you want. The links between being sick & being imprisoned are pretty emotionally interesting. Thanks for commenting!
1
Note how this article starts:
"What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right.
But as caring as those words may seem, they are often not helpful and may even be harmful."
It seems that this is a much more general social issue, which cancer just makes more acute. Note that this is in some form one of the most common forms of greeting worldwide: "How do you do?", "Que pasa?", "Comment allez vous?", "Wie geht's?", and so forth. Most people seem to be just fine being asked this, but some people react very negatively.
I don't know quite what "how are you" means worldwide, but I suspect that in the US it often relates to our rural pioneer past. I lived for years in mountainous rural northern Vermont. It was clear that the statement there was an affirmation of a social contract. People want to be independent, but when you need help, your community will pitch in. We saw this in action after the massive flooding from Tropical Storm Irene.
So, if you hear "how are you" then it probably means "Do you need help, anywhere from direct intervention to simply giving you a chance to vent?" In this context, "I'm fine, how are you?" means "Thanks for affirming the mutual aid code but this time I can handle it myself."
"What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right.
But as caring as those words may seem, they are often not helpful and may even be harmful."
It seems that this is a much more general social issue, which cancer just makes more acute. Note that this is in some form one of the most common forms of greeting worldwide: "How do you do?", "Que pasa?", "Comment allez vous?", "Wie geht's?", and so forth. Most people seem to be just fine being asked this, but some people react very negatively.
I don't know quite what "how are you" means worldwide, but I suspect that in the US it often relates to our rural pioneer past. I lived for years in mountainous rural northern Vermont. It was clear that the statement there was an affirmation of a social contract. People want to be independent, but when you need help, your community will pitch in. We saw this in action after the massive flooding from Tropical Storm Irene.
So, if you hear "how are you" then it probably means "Do you need help, anywhere from direct intervention to simply giving you a chance to vent?" In this context, "I'm fine, how are you?" means "Thanks for affirming the mutual aid code but this time I can handle it myself."
21
Very helpful....have been communicating with a friend who has pneumonia. Asked her how I can help....but of course...head slap...she can't even breathe without coughing. So my next communication was: I'm bringing you dinner tonight.
Basics are always good.
Common sense, not always common.
bikiniwaxchronicles.com
Basics are always good.
Common sense, not always common.
bikiniwaxchronicles.com
14
Karen Ray: BINGO!!! You got it, girl!! She can't breathe without coughing. No, she doesn't have breath (or energy) to tell you what you can do. But "how about I bring dinner tonight" can get a head shake in response... and double points if you know her likes/dislikes/food preferences.
3
Good advice for any serious ailment, not just cancer. Also, family members sometimes have to deal with insensitive comments, some of which can be horrific like "my father battled cancer and won, because he's a fighter." - implying that *your* father just isn't trying hard enough. It just doesn't work like that. Cancer isn't a battle that strong people win - you have no control over deranged DNA. And "studies" that show upbeat people beat cancer are mixing up cause and effect: of course people who are feeling better feel upbeat.
18
You're absolutely right John about "survivorship" terminology and it's implications (e.g., "you didn't try hard enough")
I believe most of the insensitive comments my clients related to me were the result of difficulties, fears, etc. found in the commenters life, not my client's behaviors or attitudes.
I believe most of the insensitive comments my clients related to me were the result of difficulties, fears, etc. found in the commenters life, not my client's behaviors or attitudes.
Please DO ask me how I am, if you're so inclined. I will tell you how I'm doing, and am grateful to asked. I will answer candidly or not. What is strange and isolating, is not being asked.
46
I understand and wil keep asking!
What a minefield this is. It seems like cancer is two diseases. While it ravages the body, it also severely disrupts interpersonal communications. In a perfect world, people with cancer would have a communications person as their liaison with friends and family, because this article presents cancer as being beyond ordinary people's ability to talk about.
The dismal scenarios in this column suggest that one should be very selective in disclosing a cancer diagnosis and limit disclosure to a strict need-to-know basis. And, honestly, would it be inhumane to suggest that people with cancer be forgiving of others' verbal missteps?
The dismal scenarios in this column suggest that one should be very selective in disclosing a cancer diagnosis and limit disclosure to a strict need-to-know basis. And, honestly, would it be inhumane to suggest that people with cancer be forgiving of others' verbal missteps?
18
Interesting implications in your response. Firstly, I don't think the story's author meant to imply that it's always a mine field to talk to cancer sufferers, but to offer guidance to those who are unsure what to say or do. Secondly, I suspect the author would disagree that the takeaway should be "cancer patients should just shut up about it, not tell anyone, and just ignore any cruel or stupid remarks."
It's really less hard than you seem to have concluded. Just ask the person what they need from you.
It's really less hard than you seem to have concluded. Just ask the person what they need from you.
5
Sadly, this seems to fall along the lines of political correctness. Every word out of our mouths now must be curated.
I mean, I do get that lots of people say really 'dumb' things, especially when it comes to severe illness or death, because they are uncomfortable. But if there's one thing I've learned, it's that honesty is much better than lame comments such as 'you look great' (after a person underwent a series of chemo treatments) or 'don't worry' or 'I'm sorry for your loss'. Those are all hollow.
I mean, I do get that lots of people say really 'dumb' things, especially when it comes to severe illness or death, because they are uncomfortable. But if there's one thing I've learned, it's that honesty is much better than lame comments such as 'you look great' (after a person underwent a series of chemo treatments) or 'don't worry' or 'I'm sorry for your loss'. Those are all hollow.
6
You are right about the pervasiveness of cancer. Not only does it affect the person's mind and body, but also the community in which she lives.
I don't think the article suggested that being compassionate is beyond an ordinary person's ability to talk about it. It did point out that although we know WHAT we could like to accomplish with our words and behaviors, we may not know HOW to do it. The suggestions offered by Jane is the first step in transforming compassion into useful behaviors.
I don't think the article suggested that being compassionate is beyond an ordinary person's ability to talk about it. It did point out that although we know WHAT we could like to accomplish with our words and behaviors, we may not know HOW to do it. The suggestions offered by Jane is the first step in transforming compassion into useful behaviors.
2
During my ovarian cancer treatment a neighbor asked, "How are you doing?"
After I told him I was getting along well he said, "That's not what I hear."
That was 19 years ago. My last annual exam was great.
Some folks simply must be ignored.
After I told him I was getting along well he said, "That's not what I hear."
That was 19 years ago. My last annual exam was great.
Some folks simply must be ignored.
24
As a kidney and breast cancer survivor, I have to disagree. I wanted to talk to anyone who would listen about my condition. When my friend was diagnosed with stage 4 kidney cancer, I would visit her and she too wanted to talk about what she was going through including the effects of the treatment. Each person is different and I think it is important to let the patient guide you in what they want.
45
My husband of 25 years just died after struggling for a year with glioblastoma multiforme. Prognosis was always death, so the question, "how are you" took on a particularly surreal meaning. "How are you today" was a better way to approach it, though still kind of ridiculous. And as his 24-hour a day caregiver for 12 months, I was lucky enough to have many people asking me the same question, although it was just as difficult (if not more so) to answer. Many times, no one thinks to even ask the caregiver how they are, including the doctors. The caregiver's well being is critical to the patient's well being.
34
I'm very sorry for your loss. The caregiver role is exhausting, and I hope that you have a supportive circle of family and friends to help you recover from the emotional and physical toll of caregiving. I completely agree with what you wrote.
8
Karen, you are absolutely right about people ignoring a caregiver's needs. I view caregiving as a bucket with hole in the bottom. As long as the amount coming in doesn't exceed the amount leaving, caregivers can be effective.
Problems occur when the caregiver (and others) falsely believe the caregiver's needs should ALWAYS be subverted to those of the person needing care. Total self-sacrifice might have been appropriate for Mother Teresa, but it spells disaster for long-term caregivers
Problems occur when the caregiver (and others) falsely believe the caregiver's needs should ALWAYS be subverted to those of the person needing care. Total self-sacrifice might have been appropriate for Mother Teresa, but it spells disaster for long-term caregivers
2
I was surprised that so much of this applied to our family when our daughter was diagnosed at birth with a severe disability .One difference was that the question "how are you?" wasn't painful. When friends said, "We don't know if you want to talk about this or not," it was a relief. "Yes," we said. "We do."
Still, we were often told that things were going to be fine when we knew they weren't; we were offered the names of doctors who were not specialists; we were given examples that were irrelevant. People said that scientists were making discoveries every day; maybe they would find a "cure" within our lifetimes. We appreciated their desire to help and their genuine good intentions but it was painful. They often wanted reassurance that this wouldn't happen to them although they didn't realize it. They asked if I had prenatal testing, if it ran in the family, if I had been sick or on medication during pregnancy. Unscientific and thoughtless
The worst was when people avoided us because they didn't know what to say. Better to say, "I don't know what to say" than to disappear. Unsurprisingly, we are now comfortable talking to people with cancer and to people who have been stricken by sudden disaster or loss. It's important to take pleasure from this, that you can pass along what you have learned. And to focus on the extraordinary people who really helped.
Still, we were often told that things were going to be fine when we knew they weren't; we were offered the names of doctors who were not specialists; we were given examples that were irrelevant. People said that scientists were making discoveries every day; maybe they would find a "cure" within our lifetimes. We appreciated their desire to help and their genuine good intentions but it was painful. They often wanted reassurance that this wouldn't happen to them although they didn't realize it. They asked if I had prenatal testing, if it ran in the family, if I had been sick or on medication during pregnancy. Unscientific and thoughtless
The worst was when people avoided us because they didn't know what to say. Better to say, "I don't know what to say" than to disappear. Unsurprisingly, we are now comfortable talking to people with cancer and to people who have been stricken by sudden disaster or loss. It's important to take pleasure from this, that you can pass along what you have learned. And to focus on the extraordinary people who really helped.
13
Well, gosh, maybe I should write a book. "Stop lifting those boxes" is not help. It is stupid, it is a complete lack of understanding, and it certainly is a son helping his father in the only way he can. I am not criticizing anyone. But I think there isn't a way to generalize illness (that's all cancer is, an illness) or to set "standards". Yes, before you ask, I have cancer - actually, I have two cancers, and so far, medical science has done a good job. I know all about how "people" don't know what to say and what to do - but you know, that's because they've been taught to drive and career, we don't talk about that other stuff, and frankly, you don't know what cancer is until that visit to your doctor's office, after your initial diagnosis, and all of the staff behaves differently. I once invited a girlfriend to accompany me to a therapy session, and she fainted. Yah. Should have known that isn't what girlfriends are for.. ;)
4
I don't think I would call my son't general offer stupid, but rather an initial attempt to bringing me back to reality.
With my own cancer and with the people I counseled, I came to realize that interpreting a behavior should only be done within the context it occurred. For my son, his observation made sense, given the history of our relationship. If my estranged uncle said it, I would have been furious.
Just as those of us living with cancer are unique, so are the people who care about us.
With my own cancer and with the people I counseled, I came to realize that interpreting a behavior should only be done within the context it occurred. For my son, his observation made sense, given the history of our relationship. If my estranged uncle said it, I would have been furious.
Just as those of us living with cancer are unique, so are the people who care about us.
2
I was doing okay until early on a friend said, "I know you'll be fine because you have such a great attitude." I knew my prospects, the statistics, but for some reason that simple thought was surprisingly depressing. It was a good lesson n what not to say, almost as good as the, "at least it's not breast cancer" advice I also got :). Yes I'm well now, twice.
6
Most people hope for the best, often disregarding reality. When friends and family uttered "hopeful" outcomes without knowing the specifics of my cancer, I understood the place from where it came.
The task I had was to gently bring them to the reality of my cancer. That process is often difficult for both the person living with cancer and those who hope it will vanish.
The task I had was to gently bring them to the reality of my cancer. That process is often difficult for both the person living with cancer and those who hope it will vanish.
1
Forunately most human beings rarely lose the ability to laugh even in the direst of circumstances. When I was was in hospital for cancer treatment, the visits I appreciated the most were from people who made me laugh by telling funny stories from outside the world of illness and who were not afraid to laugh when I also tried to inject some occasional black humor into my situation. For me, laughter really was the best medicine.
18
A couple of suggestions. Many years ago with my first diagnosis of breast cancer and when I was going through treatment, a friend called to ask if she could make a dinner for us. I was so grateful for this. Unfortunately, the meal was centered on eggplant. No one in our family likes eggplant and the meal was tossed. Sadly, this woman worked very hard to help us, and I felt terrible. This taught me that when I make a meal for a friend who is going through something similar, I specifically ask what acceptable foods the family would most likely eat.
A few years ago when my husband was dealing with terminal cancer, an acquaintance of my husband called to ask if she could make a meal for us. Again, we were grateful. But, then she stated she would bring us the meal and eat with us. While she was being kind, and helpful, this was awkward for us. While I wished I could un-invite her, I felt uncomfortable doing so. I was put in the position of entertaining someone I didn't know and had little energy to entertain.
So what would have been helpful instead it turned out to be more of an obligation. I was still trying to work, care for my husband and family. After a full day's work, I had to come home and clean up the house, and then entertain someone, by the end of a long day, I had little energy to entertain.
So, from this, I learned to offer help but not add to a family's already stressful situation.
A few years ago when my husband was dealing with terminal cancer, an acquaintance of my husband called to ask if she could make a meal for us. Again, we were grateful. But, then she stated she would bring us the meal and eat with us. While she was being kind, and helpful, this was awkward for us. While I wished I could un-invite her, I felt uncomfortable doing so. I was put in the position of entertaining someone I didn't know and had little energy to entertain.
So what would have been helpful instead it turned out to be more of an obligation. I was still trying to work, care for my husband and family. After a full day's work, I had to come home and clean up the house, and then entertain someone, by the end of a long day, I had little energy to entertain.
So, from this, I learned to offer help but not add to a family's already stressful situation.
17
If they live in a city forget cooking and give a gift certificate to GrubHub or one of the other delivery services.
11
Eggplant?! That's a goofy meal. My friend, with metastatic breast cancer, just flat out wrote on her blog that her family was fussy. They wanted restaurant GCs and listed their choices. End of story.
5
I totally agree with the article.
upon the diagnosis of cancer of my husband, few of my well wishers remarked that since he smoked he got the cancer. I thought that this was the only reason my late husband had developed cancer. But during the course of treatment, I came across cancer patients who were teetotalers and also non smokers.
Once the diagnosis is out it is better not to blame the person for any reason. It really hurts both the patient and caregivers.
upon the diagnosis of cancer of my husband, few of my well wishers remarked that since he smoked he got the cancer. I thought that this was the only reason my late husband had developed cancer. But during the course of treatment, I came across cancer patients who were teetotalers and also non smokers.
Once the diagnosis is out it is better not to blame the person for any reason. It really hurts both the patient and caregivers.
15
I agree. What's done is done. That said, I usually encourage my still-smoking patients to consider quitting, as it leads to better outcomes with treatment. As another poster mentioned, a lot of people want to cast blame so they feel less vulnerable.
2
We all know life comes to an end and we get one shot at existence. How we deal with thoughts of death is to some degree shaped by our early associations.
I first openly admitted, questioned and became depressed with questions of existence in my late thirties and realized that thread had been woven into the fabric of my life with recurring, if fleeting, thoughts from childhood.
Clearly the stories of eternal life are used to ease the confusion, but most of us understand the here and now is all we can ever know.
This truth may appear brutal to many, but it is the truth and we are all better equipped to deal with truth than fiction.
I first openly admitted, questioned and became depressed with questions of existence in my late thirties and realized that thread had been woven into the fabric of my life with recurring, if fleeting, thoughts from childhood.
Clearly the stories of eternal life are used to ease the confusion, but most of us understand the here and now is all we can ever know.
This truth may appear brutal to many, but it is the truth and we are all better equipped to deal with truth than fiction.
3
***we are all better equipped to deal with truth than fiction.***
I'm inclined to say that human history disproves this assertion.
I'm inclined to say that human history disproves this assertion.
3
Terils,
Human history taken in isolation agrees with you, but if progress is looked at as an evolving process in which our brains are simply overtaking our bodies as the means of social growth, you may concur.
Regardless the slow and often false starts, we are on the right path and those who are facing death up close and personal seem to be the ones leading.
Human history taken in isolation agrees with you, but if progress is looked at as an evolving process in which our brains are simply overtaking our bodies as the means of social growth, you may concur.
Regardless the slow and often false starts, we are on the right path and those who are facing death up close and personal seem to be the ones leading.
I volunteer at a cancer treatment clinic and am often stumped with what to say to a patient, whether it is greeting them as they arrive, after their appointment or during their treatment. Most patients I address generally, 'how have you been today?', 'how was the traffic' etc. However, with some that I know or rather have come to know on a more personal level I ask how they are in a broader sense. Most I find are appreciative of the concern and are more than willing to explain their progress and how they are feeling. Yet, some are different and less willing to discuss their private business (which is completely fair). Generally I think it depends on your relationship with the patient and how they interact with you. I find it more of a gut judgment than an all inclusive 'don't ask' policy.
12
My friends and family were very helpful after my diagnosis. During treatment they were also fantastic. I feel very fortunate to have had them around during that lousy time.
8
I can echo your every word.
1
I'm a cancer survivor and I never had any complaints about the question, "How are you?". It could mean, "How are you physically?" and it could mean, "How are you emotionally?". Either way, I always interpreted it to mean "I care" and an invitation to talk about it if I wanted to. Serious illness doesn't entitle one to wear a chip on the shoulder.
72
My thoughts, exactly. I, too, am dealing with a cancer diagnosis and do not feel offended or put off by someone asking how I am. I'm honest about what is going on.
15
I agree. Some of the other comments mentioned -- about other people who had the same cancer, about being "lucky", etc. -- can be problematic, but not, "How are you?" I'm a big girl. I can choose to answer openly and honestly, or to say that I don't feel like talking about myself today, or to just give the ritually correct "Fine, thanks, and you?"
4
I agree though I found I've had to make quick judgments as to whether the person actually wants to know or not. Some ask "how are you" as a simple greeting, expecting a "fine, how are you" in response. Others, usually those who are following my journey and have some understanding of what's happening, they actually do want to know how I'm doing. It's to very few that I give any kind of detailed answer. But to me, it's kind to ask.
3
Nearly three years ago I lost my wife of thirty four years to a glioblastoma multiforme (an aggressive, malignant primary brain tumor). Frankly, there never was any hope. My children and I only wanted her weeks following diagnosis to be as comfortable for her as possible. Her inexorable physical and cognitive deterioration was our constant companion.
Many visitors during her illness and at the shiva following her death grappled with "what is the right thing to say?". If you share that question the answer is "probably nothing". We felt anger, confusion and loss of faith. Nobody wanted to share those answers. Instead we heard meaningless, less-than-helpful platitudes. A silent presence. A warm embrace. A tear in your eye to match my own.
Many visitors during her illness and at the shiva following her death grappled with "what is the right thing to say?". If you share that question the answer is "probably nothing". We felt anger, confusion and loss of faith. Nobody wanted to share those answers. Instead we heard meaningless, less-than-helpful platitudes. A silent presence. A warm embrace. A tear in your eye to match my own.
38
"I don't know what to say" and a hug is more often than not correct.
3
Amen. Sometimes a silent, compassionate presence can be more helpful than a sheath of words.
1
I find this article quite frustrating on many levels.
1. There are many people suffering diseases where the prognosis is no less grim than a cancer prognosis. They endure years of treatment, are incapacitated, without knowing whether they will ever be healthy again, or they endure treatments which will require them to take medications that will make them sick for the rest of their lives (i.e. immunosuppressants). But this article (along many of the "cancer articles in NYT) implies that somehow cancer patients' suffering is somehow “special”. And with that, it makes light of other patients’ experience.
2. “no two cancers are alike.” Likewise, no two cancer patients are alike. I have known cancer patients who took great pains to disguise their physical chances, and others who didn’t. I have known patients who have told only their partners of their diagnosis, others who told “everybody”. I’ve known cancer patients who have joked about the effects of their treatment (i.e. baldness, weight loss).
3. All those “don’ts” can achieve quite the opposite of the intended effect – “Oh my, if all cancer patients are that sensitive, I’d better back off and say nothing at all!”. And no, not everybody can offer time and resources, as they themselves may be ailing.
1. There are many people suffering diseases where the prognosis is no less grim than a cancer prognosis. They endure years of treatment, are incapacitated, without knowing whether they will ever be healthy again, or they endure treatments which will require them to take medications that will make them sick for the rest of their lives (i.e. immunosuppressants). But this article (along many of the "cancer articles in NYT) implies that somehow cancer patients' suffering is somehow “special”. And with that, it makes light of other patients’ experience.
2. “no two cancers are alike.” Likewise, no two cancer patients are alike. I have known cancer patients who took great pains to disguise their physical chances, and others who didn’t. I have known patients who have told only their partners of their diagnosis, others who told “everybody”. I’ve known cancer patients who have joked about the effects of their treatment (i.e. baldness, weight loss).
3. All those “don’ts” can achieve quite the opposite of the intended effect – “Oh my, if all cancer patients are that sensitive, I’d better back off and say nothing at all!”. And no, not everybody can offer time and resources, as they themselves may be ailing.
46
Your points are valid but I don't think they negate the article, which is only trying to offer tips to those who want to help but don't know what to say or do. I don't think the article is insisting that everyone drop what they're doing and serve the cancer patient on bended knee. Life goes on.
3
I agree that no two cancer patients are alike. We all bring our history into our understanding and acceptance of cancer. I don't think Jane was maintaining that they are.
I think that what distinguishes cancer from many other illnesses is that even when a physician says "you're cured," many people harbor doubts. While the same occurs with other illnesses, "uncertainty" is endemic with cancer
I think that what distinguishes cancer from many other illnesses is that even when a physician says "you're cured," many people harbor doubts. While the same occurs with other illnesses, "uncertainty" is endemic with cancer
There are many things cancer has in common with other acute, chronic, or progressive illnesses. What makes it different is that with cancer, there is always uncertainty, whether it is a mild skin cancer or Stage IV breast cancer. I've had clients who were "free" of cancer for 25 years as concerned about a reoccurrence as someone who just began chemotherapy.
And yes, there are many illnesses that are as severe or physically/mentally debilitating as cancer, and there should be articles addressing them. The focus of Jane's article was on specific things that can be done to make the cancer journey easier.
I hope the article didn't give the impression that those of us living with cancer are over-sensitive. Rather, Jane offered suggestions or minimizing problems that applied to many (but not everyone).
And yes, there are many illnesses that are as severe or physically/mentally debilitating as cancer, and there should be articles addressing them. The focus of Jane's article was on specific things that can be done to make the cancer journey easier.
I hope the article didn't give the impression that those of us living with cancer are over-sensitive. Rather, Jane offered suggestions or minimizing problems that applied to many (but not everyone).
I appreciated this article. I was a caregiver for my sister, who died after a 3-year struggle with central nervous system lymphoma. Through that experience, I learned that people meant well but really had no idea how insensitive many of their comments or actions were. One family friend asked my elderly mother, "What's the prognosis?" My mother was speechless because she had hope that my sister would recover. Others thought they were being helpful by giving us information about treatments they had read about (even though they were not well-informed about her particular type of cancer). My sister was being treated by some of the leading experts in the world, so unless they were in the medical profession and knew of the latest research, this info was not needed. But I understand that they thought they were being helpful. Some relatives paid frequent and very long visits with my sister, thinking they were doing something helpful, when in fact, shorter visits would have been better. Offering to drive her to chemo treatments once in a while, prepare a meal, or do something fun with her teenage son would have been much appreciated. Some of these people actually were offended when we suggested they shorten their visits. I realize it's difficult to know what to say and do but it's always best to ask. Thank you for addressing this important topic.
20
**One family friend asked my elderly mother, "What's the prognosis?" My mother was speechless because she had hope that my sister would recover.**
I don't understand this statement. "What's the prognosis?" is a reasonable question to ask in any situation where someone has an illness. It only means "what is expected to happen next?" Did your mother assume "prognosis" meant "how long 'til she dies?" or something?
I don't understand this statement. "What's the prognosis?" is a reasonable question to ask in any situation where someone has an illness. It only means "what is expected to happen next?" Did your mother assume "prognosis" meant "how long 'til she dies?" or something?
4
Frankly, "what's the prognosis" DOES sound like, how long do they have to live?
2
Reading this column and comments I am led to believe that "How are you?" is never appropriate to ask anyone in any circumstances.
16
Many of us with cancer have heard it all from family, friends and strangers who "meant well." Some of us have just gone to our place of comfort which for me is listening to the silence, offering my lap to the cats, and being content with the little gestures of kindness and consideration offered by those I meet on my journey.
6
The least favorite comment said to me: "Maybe if you weren't so negative you wouldn't have 'caught' breast cancer." Replied at if attitude were really the cause I'd have been dead decades ago.
PS cancer-free (and free of that friend) for 15 years now.
PS cancer-free (and free of that friend) for 15 years now.
48
When counseling patients who have heard similar comments I suggest they think about these unskillful (cruel?) ideas as a reflection of the speaker's problems rather than anything done by the person with cancer.
1
Thank you for the article about how to speak with cancer patients. My husband only wanted me to take him to chemo treatments, I think because we were comfortable being silent together. Chemotherapy rooms can be improved to make treatment more comforting to the patient. The single reclining treatment chairs with moveable desk chairs across from them is not conducive to sitting together quietly. Whenever medical professionals enter the room, the visitor often has to move away or otherwise disturb the patient. I really wanted to sit side by side with my husband, maybe on a double-wide treatment chair. That way, he would have gotten the comfort of touch throughout treatment and I believe the nurses would not have had to step around me or the desk chairs in the rooms. Holding hands across the room is not feasible during treatment, especially when someone suffers from chemo-induced neuropathy, so side-by-side touching can be the best thing.
40
A friend with breast cancer told me how upsetting it was to be told "You're so lucky" - meaning that the cancer was caught in time. A cancer patient does not feel lucky in any sense of the word and lay people do not really know if the cancer has been stopped. In this case it had not and my friend did not survive.
30
Doctors and acquaintances alike said this to me all the time, "You're so lucky you got this type of cancer, it's so treatable." or, "You won the lottery of cancers..."
Really, what part of having cancer before 30 is lucky?!
Really, what part of having cancer before 30 is lucky?!
18
They also don't understand that cancer is a life sentence. If there's anyone out there who's had it who doesn't worry that it'll come back, I admire their ability to compartmentalize. For me, it's a shadow over my life 'til the end.
19
The donts also apply to talking with someone who has a serious chronic disease. I've had MS for over a decade and see my neurologist every three months, yet some of those close to me persist in denying my illness ("but you look so healthy" and "are you sure you have MS?"), insisting I try the latest crackpot cure they read about online or questioning my actions (should you be doing X, given your condition?).
23
What hit me about this was the experience I had when people told unbelievable tales of others "beating" cancer, making me feel that my wife was just somehow not doing it right, not having the right positive attitude or drinking the right snake oil. This is not like cheering on a sports team, because when the home team loses, they don't die.
There are some, undoubtedly well-meaning, friends of my wife whom I have trouble forgiving for pushing false cures and telling of others who are perfectly fine now. Did she do something wrong? Did she disappoint her friends by not beating that cancer?
And now I have to deal with it. Well-wishers calling to console me, who in the end I have to console, since they were so sure she would make it through that they are unprepared for the reality that she did not. Even the best person, the one who watches what they eat, exercises, avoids bad things, even they can die.
This article hits a lot of good points. To help someone with cancer, help them deal with the things they can't deal with, help the family. Food is always a comfort. Sitting with her was a comfort. Don't worry if you don't know what to say, and don't fill that space with stories of miracles. Be there if you can, offer prayers, not excuses, if you can't.
We all pray for the miracle, but if it doesn't come we don't want the guilt. Some people with some cancers can go on to live a normal life. I know, I am one of those. Some die within weeks of their diagnosis.
There are some, undoubtedly well-meaning, friends of my wife whom I have trouble forgiving for pushing false cures and telling of others who are perfectly fine now. Did she do something wrong? Did she disappoint her friends by not beating that cancer?
And now I have to deal with it. Well-wishers calling to console me, who in the end I have to console, since they were so sure she would make it through that they are unprepared for the reality that she did not. Even the best person, the one who watches what they eat, exercises, avoids bad things, even they can die.
This article hits a lot of good points. To help someone with cancer, help them deal with the things they can't deal with, help the family. Food is always a comfort. Sitting with her was a comfort. Don't worry if you don't know what to say, and don't fill that space with stories of miracles. Be there if you can, offer prayers, not excuses, if you can't.
We all pray for the miracle, but if it doesn't come we don't want the guilt. Some people with some cancers can go on to live a normal life. I know, I am one of those. Some die within weeks of their diagnosis.
48
You've directly addressed one of the most avoidable problems associated with cancer: guilt and survivorship. Viewing cancer as a battle unfairly places the person living with it in a difficult position if the cancer becomes virulent; Placing of blame on the person with cancer for not trying hard enough.
I've found it more beneficial to think of myself as someone who is coping with cancer, not necessarily surviving it. Complement me on my ability to adapt, not continue living.
I've found it more beneficial to think of myself as someone who is coping with cancer, not necessarily surviving it. Complement me on my ability to adapt, not continue living.
4
David, you've pointed out one of the most painful problems associated with the concept of "survivorship," blame when things go less well than expected.
Offering false hope is often more of a reflection of the speakers problems than it is about the efforts and attitudes of the person living with cancer.
Offering false hope is often more of a reflection of the speakers problems than it is about the efforts and attitudes of the person living with cancer.
As someone who works at a cancer hospital and interacts with patients every day, I can agree that most of the patients just want to talk to someone about their diagnosis, their options and most importantly what need to do in order to be cured.
However, I do think that at times it is best to let the patient take the microphone and then judge your remarks based on what he/she says. For example, I asked a patient how he was doing after his scans came back that his counts were up. He said that he was actually feeling a little crummy that day because he had a cold. He then continued to say "well i guess its not as bad as having cancer" and laughed it off.
I mainly work with testicular cancer patients ages 18-29. I have found that this population likes to use the "cancer card" and make light of the situation. Last week my colleague who was monitoring the game room overheard a patient say to his friend "dude, what do you want I have cancer" after losing a video game.
However, I do think that at times it is best to let the patient take the microphone and then judge your remarks based on what he/she says. For example, I asked a patient how he was doing after his scans came back that his counts were up. He said that he was actually feeling a little crummy that day because he had a cold. He then continued to say "well i guess its not as bad as having cancer" and laughed it off.
I mainly work with testicular cancer patients ages 18-29. I have found that this population likes to use the "cancer card" and make light of the situation. Last week my colleague who was monitoring the game room overheard a patient say to his friend "dude, what do you want I have cancer" after losing a video game.
9
I spent a lot of time with my brother while he was dying of lung cancer. He was very stoic, and gamely went through all the various treatments--even though each of them failed. We talked about family memories and goofy stuff, and watched old westerns on TV. The biggest problem throughout was his girlfriend, who constantly brought home library books about cancer, "spiritual" books about cancer, diet books about cancer. I'm sure she meant well, but it drove my brother around the bend (and made me want to choke her).
Don't tell cancer patients that you're praying for them (unless, I guess, they are the sort of people who say that sort of stuff themselves). Don't bring ministers into hospital rooms--and PLEASE, ministers, don't hang around inside a patient's room if it is obvious that you are not helping matters. After a smiling, busybody priest kept coming into my brother's room at the VA hospital, my brother instructed me to "get rid of him." I finally intercepted the guy in the hallway and gently asked him to stop.
I wish I could take back some of the things I said and did myself. When my brother asked me to bury him on his farm, I industriously checked into it and reported back that it was possible only if he was cremated. That was the one time his face visibly fell--because the prospect of cremation really seemed to bother him. I wish, wish, wish that I'd just kept my findings to myself and told him I would do as asked. We did cremate him, and he *is* buried on his farm.
Don't tell cancer patients that you're praying for them (unless, I guess, they are the sort of people who say that sort of stuff themselves). Don't bring ministers into hospital rooms--and PLEASE, ministers, don't hang around inside a patient's room if it is obvious that you are not helping matters. After a smiling, busybody priest kept coming into my brother's room at the VA hospital, my brother instructed me to "get rid of him." I finally intercepted the guy in the hallway and gently asked him to stop.
I wish I could take back some of the things I said and did myself. When my brother asked me to bury him on his farm, I industriously checked into it and reported back that it was possible only if he was cremated. That was the one time his face visibly fell--because the prospect of cremation really seemed to bother him. I wish, wish, wish that I'd just kept my findings to myself and told him I would do as asked. We did cremate him, and he *is* buried on his farm.
29
Hey, you did your best. In telling him the truth about the farm burial you were being fully present with him. He was still alive and you were treating him with the respect of giving him the truth. Lying to spare his feelings might have suggested you thought of him as already gone. Don't quite know how to express this, but talking to him honesty meant you were letting him be alive until he'd used up every last drop of his life.
I'm sorry you both went through this and very sorry for your loss.
I'm sorry you both went through this and very sorry for your loss.
13
When I was a bedside hospice volunteer for 8 years, few people asked to speak with a spiritual counselor (priest, rabbi, minister, etc.) And when a request was made, it usually was for a nondenominational hospice chaplain.
Spiritual counselors who were effective in helping my patients were individuals who had been in my patient's lives for years.
I've never witnessed a deathbed conversion in hospice, nor found attempts to be beneficial. And I agree with you that efforts to bring someone to an ideology close to their death is not only useless, but very annoying to the person who is dying.
Spiritual counselors who were effective in helping my patients were individuals who had been in my patient's lives for years.
I've never witnessed a deathbed conversion in hospice, nor found attempts to be beneficial. And I agree with you that efforts to bring someone to an ideology close to their death is not only useless, but very annoying to the person who is dying.
1
I've read many articles like this since my own diagnosis ten years ago, and I can't disagree more. Maybe I have too much empathy, but I understand that when people are awkward, it's precisely because they are unsure of the "right" thing to say. Writers who purport to tell them what is right are, well, wrong; they exacerbate the anxieties people may have in such situations by increasing the uncertainty they feel when trying to communicate their genuine, if awkwardly expressed, concerns. People are unique, even people who have cancer, and we might react differently to people saying "how are you?" In some ways, articles like these actually are an attempt to dictate what WE (cancer victims) should feel when "accosted" by well-meaning acquaintances. Yes, I'll admit in some ways it alarms me when I'm asked in that special way how I am, because it does remind me of my mortality. But mortality is, indeed, something we all share. And I recognize the common humanity in anyone who approaches me with their honest, if awkward, expressions of concern (and, yes, the comments are often about themselves and their own experiences, as are many of these comments as well). I can't see how an article about the "do's and don't's" of talking to cancer patients can help open lines of communication that are important to us as human beings trying to find a loving and humane way to live, and yes, die, in this world.
105
I don't disagree with you - you can't map out what's always right to say - but frankly, I'm not concerned about the anxieties of the person who doesn't have cancer and is trying to think of what to do or say. Anxiety won't kill you. Nor do I think the article is meant to prescribe one correct approach. It's more intended, I thought, to offer options to precisely those anxious loved ones who freeze.
2
Obviously every situation of severe illness is unique. After reading all the comments I flashed back to sending a card to a woman who was a best friend of my best friend. Two years after she survived surgery I by chance visited her home along with my best friend. She started digging in her desk and pulled out the card I had sent her. I had written "Are you going to die? I'm not going to drive 200 miles to see you if you think not." She said she had laughed so hard that her nurse thought she was off her rocker!
Along the way of life, I had a friend with serious mental illness. I visited her at the psychiatric hospital. I sensed she was very frightened and confused. She asked me why she was behind locked doors. I simply said, "Because you're kind of crazy. But we all are...one way or another." She smiled and laughed. She said,"I trust you."
Along the way of life, I had a friend with serious mental illness. I visited her at the psychiatric hospital. I sensed she was very frightened and confused. She asked me why she was behind locked doors. I simply said, "Because you're kind of crazy. But we all are...one way or another." She smiled and laughed. She said,"I trust you."
24
Ok, that was HILARIOUS. Thanks for posting!
I will add to this list.
- Don't offer to pray with the person with cancer. Particularly if you know that they either are not the same religion as you, and even more particularly if you know that they are not religious.
My poor mother was very distressed when a neighbour, who she knew quite well, came to 'save' her before she died, and was insistent about praying.
- Don't offer to pray with the person with cancer. Particularly if you know that they either are not the same religion as you, and even more particularly if you know that they are not religious.
My poor mother was very distressed when a neighbour, who she knew quite well, came to 'save' her before she died, and was insistent about praying.
14
I think the bit about not offering "prayers" if you're a different religion applies only to people who are very tribal in their beliefs - in other words people who believe that there's only one path and that they're on it.
I agree about not offering to pray for atheists - it just stresses tucks them off. It's unkosher nod.
I agree about not offering to pray for atheists - it just stresses tucks them off. It's unkosher nod.
I never had anyone come to my home but I did, frequently, have people, complete strangers, stop me in public asking if they could pray for me. At first it seemed odd. I was a little taken aback. Obviously bald, despite the telltale scarf or chemo cap, leaning heavily on a cane or grocery cart. Did I look THAT bad? But then I realized that this was the stranger's way of conveying their compassion, their way of wishing me well. And so each time I'd let them take my hand and would bow my head as they conveyed their prayers for me. And I'd be grateful for their kind gesture.
6
Corky, it was kind of you to take the time and energy to accommodate those folks. You are indeed, a good person.
This happened to my mother in the hospital as she lay dying over about a month or so. It was distressing to her, in her pain, and distressing to us, her daughters who had to watch her try to tolerate any minutes of her life being eaten up by another person's needs, who was not family, or close friend. And it was that other person's needs, not hers. To add insult to injury, that other person denigrated my mother's and my family's lifelong beliefs, by imposing her own.
My point in my comment, is that others needs should not be imposed in a time of trouble. I think this is the point of the article as well. If any bible clobbered needy person shows up at my deathbed, I hope my sons will throw them out.
I am not as good a person as you, and will be extremely impatient and probably ill mannered if approached in a grocery store by a stranger, when I am just hoping to make it through the check out line before either collapsing or throwing up.
This happened to my mother in the hospital as she lay dying over about a month or so. It was distressing to her, in her pain, and distressing to us, her daughters who had to watch her try to tolerate any minutes of her life being eaten up by another person's needs, who was not family, or close friend. And it was that other person's needs, not hers. To add insult to injury, that other person denigrated my mother's and my family's lifelong beliefs, by imposing her own.
My point in my comment, is that others needs should not be imposed in a time of trouble. I think this is the point of the article as well. If any bible clobbered needy person shows up at my deathbed, I hope my sons will throw them out.
I am not as good a person as you, and will be extremely impatient and probably ill mannered if approached in a grocery store by a stranger, when I am just hoping to make it through the check out line before either collapsing or throwing up.
4
Last year a good friend told me she had cancer....via a text message. I had no idea how to respond to such a text. I didn't want to respond with panic ("OMG NO!!!") but neither did I want to seem nonchalant. Of course I called her right after...but if anybody were to write a Do's and Don't from the sick person's perspective, I would say, don't tell your friends such news via text.
10
She was probably just doing her best. Perhaps she was unable to say the words out loud without sobbing but she wanted her friends to know.
7
Being told you have cancer is rather a blow (to put it mildly). Kindly don't judge the person's method of communication. There was no way I could call people to tell them. I was unable to do it for reasons another cancer patient would get. I emailed.
5
It took me many tries before I could get the words out without falling apart. The text worked. She wanted, needed comfort from you. So she reached out and you called her right away. I'm sure she was very grateful for having you as her good friend.
1
After reading articles (and comments) like these, I feel even better about my general tendency to steer clear of anyone (unless they're a very close friend) with cancer. Obviously, anything I say or do can be perceived as offensive regardless of the intent.
Cancer is horrible, but it is not the only bad thing that happens to people. Millions of us have survived abuse, rape, incest, other diseases, deaths of CHILDREN, early deaths of parents, miscarriages, stillbirths, divorce, infidelity, deaths of spouses while we have young children, wrongful convictions, paralysis, amputation, etc.
I am tired of reading about how an innocent, well meaning questions or offers upset/offend cancer patients, as if they are the only people on Earth who suffer.
Almost ALL of us suffer horrible things. It's called life. Quit taking offense at every little thing and be grateful for the good things in life.
Cancer is horrible, but it is not the only bad thing that happens to people. Millions of us have survived abuse, rape, incest, other diseases, deaths of CHILDREN, early deaths of parents, miscarriages, stillbirths, divorce, infidelity, deaths of spouses while we have young children, wrongful convictions, paralysis, amputation, etc.
I am tired of reading about how an innocent, well meaning questions or offers upset/offend cancer patients, as if they are the only people on Earth who suffer.
Almost ALL of us suffer horrible things. It's called life. Quit taking offense at every little thing and be grateful for the good things in life.
87
You are right that many awful things happen to people and cancer is one of them. I certainly don't believe the author was trying to suggest that cancer was somehow "worse" than any other trauma.
I didn't take it as a "only these things are okay to say to cancer patients".
I feel that the author of this article was trying to give information to those who wanted more guidance in what to say to someone going through it.
I didn't take it as a "only these things are okay to say to cancer patients".
I feel that the author of this article was trying to give information to those who wanted more guidance in what to say to someone going through it.
15
Dear Honeybee, Yes, terrible things other than cancer do happen to millions of people. And folks like you with the implied and demeaning "you special little snowflake!" attitude often do them incalculable harm.
Thank you so much for staying away from them all.
Thank you so much for staying away from them all.
10
Mandy, I take your point.
I guess my point is that these type of "cancer" articles should not even be written because they make it sound like cancer patients deserve some sort of "special victim" status.
Reading the comments, you can see the Special Victim perspective that makes people feel entitled to complain about being asked "How are you?" which is nothing more than a standard, small-talk kind of greeting.
Empathy is one thing; expecting the rest of us (who have our own soul-searing sufferings we are enduring) to walk on eggshells is pointless, not helpful and divisive.
I guess my point is that these type of "cancer" articles should not even be written because they make it sound like cancer patients deserve some sort of "special victim" status.
Reading the comments, you can see the Special Victim perspective that makes people feel entitled to complain about being asked "How are you?" which is nothing more than a standard, small-talk kind of greeting.
Empathy is one thing; expecting the rest of us (who have our own soul-searing sufferings we are enduring) to walk on eggshells is pointless, not helpful and divisive.
7
This is one of the most helpful 'Cancer' articles published in the NYT for quite some time. Everyone can gain some knowledge AND empathy reading this article.
As a caregiver to my husband when he had colon cancer, I was accosted by some pretty ignorant and tactless comments - including 'I saw my dad die a slow death with colon cancer. It was awful. You will be lucky if he lives 10 years.' I still cannot acknowledge this person today. This is where ones ability to forgive is tested.
When I am with someone very ill, I try to listen to them and try to put myself in their shoes and think of what is best to be said in that moment. Many times, I let them lead the conversation.
PS - My husband is now 5+ years post chemo... Each day is a gift.
As a caregiver to my husband when he had colon cancer, I was accosted by some pretty ignorant and tactless comments - including 'I saw my dad die a slow death with colon cancer. It was awful. You will be lucky if he lives 10 years.' I still cannot acknowledge this person today. This is where ones ability to forgive is tested.
When I am with someone very ill, I try to listen to them and try to put myself in their shoes and think of what is best to be said in that moment. Many times, I let them lead the conversation.
PS - My husband is now 5+ years post chemo... Each day is a gift.
19
Culture, spiritual beliefs and enviornment play a role when approaching individuals with chronic/terminal illness. Always think before speaking and treat the individual like anyone else. Trying to explore how one really feels becomes an intimate experience which should be done when the afflicted is ready to share and when the curious is ready to hold the space for the person to vent.
4
Last year, I was diagnosed with a type of cancer that is not too common. While I didn't mind the "How are you? question, I really got tired of answering questions about the disease and the surgery as if I were an expert, practicing oncologist. Coming from a family where cancer is rampant, I probably know more than the average person, but these conversations were simply gruesome.
7
In my Therapy Dog classes we review this very topic. Cheerful novice dog handlers want to enter a patient's room and kindly inquire, How Are You of every one they meet. No--we tell them, and explain how they may be opening a can of worms they will not be able to manage. Most do not believe me, thinking I am over-reacting. I am very glad for this article, and may save it to show my next class. Some of the options we suggest go more along these lines: Hi, so nice to see you today. This is Buddy--we came here to visit today--would you like to say Hello to him? (next visit) Well-Hello again--such a nice day to see you. Or Ahh...there you are--we have been SO looking forward to seeing you--I think Buddy knows this is your room! Good Morning, nice to see you--is that a new blouse? The color is just amazing--love it! (Or--are those new photos on the wall, or new shoes, hairdo, beautiful head scarf, or note something in the environment to comment upon.) But BE SINCERE in being happy to visit this person and open to any conversation they wish to engage in. With a Therapy Dog, we have a ready topic right there--the dog. But often the conversation moves in many other directions: independence, leaving the hospital to go home, the future. We never ask, How Are You. We may ask about other things. And Compassionate Listening--even with periods of silence-- is always helpful, with or without the dogs.
13
I was very ill a few months ago, but I am now recovered. Every single person I meet says how much better I look. It never ends and makes me feel uneasy. What do they mean? How did I look before? How do I look now? I get this comment several times a day and it unnerves me. I'm sure they mean well, but I wish they wouldn't say that. I never know how to respond. Do I say thanks? I would prefer an ordinary greeting not reminding me of how sick I was.
8
Here's a thought:
When someone says how much better you look, express gratitude that they have cared at least enough to register a change in you.
I would say, "I do look better? All I know is that I feel so much better and I am very lucky to, unlike many people, have survived a serious illness. How kind of you to compliment me!"
When people tell you how much better you look, what they're really thinking is how nice it is to see you healthy again. And you want to complain about that?
When someone says how much better you look, express gratitude that they have cared at least enough to register a change in you.
I would say, "I do look better? All I know is that I feel so much better and I am very lucky to, unlike many people, have survived a serious illness. How kind of you to compliment me!"
When people tell you how much better you look, what they're really thinking is how nice it is to see you healthy again. And you want to complain about that?
10
Ironically, the most common and unwelcome 'support' retort to women with alopecia areata is "Can't you just be happy that your total loss of all hair, brows and lashes isn't from chemo? That you're otherwise healthy?"
On a positive note, the frequency of this question develops the talent of eye roll control. 'We love you for you, not your hair' goes pretty far once a Bald Girl has adapted.... but not during the first month when she cannot recognize the person looking back in her mirror.
On a positive note, the frequency of this question develops the talent of eye roll control. 'We love you for you, not your hair' goes pretty far once a Bald Girl has adapted.... but not during the first month when she cannot recognize the person looking back in her mirror.
6
How about a warm hug?!
That would mean more than mere words.
****A Connecticut physician
That would mean more than mere words.
****A Connecticut physician
8
Please please please, ask first.
After I was widowed, unexpected hugs were terrible while I was at work.
I would sit, pull myself together, steel myself and try to do something. I was in "the bubble". If someone hugged me, it broke the bubble and I would have to compose myself all over again.
Ask if you can hug them, then go for it if they say yes.
After I was widowed, unexpected hugs were terrible while I was at work.
I would sit, pull myself together, steel myself and try to do something. I was in "the bubble". If someone hugged me, it broke the bubble and I would have to compose myself all over again.
Ask if you can hug them, then go for it if they say yes.
12
Watch out with the hugs. People have surgery, or the consequences of surgery: drains, implants, ostomies. Sometimes squeezing them is the very WORST thing you can do....
2
Cancer patients sometimes need trusted advocates to act as their proactive filter against everything from toxic people to nefarious forces in the world at large. The operative takeaway is to listen to those who are hurting.
2
When a friend or family member is seriously ill - cancer or other illness - people who want to help can form a group of care givers. The spouse or close friend or relative or the patient can tell the group leader what s/he needs help with &/or to schedule visits. The group leader finds out what each person who wants to help can do - chores such as cleaning or shopping, child care, visits, food delivery, etc. and when the person is available. Making a simple chart the leader can 'assign' tasks and provide a copy to all who are willing and able to help. Each person then knows what is expected of them and when & also will see gaps in the needed help and might be able to fill in the gap. Those who cannot do more might be willing or able to provide a paid service to do the chores. This method has been in use by cancer support groups for a long time. It relieves the patient from multiple visits on one day when there are none the next and getting needed assistance without having to personally ask for help. It makes it easier for all concerned.
14
There is something lucky about having cancer: (1) There are worse illnesses, including ALS, dementia, severe stroke, emphysema, advanced heart failure; (2) It makes you glad to wake up each day, and look at the sky, nature,loved ones, and pets with renewed appreciation; (3) If you are old, you can look back on a long life with the advantage of hindsight, and realize the anxieties of youth were overblown; (4) Even though these are uncertain times for the country and the world, you recall that they don't compare with the horrors of World War II or the McCarthy era. (4) You have more time to post your thoughts and reflections on the Times's website.
I tell family and friends that my cancer is hopeless but not too serious.
I tell family and friends that my cancer is hopeless but not too serious.
51
Please don't decide for the rest of us that cancer's no big deal. What if you're NOT old, for instance? I'm not. I wasn't ready to go, by a long shot. And during my treatment I saw little kids going through the misery that is chemo/radiation/surgery. Do NOT come in here and say "Hey - cancer's no big deal" as if everyone should share your position.
8
Sorry. i guess I was exemplifying Ms. Brody's do-nots. I was writing only about my own experience, but should have acknowledged the pain, suffering ,and fear that other and younger victims of cancer face.
I'm with Lisa (below).
Sincere condolences on your brother's tragic death.
In any of these life-altering situations, one learns a lot about those around them, and about themselves.
I appreciated honesty in people after the murder of my young niece on 9/11. One woman I wasn't close to, but who was more than a passing acquaintance and who I had known for a decade+ previous, upon seeing me in a store months later, barely upright, could hardly acknowledge me, but also had the honesty to say: "I don't know what to say. It's too big."
That both informed me of her interest in/comfort with the subject (zero) any future dealings (there were none) ... and it was the truth.
Good luck to all as we each navigate life's rugged road.
Sincere condolences on your brother's tragic death.
In any of these life-altering situations, one learns a lot about those around them, and about themselves.
I appreciated honesty in people after the murder of my young niece on 9/11. One woman I wasn't close to, but who was more than a passing acquaintance and who I had known for a decade+ previous, upon seeing me in a store months later, barely upright, could hardly acknowledge me, but also had the honesty to say: "I don't know what to say. It's too big."
That both informed me of her interest in/comfort with the subject (zero) any future dealings (there were none) ... and it was the truth.
Good luck to all as we each navigate life's rugged road.
7
The question" How are you" is just as bad, if not worse, when posed to those with early onset Alzheimer's or regular Alzheimer's. At least there is some hope of surviving cancer. No one survives Alzheimer's. It is a progressive, terminal illness with no possible cure. Let's think before we speak!
5
Terrible as Alzheimer's is, some patients die of other causes first, perhaps a preferable outcome. My father was diagnosed with Alzheimer's at age 90 and died of complications from a heart attack 3 1/2 years later, without experiencing late stages of Alzheimer's.
1
Interesting. I think you can substitute many serious diseases or life events for "cancer" when considering what to say to those suffering through a bad time. When I was in college my brother died young in a car accident. The reactions of people astounded me. "He was lucky he died young" (that kid got thrown out of the house). People I thought were good friends avoided me. On the other hand people I barely knew thoughtfully slipped condolence cards under my dorm room door. I still think of those thoughtful people. Fortunately I also had some great friends who let me cry my heart out on their shoulder. I realized I looked to people to say the right thing to somehow make it better. I was young but finally I realized there were no " perfect" words. It was all about people who cared enough to overcome their discomfort and go beyond themselves to care about me to the best of their ability. That was "right".
40
"How are you" is a simple, polite greeting whether it's said to a cancer patient, a patient with a chronic disease or just your friend, relative or acquaintance.
If you truly know and care for the person your asking because you want to know and often it's helpful for the patient to discuss their current health status.
If you really don't know the person but know of their condition, I believe it's still the correct greeting as it shows your concern and empathy.
Just my thoughts.
If you truly know and care for the person your asking because you want to know and often it's helpful for the patient to discuss their current health status.
If you really don't know the person but know of their condition, I believe it's still the correct greeting as it shows your concern and empathy.
Just my thoughts.
24
Well, I'm another cancer patient who dreads being asked 'How are you?', so please rethink your approach.
8
And I'm a cancer patient who took "How are you?" at face value and said, "OK, considering."
There is simply no one approach that is going to be 100% perfect in dealing with this.
There is simply no one approach that is going to be 100% perfect in dealing with this.
51
@Don: "Hello" is sufficient. Let the person you're concerned about take the lead. It's the polite thing to do.
2
My daughter was diagnosed with leukemia. A month later I was diagnosed with colon cancer. I was being seen at Kaiser for a suspected pulmonary embolus. I was telling the nurse about my situation to which she replied, "Well, the Lord never gives you more than you can handle". I wanted to slap her! Instead I told her, "he could have left my daughter out of it". Talk about diminishing and not recognizing the struggle and horror I was going through. Today we are both cancer free.
169
The problem with knowing what to say and do is that it is so individual. What may be welcome to one may be anathema to another.
Here's what bothered me after my first diagnosis: the coworker who had "heard" and promptly burst into tears while talking to me. The friend of my husband who regaled me with the tale of his friend who had gotten deathly ill after a radiation treatment (which was the treatment I was facing). The friend who didn't call at all because she "didn't think I would want to talk about it."
What touched me the most? My community coming together to make and bring me and my family meals after my surgery. My elderly mother, who was far away and whom I urged not to come, sent me money to have my house cleaned. The friends who took me out to lunch and made me laugh.
Here's what bothered me after my first diagnosis: the coworker who had "heard" and promptly burst into tears while talking to me. The friend of my husband who regaled me with the tale of his friend who had gotten deathly ill after a radiation treatment (which was the treatment I was facing). The friend who didn't call at all because she "didn't think I would want to talk about it."
What touched me the most? My community coming together to make and bring me and my family meals after my surgery. My elderly mother, who was far away and whom I urged not to come, sent me money to have my house cleaned. The friends who took me out to lunch and made me laugh.
31
I have CLL a form of lymphoma. I have never need chemo, however, I do need infusions of gamma globulin. My own brother, a social worker, likes to tell me, "You don't really have cancer." He is not the one spending almost a day doing this every six weeks.
14
It's amazing, isn't it, the dumb things people say?
12
Sometimes deliberately.
1
I like to share with people this quote from the great Rebecca Solnit:
"I wrote to a friend that I was going to be cured of more than I had been diagnosed with. I was going to have to give up being unstoppable. I asked for help. I was not much in the habit of doing so. There were extremely unhelpful parents in my particular past, but asking is difficult for a lot of people. It’s partly because we imagine that gifts put us in the giver’s debt, and debt is supposed to be a bad thing. You see it in the way people sometimes try to reciprocate immediately out of a sense that indebtedness is a burden. But there are gifts people yearn to give and debts that tie us together.
Sometimes to accept is also a gift."
but it's complicated, no question.
"I wrote to a friend that I was going to be cured of more than I had been diagnosed with. I was going to have to give up being unstoppable. I asked for help. I was not much in the habit of doing so. There were extremely unhelpful parents in my particular past, but asking is difficult for a lot of people. It’s partly because we imagine that gifts put us in the giver’s debt, and debt is supposed to be a bad thing. You see it in the way people sometimes try to reciprocate immediately out of a sense that indebtedness is a burden. But there are gifts people yearn to give and debts that tie us together.
Sometimes to accept is also a gift."
but it's complicated, no question.
14
Actual friends insisting upon the "keep positive" mindset are generally unhelpful. What I heard as a cancer patient was, "I'm too apprehensive/scared to talk about your actual possible prognosis." I learned very quickly not to share my fears with others unless they were extremely close friends, or, they were fellow thrivers and survivors in support groups. While most people are well intentioned, it is not universal. The worst interactions I had were with people who thought my cancer was somehow about them and offered unsolicited advice and comments. It's frustrating because as cancer patients it often falls on us to assure other people, when we are the ones in need of actual support. Oh, and the worst comments are always the "My aunt had such and such, too, but she died." I heard countless variations on this theme, each ending with the patient's death. It was a stab to the chest every time someone said it to me. Words have real power.
32
Stupid, thoughtless comments and actions happen with any illness. For people who have never been seriously ill, with any disease or condition, are simply clueless. There is no other way to put it. It doesn't mean that most of them aren't "well-meaning," but that is of no value, frankly, when someone is on the receiving end of thoughtless, hurtful comments and actions.
As someone with life-long, never-ending conditions (and thankfully only a small brush with cancer), I've probably seen/heard it all. In my opinion, the worst has been when some clueless person compares me to a relative/friend, etc. who just "happens" to have the same genetic illness. Usually, by looks alone, they will decide that I am not "as ill" as the person they know. It is just another way of saying "we don't believe you are suffering," a way of devaluing me and my condition. It happens a lot, especially when you have a so-called invisible illness (or if you happen to look "okay" on any given "good" day). In my case, they don't know what I go through on a regular basis, but in their minds they think they know it all. Really infuriating and hurtful, even years later (and don't get me started on "you're too sensitive" nonsense. Those are the kinds of things people should never, ever do to someone else, whether it is in the context of cancer, or chronic, serious health issues.
As someone with life-long, never-ending conditions (and thankfully only a small brush with cancer), I've probably seen/heard it all. In my opinion, the worst has been when some clueless person compares me to a relative/friend, etc. who just "happens" to have the same genetic illness. Usually, by looks alone, they will decide that I am not "as ill" as the person they know. It is just another way of saying "we don't believe you are suffering," a way of devaluing me and my condition. It happens a lot, especially when you have a so-called invisible illness (or if you happen to look "okay" on any given "good" day). In my case, they don't know what I go through on a regular basis, but in their minds they think they know it all. Really infuriating and hurtful, even years later (and don't get me started on "you're too sensitive" nonsense. Those are the kinds of things people should never, ever do to someone else, whether it is in the context of cancer, or chronic, serious health issues.
31
Mercy. I'm sorry you've had so much to deal with.
6
Thank you Blue Jay for your kind thoughts, but others have had it so much worse, so I try to keep it in perspective. I don't like being angry all the time, so I attempt gratitude for what I do have, like good friends, my supportive spouse, an active mind, etc.
4
I have been dealing with something disabling, painful but not life-threatening for the last eight months, and so many of these cautions are the same for anyone who is caught in a health-compromising situation or with such an illness. Offer to show up and then do it.
15
As a practicing medical oncologist, the phrases I prepare my new patients with cancer to be familiar with are "you are looking good" or "how are you doing?" These statements from well-meaning friends and family are so unhelpful and deflating. The statements from Jane Brody's article are spot-on. However, it is very difficult to form a "class" for friends and family as to what to say to a cancer patient.
However, the person with cancer can turn it around and be preemptive and assertive. I tell them to explain to everyone what their "good days are like" and what "their bad days are like." This gives the listener the chance to respond in a constructive and specific manner how they can help. I tell them to explain to others what their cancer condition is but also explain every cancer condition is usually different and unique to each person. Finally, I challenge each person with cancer to devise or construct a statement that in effect helps the listener and the person with cancer renew or re-affirm their relationship. A mother with cancer still wants to be that mother to her daughter or son. A person with cancer still wants to be an effective and supportive co-worker (both ways) at their place of work. Mutual friends want to re-affirm the common interests, ideas and affection that bind them together.
However, the person with cancer can turn it around and be preemptive and assertive. I tell them to explain to everyone what their "good days are like" and what "their bad days are like." This gives the listener the chance to respond in a constructive and specific manner how they can help. I tell them to explain to others what their cancer condition is but also explain every cancer condition is usually different and unique to each person. Finally, I challenge each person with cancer to devise or construct a statement that in effect helps the listener and the person with cancer renew or re-affirm their relationship. A mother with cancer still wants to be that mother to her daughter or son. A person with cancer still wants to be an effective and supportive co-worker (both ways) at their place of work. Mutual friends want to re-affirm the common interests, ideas and affection that bind them together.
44
I was diagnosed with acute lymphoblastic leukemia three months ago and will have an allo transplant in three weeks. This come after an auto transplant for multiple myeloma two years ago. I do not find the question "how are you doing" unhelpful or deflating nor do I find it unhelpful or deflating when someone tells me I look great. Sick or not, who doesn't enjoy being told they look great? In my case, I find these questions/comments coming from caring, well-meaning friends and I am grateful for their concern.
To be preemptive and assertive with friends will likely only serve to make them uncomfortable and less inclined to offer their support. That is exactly what I don't want to happen.
I couldn't disagree more with your advice to your patients.
To be preemptive and assertive with friends will likely only serve to make them uncomfortable and less inclined to offer their support. That is exactly what I don't want to happen.
I couldn't disagree more with your advice to your patients.
2
I got very tired of being the center of attention at every function I went to - I would say smile and give a quick hug or say something specific... like "I have Tuesday off next week, can I help you with anything? Shopping, cooking, hanging out together - anything at all. I can come by at 9:30 if that works for you and you can figure out how I can help between now and then?"
9
The website www.breastcancer.org has a discussion board (click on Community), which includes the topics "Stupid Comments:" https://community.breastcancer.org/forum/96/topics/828522?page=1
and "The Dumbest Things People Have Said to You/About You:"
https://community.breastcancer.org/forum/102/topics/744439?page=1
They're appalling and funny, and also instructive.
and "The Dumbest Things People Have Said to You/About You:"
https://community.breastcancer.org/forum/102/topics/744439?page=1
They're appalling and funny, and also instructive.
3
Never say "[insert higher power of choice] would not give you more than you could handle" or "You are so strong. I could not be so strong with your disease/ diagnosis/ situation." Both things made me want to scream.
I was not given a choice. I was diagnosed with cancer. I was fortunate to have good health insurance and a good job that paid the mortgage. My husband's salary would not. Losing my house would not have made the situation better. Strong or not was not really a choice.
Also, if you are going to offer something, make sure it is what the person wants. My wonderful colleagues hired a meal service to bring me a few meals. I love to cook and the food was kind of boring (but if it had been during chemo rather than surgery recovery, I would not have been able to eat it). Recovering from surgery, I got to be home all day and could cook, a luxury that I did not have when I was working 60 hours per week. A cleaning service would have been wonderful. I am not a fan of cleaning, even when healthy, and I was not supposed to lift things, so it would have been perfect.
I was not given a choice. I was diagnosed with cancer. I was fortunate to have good health insurance and a good job that paid the mortgage. My husband's salary would not. Losing my house would not have made the situation better. Strong or not was not really a choice.
Also, if you are going to offer something, make sure it is what the person wants. My wonderful colleagues hired a meal service to bring me a few meals. I love to cook and the food was kind of boring (but if it had been during chemo rather than surgery recovery, I would not have been able to eat it). Recovering from surgery, I got to be home all day and could cook, a luxury that I did not have when I was working 60 hours per week. A cleaning service would have been wonderful. I am not a fan of cleaning, even when healthy, and I was not supposed to lift things, so it would have been perfect.
30
What I hated (during husband's cancer) was "stay positive".
26
I have a dear friend with cancer. During her Chemo, I downloaded all my audio books onto an unused iphone and gave it to her to listen to when she wanted to. She was so appreciative. I would also take my dog to visit. The dog helped open up discussions about how she was feeling without any unwanted questions. Of course it helped that she felt open to discussing her situation. Not all people will be like that. But she still talks about how much the audio books helped her.
20
What a great idea! Thoughtful gifts like that are truly a good idea, especially creative ones. The suggestion of a cleaning service is also great. Think about what might make your friend's life easy when things are difficult. Offer to set up the Caring Bridge account - your friend doesn't want to repeat everything over and over and over again. If the friend is going to lose her hair, offer to go with her to pick put the cutest wig ever, and if you have scarves, give them all to her.
I must say that not only have I had cancer, but have had many friends who did as well. The most helpful suggestion I can give is to try to treat your friend with cancer normally - we don't want to feel like the object of your pity, and we don't want to feel as if you think we are so fragile that we just might break! we might be sick, but do not want to you to give us the impression that we are at Death's door! Have a cup of tea with your friend, or a meal, and act like you would normally. Bring it in if your friend isn't feeling like going out. We don't want to feel like our relationships are totally deformed by our illness. We will talk about it if we are so inclined, but don't want to feel like you are waiting for some ponderous heart-to-heart discussion. Just be real, and get over your own anxiety - your friend doesn't need it!
I must say that not only have I had cancer, but have had many friends who did as well. The most helpful suggestion I can give is to try to treat your friend with cancer normally - we don't want to feel like the object of your pity, and we don't want to feel as if you think we are so fragile that we just might break! we might be sick, but do not want to you to give us the impression that we are at Death's door! Have a cup of tea with your friend, or a meal, and act like you would normally. Bring it in if your friend isn't feeling like going out. We don't want to feel like our relationships are totally deformed by our illness. We will talk about it if we are so inclined, but don't want to feel like you are waiting for some ponderous heart-to-heart discussion. Just be real, and get over your own anxiety - your friend doesn't need it!
8
Goodness! Such super sensitive people! When my husband was dying of cancer, we heard all these things and realized that the intent behind them was good and chose to focus on that. So they "didn't say it right" - they cared and that's what matters.
I don't want anyone walking on eggshells around me. Are people awkward? Of course they are, but that was not their intent. Just accept that most people do care that one is ill, do feel very sorry that you are, and wish there was something they could do. They may express all of the above less than perfectly, but just get over it and accept their caring.
I don't want anyone walking on eggshells around me. Are people awkward? Of course they are, but that was not their intent. Just accept that most people do care that one is ill, do feel very sorry that you are, and wish there was something they could do. They may express all of the above less than perfectly, but just get over it and accept their caring.
220
AMEN!
As if cancer is the only bad thing that happens to someone.
We have ALL suffered in this life. Some of us have our hair but cannot sleep at night due to the trauma of rape, incest, abuse, violence.
Some of us have lost children, young spouses, or our parents when we were young.
Millions more have survived horrifying diseases, amputations, paralysis, etc.
Then there are life-altering divorces, betrayals, mental illness, tornados, floods that swept our families away, and earthquakes.
Cancer victims are not the only victims.
As if cancer is the only bad thing that happens to someone.
We have ALL suffered in this life. Some of us have our hair but cannot sleep at night due to the trauma of rape, incest, abuse, violence.
Some of us have lost children, young spouses, or our parents when we were young.
Millions more have survived horrifying diseases, amputations, paralysis, etc.
Then there are life-altering divorces, betrayals, mental illness, tornados, floods that swept our families away, and earthquakes.
Cancer victims are not the only victims.
3
Praise the Lord that I do not know Honeybee! Do I hear an Amen?
9
Honeybee, my heart goes out to you for whatever it is that you and/or your loved ones, have suffered. I hope the NYT will have articles about ways to be kind to people enduring every sort of calamity.
And I hope that, in the comments section on each such column, no one will remark about all the *other* disasters that should be covered instead of the one that's today's topic.
And I hope that, in the comments section on each such column, no one will remark about all the *other* disasters that should be covered instead of the one that's today's topic.
4
What do you do for a friend who is seriously ill, who you really want to help, but the spouse keeps hitting on you? I've offered to buy groceries for my friend, take her on walks, etc, but now I don't dare to phone their home because I know that her husband will undoubtably answer and will think that I'm finally giving in to his advances.
Sometimes it is the family members of the patient who make it difficult for friends to offer help.
Sometimes it is the family members of the patient who make it difficult for friends to offer help.
5
Could you tell the spouse to stop harassing you, or you'll tell his wife? That might make him back off.
If you're not up for that, it sounds like your alternative is to keep in touch with your friend via correspondence, and wait till she's well enough to see you on her own.
Good luck! You're in quite a pickle.
If you're not up for that, it sounds like your alternative is to keep in touch with your friend via correspondence, and wait till she's well enough to see you on her own.
Good luck! You're in quite a pickle.
6
Can you take a friend along when you visit? If the husband persists, you could tell the husband, quite firmly, that you are absolutely not interested in him and your aim is to help his ill wife.
3
I have to say when I was so sick from treatment the last thing I wanted to hear was that maintain a positive attitude. Just wasn't happening. A psychiatrist at Sloan Kettering did a study and having a positive attitude has no effect on survival.
23
Not related to cancer, but after I was widowed, I hated being asked how I was.
(Often, with the head tilted sideways--ugh.) It was horrible, it sucked, what should I say? "Ambush hugs", well-meaning as they were, were bad too, as I was barely holding it together.
Upon returning to work, my favorite greeting was "it's good to see you back". It expressed acknowledgement and support, but it didn't ask anything of me.
(Often, with the head tilted sideways--ugh.) It was horrible, it sucked, what should I say? "Ambush hugs", well-meaning as they were, were bad too, as I was barely holding it together.
Upon returning to work, my favorite greeting was "it's good to see you back". It expressed acknowledgement and support, but it didn't ask anything of me.
43
My ex-girlfriend, who is also my closest friend, has been living with a very aggressive form of breast cancer for the last year and a half. I've been fortunate to assist her very closely during this period and I have observed varied behaviors from friends and family.
For example, her childhood friend has been virtually absent, visibly afraid, while a few acquaintances have become closer and much more helpful and present. Brothers and sisters have been distant. I don't see impoliteness or character flaws. Instead, I see people who are at different stages of the path we are all on. Those who have actively worked on being less self-conscious and less self-centered in their life I instantly recognize as being much more at ease and also much more helpful and practical in their approach.
I think many people instantly personalize what they see and hear and project the illness toward themselves. It is a normal and healthy reaction at first, but one must actively try to go beyond that stage and drop a little bit of his/her ego to really help the other, sick person. That is why I try never to judge anyone's reaction to my friend's cancer, but I try instead to gauge how I can help them get a little further along on their path to more empathy.
For example, her childhood friend has been virtually absent, visibly afraid, while a few acquaintances have become closer and much more helpful and present. Brothers and sisters have been distant. I don't see impoliteness or character flaws. Instead, I see people who are at different stages of the path we are all on. Those who have actively worked on being less self-conscious and less self-centered in their life I instantly recognize as being much more at ease and also much more helpful and practical in their approach.
I think many people instantly personalize what they see and hear and project the illness toward themselves. It is a normal and healthy reaction at first, but one must actively try to go beyond that stage and drop a little bit of his/her ego to really help the other, sick person. That is why I try never to judge anyone's reaction to my friend's cancer, but I try instead to gauge how I can help them get a little further along on their path to more empathy.
78
Brilliant! Some of the absentees really surprised me during my husband's cancer travail. But on the other hand, some acquaintances surprised me by stepping up with such compassion and tact. And one guy, I can never forget, befriended my husband during the worst of the illness, just because he was curious about the change in his looks and was a kind, undemanding friend.
16
This is an interesting article, but it's one that will be read mostly by cancer patients and a few committed care givers. I doubt that too many people who are on the periphery of this horrible disease or have acquaintances with cancer will take the time to read and reflect on this advice.
It would be interesting to also read a piece on the phenomenon of one's circle of friends and acquaintances disappearing upon hearing about a friend's cancer diagnosis. Whether or not they're uncomfortable with not knowing what to say, or they're too involved in their own lives, it is very hurtful to discover that essentially, a cancer patient is completely alone during a long, punishing treatment.
This is a very real occurrence as people have increasingly busy lives, co-workers who were once thought of as friends now are nowhere to be seen, and especially those who ask, "how are you?" seem to be the ones who don't really want to know and can't commit to helping with anything unless it's weeks down the road on the schedule.
After living in the same community for 16 years, working at the same company and thinking I had a wide circle of friends, when I was terribly sick, I discovered that only two people stepped up to help.
I received a few emails of encouragement, but no one organized dinners or potlucks, no one offered to take me to chemo, no one cleaned my house or bought groceries. It was the most hurtful discovery.
It would be interesting to also read a piece on the phenomenon of one's circle of friends and acquaintances disappearing upon hearing about a friend's cancer diagnosis. Whether or not they're uncomfortable with not knowing what to say, or they're too involved in their own lives, it is very hurtful to discover that essentially, a cancer patient is completely alone during a long, punishing treatment.
This is a very real occurrence as people have increasingly busy lives, co-workers who were once thought of as friends now are nowhere to be seen, and especially those who ask, "how are you?" seem to be the ones who don't really want to know and can't commit to helping with anything unless it's weeks down the road on the schedule.
After living in the same community for 16 years, working at the same company and thinking I had a wide circle of friends, when I was terribly sick, I discovered that only two people stepped up to help.
I received a few emails of encouragement, but no one organized dinners or potlucks, no one offered to take me to chemo, no one cleaned my house or bought groceries. It was the most hurtful discovery.
22
I've been on both ends of the dilemma, I have disappeared on a friend, had friends go AWOL during our troubles, I have been there for other friends 100%, and had friends just be fabulous. I read these articles - always looking for better ways to handle the anxious painful moments when friends are stricken. I wish you a great community.
10
Please also remember to support the family members who are supporting the person with cancer. When I had major breast cancer surgery, my husband explicitly stated that he didn't want any visitors staying with him during the surgery. But I found out later that an older family friend (a father figure to both of us) told the staff at the hospital that he was my husband's uncle and spent some time there during my surgery. It made me grateful to know that my husband wasn't alone (despite his explicit wishes to be alone). My husband was also grateful. That was a unique situation for sure, but I will always remember.... with gratitude.
24
Yeah, as a caregiver, I needed help and found it hard to accept at times out of sheer wrong-headedness. I still remember trying hopelessly to pry a foot of snow out of my driveway on my own. The next thing I knew, a random guy just ploughed out the horrible plug at the end of the driveway and then drove off before I could even grovel before him in gratitude! That man changed my winter! And he never knew the trouble I was in.
48
That's why it's important always to be ready to be kind to people. You may just make their day better, or you may have a profound impact on their life.
30
Truthfully, "how are you?" didn't bother me at all. However, most who ask are hoping desperately that you just give them the breezy "fine." I'll never forget the kindness of a co-worker, not particularly close, who would sit down in my office chair, look me in the eye and sincerely ask, "how are you?" in a way that conveyed that he could handle whatever the answer was.
Yes, it is nice to offer specific help. But the thing that meant the most to me was just showing that you're thinking of me - a card, an email, a call. It didn't have to be all about cancer and how I'm doing. In fact, cancer can be all-consuming and it can get to be exhausting to talk only of it all the time. I want to hear about the book you read, the cute thing your niece is doing, the current event in your town.
Finally, I wholeheartedly agree that I should not have to console you. At a time when I need to focus on myself, please don't cry or rail against why or bemoan the tests/treatments I'm subject to. I've moved on and I'm in battle mode. And whatever you do, don't tell me that your cousin's neighbor's hairdresser got chemo and said it was "no big deal." Chances are that they had a different cancer and different treatment regime than I am doing. It not only minimizes my experience, but makes you look pretty foolish.
Yes, it is nice to offer specific help. But the thing that meant the most to me was just showing that you're thinking of me - a card, an email, a call. It didn't have to be all about cancer and how I'm doing. In fact, cancer can be all-consuming and it can get to be exhausting to talk only of it all the time. I want to hear about the book you read, the cute thing your niece is doing, the current event in your town.
Finally, I wholeheartedly agree that I should not have to console you. At a time when I need to focus on myself, please don't cry or rail against why or bemoan the tests/treatments I'm subject to. I've moved on and I'm in battle mode. And whatever you do, don't tell me that your cousin's neighbor's hairdresser got chemo and said it was "no big deal." Chances are that they had a different cancer and different treatment regime than I am doing. It not only minimizes my experience, but makes you look pretty foolish.
83
This article has so many "don'ts" that it's hard to know what *would* be OK to say in a situation where an acquaintance has cancer. I have had a few experiences in recent years of people I don't know very well dealing with cancer -- for instance, co-workers with whom I interact only infrequently. I don't know them well enough to volunteer to show up at their homes with meals or take care of their kids, but if a simple "how are you?" when I run into them in the office kitchen is likely to be offensive, that makes it feel like there's no option left except to avoid them. Oh wait, that's offensive too! Good grief.
50
They were fairly good "don'ts," but it is supposed to be true that the "don'ts" stick in your mind like earworms. Better to find 3 nice warm and fuzzy DOs to focus on. I'd pick:
Do listen;
Do help out where you can;
Do remember all the things you liked to talk about or do with the "cancer patient" when they were simply your friend/ family member - and do them if you can. You can almost always pick up on something : music, reading, movies, crosswords, going for a simple drive.
Do listen;
Do help out where you can;
Do remember all the things you liked to talk about or do with the "cancer patient" when they were simply your friend/ family member - and do them if you can. You can almost always pick up on something : music, reading, movies, crosswords, going for a simple drive.
18
For people at work, has the person made the diagnosis public? If no, do not bring it up. The person does not want the diagnosis discussed at work. It may be the one place where they get to not talk about his/her disease each day which can be a huge relief.
If you have been told in confidence, keep the person's confidence.
If the person has made the diagnosis public, let the person know that you are there to help in whatever work way is relevant if it is a person who you would never interact with outside of the office under normal circumstances. If you are scheduling a meeting, ask the person if his/her calendar is up to date so a meeting can be scheduled. Send an email saying that it looks like X time on Y day is open, I want to make sure that works for you.
Ask the person about the things that you would have asked the person about before the diagnosis-- a new movie, the weather. I hated feeling like I was only my disease and that I had no life outside of that.
If you have been told in confidence, keep the person's confidence.
If the person has made the diagnosis public, let the person know that you are there to help in whatever work way is relevant if it is a person who you would never interact with outside of the office under normal circumstances. If you are scheduling a meeting, ask the person if his/her calendar is up to date so a meeting can be scheduled. Send an email saying that it looks like X time on Y day is open, I want to make sure that works for you.
Ask the person about the things that you would have asked the person about before the diagnosis-- a new movie, the weather. I hated feeling like I was only my disease and that I had no life outside of that.
8
The article mentioned several things to say other than "how are you" and explained why "how are you" is problematic for the person being asked--not offensive. Why not read the article again with an open mind to learn things you can say or do that would be helpful to the person with cancer. And you don't need to know someone well to volunteer to help them. If you don't feel comfortable bringing food to their home, you could ask a close friend of the person if they could bring the food to them. There are lots of things you can do to make life easier for those who are suffering.
1
This is great advice for dealing with a friend with any kind of serious illness. Also, don't say "Your illness does not define you."
6
Why shouldn't you let the person with cancer know that they are not defined by their illness. So often people who are ill with cancer turn into that "cancer patient" instead of the person that they are still. I had a friend who was diagnosed with metastatic breast cancer, we both knew she was going to die within a year or so, without really talking about that. I sent her a letter describing what she meant to me as a person, not as a sick person. I found out later from her family that the letter meant a lot to her.
11
When I was sitting there scared ****less that I was going to die (and soon), you can bet my illness defined me. I think the thing in general is "don't tell me how to think or feel about it," if you see what I mean.
5
The "don't asks" are great. They should be applied with a broad brush to much of life and etiquette in general, but I would love to see, "what is most important to you during this time" on a list of things that are okay to say. It's an important question to consider both for the person who's ill and for those who want to help.
Although I love seeing the important dialogue about false optimism and hollow platitudes in the Times' pages, many of these "helpful" suggestions in the comments would drive me crazy. Not everyone wants people showing up at their house with food (or at all) when they're sick.
Although I love seeing the important dialogue about false optimism and hollow platitudes in the Times' pages, many of these "helpful" suggestions in the comments would drive me crazy. Not everyone wants people showing up at their house with food (or at all) when they're sick.
7
Very substantial article. As visitors or volunteers, show up, and try to leave your own baggage behind. Be gentle but firm in your resolve to help, despite the need of the patient to control and be independent, but be ready to step back when they decline the offer.
11
As a former cancer patient (25 years ago), this brought back some uncomfortable memories of well meaning people asking me "really, how are you?" or asking me if I was dying because I deliberately lost weight. Chemo added many pounds to my slim body. One friend who took me to chemo told a total stranger as she introduced me that she'd just taken me to chemo and we were on our way to supper. He stared at that giant C on my forehead. None of these people are or were really friends. Fortunately I was surrounded by people who are and were. They were proactive and did sweet things like taking care of my garden, going with me to Dr. appointments, traveling with me, cleaning my house. Love heals.
5
I don't get why asking, "How are you?" is bad, but I agree -- speaking as someone with a serious medical issue (not cancer) -- with the suggested don'ts.
When I get the question, I respond, "I'm doing OK." If I'm not really doing OK, I'll use an inflection to get that across. I can worry about follow-up questions when they are asked. People who ask how I'm doing vary in closeness and sensitivity. Maybe when they ask, "How are you?" they are saying, "I haven't forgotten you" or "I care." Maybe it is hard even for them to ask that much and maybe they feel they are intruding. I don't want to discouraging them. There are many variables to consider. In addition, I want some acknowledgment of my illness. It seems weird when people don't ask.
But, again, my issue is not cancer and I hope my comments are not insensitive to those with that condition or to their families.
When I get the question, I respond, "I'm doing OK." If I'm not really doing OK, I'll use an inflection to get that across. I can worry about follow-up questions when they are asked. People who ask how I'm doing vary in closeness and sensitivity. Maybe when they ask, "How are you?" they are saying, "I haven't forgotten you" or "I care." Maybe it is hard even for them to ask that much and maybe they feel they are intruding. I don't want to discouraging them. There are many variables to consider. In addition, I want some acknowledgment of my illness. It seems weird when people don't ask.
But, again, my issue is not cancer and I hope my comments are not insensitive to those with that condition or to their families.
28
Just say "It is good to see you." They can share what they want.
9
The issues of tact, diplomacy and sensitivity wisely enumerated here are applicable to so many lesser interactions of each day and one shouldn't have to encounter dread diseases to be inspired to employ them.
35
L Martin:
Your comment is beautiful as are so many of the other comments. The comments show kindness and love -- "what the world needs now," to borrow a phrase. It is extremely ineresting to see who comes through for you when you have a very serious illness/problem. My experience is that doing or saying something is better than thinking about the ill person but not taking a step toward her or him.
Thank you for
Your comment is beautiful as are so many of the other comments. The comments show kindness and love -- "what the world needs now," to borrow a phrase. It is extremely ineresting to see who comes through for you when you have a very serious illness/problem. My experience is that doing or saying something is better than thinking about the ill person but not taking a step toward her or him.
Thank you for
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For a sick patient, instead of talking, make them and their family dinner, bring groceries, flowers, fix the dripping faucet, take their kids out to a movie, throw in a load of laundry. Be useful. I'm pretty sure that's sometimes what cancer patients appreciate. From experience!
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Double points for the laundry. "Can I come over and do your laundry?" Followed with "Let me make sure I'm clear on the special instructions?" would be HUGE. Haven't gotten that yet...
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As someone with close friends and family who have been diagnosed with cancer, here are some suggestions. The main point is not to let the cancer steal away any more of your friend's life than the minimum you can't protect:
1) keep being friends-- call regularly and talk about the same shared interests you always did. Listen carefully for hints of wanting- or not wanting-- to talk about cancer. Perhaps the first few conversations, or conversations after an "event" may be more focused on "what happenened" but the others can become more like a typical conversation with this friend
2) find out-- or as a friend it may be immediately obvious-- what your friend misses doing and help him or her to do it-- e.g. if s/he misses going to the theater or concerts: you may not be able to meet in the lobby-- it may take meeting at his or her home and bringing your friend there and back, arranging for accessible seating or helping with a wheel chair or walker-- same for going to a restaurant
3) financial stress may interfere with going out, or taking an art or singing class -- perhaps a group of friends can help, either financially or visiting and singing or sketching together
4) pot luck lunches and/or dinners at her/his home or yours: the person may or may not be able to eat, but that's not the point. Seeing, singing with, laughing with a group of friends is the point
5) A weekend trip to a favorite place? To visit friends? To a new place for someone who loved to explore?
1) keep being friends-- call regularly and talk about the same shared interests you always did. Listen carefully for hints of wanting- or not wanting-- to talk about cancer. Perhaps the first few conversations, or conversations after an "event" may be more focused on "what happenened" but the others can become more like a typical conversation with this friend
2) find out-- or as a friend it may be immediately obvious-- what your friend misses doing and help him or her to do it-- e.g. if s/he misses going to the theater or concerts: you may not be able to meet in the lobby-- it may take meeting at his or her home and bringing your friend there and back, arranging for accessible seating or helping with a wheel chair or walker-- same for going to a restaurant
3) financial stress may interfere with going out, or taking an art or singing class -- perhaps a group of friends can help, either financially or visiting and singing or sketching together
4) pot luck lunches and/or dinners at her/his home or yours: the person may or may not be able to eat, but that's not the point. Seeing, singing with, laughing with a group of friends is the point
5) A weekend trip to a favorite place? To visit friends? To a new place for someone who loved to explore?
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From this two-time cancer survivor: Another nice gesture is to send a private note, email, text message or call, just simply stating that you've heard the news and wanted to send your love. Ignoring someone's illness is very hurtful to the patient.
But, if during a prayer service you are asked to offer names publicly of ill people for a healing prayer, don't offer the patient's name unless you have permission to do so. Some cancer patients, and other sick people, don't want the community-at-large to know they're sick.
But, if during a prayer service you are asked to offer names publicly of ill people for a healing prayer, don't offer the patient's name unless you have permission to do so. Some cancer patients, and other sick people, don't want the community-at-large to know they're sick.
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I'm interested in opinions of how much of one's own life should be hidden from a friend with cancer? A long distance friend of mine is going through treatment for colon cancer. We've been in touch every few months for a while and in between the last two times we talked, my step kids' mother died of cancer and the kids, one of whom also has cancer, moved in with us. When my friend asked in an email what was going on with me, I told her what had happened. Silence. Now I'm worried that it was insensitive or wrong to mention, even though it's a major occurrence in my life. How much should one hide of one's own life when talking with someone going through treatment for a serous illness like cancer?
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"...my friend asked in an email..."
I'm assuming you replied in an email. Don't read too much into the lack of response. Email isn't the best avenue for having heartfelt conversations.
But you shouldn't have to hide your life away. Pain and struggle are a two-way street. Nothing would hurt me more than if a close friend were to stop seeing me as a competent and viable friend because of an illness. It's one thing for someone to say, "I wish I had more to offer you know." It's an other to be presumptive and paternalistically withhold dialogue. So many people with serious illnesses just want to be regarded as the "real" people they were before the medical label.
I'm assuming you replied in an email. Don't read too much into the lack of response. Email isn't the best avenue for having heartfelt conversations.
But you shouldn't have to hide your life away. Pain and struggle are a two-way street. Nothing would hurt me more than if a close friend were to stop seeing me as a competent and viable friend because of an illness. It's one thing for someone to say, "I wish I had more to offer you know." It's an other to be presumptive and paternalistically withhold dialogue. So many people with serious illnesses just want to be regarded as the "real" people they were before the medical label.
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While what is appropriate re: conversations/questions depends a lot on the specific relationship between an individual and patient (from acquaintance to spouse), these are some good general tips. In my experience, most people are savvy enough to avoid the more obviously awkward/rude questions and comments. However, the "If you need anything, just let me know..." is all too common. The author is right. Figure out what the patient needs, be proactive, and insist on doing it.
Depending on your relationship, it may also be helpful (if it's true) to make it clear to the patient that you actually enjoy assisting them with their needs and that it's the opposite of being a burden--that you enjoy their company, that you enjoy being productive... In addition to making them more comfortable, it will likely make them more open to asking for specific help.
Depending on your relationship, it may also be helpful (if it's true) to make it clear to the patient that you actually enjoy assisting them with their needs and that it's the opposite of being a burden--that you enjoy their company, that you enjoy being productive... In addition to making them more comfortable, it will likely make them more open to asking for specific help.
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Don't insist on anything. Offer, and if the person says no, back off. Do NOT burden a cancer patient with having to defend his or her boundaries against bludgeoning, however well-intentioned. The last thing I needed in the thick of treatment was to have to argue with someone about what I needed or didn't need.
Sheesh.
Sheesh.
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When people ask me how I am, I say, "I'll do." I'll only give details to people who really want to know details.
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We're all going to die. Maybe we should all treat one another more specially.
Meanwhile, I'm going to apologize in advance to everyone who is afflicted by a serious illness whom I may ever offend by acting as if you're not, in many of the most important ways, so different from me (see first sentence).
Meanwhile, I'm going to apologize in advance to everyone who is afflicted by a serious illness whom I may ever offend by acting as if you're not, in many of the most important ways, so different from me (see first sentence).
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My father had leukemia and battled for five years before slipping from this world. He was treated 150 miles away from his home at a large medical center and spent many weeks in and out of the hospital; he and my mom bunking with me when he was out. My parents neighbors were fabulous. One, a retired Methodist minister, called to offer words of encouragement and then said, "I'll be getting your mail every day when you're in the hospital and putting it in a bucket. Once a week I'll call and we can go thru the not-junk mail and I'll put the things you need in an envelope and mail to your daughter's address." Another wanted to be alerted when they were coming home each time, and she would run to the grocery store and put bread, milk and a few other staples in the house, along with something for their first meal home and give my mom a chance to sleep before going out for supplies. Sometimes actions are the best thing you can offer to do. Take-Them-a-Meal set ups are fabulous to help neighbors and their families when that is one burden that can be handled - and it is something tangible.
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You mention "curiosity". This is an unhelpful characteristic in a friend, whether it's cancer or any other devastating issue. A real friend does not come around because he or she is curious. Wipe that off the slate before you call or visit.
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@mary: I disagree with you. A friend wouldn't be much of a friend if s/he weren't "curious" about how my life was going. You call it "curiosity" - I call it "friendly concern".
If my friend has lost a job, been ill, won an award - good events or bad, I am concerned, I am interested. I want to be supportive, sympathetic, whatever is appropriate. My friends are clear about saying "I'm going through a bad time, but I don't want to talk about it right now" and I respect that.
But a friendship in which nobody knows anything about the other is definitely not a friendship in my world. If a friend says "Would you sit with me for a bit" then I will do so - and not a word need be spoken unless my friend wishes it.
If my friend has lost a job, been ill, won an award - good events or bad, I am concerned, I am interested. I want to be supportive, sympathetic, whatever is appropriate. My friends are clear about saying "I'm going through a bad time, but I don't want to talk about it right now" and I respect that.
But a friendship in which nobody knows anything about the other is definitely not a friendship in my world. If a friend says "Would you sit with me for a bit" then I will do so - and not a word need be spoken unless my friend wishes it.
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This is very useful article. It is full of real life experiences and the 9 suggestions are worth wider dissemination. My only experience, both as a cancer survivor and professional emotional health care provider is as follows: Firstly, it is important that people with a diagnosis of cancer are encouraged to share their health stays to those who are close to them( this type of communication is missing in nearly half the people in India). Such sharing allows for others to provide support and the persons accept support. Secondly, the friend/relative should keep regular contact rather than ask the person to call when needed. The point made in the article about BEING THERE is so important. Thirdly, it is important to convert interaction into an activity- shopping, playing a game, visiting a place of worship, relaxation exercise together so that the activity is mutually beneficial. Most importantly, if the person with a diagnosis of cancer is important to you, keep in regular touch- email, phone call, personal visits. Living with the many challenges of cancer is lonely experience and your long association is what will be most helpful. As a professional in this field, we are working at our centre, to share this information/ skills of care taking and caregiving to the persons with illness and carers as an essential part of the total care programme, right from the start of therapy contact and throughout the care period.
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Summarizes everything that a well wisher and care giver should know about before speaking to the patient.
I am currently on chemo again for an aggressive cancer. I have had support from wonderful friends and recognize how awkward it might be for others to talk to me about my disease. I can think of two difficult conversations I wish I didn't have to deal with over the years. A well meaning friend continues to insist I would be cured if only I eat a specific mushroom. I continue to say please don't discuss this with me. A relative who calls regularly to ask how I'm doing then launches into a long discussion of her recent doctor appointments, medications, etc. I'm often sympathetic of what she's going through but chemo side effects can make me less available to nurture someone else. I will never forget and treasure a coworker who " happened to be passing by" and dropped off a home baked blueberry pie.
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This is a neglected aspect of the cancer life. The unthinking, hurtful comments often are remembered by cancer survivors long after their cancer fears have calmed. Two excellent books on this subject are: Cancer Etiquette by Rosanne Kalick and Help Me Live: 20 things people with cancer want you to know by Lori Hope.
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