Over these last couple of months, we've talked a lot about what we, as cancer patients say to others. The whole truth and nothing but? Or a slightly watered-down version? And in the last couple of days, we've been talking about what other people say. Does it help, or in some cases, and totally inadvertently, does it hurt?
A woman named Paula wrote in to ask "What would you rather they say?" Excellent question, and I don't have a ready answer for her. Sometimes I don't need others to say anything, sometimes I just need them to listen. I appreciate it when they say they're sorry, and that's when I find myself comforting others rather than the other way around. It's hard to see the sadness in the eyes of others, I truly wish there was something I could do or say to make it easier.
I don't really need advice. Some people want to suggest a particular form of treatment, or diet, or something like that. I listen to all of that, and do check out things that sound promising. But it's hard to keep track of every new drug or treatment or diet or whatever. It all becomes a little overwhelming at times, but you also don't want to miss something important.
So to get back to Paula's question, what do I want others to say? There is no right answer. It depends on me, my mood, how I'm feeling, my emotional state, and it also depends on who it is that I'm talking to. Some people don't need to say a word, I already know how they feel. It doesn't need to be spoken. Some talk about everything but my cancer, and sometimes that's exactly what I need too. There are no magic words that I need to hear. Yes, there are some things that shouldn't be said, but sometimes are. And I don't think that people are insensitive, I think it's hard to know what to say.
Before I set off down the cancer road, I'm sure that I said some really stupid things in those situations. I just didn't know any better. So maybe when it comes down to it, it's not the words that matter so much, maybe it's just the act of trying to say something, for our sake, and for theirs. Maybe it's just the act of trying to reach across that dividing line that seems so huge to all of us on both sides, maybe that's what's really important.
OK... here's what not to say. Shortly after my surgery for breast cancer, a younger family member called to talk to me. Obviously, she needs work on her people skills, because she lauched into a fairly graphic account of the terrible death of her aunts second husband from cancer. THAT didn't help. I am not sure what motivates that kind of reaction. Perhaps it's from a lack of anything to say on the subject of ones own illness, and a desire to say SOMETHING. It's beyond me. However, I can say with certainty to those reading this who don't have cancer, that that is NOT what we want to hear.
Sent by Nancy K. Clark | 12:42 PM | 10-2-2006
Thank you for writing this column. You're doing such a service with it.
Everyone's experiences and sensitivities are different, and on any given day the same comment might be ok or might be difficult to hear. There is often no way to know that ahead of time, either for the speaker or for the cancer patient/survivor.
There are a couple of books that people can refer to on this topic. Help Me Live: 20 Things People with Cancer Want You to Know has sections on great things to say and do, not great things to say and do to say and "what to say instead" and Cancer Etiquette: What to Say, What to Do When Someone You Know or Love Has Cancer.
The intention of the person, and their attempt to reach across what you call the dividing line are usually honorable, regardless of how poorly executed that intention/attempt might be. Sometimes it's a lot to ask of the patient/survivor to have to extend that understanding to someone who's just unwittingly said something upsetting on an already tough day. I think it's great that Paula asked what you rather others say in an effort to be sensitive and supportive, and hope this discussion helps people on both sides of the line.
Sent by M.J. | 1:27 PM | 10-2-2006
I may have said this before but in looking back at when I was first diagnosed the comment that I still remember was, "I'll be there." At the time I didn't realize how important that statement was. I thought yeah it wont be long so... but as the roller coaster has continued now for 15 months that friend has been there through surgeries, chemo, and even a trip to Paris. I have had many folks be supportive but I think those words looking backwards were the most profound. I know how difficult it is for people to hear the news but perhaps if they react in whatever way is natural to them we need to accept their genuine emotions.
Sent by Dona | 1:28 PM | 10-2-2006
The hardest thing for me, once I returned to work/my life after helping to care for my mother after her surgery was that it seemed people would (and still do) somehow think that asking me about her health is small talk. You know, in the elevator, as we pass each other in the hallway, in the lunch line, "how's your mother?" I'm sure cancer patients get it, too.
Please, either don't ask, or make sure there's enough time to truly listen.
Sent by Mara | 1:30 PM | 10-2-2006
My husband's colon cancer came back after 30 years — it is in the 4th stage, also in the lymph nodes. He just started leucvorin avastin camptosar and 5-fu, so we could use all your prayers.
Sent by Georgia Noel | 9:38 AM | 10-3-2006
As the mother of Mara, and therefore the cancer patient, I get the same question. "How are you?", always on the fly down the hall. My standard answer is some variation of Great! or maybe, Fine! or even Terrific! Since I don't really know differently and won't until my doctor tells me otherwise, I suppose it is true. The funniest thing anyone said to me . . .
This was after surgery for pancreatic cancer, then a round of chemo, followed by radiation with more chemo, and in the midst of another round of chemo, a fellow worker said, "Oh, I thought your cancer was all gone." As in, I thought you were so over that. My jaw just dropped. I had to laugh at her naivete. I only wish.
Sent by Stephanie | 9:42 AM | 10-3-2006
Maybe I'm just cranky today because I just had chemo a few days ago and every side effect is kicking in full time today, but my peeve today is for those people who mean well, but insist that they know of a cure that will take care of all my tumors today. I'm sure that your best boyfriend's cousin really was miraculously cured of everything from hangnails to cancer by using the extract from some mystical and exotic far eastern plant. That's wonderful, but I can't help but be skeptical since there's no clinical proof that it does anything but put a shine on your floor, or that you just so happen to be a dealer for this wonder drug. I get this pitch at least twice a month and I try to be polite and offer to look into it sometime. Please — no more sales pitches. A simple, "I hope you're doing well" is appreciated much more. If I want jujube bark extract, I'll check with my oncologist and alternative treatment therapists.
Sent by Bob | 9:44 AM | 10-3-2006
I think it totally depends on the day and the mood! Lately, I have so many people asking about my prognosis, which I find really annoying and too personal. I don't know ... I am just going through chemo, living every day and trying to get through like everyone else. I think it depends many times on who it is coming from. Most of the time I end up trying to break the ice for the other people, and that is OK too.
Sent by Sheila | 9:47 AM | 10-3-2006
I was diagnosed in April with Stage 3 Uterine cancer. Before my cancer, like most people, I ignorantly made comments to those who were unfortunate enough to suffer from this disease. I either made vague generalizations or I ignored the person hoping not to make eye contact with them.
I've had people react to me in several different ways. Avoidance seems to be the preferred method until the first eye-to-eye encounter with someone. I'm not sure if people think it's easier to wait to talk or they secretly hope the cancer will somehow disappear before the next time they see you.
I've had many negative reactions from people about my cancer. People love to let you in on all the horrific stories of chemo and horrible deaths they witnessed from a passing loved one. They always end by commenting, "I'm sure this won't happen to you, though..."
The reaction that bothers me most has been from fellow Christians. I've had people actually say to me, "If you have faith, your cancer will go away." Really? That's all I need? Wow, this is too easy. I'll have to clue my doctor in on this cure.
People who have faith die every day. I don't understand how anyone can be so insensitive to an ill person, but I continue to hear this type of logic. Everyone will die, someday. I have faith I will die when I can't live any longer, not a day later.
I try not to be angry with people who say the wrong thing. But I also use my illness to correct those who say inappropriate things to me. I don't want them to repeat their ignorance. I use my experiences to teach those who aren't sure how to react to cancer.
If I could give advice to those on the outside of this disease, I would say simply, "Listen." The thing that helped me most in dealing with my cancer were the friends and loved ones who listened to me cry, listened to me be angry, and listened to me learn to deal with what was happening to my body.
I don't want to forget those people who are lights in our dark times. People who did or said exactly as they should give us hope and while making us smile. The nurse that joked at the hospital when we needed to smile. The fellow chemo patient who gave us hope through their suffering. The relative who shaved our head and cried with us as our hair fell to the ground. The freind that called to give us love. The hospital aide that held our hand and made us feel human again.
I try not to dwell on the negative aspects of this disease. I am happy to be able to view the world from the place this disease has led me. I understand a realm of life I never knew existed until I lived with this illness. Hopefully, through these types of discussions, we can eduacate people while we gain understanding about our strengths in dealing with this disease.
Sent by Denise Nelson | 9:49 AM | 10-3-2006
If you are on chemo and experiencing nausea, weight loss and malaise, ask your treating physician to get and administer Advanced Viral Researchs product R118. Tested safe to administer, but not yet approved by FDA, it will relieve malaise, restore appetite and aid in weight gain. WBC will rise and allow chemo to be continued without killing you. It equates to a better chance of survival.
Sent by Dr. Wm. J. Lutton Jr. | 10:24 AM | 10-3-2006
After listening to today's commentary, I would feel derelict in my duty as a physician not to inform you that your nausea and fatigue can be eliminated by the use of traditional Chinese medicine and homeopathy.
Sent by W. John Diamond | 2:26 PM | 10-3-2006
I salute NPR for airing these commentaries by people who are combatting cancer. Another story, about a hospital chaplain now being treated for cancer, was broadcast on August 31. It prompted me to blog on the subject of how you talk to a patient or family member, as my mother died of ovarian cancer 50 years ago — September 13, 1956 (when I was 13), and her mother died of it in late August, 1949.
People now fighting cancer have many weapons that weren't available only a few years ago. That doesn't necessarily mean that a patient today is assured of survival — no one is. However, we can thank Richard Nixon for at least one thing — the War on Cancer. That research initiative was the foundation for all the research and advances which have since been made. Fewer children today see their whole futures affected because they have watched a parent die of cancer.
I find myself identifying strongly with Denise. My parents were devoutly Christian, and other people seemed to wonder why my mother wasn't healed, and why she suffered so much (pain medications have also undergone a revolution today — they can almost always keep a terminal patient comfortable, unlike my mother).
I don't know why my mother (and others) had to suffer. It's one of those things that will remain a mystery in this life. There's even a branch of philosophy devoted to "why bad things happen to good people."
Sent by Paula | 9:27 AM | 10-4-2006
I too started a blog to keep friends and family informed of my progress through surgery and chemo for ovarian cancer. It is a great way to keep people in the loop without answering the same questions over and over again.
My advice to them on what to say was this. Say something. If you don't know what to say, say, "I dont know what to say." The best thing you can say is, "I'm so sorry you're going through this. What can I do to help?"
When people don't know what to say, they often say nothing, which is the worse response of all. Hearing from friends and loved ones during a difficult time is one of the biggest and best things to keep us going. I loved the response from the friend that just said, "I'll be there." That is a beautiful sentiment. But if you say it, mean it and do it.
Sent by Tracy Maxwell | 9:41 AM | 10-4-2006
I HAVE A NEICE THAT HAS LUNG CANCER. SHE IS WAITING FOR ANOTHER MRI. SHE SAID TO ME TODAY I HAD SUCH A ROTTEN CHILDCHILD AND NOW I GET THIS I DON'T FEEL LIKE GOING ON. WHAT DO YOU SAY TO THAT PLEASE HELP ME TO HELP HER
Sent by BEVERLY | 7:20 PM | 5-9-2007
What do you say to someone who is dying? I'm so clueless even though I've been through it a couple of times...
Sent by Diane | 6:21 PM | 8-18-2007
There are no pat answers for what to say with anyone facing a deadly illness. Recognizing that you 'don't have the words to express how badly you feel' or admitting 'I simply don't have words to say to you' can be comforting. In the end, it is what you do, not what you say that will matter. Showing up and listening intently can speak volumes without uttering a word.
Sent by Mark, a Stephen Minister | 9:31 PM | 9-9-2007
Thank you all for your comments and candid advice. I am waiting by the phone for my mom to call with her biopsy results. She battled breast cancer 5 years ago and this is a very scary propect of going thru it again. While waiting by the phone I decided to log on for advice. All of your words of wisdom helped. I pray I don't have to use it.
Sent by Laura | 3:45 PM | 10-11-2007
My father-in-law was just diagnosed with inoperable lung cancer at the age of 84. His health is too frail for any treatments. Without knowing what was wrong with him because of his failing health, my husband flew out to the west coast and physically took his dad to the emergency. Unfortunately, he was diagnosed with lung cancer. My husband feels so guilty for taking his dad out of his house only to find out that he is dying from lung cancer. He is now in Hospice care (not in his home) and will be going to a nursing home soon. (All this has taken place in less then a week). My husband said he was better off not knowing and I think my father-in-law would have rather died at home not knowing. I am lost for words. Here my husband thought he was flying out to rescue his dad only to find out he is dying of lung cancer. My husband's concern was his dad was caring for his debilitated step-daughter age 61 that is confined to a wheel chair and with his father's failing health caring for her.
Sent by Nancy | 9:44 AM | 10-28-2007
I suffered from a brain tumour at the age of 9. Radio, a shunt and a stroke etc...As a child the most important thing is to have faith in your parents. I learned that there were so many others there in far worse situations than me and considered myself lucky. I was looking through this site as my aunt has just been diagnosed with breast cancer and I have written her the following note (if this can help anyone). "I want you to know that I'm thinking about you all the time, that you will be strong and things will happen so quickly that before you know it you'll be home, happy and healthy. I want you to know that we all love you so much, are cheering you on all the way and will be following your progress..." I have deliberately left out anything to do with my illness as brain cancer is very different to breast... To all of you out there, have courage...
Sent by Chiara J. Davies | 9:04 PM | 1-28-2008
As a cancer survivor I find it more supportive and comforting to hear someone say," I heard you've got a challenge ahead of you, and just want you to know that I am here for you." Is there anything you need at this time?" This immediately opens or closes the door to those the patient wants to communicate with and closes the door for those who are simply inquisitive.
Sent by Yoli Bell | 2:02 PM | 3-4-2008
Stupid comments I've had:
Oh, my mother died of your type of cancer - she was in dreadful, dreadful agony. It was a horrendous death!
Are you pregnant? Your tummy looks very swollen! Congratulations (patting it painfully).
Ohhhh you look so THIN! You've lost weight! You don't look like yourself any more!
Eeeeeeeek! What have you done to your hair? You used to have such lovely hair! (angrily) why have you done that to yourself?
I can see you're giving up. I can just tell you are. When people give up, they die. You MUST be positive.
Sent by Alison Selinus | 7:13 AM | 3-11-2008
After reading these comments, I now know why people sometimes don't say anything. I can't blame them either.
Sent by Maureen | 11:37 AM | 3-31-2008
I had a friend along time ago that her mother had been diagnosed with lung cancer. It was only a matter of a few months and she was gone. I did not know how to deal with it. So I disappeared from her life. It was one of the most selfish things I have ever done in m life. I saw her a couple years later and after much awkwardness, we were hugging and crying together. can't say that everyone's story turns out like this one. To Nancy ... your husband did what he did when he did it ... we should not second guess ourselves, it only gives way to torment and pain and guilt. We do what we do at the time because we believe we are doing the right thing. Let it be, let it end there. Give your burdens to God. God really cares for us. I know that sounds strange to some, (maybe) but, He really does. No,He doesn't always heal when we think He should, or ansswer our prayers in the ways we think He should, but He does promise to be with us always.
Sent by Heidi | 10:21 PM | 4-21-2008
My dad passed away with throat cancer a few years ago, but the thing was he was a heavy drinker and smoker up untill he died. And it didn't hit me so much. But when I rang my best friend (who has always been a true good person I mean a pure soul) a few hours ago and she had just been told she has cancer of her cheek bone, I didn't know what to say and was silent for a lot of the phone call. I spent the last few hours kicking myself untill I read all of these true life stories & the jornery people have had. I have learnt so much and now know it is so ok to be silent..Thanks
Sent by Ann Marie | 9:38 PM | 8-19-2008
I can't thank you all enough for this. We have an acquaintance who was recently diagnosed with stage 4 brain and lung cancer. He's in his late 40's and his wife just told us about it and asked if we could come by to visit. I didn't know where to begin and your advice has been a tremendous help. Perhaps a yummy dinner, some new music or a game and a listening ear. Thank you all.
Sent by Catharine M | 6:52 PM | 9-11-2008
My father died at the age of 54 from colon cancer in 1989. My mother died at 67 from lung cancer this past November. Every day is a challenge for me. I was 25 when my father died and not yet married or had children. I am 44 and now have 3 children and miss both my parents terribly. I have often question my faith, have been angry, scared and often feel very alone, although I have a wonderful husband and 3 beautiful children. I watched both my parent suffer terrible deaths. I often prayed for my mother to just quietly go in her sleep, but that was not the plan for her. My life will never be the same. I will never look at things the same way nor will I ever take anything or anyone for granted. To all those people who think the thing to say is "well at least they are no longer suffering" or "your Mom had a good long life"..makes me want to scream. Please just tell us you are there, let us cry, hug us and every now and then, just drop us a note to let you know you haven't forgotten us. After death, the pain for the family does not dissapear. Life does not go back to normal. Sometimes it is very hard to watch everyone else's life go on as you feel yours has come to a screeching halt. One of the most insensitive things that was ever said to me was when my mother was in full blown kidney failure, I had a friend who told me she knew exactly how I felt as her cat had just gone through the same thing.
Sent by Karen Wendt | 2:24 PM | 9-12-2008
Although I haven't had cancer, I've lost several family members and co-workers to cancer and I did lose my 17-year-old son to brain death so in the past 12.5 years since his death, I've heard the full gamut of things said or not said. One of my favorites was from a highschool girlfriend who I know has tried her best to 'say the right thing' and I give her credit for that. During one of our grocery store happenstance meetings she said "God never gives us more than we can handle." My completely caught-off-guard response was "I'm not sure about that." I've never forgotten what she said and I did find what I consider a positive response . . . "God doesn't give us what we can handle. God helps us handle what we are given." I believe that God gives us courage.
Sent by Barbara Bennett | 11:54 AM | 9-15-2008
My mother is dying of cancer,I'm in Michigan and she is in calif, I can't afford to go out there so I call as often as I can and it hurts me so bad that she can't hardly talk on the phone because she is on some heavy duty pain pills.And I don't know what to say to her I just tell her I love her.