Things NOT to say to people with Cancer...

I remember years ago when my sister in law was dying from cancer. Back then I didn't know what to say or how to say it but I did my best. Sometimes I would just make up a little gift basket of scented soaps and lotion, maybe a book or a movie, decorate the basket with a big pretty bow and present it to her. People did things for me too. A little unexpected surprise of a small gift or a homemade meal. It brightened my day.

woodwardjnr
I'm glad you posted this, as I've been wanting to rant about this all day. I'm sick of reading threads and posts about miracle cures from people who have never been diagnosed or who have absolutely no medical experience other than a you tube video they saw.

Basically people with no medical experience rattle off a list of ingredients that will cure your cancer, without knowing anything about you. It's damn right dangerous. They don't recommend any dosages based on height and weight of the patient. Don't have a clue how these ingredients may effect what you are being currently prescribed by trained doctors and oncologists, who have worked with cancer patients for their whole career, just a list of a few different ingredients.

I know a number of ATS members with cancer, all have gone down the traditional medical route and still here to tell the tale. Not too many who have cured themselves with alternatives, normally some anecdotal story of a friend of a friend who once used gu gu berries and are now fit and well.

It's not all a big conspiracy by "big pharma" to knock you off.

Untill you have been diagnosed, you have no frickin idea what course of action you would take.

I'm sure most people have your best interests at heart when making these threads and posts, but it displays a massive amount of insensitiveness, when your trying to deal with things your own way. It's almost like putting the blame on you for not trying out their medically unproven hair brain ideas.

I'd rather people just say, "I'm sorry to hear what your going through" rather than being made to feel I'm not doing my best to want to survive.

I understand its difficult for people to approach the subject, but the last thing people should be doing is posting unproven unscientific methods as a cure. Potentially creating more harm than good.

Eat a healthy diet, don't smoke or drink too much do some exercise and you maybe lucky enough to avoid ever getting the diagnosis, until then keep you magic cures to yourselves.

You see this in every cancer thread. I tell people that I used to think I would always choose a natural method instead of the traditional ones. Funny how when you are truly faced with the diagnosis, how quickly you change your mind. I had two kinds of breast cancer at the same time, one was very aggressive.

I just couldn't see putting my faith in some plant or just eating organic foods or whatever. I knew I needed the big guns. I was lucky and just had a lumpectomy, but I chose chemo and radiation.

I had doctors and nurses who were concerned about my physical and emotional well being. They were a truly wonderful team.

These people who think doctors are out to get you are being foolish. If all their patients died because of the reccomended chemo and radiation, do you really think they would still be practicing medicine today?

Never ever tell a cancer patient NOT to go through chemo and radiation. These are the very things that saved my life.

My father died from Pancreatic cancer at the age of 51.
My best friend died from a different form of cancer at the age of 29.
What I learned from both of those situations in the following:

Cancer is the great equalizer as it takes anyone it touches, directly or indirectly, and makes them look\think\sound\smell\feel the same. It doesn't matter if you are a tough and in shape fireman or a young man just entering the prime of your life..when cancer targets you the weight drops off, the circles form under your eyes and you end up looking the same.. bed sores, hair loss, sunken cheeks, a shell of what you were. It is the single most horrible thing ever.

I sit here and I watch the threads of ignorance on this site when someone proclaims some miracle mixture cure of baking soda + vegetables + mineral water as a cure to cancer all because 1 person went into remission at the same time as taking the latest new age approved snake oil. It's frustrating and it is insulting when people think a few cases = scientific proof. No one willingly chooses the treatments for cancer that is of course unless the Doctor is telling you "you have 6 months to live"

It's just as ignorant of the people that sit on this site and proclaim how all doctors are dumb or only after money. In my dad's case I remember his doctor sitting for a few hours towards the end and watching a full hockey game. I remember a nurse cleaning up his vomit as he came through the sepsis this wracked his body. It is so easy for people to hide behind a keyboard here and be an arm chair quarterback on various scenarios. I hope those same people never have to look Cancer in the face because like anyone that faces it you will be humbled and you will eventually lose, either some part or everything.

reply to post by Cancerwarrior


I hope you don't mind me adding two more to the list?

Telling a parent who has a child with cancer...

" At least they are young and don't understand what is happening to them properly"

" At least you can be grateful they have cancer as a child, children bounce back so much easier than adults"

I agree wholeheartedly with number 24. When someone is diagnosed with cancer they no longer by default qualify for the same hopes, dreams and quality of life as everyone else. The name of the game is survival, if they achieve that then they are expected to be grateful...to feel downhearted, angry, anxious etc about long term side effects or coming to terms with what you injured is selfish because you survived, not everyone does so what more do you want?
Your family is left trying to pick up the pieces whilst feeling like it as been hit by a ten ton truck, unsure of the future...whilst friends and extended family tell you " I'm sure glad that's all over with!"

Cancerwarrior
...
These are some of the rudest statements that were actually said to me
...
2. "It can always be worse."

Whoa! I had the most important person in my life say "It can only get worse" to me 33 years ago when I was rushing to pack for "emergency surgery".

I never EVER Ever forgot it and never EVER will.

Regardless of however clumsy their response will be I doubt any of them wishes you ill-will. This appears to be a time when any words will fail. Is there ever a "right" thing to say?

I understand its not intentional in alot of cases, but you would be surprised how often I hear people ask me things like this. I could go on even and list more I'm sure but by the time I got to 24 I was tired of typing.

needlenight
reply to post by Cancerwarrior

 

You okay mate?
Im here for ya, I know alot of ATS'ers are aswell.
The list seems rather bitter. You have to remember, 'we' have not experienced cancer ourself. In such situations 'we' simply sometimes dont know how to respond or react to the seriousness of cancer. Most of us just want to be nice you know? But we get nervous, it scares us, well me at least.

But hey, U2U me anytime you need a stranger to talk to.

I guess I was angry this morning. I saw an old customer of my dads at the local store and he asked how I was and why I was so pale. I told him radiation was the reason and that brain tumor had broken off some and was now metastasizing little melanoma tumors INSIDE my spinal cord. Something only 38 people WORLDWIDE have been known to have their melanoma do.

He then told me how several years ago, he had a little polyp removed from his inner ear that they had initially told him was cancer.

He told me he knew exactly how I felt with the brain tumor and all because of his experience with the polyp.

I don't know why, but that really pissed me off. Then I have been sitting around all morning thinking of all the idiotic things people have said to me (and even things that I myself have been guilty of saying to others in the past in similiar situations as mine.)and so yeah, a little angry rant.

reply to post by TDawgRex

"If there's anything that I can do to help, please let me know..."

That should be directed to your spouse or family member. Not you. And it should also accompanied by the caveat "within my ability to do so."

One time my sister in law said that to us both when I first got diagnosed a few years ago. One night my wife had to be somewhere and she asked her sister to cook me something and bring it over to the house while she was gone. She replied, "Oh yeah....uhhh....I don't cook stuff."

I know people just want to sound supportive or they want to help but don't know how, but If you're not willing to do ANYTHING than by God don't say that you are.

But you should also attempt a bit of humor here and there. When people find out devastating news they just can't seem to keep their mouth shut. Many can't deal with the awkward silence.

I do when I can. No sense in being anything but as light hearted as you can about it.

reply to post by Night Star

People automatically assume that if you eat organic foods and exercise and lead a healthy lifestyle you won't get cancer. Let me tell you all right now, I had a number of women recieving their chemo with me who were utterly shocked that they had cancer because they did everything 'right'.

You bring up a good point. I know people that have chewed tobacco and smoked cigars and drank whiskey every day of their lives and lived to be 70-80 years old. I also have known people who were strict vegans, ran several miles every day and still drop dead of a heart attack at age 35.

You know, even though I smoked cigarrettes and drank an occasional beer I have always eaten pretty well and been very active. While surveying you have to walk quite a bit and carry equipment to and from different set up points. People always said stuff like, "Stop smoking/drinking beer/eating meat you'll get cancer and die."

Thing is though, the kind of cancer I got was from SUN exposure. How the hell am I supposed to dodge the Sun? I guess I could live in a cave or something my whole life, but still.

have been cancer free for a year but it scares me that it could return again.

I know what you're saying on that one. Every three months when I get scanned I get that old feeling again.

Good luck and congratulations on being a survivor

reply to post by opethPA

It's just as ignorant of the people that sit on this site and proclaim how all doctors are dumb or only after money. In my dad's case I remember his doctor sitting for a few hours towards the end and watching a full hockey game. I remember a nurse cleaning up his vomit as he came through the sepsis this wracked his body. It is so easy for people to hide behind a keyboard here and be an arm chair quarterback on various scenarios. I hope those same people never have to look Cancer in the face because like anyone that faces it you will be humbled and you will eventually lose, either some part or everything.

I have had some very dedicated very intelligent doctors and nurses that genuinely had my well being in mind. Especially the folks at MD anderson. So I agree with you wholeheartedly.

I do take the liposomal vitamin C because its cheap and really does help me keep my energy up. I haven't lately because the bitter taste is too much right now. I'm not sure I can control myself if anybody else tries to tell me anything about THC oil or body alkaline levels or becoming a vegan.

reply to post by Logos23

When someone is diagnosed with cancer they no longer by default qualify for the same hopes, dreams and quality of life as everyone else. The name of the game is survival, if they achieve that then they are expected to be grateful...to feel downhearted, angry, anxious etc about long term side effects or coming to terms with what you injured is selfish because you survived, not everyone does so what more do you want?

You get it!!

The best I can look forward to is more scans, MRI's, surgeries, chemo, radiation, and frequent oncologist check ups. It's enough to make me wonder what kind of life this really is sometimes. I was a provider before and a pretty independent person. Now I'm completely dependent on others and its something I've really had a hard time getting used to.

Yeah, I would say those are two good ones to put on the list. Does one of your children have cancer? Or did you hear somebody say this to someone else whose children did?

reply to post by Cancerwarrior


I do not have, and have never had, cancer, but I can relate to your rant here in many ways, as it is eerily similar to a 'what not to say to RA people' rant I saw posted somewhere a long time ago.

5. "But you don't look like you're sick...." (This is my personal favorite that immediately makes me feel like punching whoever said it in the face if I just had the strength to.)

I always want to respond with "well, you don't look much like a twatwaffle, but looks CAN be deceiving." They are lucky that my momma raised me to not say anything, if I can't say something nice.

There are many others on the list that are similar, but in the interest of not writing a novel, I'm only mentioning the main one that stuck out to me the most.

***

I can relate to much (not all.. to be clear) of what you have said here. The daily pain, the bone pain, the mind numbing fatigue that makes even the simplest tasks seem like monumental feats, the bad days, the worse days, how a good day now would have been the worst day ever when you were your former self, the lack of appetite and nausea (a less common, lesser known RA symptom.. I've lost fifty pounds because food? is gross..), adjusting to the new normal that is forced upon you, the well intentioned but ignorant things people say, and the anger/bitterness.

Here's the thing. Illness of any sort... makes people uncomfortable. It may remind them of their own mortality, that things can change on a dime, that tomorrow isn't promised... I'm not really sure why it does, but it does. I think they say that stuff for their own comfort, rather than the comfort of those they are saying to, whether they know it consciously or not. If that even makes sense. Their eyes kind of glaze over and you can just kind of sense it. I'm having a hard time articulating what I mean with that.

In the past, knowing that someone 'gets it' (at least partially), has helped me. Is it because misery loves company? Is it because there is comfort in not being totally alone? I honestly don't know the answer.

I guess I'm hoping that you can find some comfort in not being entirely alone, too.

reply to post by Cancerwarrior


One of my daughters is 12 and she is in remission. So unfortunately, I had those things said to me by misguided well wishers as well as long list of many more.

I remember one night I took a break from the hospital and met up with friends. I was very unsure what lay ahead for my little girl at that point and really wanted a "real" conversation about my worries and feelings. Everytime I tried to steer the conversation this way they tried to counteract it with positivity, which I suspect was more about making them feel comfortable than "giving" me anything I needed at that moment in time.

I wish I had had the strength during my daughter's cancer treatment to be real with people and to answer back to some of the little "gems" of advice and statements they offered...but I didn't. Instead I talked to people less and less until I didn't speak to them at all and completely isolated myself. Which is why I felt your thread was an important one!

My daughter still lives with the effects of her cancer treatment everyday... she is a childhood cancer survivor and people tell me all the time she is very lucky. And yes while every day I feel blessed she is here it breaks my heart that most people fail to recognise and/or acknowledge what she goes through everyday. That lack of acknowledgement overshadowed by the good news story of her survival really hurts sometimes when I have to witness her suffering.

But maybe I am being selfish? I do wonder sometimes if I should just be grateful that she survives? Maybe it should be enough? But then I get angry that the goal posts have shifted and that I should be grateful for her life. But it's not enough...I want the same hopes and dreams for her that other parents can take for granted and is deemed rightfully theirs.

I'm sorry If I have gone on...I hate what cancer does to people....I hate what it does to families....I hate that cancer for many is not just an illness but a way of life that affects every bit of their being during and beyond treatment.

I wish I could convey to you the sincerity I feel right now when I say, that I am so sorry for your loss and suffering...because they are not just a bunch of hollow words.
Thank you for a "real" thread that is a "real" acknowledgement of the plight of many.
Take care (((hugs)))

reply to post by Cancerwarrior


My daughter is dying of cancer and I have a disease that is THE most painful chronic disease in existance that they know so little about it is nearly untreatable, but doesn't kill you... you simply get to live in more pain than I could have even imagined... for the rest of your natural life...

I went through stages of grief... told it was uncurable, unable to walk, cant ever work again, debilitating over time meaning its gets worse and worse etc etc etc...

When I first got it all I wanted was to die... was jealous of people who at least GOT to die or had hope of an end in sight somehow... I get 30 or 40 years of this...

But I am a fighter... and I fought my own body and my own mind tooth and nail for the sake of my children... it was they who kept me fighting, and who I fought for... because for my self I never would have fought... would have given up within the first 6 months...

Now, I can walk again, and for the first time in 14 years I am working again... the pain is still there, but I deal with it better now than in the beginning... just get a bit used to it in time...

So when my daughter got cancer, I reminded her of myself... fight like hell I said... do this for your children... told her if I can do what I did then she can make it through the chemo and radiation... told her she would get better someday, that her hell was temporary and that I would be there every step of the way and she could cry and vent and rant all she needed... but fight for those kids she must!

When the doctors told her she was going to die and there was nothing more they could do she didn't want to talk to me for a few days, and when she did her first words were "Mom, I am so sorry but the doctors said I have less than a year to live and there is nothing more they can do. I am so sorry mom, please forgive me, I tried to fight I really did... I didn't mean to let you down"

When she said those words I had never in my life felt so bad for what I said... God forgive me that she felt like she had to #ing apologize to me for dying! She didn't let me down! I could never be more proud of her... ever... no matter what...

so maybe it is wrong to say fight to a cancer patient too! Maybe it is very wrong... damn it

reply to post by Logos23


I don't think you are being selfish at all.

In fact, I think its a natural thing to be angry because of the things the cancer robbed her of. She won't really miss abilities that she has never had but you know about what could have been, and I can see how it would be infuriating for you.

I think it's awesome that she survived and I really hope she will stay in remission and live a full life.

Thank you for the sincere words, I'm glad you found this thread to be a helpful one

And thanks for the hugs I'll take all those I can get

reply to post by OpinionatedB

So when my daughter got cancer, I reminded her of myself... fight like hell I said... do this for your children... told her if I can do what I did then she can make it through the chemo and radiation... told her she would get better someday, that her hell was temporary and that I would be there every step of the way and she could cry and vent and rant all she needed... but fight for those kids she must!

Your daughter sounds very lucky to have a Dad like you to encourage her and be there for her. She had to have known that and appreciated it on some level.

Do you know my dad still has not even acknowledged to me that I have cancer? Whenever my parents are over and we're sitting at the table in the kitchen, he always talks about the weather, or SEC college ball, or Obama, or hunting, or anything at all including many awkward silences. I know he is doing it because he never expected to outlive one of his kids and he just does'nt know how to handle it so he ignores it. But still, an encouraging word can be a powerful one. In fact there were many nights at the hospital where I made my wife go outside the room because I could'nt take her crying anymore. I felt like she did'nt believe I was going to get any better (and against all odds I somehow did) when I absolutely KNEW that I was. Even now I feel like I have to be strong for her and the rest of my family and it can be draining.

When she said those words I had never in my life felt so bad for what I said... God forgive me that she felt like she had to #ing apologize to me for dying! She didn't let me down! I could never be more proud of her... ever... no matter what...

I am sure she knows that you're proud of her and and was not really apologizing to you but to herself more for dying. So don't beat yourself up about it too much. You were only giving her the advice that worked for you, that's what dad's are supposed to do right? I'm very sorry for your loss.

Cancerwarrior
reply to post by OpinionatedB

 

So when my daughter got cancer, I reminded her of myself... fight like hell I said... do this for your children... told her if I can do what I did then she can make it through the chemo and radiation... told her she would get better someday, that her hell was temporary and that I would be there every step of the way and she could cry and vent and rant all she needed... but fight for those kids she must!

Your daughter sounds very lucky to have a Dad like you to encourage her and be there for her. She had to have known that and appreciated it on some level.

Do you know my dad still has not even acknowledged to me that I have cancer? Whenever my parents are over and we're sitting at the table in the kitchen, he always talks about the weather, or SEC college ball, or Obama, or hunting, or anything at all including many awkward silences. I know he is doing it because he never expected to outlive one of his kids and he just does'nt know how to handle it so he ignores it. But still, an encouraging word can be a powerful one. In fact there were many nights at the hospital where I made my wife go outside the room because I could'nt take her crying anymore. I felt like she did'nt believe I was going to get any better (and against all odds I somehow did) when I absolutely KNEW that I was. Even now I feel like I have to be strong for her and the rest of my family and it can be draining.

When she said those words I had never in my life felt so bad for what I said... God forgive me that she felt like she had to #ing apologize to me for dying! She didn't let me down! I could never be more proud of her... ever... no matter what...

I am sure she knows that you're proud of her and and was not really apologizing to you but to herself more for dying. So don't beat yourself up about it too much. You were only giving her the advice that worked for you, that's what dad's are supposed to do right? I'm very sorry for your loss.

edit on 14-10-2013 by Cancerwarrior because: (no reason given)

Actually... I am a mom... but that is ok, you had no way of knowing!

They crying, yeah... that WOULD be draining! That is the one thing I have refused to do... to let her know how badly it kills me to see her so sick, and to be unable to be of any help outside of just being there and supportive... she has enough on her plate... didn't need an overly emotional support system added in! I had to be HER rock.... although I believe she still thinks she has to be mine, she knows its hard because she has babies too....

The only time she ever knew I cried was when she told me there was nothing more to be done and we had the I am dying talk, and then we spoke about God and how much He loves her and that she was going to heaven and it was all going to be just fine now... But even in the tears I smiled, because her hell will finally be over... and that is sometimes a blessing too!

Her father? Well her natural father does not even know she has cancer... I am going to have to find him for her, per her request in a few months so she can talk to him before she dies... she has made this request...

My husband and I have not yet been married a year... but he is great with her and talks to her about anything she chooses, he is a great listener although I believe he is one in a million... most men arent that good about just listening and being supportive, I think there is something about testosterone which causes that but things like this just seem more difficult for men.. so do not be too upset with your dad... I am certain he loves you so much, and if you were to die he would probably take it harder than anyone you know....

My daughter is still with us for a little longer, although no one knows at this point how much longer she can hold on.... and to be honest I think if she can make it through writing all the letters to her children then her time can be over anytime she chooses to give up...

I wish for you the very best.... and I pray for the best possible outcome for you! Stay strong when you feel like you can, and cry and rant and vent and be as pissed as you want to be the rest of the time! Take care of yourself first and foremost... right now... you get to be #1 .... the rest of us can manage just fine!

All my love

reply to post by OpinionatedB
[moreis

don't keep beating yourself up over this, you did the best you could at the time, can't ask for more. Cancer sucks...for the patient, the family, the friends.....

reply to post by Cancerwarrior


Thank you for sharing.
Definitely a touchy subject and I truly appreciate the insight. I am absolutely shocked by the callousness and presumptiveness of some of the comments you shared.
I wish you strength and warmth from those who love you during this battle.