I’d say for the first 4 months after diagnosis, cancer was the only thing I thought about. Even when I thought about something else, I thought about it in relation to cancer. It consumed my every single thought. So when I would run into somebody that didn’t know about the diagnosis, I couldn’t ever think of anything else to talk about.
Some people responded very strangely to the news, though, when I told them. Most people would be shocked, or worried, or both, but some people… Some people would totally ignore it. Like I never said it. Or they’d act like “I have cancer” is a normal thing to say. Or worse, some people would mark that as the end of the conversation. “Ok, well, I got to go,” they’d say hurriedly. Or they’d change the subject immediately. The news would just send them directly into fight or flight mode, and they’d start running. It was interesting.
It’s such awful news, that there’s bound to be some inappropriate responses to it.
The worst, I thought, was when someone knew about it, but would play dumb until I told them. They’d ask me what I’m up to and then stare at me. It would be the stare that would give them away. They’d just be too interested in my response. So I’d hint at it a bit, “oh, I haven’t been feeling that well,” or, “well, things have been better…” Hoping they’d just say, “yes, I heard.” But instead, they’d say, “oh?” So I’d have to go through the mix of emotions that always came whenever I’d have to tell someone that I had cancer.
And once I went through all that, they’d say, “oh, yeah, I know.” Still staring. Waiting for the show I guess.
Everyone, let me explain how you should respond to someone who just got diagnosed with cancer:
• Do not ignore them. Do not stop calling them because suddenly you don’t know what to say. Do not try to avoid them in social situations because you are uncomfortable.
• Go up to them. Call them. E-mail them. Tell them, first, that you heard about the cancer. Tell them second that you think it sucks and you’re sorry to hear about it.
• Don’t talk about your uncle who died of the same cancer. Don’t talk about how your whole family has had cancer, and you’ll probably die of it, too. Don’t talk about how many people die of it every year. Don’t talk about death.
• Don’t talk about how you once got diagnosed with pneumonia, so you can understand what it’s like. No you can’t. Don’t try. Tell them you can’t even imagine what it’s like to go through something like this.
• Do not talk about the alternative medicine that you read about in Crazy Monthly, that is sure to cure them of their disease. Don’t tell them that their treatment isn’t good for them, and that lot’s of people end up dying from the treatments, or that chemotherapy is just a big conspiracy between the government and the pharmaceutical companies, etc., etc. Don’t tell them how they got it. Just stop. They don’t need to hear about it.
• If they are sad about it, don’t tell them that they shouldn’t be sad. They have a right to be sad, or exhausted, or whatever it is they feel. Don’t tell them what to do.
• Ask them about the treatment – then listen to the response. It might be a long response, with a lot of medical terms. Listen anyway. It’s all they probably think about right now, anyway, so just let them talk about it.
• Give them a hug, or a handshake, or a pat on the back. Touch them somehow. Tell them that you’re concerned for them, and you’re looking forward to them being a cancer survivor.
• Do not give them the line, “if there’s anything I can do just tell me…”, unless you are absolutely certain that you would do ANYTHING for them. Just don’t say it. Because most people don’t mean it. If you really want to do something for them, come up with the idea yourself, and then do it. Send them flowers, or a book, or bring over dinner for them.
Hey, I googled “what not to say to a cancer patient” and yr blog came up first. Thanks for this – I’m going to be doing a posting on this subject & I especially like the last one “If there’s ANYTHING I can do…”
Yeah, right. We were so exhausted taking care of my mom-in-law, who wanted to die at home, so I told one woman we needed some meals. She had just finished saying this line, but when she heard what I needed, she said, “Oh, I don’t cook. What’s wrong; why can’t *you* cook?” hahaha! I never asked anyone again.
A few days later, someone just showed up on the front steps with a full meal for everyone – yesss! What a blessing that was.
Anyways, I started my blog when I was diagnosed in August 2009. It’s good therapy.
Take care and hope you are doing okay,
Wendy Farha
Montreal, Quebec, Canada
Thanks Wendy, good to hear from you. Unfortunately, your story sounds just like what I and a lot of cancer survivors went through. Don’t say it if you don’t mean it, right!?
I hope you’re doing well. Keep in touch.
Haha…I was going to start a similar list. It is amazing the things people say without meaning to hurt your feelings. Most of the time it is an attempt to get you to see the “Silver lining”.
My favorite was shortly after I began chemo for Hodgkin’s someone said, “Well at least you already have a child.”
Ummm…I am only 28 and recently married…maybe I had planned on having another???
Jessica
New York
Wow Jessica, that had to be an awkward conversation!
Thank you for sharing this. It’s a post that EVERYONE should read! Wishing you and Jessica a long, healthy, cancer-free life!
Hi Dave
Congratulations on your survivorship! I’m a cancer survivor myself and it’s always inspirational to read other survivors’ stories.
My journey with cancer led me to resigning my corporate job and joining a cancer organisation full time. I’m doing a talk to a nursing college this morning on what NOT to say to cancer patients and whilst doing some research on the topic I stumbled across your blog.
I would love to put a link to your blog on our website if you wouldn’t mind. I think it’s informative and filled with lots of hope. It just confirms again how much all cancer survivors and patients can relate to one another, no matter where on earth we live.
Wishing you much joy and health.
Eldre
People Living With Cancer
Cape Town
Now that my hair is (slowly but surely) growing back after my 12 treatments for Hodgkins, people comment on my “cool haircut” all the time and tell me how brave I am to cut my hair so short. “Oh, hey, thanks…I had it done at the Chemo Salon. For just a $20 co-pay every two weeks, you too can have the same haircut.” Sometimes I use that line and sometimes I just smile and nod.
Thank you so much! I was told in January this year, outside of immediate family I have told 3 friends with award responces. One that I thought would run a mile has been very supportive and wonderful, another has ran for the hills, dispite my supporting her mothers Alzimers after losing my own mum to it. I’m not into tit for tat but this has left me feeling very angry, dissappointed, and not wishing to continue our ‘friendship’ which in turn is making me angry and disappointed in myself.
Would you mind if I were to use your list of what not to say.
All the very best
Frances. UK
Sure Eldre – please feel free to link.
@Frances – I had some of those same experiences. I still have friends that never talked to me again after I was diagnosed – it’s been over 5 years now! And not just acquaintances – real, lifetime friends stopped talking to me altogether. It still hurts a bit, to be honest.
Dear David,
Thank you for producing such an incredible blog and sharing such honest and personal experiences. I was looking for some insight, and I appreciate having found this.
I have two people in my life that are close to me that have been recently diagnosed with cancer. The first is my mother-in-law to be (I’m getting married May 30). She is a lovely lady, and was diagnosed about a month ago with lung cancer (stage IIIA). She just began chemotherapy last Tuesday, and has been hospitalized from the amount of fluids she has lost (she is very nauseaus). It is heartbreaking to see her so ill.
The other is the husband of a very good friend. They were married for 8 months when he was diagnosed with a rare kind of genetic cancer (a little over a year ago). It’s all over him – lung, spine, bones, kidneys. I saw him around Thanksgiving, and again a week ago at the hospital. I couldn’t believe how drastically different he looked. It was all I could do not to burst into tears (but I controlled my reaction…he told my fiance earlier that he doesn’t like people reacting badly when they see him, he knows how he looks). I just can’t imagine how he and my friend are coping.
I want to help so much, but feel utterly inadaquate. I don’t know the right amount “checking in” I should be doing with my friend, or the right words to say to anyone. At this point I’m trying a balance of just showing up, visitng, talking about the “usual stuff” of things going on, and listening to what they are experiencing and their next steps. Is that about right? Is there anything else I should do?
I appreciate your input, and congrautlations on your success.
Regards,
Jennifer
After I got diagnosed (non-Hodgkin’s), I told anyone who asked: what you can do is come to make dinner for me. Four months into chemo, I see that asking something specific was wise; finding out who actually would apply heat to food in my kitchen was a different lesson.
What not to say? Top on the list, are you nauseated? If I were, would you really want to know?
Second? Your hair will grow back thicker and better than it was before. Really? You know this how? And what if I were perfectly happy with my original hair? Not to mention, do you know that you lose your hair everywhere? That’s not in the fine print on the go-to-chemo intro. Then again, so much isn’t.
David, I just discovered your blog and enjoyed it a lot.
My mother was diagnosed with colon cancer last year and I’ve elected myself as her companion for all “activities” outside her house.
We have endured endeless hours of chemo, we have had countless tests made everyweek, we have waited for hours for her doctors appointment, we have spent days at the hospital. Even though I’m not a cancer patient, I’ve been leeding a life of one. So it’s easy for me to conect to your history.
It’s hard and I can’t imagine how people manage to go through such an ordeal and maintain sanity.Even after all these months I’m amazed to find laughter and joy at the hospital. Sometimes you see someone looking really bad, and then comes a smile. It is amazing.
Well, your blog is really inspiring. I intend to read it all!
I was really happy to hear that your was a happy history. That you got well and healthy.
Melissa
what a great list…My son is heading into a stem cell transplant in a couple of days…2nd tour with Hodgkins..I especially like the….Well if you had to pick a cancer to get..this is the one you want….Really, no one wants cancer!!!Anyway love your list…Thanks for sharing Teri
At last sense!!! After my daughters cancer diagnosis 8 months ago, we have certainly found out who our friends are. I can relate to the ignoring, blanking, staring, comments about hair and the one that bugs me the most….fingers crossed!! We have had people compare it to their childs asthma, clicky hips and many others. Now after 8 months of horrendous treatments, operations before and after radiotherapy people are slowly getting in touch. It feels like now the hard work is nearly over and shes had clear scans (lets face it, its never over) they can get back in touch as it makes them feel less uncomfortable. I must admit i was very rude to a so called friend of 20 years last week, who has blanked both myself and my 17 year old daughter throughout treatments. At the beginning she even asked if she could stand on the doorstep if she popped round. So now im the bad guy, which is fine but after everything my daughter and family have battled this year i have got to the stage where i just dont care what they think of me. Thank you for putting everything into place and its not just us that have experienced such ignorants! Many thanks xx
I am a 2-time breast cancer survivor who now works for a small nonprofit organization as a writer. I am writing some literature that can be handed out to employees when we visit businesses, and one of the pieces I am writing is about what not to say or do to a cancer patient.
Several months after cancer treatments and bilateral mastectomies, I made the decision to go through the almost two year and several surgeries process of breast reconstruction. When I confided this decision with a coworker, her response to me was, “why bother.”
I was shocked by her response, and remember thinking, “this is some pretty big talk from a woman with two healthy breasts.”
Anyway, great job on this blog and I sincerely wish you health and happiness.
Thank you for this list. I have recently informed one person that I have been diagnosed with bone cancer (Osteosarcoma, stage 2) and since the initial “I have bone cancer” conversation, he hasn’t once asked if I am OK, or even mentioned it.
I am so very angry towards him for that and he’s totally let me down. I don’t need to be ignored and I am most certainly ot a leper either.
Thank you so much for your blog! I was diagnosed with the very rare EHE- Epitheliod Hemangioendothelioma ( the same type Kris Carr has).
You hit upon great points, and I can add another!
” You don’t look sick”, is the worst thing I keep hearing!!
Please people stop saying that!!
I cant say Thankyou enough for the info. I have a family member who was diagnosed a few months ago. She wants no one involved and wont give any info to even her sister ??? I cant understant what she is going thru, just dont understand wanting to go it alone. Is this normal? I think thos of us that arent in that situation just dont know what to do. If she wont even tell you any thing and wont let anyone visit, what should we do??? Please help,, any one,, We dont want to be doing or saying the wrong things. I already made the mistake and said Im here for you . Just to let you know, I would do any thing, just dont know what to do. Thankyou again for this site, I will pass it along to other family members. Good luck to all of you and thankyou for being honest.
Well here’s a funny one i felt bad for the guy. So i go to work(firefighter/paramedic) to talk to the boss to inform him whats going on, one of my co workers who i race mountain bikes with stoped me and asked, how are you? are your ok? people are asking me about you, are you dying, if so can i have your mountain bike. WOW WTF JUST HAPPENED. So i informed him i was just diagnosed with TC he didn’t believe me then when i said it again the look on his face was priceless, i have to say i havent been laughing a lot but this did.
Hello,
I stumbled upon this blog.
People say such foolish things but usually I roll my eyes, curse them under my breath and move on.
What hurts is the friends I’ve lost. Everybody else (who have been amazing) tell me these people aren’t worth it anyway.
It doesn’t hurt less I think. I wonder why some of my closest friends stopped talking to me. Yes, it is difficult and yes it is awkward -but to throw away a friendship?
This isn’t contagious. And as frightening as it is – staying away from me doesn’t mean your life is guaranteed to be free of bad news.
It breaks my heart.
Hope you’re well.
And the writing really helps.
I was diagnosed with stage 3B Breast Cancer about 3 weeks ago. I just started chemo last week so my husband was reading about chemo when he came across your blog. He turned me onto your blog because we both find it human and witty and very interesting! I really like this particular blog a lot; if I was to add to your list on “what not to say to a cancer patient” I would add not telling the cancer patient that their illness is causing others distress. My mom told me that she was now suffering from insomnia, anxiety, unable to sleep, focus etc. For some crazy reason hearing this didn’t make me feel better for sharing my diagnosis… Anyhow, kudos on documenting your emotions; very insightful!
I was actually looking for a blog about how to communicate to a cancer patient when I found your great blog. I have a family member diagnosed 2 years ago with multiple myeloma. Just wondered about depression in cancer patients. Whats the best thing to do or say?
And what books did you find useful?
Thank you very much for this, it seems like I do all the dont’s and need to change. I am looking forward to you being a cancer survivor :)
Thank you everyone! I stumbled upon this blog this morning feeling so very alone. I am doing the chemo/radiation for triple negative breast cancer that was diagnosed early. I too have been ignored. By my ex boyfriend/co-owner of my house, my children’s father and my family. I find it preferable to go alone to my treatments than to deal with my brother asking me for “documentation” to verify that I have breast cancer. Or my mother blaming me silently (she is 78.) I have lost friends. I am ignored and my own darling 13 yr old pretends that I am fine. She is angry with me and I know she is a child but I hurt so much. It is so difficult to find the will to live when I’m told to bring in the trash cans, fold the laundry of my daughter “together,” be strong, all the while vomiting and dealing with massive migraines etc.
What not to say? Get out of bed, I’m going through a lot too, be happy they caught it early, you’ll be done soon, can’t you just not do the treatments? Thanks for listening..
Hi Anita – that sounds like a terrible situation that you’re in, I’m so sorry. A lot of cancer centers offer free counseling to cancer patients – my mother and I were in it for most of the time I was I n treatment. You should look for your local cancer center and inquire – I think you’d find it very helpful.
Thank you David. To be honest, I have been so utterly overwhelmed with the treatments and being a single mother and still trying to do my small job that I had not thought of that. Thank you so much. Very idea I will look it up asap. Thanks so much.
Anita
Hi David, I am a writer currently working on a book about how to survive great loss, and am including a chapter on a young woman who survived Hodgkin’s Lymphoma. I was wondering if I might include your What Not to Say to a Cancer Patient in that chapter if I attributed it to your blog. Please let me know, thanks! Lindsey Townsend
Great list, and all so true. I have experienced it all. keep fighting, and ill say this meaning every word because ive walked in your shoes.(stage 4 colorectal cancer spreading to lungs and liver)
if you need to vent, throw out thoughts, help with things a person can help with long distance. I will be happy to be there for you. I am now paying it forward with coversforchemo.com
helping one chemo patient at a time.
Really glad to read all of these experiences, it helps to know that other people have had these experiences and not lost their sanity. a woman K, who stepped up and offered to do anything she could and offered specifics made all the difference in our lives during my husbands treatment. So many people offered to help but they had a long story about how difficult it would be to do what they had just offered. K told me they really don’t want to help so don’t waste your time waiting around for them, people who want to help you do, others just like the idea of thinking they are the kind of people who will help you.
So true!
Hi David,
I spoke with my brother and his wife last night and don’t think I am going to bother with that anymore. I did my best to not freak out at him, but this is the gist of the conversation:
Since the radiation was unsuccessful I am now looking at the possibility of surgery and/or chemo and I will lose my hair. He says, without missing a beat, I can just go get a wig. She chimes in that that is not the issue, that I have to focus on getting better.
If I have to hear that comment one more time, I am going to wind up and punch someone….seriously. Duh, of course my life is more important…but I am allowed to grieve this loss. I have noticed the imbeciles who say I can get a “great wig” don’t offer to shave their head or even fathom the cost of wigs.
I then went on to say that I haven’t told our father of the latest news because he takes it so bad. I said maybe it was because he too had the same cancer as me. My brother vented at me saying it wasn’t my father’s fault for me getting this cancer and cancer was not inherited. REally??? Cancer is not inherited?? I told him he didn’t hear what I said. I said maybe that’s why he takes it so bad and that yes, cancer is genetic.
When I first told him about my cancer, he was more focused on a problem that he was having with his neighbors. He really didn’t say much by means of support.
So, I will still be there for him for special occasions etc but as far as letting him know my prognosis…um…NO.
Thanks for listening.
I was diagnosed a few months ago and have a brother and sister-in-law who live only a few hours away and have not been to visit. The sister-in-law does not even bother to call. I have called her myself twice! We are of a similar age and both have young children, so I would think she would be more empathetic, in terms of understanding my specific struggles during chemotherapy, taking care of the kids. Should I say something to her? I am so upset that she has not called me even after I called her. What could be the reason for this?
My coworker is not doing well… Hospice has been called. He is 58, has a wife, grown children.
Is it insensitive to send flowers? Too funereal?
The office staff wants to acknowledge him — let him know we’re thinking of him. I think he’s on IV or at least a restricted diet, so food basket is out. He is too ill for visitors. What’s the right thing to send?
“Waiting for the show I guess” haha. But you’re quite calm about it. I would probably swear and curse while writing my post.
I would send you flowers, but I’m in South Korea and they’ll probably smell by the time they get there. What kind of flowers do you like, by the way?
Family of cancer patients get the same thing. My mother had stage 4 lymphoma and I felt that people, including my family, didn’t know how to deal with me.
I would often get the’If there’s anything we can do…” thing but noone would babysit my three boys so I could visit mum when she was neutrapenic.
People tended to avoid me but when they did talk to me I had to hear about every person they ever knew who had died.
The worst was my ex who would say “Why does she always have to talk about her treatment! It’s so depressing.” Besides the fact that it’s all she has been doing recently, try actually living through it!
During her very last days in hospital, I hated when people would say how she will pull through, we hope she gets better soon when they knew she was dying. I felt like a freakshow because everyone was always staring at us together, like they were judging our reactions and emotions.
When she actually died I felt that my grief was very private and I wanted to keep it to myself. When around my family I blocked it out, changed the subject or made a joke. Someone actually said “It doesn’t even seem like you are sad at all”. What they don’t realise is it’s not like she was hit by a bus, we have been living with cancer for a very long time now. It was the saddest day of my life but I’m not going to wail and breakdown for everyone else. It’s like I want to keep it for my own. I don’t know if I am explaining it very well but there you go.
It was good seeing your blog because now I don’t feel like I was imagining it or being paranoid.
How about “What’s the progosis?” Seriously, I have had countless people ask me this about my husband’s brain tumor. I don’t think people really know what they are asking when they say that.