Breast cancer is (still) not a Facebook game

October 4th, 2013 § 86 comments

IMG_7313Once again Facebook games about breast cancer are making the rounds now that it is October. I posted this last year and got some flack from people who thought anything that “raised awareness” about breast cancer was good and couldn’t understand why I am critical of these messages.

My point is that this isn’t awareness.

There probably isn’t anyone on Facebook who doesn’t know that breast cancer exists. But there certainly is a lot of myth-busting to be done. This is not how to do it. Topics that do need attention include male breast cancer, the underfunding of metastatic research (30% of people with breast cancer will eventually have metastases yet less than 5% of breast cancer funding overall goes to metastatic research), the fact that for many breast cancers 5 years in remission does not mean you’re free from risk of recurrence, not all breast cancer presents with a lump (inflammatory breast cancer)… the list goes on and on.

There’s a lot of work to be done educating. Education is awareness, these Facebook posts are not.

A friend asked me, “What can I do to help? I can’t donate money to your research fund but would like some ideas on things I could do instead.” What a great question. Rather than post these messages on your Facebook page here are a few easy ideas:

1. Make sure you are properly vaccinated from vaccine-preventable illnesses. This includes your family (kids and your parents if applicable), friends, and anyone else you can get involved (nag). Boosters like those for pertussis are very important. Get your annual flu shot. People over the age of 65 and some others at high risk should also talk to doctors about the pneumonia vaccine.

2. If eligible, donate blood and platelets. These products are needed by cancer patients constantly.

3. If eligible, get tested to be a bone marrow donor. Go to BeTheMatch.com to see the requirements. The initial registry just requires a cheek swab. It’s easy as can be.

4. Read blogs/follow tweets by people living with cancer. I think understanding the day to day lives of those of us living with it is a great way to truly become more aware. It’s one of the reasons I spend so much time writing here. I try to bring you the science, the experience, the thoughts of a mother trying to cope with raising a family and managing an terminal diagnosis.

Now on to the Facebook posts… here is a slightly modified version of the post from last year. You can go back to the original if you want to see comments made then.

……………………………

I don’t usually rant, but something has me steaming. Today the following exact message appeared in my Facebook inbox:

So here is the time of year again when we try to raise awareness for breast cancer through a game. It’s very easy and I would like all of you to participate. Two years ago we had to write the color of our underwear on our wall. Men wondered for days at what was going on with random colors on our walls. This year we make references to your love life status. Do not answer to this message just post the corresponding word on your wall AND send this message privately to all the girls in your contact list!!!!!! BLUEBERRY = single; PINEAPPLE = it’s complicated; RASPBERRY = I can’t / don’t want to commit; APPLE= engaged; CHERRY= in a relationship; BANANA=married; AVOCADO= I’m the better half; STRAWBERRY= can’t find Mr. Right; LEMON = want to be single RAISIN = want to get married to my partner. Last time the underwear game was mentioned on tv, let’s see if we get there with this one !!!!!Copy and paste this message into a new one and send to all your girly friends and update your status with your answer. DO NOT RESPOND TO THIS CONVO, just leave and participate.

One version I received yesterday says this:

Hello Ladies, Without replying to this message, put a heart on your wall; no comment, just a heart. Next, post a heart on the wall of the person who sent you this message. Then send this message to your women friends, only women. If anyone asks you why you have so many hearts on your wall, don’t tell them. This is only for women, because this is breast cancer research week. One small act of solidarity between women. PS to type a heart, first type < then 3 It will turn into a heart as soon as you post.

………………………

I’m going to keep my reaction short. I’m hoping writing something down like this will allow people who are as infuriated as I am with these silly requests to have something to react with.

First, I give you permission to ignore this crap. Better yet, write back to the people who have shared it. Let’s do some real awareness here.

The above instructions are not awareness. This is offensive. Breast cancer is not a joke, awareness does not come from sharing the color of your underwear or your marital status (the whole “tee-hee, wink-wink” attitude adds to my disgust). Even if it ended up on TV, that still would not be educating people about breast cancer they didn’t know before. All it does is show the world that lots of people are willing to post silly things as their status updates.

Let’s do a piece of education right here. The status update says “only send this to your girly friends.” Men get breast cancer too. Men are also the husbands, fathers, sons, brothers, and some of the friends, coworkers, nurses, and doctors who care for and are left grieving for people (men and women) who die of breast cancer. We should not exclude them from ANY discussion of cancer.

Just because it says it’s about breast cancer awareness doesn’t mean you have to agree. Go ahead. Ignore it. Or write back and tell them why you don’t want to be included in these things anymore. Another blogger, Susan Niebur, wrote about her take here. She was an astrophysicist, by the way. She died of metastatic breast cancer.

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the I’ll bet most of my friends won’t share this post attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Education underlies awareness. To even call something a game and honestly believe it’s doing anything to help any aspect of this disease is delusional.

And why would awareness be correlated with something being done secretly?

I think that those of us who have had breast cancer have an obligation to speak out if we disagree with these posts. People look to us to see how we react. If we not only read these updates but share them, it does constitute endorsement. It says we agree. It says it’s okay to think of breast cancer awareness this way.

I say: count me out of these Facebook games.
I have stage 4 breast cancer and it is no game to me.

 

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§ 86 Responses to Breast cancer is (still) not a Facebook game"

  • Rebecca says:

    Can I say “Amen!” Lisa? I know you aren’t religious, but THANK YOU! I am going to share your blog on FB, and I often do. Those games drive me up a wall, right up there with all the stupid stuff that people post without checking Snopes first. And yes, absolutely men get this cancer too. Anything that is “women only” in general puts a bug in me because aside from child birth, menstruation, menopause, and breastfeeding there is very little that a woman can experience that men don’t.

    • Claire says:

      WOW ladies… Lisa and everyone else here,… is showing a lot of HATE. u are angry about smth so little and small, and yeah maybe it did turn into a game for some and most do it because they see breast cancer as a very serious medical condition just like any other cancer. My mother has breast cancer and my cousin too and yet I will still participate in those FB things that u call “silly games”. reality is that with any other crap that I get on FB that others are trying to get me to do or participate in I just delete it straight away but with this one in particular I feel like I am taking part in smth that was meant to be GOOD> it is with GOOD intentions that people do what they do. it is in no way malicious or there to mock anyone that has cancer.
      Of course u can say people should donate blood and bone marrow etc but fact is the majority of people are SMOKERS or take drugs or drink alcohol on a regular basis or have the most unhealthy diet and guess what that all affects the blood / bone marrow people donate. so if people think they are doing some sort of good but doing what they do then why get angry about it ? why show so much hate? we understand some of you have breast cancer but come on dont take it out on people that are trying to do some good. u dont just get cancer… something in ur life has caused u to get it. yeah could be genetics of course… but whatever u did prior to having an unfortunate condition was on some level unhealthy. I am sorry for being so harsh but ladies seriously stop with the hate , it does no good at all. have an opinion of course but to try and persuade everyone to get so angry with everyone else … WOW is all i can say. lets all be sad and angry .

      • Caroline says:

        Some very valid opinions here… However, I’m with you Claire….

        2 of my close family members have cancerous tumours and we all still try to have fun! Of course cancer is serious, OR COURSE cancer has many facets that need more research and more support, but let’s not get this all out of proportion here – nobody is being forced to join in, if you don’t want to, don’t join in, it’s easy!

        There are plenty of us in the world who don’t see it as cheapening or undermining cancer or those suffering with it – it is not making any fun of those things, it is just a bit of fun in itself that keeps these issues ‘fresh’ in the minds of everybody and surely that can’t be a bad thing?!

        As for the ‘education’…. they don’t all refer just to breast cancer, they don’t all state ‘girlie friends’ and they don’t HAVE to be responded to at all! I never take any offence if people want to ignore my posts, that is their prerogative – I do not post to offend and I do not post to make anyone feel guilty, if they feel that, it’s their problem, not mine.

        • Yoyo says:

          Having FUN with CANCER?

          Jesus christ. This is the BEGINNING of cancer.

          I visited my father today, who is laying dying in the hospital. He can barely walk and speak and is in constant pain. He is but a speck of the person he was and everything he ever was existed inside a lifeless husk that still hangs on for one more minute of life.

          Tell me again how much you are laughing when your close family members reach this point. Maybe when you are your lowest point, one of your friends will post a “Make-up free selfie for Canzer omg!!!1″

          This disease will destroy you.

      • Lisa says:

        “whatever u did prior to having an unfortunate condition was on some level unhealthy”? OMG!!! This is blaming the author for her causing her own cancer! How offensive. And if everybody’s so concerned about cancer patients being angered or offended by people wanting to “do something good”, then you are missing the point. People “wanting to do good” for cancer patients are actually OFFENDING cancer patients–and they are tlling us that! The patients are not appreciating the so-called “good” that is being done on their behalf. So, call me crazy, but if the intended recipient of all this “goodness” has taken the time to tell you that the “goodness” is actually causing harm, anger, and distress, you don’t then proceed to argue with her about why she’s being “hateful” and “needs to lighten up”. No, my friends. What you do is that you STOP DOING WHATEVER YOU ARE DOING THAT IS HURTFUL TO THE PEOPLE WITH THIS DISEASE!!!! WTH is WRONG with people?

  • Megan says:

    Well said Lisa! In a way this kind of cheapens the experience with disease. (I don’t have breast cancer but I do have a chronic illness). You are so right, it’s not a game, it’s a human life. Another thing that gets me, Facebook has made it so easy for people to take two seconds to post something, or click the Like button, or share a cute graphic, and feel like they’ve somehow contributed or supported the cause…when, just as you mentioned, this doesn’t actually help with awareness or support. Thanks for posting this.

  • Hope says:

    Shortly after my breast cancer diagnosis a coworker showed me a calendar she had bought in support of breast cancer awareness. The photos were of men stripped down to show their abs and the like. I told her that the calendar was just as bad as the ones of women objectifying them. She was shocked at my response and said, “But it’s for breast cancer.” as if that made it okay and should make it okay for me to support. I repeated that it was objectifying the men and I found that just as offensive as if it was a girlie calendar.

  • Lisa, wow you are SO right. It’s the triteness with which breast cancer is treated, whether it’s an end-cap of pink-labeled Campbell’s soup or a Facebook equivalent of a chain letter that diminishes the seriousness of this and other medical conditions.

    My MIL has BRAC1, lost her mother at a young age to ovarian cancer, and has fought her own breast cancer battle. I worry for my husband and for my daughter’s carrier status and keep asking my husband to get the blood test. I lost my father to a different form of cancer (esophageal which is almost always fatal and almost never found before stage 3 or 4) where there is no awareness. I’d never heard about this type of cancer until it had my father – really he never had it, it was so advanced and fast the journey was quite brief. I also have a little boy with a single ventricle heart whose had several heart surgeries, yet I didn’t even know babies could have heart problems until I was pregnant with one and had to decide whether or not to keep my pregnancy. These struggles are happening in silence with no awareness everywhere, but I would still NOT want the type of “awareness” hype that breast cancer gets for those other diseases.

    My point in sharing is that I cannot imagine anyone getting “cutsie” about my father’s tube feedings or colostomy bag. People cannot even stand to hear about what my son has endured to survive in infancy, so the idea of their pain being exploited to help sell products or play games is shocking and souring. Yet that’s exactly what happens during the pink month of October – how could you not be angry about that? I’m angry about it.

    I would never want my son exploited the way that women are being exploited and demeaned with an awareness campaign that feels more like a party than an education. I don’t understand what it is about breast cancer that makes the public think that “awareness” is an end game; it’s a just a beginning. It’s definitely time to take the next step and improve stage 4 research.

    Thank you for blogging about this. I’ve been on Be the Match for years and a blood donor for decades. While it’s not a Breast Cancer related list, I’m also a registered organ donor because most likely my son will need a heart transplant someday, and liver and lung cancer patients can benefit from this life-saving act of generosity. There are so many ways to give to health-related and public safety issues that are not financial. Thank you for raising the stakes and making those options public and personal. Maybe that’s the key, keep cancer personal when it goes public and don’t forget that there’s a human being and a harrowing story behind each pink ribbon. Thanks for sharing your humanity – it does make a difference.

  • Carolyn says:

    Thank you for encouraging to help in ways that are truly meaningful.

  • Tami Boehmer says:

    You nailed it! I have friends who do this on Facebook and I’ve said something about it and they get all offended. It’s just plain stupid and diminishes what we all are dealing with. I know they don’t mean anything about it, but please! Thanks for the great tips of what to do instead. I think every complaint should be followed by a suggested solution.

    • Nancy says:

      This is the perfect response and I could not agree more. I am one of the “lucky” ones whose breast cancer was caught early, however, even with mastectomy and chemotherapy, I am aware that I still might be one of the 30% to develop mets. I also hate these games and the silly slogans like “Save A Life, Grope Your Wife.” My lump was so deep it was not discovered by me during self exams, or my gyn during his exams. I also wrote a post about Pinktober and how the whole campaign pretty much ignores the people with mets.
      http://www.breastcancerbattlescars.net/2013/10/pink-isnt-always-pretty.html

  • amelia says:

    dear folks. I am soooooo thrilled to know that there are peoplw who feel exactly the way I do. Thankyou Lisa!! I have stage 4 and extensive metastases to bones. It is no joke to me. I do not see myself as a survivor as I am still in the fight. I did not overcome the disease. People get annoyed when I tell them the truth. They do not want to hear that ultimately it will claim my life if nothing else does. Believe me, it is no walk in the park. Why do people all of a sudden regard themselves as experts in giving me all sorts of advise? I did all I could to understand my disease. Sorry if I sound harsh. People make me sooo angry. Nothing has been done to educate people about cancer. All you hear is I am cancer free and I am a survivor. Everyone here is wearing pink a d it’s this rally and that inisiative. And now we’ve done our bit and soothed our minds. We will never get cancer. How ignorant can people be? This disease is a killer!!

  • Thank you for giving me something concrete and articulate to share with others.

  • Julie Cristal says:

    What do you think about the NFL this week and their breast cancer awareness initiative? Referees and throwing pink flags, officials wearing pink ribbons, etc.

  • Thank you so very much for writing about this. This is the kind of awareness that needs to be circulated! When I see something on Facebook that I think is inappropriate, I often comment my beliefs. But, not all of the time. Many times I just let it pass. However, you have inspired me to make my voice heard more consistently.

  • jenn says:

    Preach. With total respect.

  • Erin Pletcher says:

    I would like to comment on this as an outsider looking in. I am familiar with metastatic breast cancer, as my mom died from the disease ten years ago. She had breast cancer on and off for 11 years and passed away when she was only 42. I guess I can see how these seemingly insignificant acts such as FB statuses and the color pink could be upsetting, but to me, it makes me remember my mom. You see, we used to walk in the Race for the Cure every year, and I, being very young, remember my mom all dressed in Pink as a symbol of her surviving, and fighting. I associate Pink with Breast Cancer because, to me, it signifies a fight within someone to carry on, and to maintain his/her strength in the midst of a tragedy. I know that most likely, this is not how many people see it, and this is why I do not play the FB status games, but just so you all know, I have seen this disease at it’s worst, and to me, “Pink” helps me remember my mom, and the battle that she fought, and that all of you are fighting.

  • Beth Smith says:

    Thank you Lisa ~ just this morning I was considering wearing black for the month of October! It’s is very comforting to know that other people feel this way too.

  • Sharon Wachsler says:

    Hi Lisa.
    I responded to a Facebook game post a couple of months ago by quoting some of your post from last year, and I didn’t think my point was really understood. (I think they thought I was saying they were making fun of people with BC? I’m not really sure. That is not at all what I thought!) I will try posting this post of yours above on FB, and maybe it will make more sense and be better received when not in response to a game….
    I don’t understand suggestion number one to get vaccinated. Would you be willing to share how this supports people with cancer? Is it that if you have cancer or are undergoing treatment, you are immune compromised, so you are thinking that fewer people spreading germs will be better for those with cancer?
    I don’t think you are saying that the flu or other vaccine-related illnesses cause cancer in any way??

    • Lisa Bonchek Adams says:

      Contagious illness can be deadly not only to healthy people but also (especially) to immunocompromised ones.

      Everyone should be vaccinated for their own benefit but yes because some are extra susceptible and some cannot get vaccines depending on their treatments. Herd immunity is real.

      Minimizing contact with those who are sick is important and you can help others by getting all vaccines including flu shots.

    • Lisa Bonchek Adams says:

      HPV is one communicable one that does cause cancer. And Gardisil shots are available to prevent some strains of HPV.

  • Linda Given says:

    Funny – I was just on Facebook and Franz Kafka was recommended under “Entertainment pages You might Like.” They are completely clueless about almost everything in my humble opinion and I really really appreciate your post on their stupid in everyway “game”. Plus, as you rightly point out – “only send this to your girly friends” – belch and #%@&!3!1

  • AmyG35 says:

    Lisa,
    Though you haven’t heard from me in awhile, I continue to follow your blog and admire your outspoken views. I am not on Facebook so was unaware of these “games” but understand how offensive the are. On another note, I am being optimistically hopeful for you concerning the new trial protocols you hope to be starting soon. I think of you every day and am educated and inspired by you. We share a love of beautiful flower gardens and I enjoy your photos of your garden. Got me to chronicle my little garden this year. It is my bit of beauty each day.

  • Andrea says:

    You don’t know me, but I’ve been following your blog for awhile. I love this post. I lost my Mom to breast cancer last year. Prior to that, I was one of the people following the crowd on Facebook and feeling good about spreading awareness. Reality hit hard and I wish nobody had to feel that. Breast cancer doesn’t discriminate and yearly mammograms don’t guarantee anything. We need a cure for stage IV cancer. Early detection is important, but a cure is more important. Best of luck to you. I enjoy reading your blog :)

  • Paula says:

    Erin Pletcher: If “pink” helps you remember your beloved mom, pink is beautiful; keep remembering. I have never liked the Facebook games and trite posts or any of the pink ribbons. But if any of those things offered me comfort when remembering my dad (who died of pancreatic cancer), I would cherish them. You have been there, seen it, watched it, and been affected by it forever. The people whom I think Lisa is referring to are those who believe that gimmicky Facebook posts and colorful symbols are somehow helping breast cancer patients “beat” the disease. Misinformation and denial are rampant among people who haven’t experienced it first-hand. How wonderful it would be if people could understand without having to experience it. That’s where education comes in. But you already have that. You know. From now on, whenever I see “pink,” I will think of your mother and your love for her. That love has much greater meaning than the games and rhetoric so often displayed in attempts to raise cancer awareness.

  • Jessica Humston says:

    As a women with stage 4 cancer, I couldn’t agree more. I am dying and the smiles won’t come. My children are going to be without a mother and it infuriates me to no end that this is “glitzed” up. Isn’t it ironic that most stage 4 women detest pink month? Doesn’t that say something?

    • Jenny says:

      I didn’t realize that other women with breast cancer felt this way. I had the wimpy kind abd had a mastectomy four years ago. But I also have four kids abd it was and is scary. Your post is from October. This had been a cold winter but I hope you have found strength in your childtens smiles love life abd nature around you. From day one I have been confused about the ribbons abd the pink and these fb games are the pinnacle of my disgust about how the masses appear more and more like a flock of mindless sheep being led around by marketing gimmicks. Hot pink was my favorite color before cancer and I always made sure to point that out when comments were made. Breast cancer isn’t the Mickey Mouse club and we want our badge abd mouse ears. I guess we should all start by letting people know the ribbons pink fb games are not ways we choose to gaming strength for out battle or ways we choose to celebrate recovery. Being present, loving yourself, connecting with nature and people to gain stength was my cure. I’m sending you positive healing thoughts. Hug.

  • […] Breast cancer is (still) not a Facebook game | Lisa Bonchek Adams  A justified rant. […]

  • […] Breast cancer is (still) not a Facebook game | Lisa Bonchek Adams  A justified rant. […]

  • Amy says:

    I think what makes me crazy about Pinktober is that it’s for Breast Cancer Awareness. Uhm, who isn’t aware of Breast Cancer? But people don’t understand anything about it, except you get your breasts cut off, go bald, and then you get better and wear pink tutus and walk in the Race for the Cure. That’s about all they know. Time and money would be better spent educating people about it, rather than making them aware of something they already are aware of. At some point, it will become background noise and people won’t even notice it’s Pinktober.

  • Bonnie says:

    Thank you for putting this out there as it is what many people have been thinking. My mother is a breast cancer survivor and my two children are both pediatric kidney cancer survivors. Cancer has hit my family very hard and sometimes I feel like if I don’t acknowledge it on FB then people will think it is not on my mind when in fact it is always on my mind. Thank you thank you !! Please accept my huge hugs and prayers to everyone touched by cancer.

  • Lauren Ryan says:

    I’m a breast cancer survivor who is not offended by breast cancer month. If NFL players wearing pink causes one woman to be reminded of breast cancer and she checks herself and discovers she has it, awareness is not a bad thing. If it reminds people to give some money for research because of that neighbour who died of the disease, it’s not a bad thing. I guess I feel if awareness leads to action, it’s not a bad thing.

    As for the Facebook games, yes I agree they’re silly but at the risk of offending others, I have to admit they don’t offend me. They’re silly but not enough of an issue (I’m speaking for myself) to get worked up over. Would I feel different if I was metastatic? I don’t know.

    • Mary says:

      I agree Lauren. These FB games may be silly but like u said if it reminds just one woman to check herself then where is the harm? It does raise awareness because it makes people stop and think and as mothers and wives, we so often put our family’s health above our own and forget what we need to do. I am not belittling all the cancer sufferers pain but why do they all need to be so angry with everyone else?

  • Mary says:

    Well said!
    When I first got my diagnosis, I notified my niece in another country via facebook using a private message. Within one day, ads with pictures of cancer kids, City of Hope, etc. started showing up. It made me nauseous when I realized that facebook actually used cancer as a tagword to target advertising towards me. Sadly, now the users are making cancer a game??
    People should learn from my little 10 yo neighbor, who, without my asking, swept up all the leaves in my front yard today. I’ve been too exhausted to do it, and have been getting the stink-eye from neighbors the past couple weeks because of the buildup. This little angel just took it upon herself to do it (she doesn’t know about the cancer, just that I’ve been feeling a little sick lately). And when I looked out later, there was a big heart in chalk on my sidewalk.
    I’ll tell you, as hard as this month is for people with breast cancer (at least it is for me with the constant reminders), this wonderful little act of kindness has given me strength to get through to November. I wish one of these for every person dealing with breast cancer this month!

  • Mary Shust says:

    As a breast cancer survivor I don’t find this offensive at all. You people are way too serious, keeping a good sense of humor is good for the immune system!!

    • Beth Smith says:

      Mary,
      I’m sure it must be comforting to believe you are a “survivor”. The term means that you have won. I don’t know what your history or the staging of your cancer, but you do us a disservice by your response. You can not tell us what to think or feel until you have been labeled “the doomed”, “incurable” and have only the hope of extending your life by a few years. It is so disrespectful that I had to respond.
      We do have senses of humor ~ when appropriate. We laugh with our families, play with our children and cry in the night for what is to come.
      We are the voices of stage 4, metastatic breast cancer. There are no survivors.

      • Jo Milner says:

        Beth, out if all the responses on here that made me cry, the quiet dignity, resolve and acceptance in those few words astounds me. I hate the share this with women games, I have a chronic illness that could kill me at any point but also may not, it took a lot for me to accept that. I cannot possibly comment on how someone who knows they are going to die in such a dreadful way should or shouldn’t feel and neither should anyone else. I didn’t play these games before, now I know how they make those of you who are incurable feel I will share this everytime I see these statuses. No one has the right to make you feel worse by participating in what is a silly game and I don’t for a second believe it makes people check themselves, it’s even sillier that it’s ‘for women’ only ignoring men as seems only women’s breasts matter. Yes survivors have something to crow about and I’m so glad they won but they shouldn’t trivialise what others are going through just because they did.

        • Beth says:

          Thank you Jo, this comment came on a day when I needed it somehow. Just knowing someone understands is so comforting.

  • This post is so inspiring, Lisa! Thank you for saying what I felt/feel every time I see “cutesy” advertisements and products that try to package cancer as something fun and trendy. I’m a filmmaker and writer and I’ve written a story about my person experience of caring for my mother during her treatment. What has motivated me to make it is that for all the “awareness-raising” that is attempted, very little of it gets to the hard complexities of living with cancer. I hope to do some of that true awareness you talk about through my movie. Here is a short video and info about it: http://www.kickstarter.com/projects/228483682/blue-balloons

    Thanks!

  • […] found a great article written about a women with Stage 4 Breast Cancer. She is not a fan of people posting things on […]

  • Karla says:

    GEEEZ….lighten up people! This came on my FB page today so I passed it on. What did it make me think of when I seen it? IT REMINDED ME I WAS PAST DUE FOR MY ANNUAL Mammogram!!
    I think some people just want a reason to b pissed Off

    • I honor and respect what Lisa has to say because:

      1) she’s educated on breast cancer — far more than many of us — and is dealing with it daily

      2) I completely agree. I’ve never participated in these ‘wink-wink’ types of silly reindeer games (‘Like if you love your children.’ Really.) and this is no different.

      3) I’m thrilled you remembered to get you mammogram, but maybe you would have remembered by watching NFL players running around in pink or someone mentioning it, or the millions of people doing the various pink things so prevalent this month

      4) Lisa is probably too polite to respond to your comment, ‘I think some people just want a reason to be pissed off,’ but I’m not. Your sensitivity is astounding.

      • Beth Smith says:

        Thank you Rachel for your very logical response. I also wanted to reply, but found that my responses were not near as nice as yours. I did do a little, and I stress little, research into the “awareness” factor (there is so much information on the web in October). What I see as the problem with awareness is that BILLIONS are being spent on this and some women think it is wonderful because it reminds them to get their mammograms. Don’t they have a calendar? Can’t they take responsibility for their own healthcare? Maybe it’s just me, but I think that money could be better spent.

      • Lisa Bonchek Adams says:

        Thank you. I find it hard to respond to people who tell me (and others here) to lighten up, especially if they’ve never even had personal experience with cancer, much less be able to see it through the eyes of someone with a stage 4 diagnosis. Thanks so much for your thoughtful reply.

        • Joyce says:

          The fb comments are not meant to be funny or a game but to remind people of the issue and the need for exams. Men are not “excluded” from them. If you read any of the messages the reason they are not sent to everyone is because it gets people talking about what the post is about. In past years the comments have resulted in national news coverage not only on tv but in newspapers & on the Internet. These reports include information on breast cancer & reminders of doing exams and getting check ups. The term awareness isn’t necessarily because people don’t know the disease exists but to make people aware of the need to donate to research & the need for exams, etc. Clearly no one thinks it is a joke or that its funny & it isn’t meant to be offensive.

  • Elizabeth says:

    I can understand where this post is coming from. No one knows the depth of pain and/or level of irritation such silly emails it causes stage 4 breast cancer victims other than the victims themselves. Nonetheless, the post doesn’t allow the reader to recognize that there is more gray area in this issue than what is written. That’s why in response there will be an occasional “lighten up” message. Which is understandable, because as women, don’t we have minds of our own to interpret the difference between vapid awareness campaigns and serious issues, such as the lack of funding for stage 4, facing us? Are we building walls (and yelling the frustrations and fears through them) between those that have cancer and those that don’t, or don’t “get it” or even with those that overcame? Are we alienating those who love or support us but may not understand the dire situation completely? I don’t know the answers to these questions. But what I do know is that we all need each other in this fight (those who want to join, or those that have to). And what I have learned over the years is that channeling all the passion and energy into understanding others – even when we don’t agree with them – is sometimes a better use of energy. Better yet, let’s figure out a way to promote all the great foundations out there, without gazillion dollar marketing budgets, that channel a large portion of their resources towards stage 4 breast cancer research and support. Warmest Regards to all, Elizabeth

  • miss m traveller says:

    I am not THAT aware of “breast cancer”.
    My mum had it, my friends mum had it. Friend have died from it.
    I don’t even usually think about it now ..except for when people ‘promote’ it, via facebook ‘post this idea / joke status’ or pink ribbon time.

    I have lived through the death of loved ones by cancer.
    Having said that, I don’t agree with this blog – life is more than a game, I agree, but to some, life IS a game. Yes, cancer of any kind is NO joke, and neither is death by any means. Life is a ride, enjoy it or not – it happens… cancer.

    Some folks will never even think about breast cancer, or any kind of cancer for that matter. Or the care and time it takes in guiding someone through the ALL the stages of a cancer.
    If you have any ‘stage’ of cancer, imagine having “stage death”. It is not pretty and you ARE dead. Those who love you are not going to be happy and they will be very sad.
    If some “silly” campaign sheds a little teeny tiny light, shows a hole in the veneer, reveals a stain that could become part of life ..and death, then I accept it, I rejoice in it. It does not mean I need to get involved, doesn’t mean those who are ‘trying’ are stupid and ought to be condemned.
    *Someone will take it to heart, *someone will recognize it for what it is, likely not everyone at once and that is their individual journey. They have theirs. I have mine. You have yours.
    Good luck, peace be with you.

  • […] are apparently somehow raising awareness of breast cancer. I wasn’t going to blog about it as this lady wrote a great post on the subject, but this morning I am feeling the need to throw my tuppence […]

  • […] post originally appeared at Lisa’s blog. You can follow […]

  • Well said, my lovely wifey has terminal cancer and these ‘facebook activists’ don’t know lucky they are to me messing around with this when others spend hours waiting in hospitals and receiving all sorts of unpleasant treatments. Hope you are well in the sense that you are not in discomfort and are enjoying every moment; living a more enriched life than many others around us. Best

  • Sas says:

    Facebook games maybe silly but if one person male or female checks themselves as a result then they are not so bad and do not need to be vilified in this manner. The tone of this blog is patronising and angry even bitter. My best friend is a oncologist specialising in breast cancer at a renowned centre for research and treatment of breast cancer. She tells me that in 20 years she had been practising she has seen a year on year rise in earlier detection rates and similarly treats younger patients in the earlier stages of the disease. She tells me that she is more often than not told by her patients it was because of a campaign they checked themselves. I therefore absolutely do not agree that everyone on Facebook has awareness of breast cancer. I think there are varying degrees of awareness. The majority of Facebook users are young people in their teens and twenties. Not necessarily self aware women in their thirties. I believe our teenage sons and daughters need to be made aware and these games are a means of reaching them as much as are the fun runs and the pink ribbons. I am sorry so many of you are living with disease but please stop this preaching. Embarrassing your co workers offending your friends by expressing your horror at these games does not help anyone. And as I said earlier if the games mean that one person checks themselves or remembers that mammogram appointment or talks to their child parent or friend about it then bloody great!

    • Beth Smith says:

      Sas,

      You are missing the point entirely. We are all about raising awareness, and if you go back and read Lisa’s post again, I think you might see that there is a lot more that needs to be done. Awareness in the beginning was a good thing, but it is not enough to just remind women to check themselves. Awareness is the fact that even if you are reminded, and even if you catch it early, it doesn’t change the fact that YOU HAVE CANCER. It doesn’t change the fact that we need to start changing the shift from awareness to prevention and cure. It is about so much more than just this “game”.
      The fact that women are catching it early does not mean that they will be cured. It still can come back.
      The fact is that other cancers are having better success rates at a cure than breast cancer.
      The fact is that BILLIONS of dollars are being spent on awareness that is not really helping anyone except the people running these organizations and the corporations with their “pink” products in October. Most of that money goes to their bottom line and not to research. Yes, some are doing good work, but the fact is that people are not aware of which ones.
      I am extremely offended that you do not think we have a right to our opinions. Until you have walked in our shoes, YOU do not have that right.

  • I agree to you not just for article’s title but also the things that you discussed here. I know that people are not much aware as they should be, because only those are aware who have cancer and those who fought with cancer. The people who are not aware of that they just share for getting popular not by intention. But all people must be aware of the things that they can have breast cancer too. Thanks for sharing

  • Carol Amdrews says:

    Amen!

  • Patricia says:

    Presented at stage 4, I have had people tell me that if I had caught it early, I would not be in this fix!!! Funny I can show you my last 4 CLEAR Mamo’s–dense tissue is something they are not educating anyone on. Back in Sept I had someone send a Facebook message to get ready for PINKTOBER—I responded with the plea for everyone to go to any women’s clinic or any oncologist office and to make a real difference in someone’s life–ask the receptionist to apply whatever money they were willing to waste on PINK labeled product to someone’s bill or co-pay—to take the corporate greed out of the picture and make them wonder why this PINKTOBER was not as profitable as they hoped

  • […] Facebook memes which, while well-intentioned are irritating, not to say downright meaningless. Lisa Adams has some good advice for those who want to engage meaningfully at this time of year with breast […]

  • Just some guy... says:

    Completely on board with you Lisa. Those Facebook game posts are idiotic. Whoever came up with this idea needs to be sacked.

    Maybe they should run one like this… “Everyone that hates those Facebook breast cancer chain-posts please donate one dollar to fighting breast cancer. If we raise 10 million dollars we promise not to do it again.”

    I’m betting they’d hit the goal.

  • anna says:

    I am a teenager and those silly things and game like the pink month made me do monthly checks on my breasts and be aware of cancer. Teenagers get involve if a campain is catchy and design like an advert, and that is so important for girls to start checking their breast when still in school and be educated. For some people it works, it doesn’t matter how you spread the message as long it draws attention and people get involve, so don;t just criticise, focus your energy on doing good things and not on this superficial and meanless critic about what other people do. WHEN YOU CRITICISE THIS SO CALLED SILLY THINGS TO YOU ACTUALLY HELP ANY ONE? THIS SILLY THINGS MAY GET ATTENTION OF A TEENAGER AND SHE CAN CHECK HER BREAST OUT OF CURIOSITY AND THAT IS THE BEGINING OF AWARNESS, WHICH IS MUCH MORE THAN YOUR ARTICLE DOES!!!

    • Beth Smith says:

      Anna,
      It must be nice to be so young and naive. Believe me when I say we all here wish we could go back to those days.
      I wish you would read the post again and see that it is just not enough to say “check your breasts” and think you are doing something good. What the issue is, is that there is no true awareness about the disease being spread.
      Just for example, are you aware that most breast cancers are due to environmental causes and not genetic?
      Are you aware of the things (environmentally speaking) that can raise your risk of getting breast cancer? Things like parbens, phlylates, pesticides, and many other things that you eat, drink and use all over your body?
      Are you aware that lobular breast cancer can not be felt just by doing a breast check and you might not be aware that something is wrong until it is very progressed?
      Are you aware that, even if you are diligent in doing monthly breast checks, you can still get cancer and that cancer can kill you?
      Are you aware that even if you catch it early, and remain “free of cancer” for many years, it can still return?
      Are you aware that if it returns, you are considered “incurable” at that point?
      Are you aware of the fact that if you do everything right, eat right and do everything in your power to be healthy, you can still get cancer?
      I know you are young, and I really don’t mean to sound so doom and gloom, but all we are saying is that there is so much more to be aware of than just doing a check and making a game of it when there are thousands of women dying of this every year. We want more people to be aware, to raise their voices and help to find a cure, or even better, a way to prevent it so that YOU will never have to go through what we are. So you never have to look down at your chest and see a horrible scar where one of your beasts used to be. So you never have to see your husband, your children, your parents, break down and cry when you tell them you will be lucky to be alive in 5 years. We want so much for this not to happen to anyone else.
      Checking your breasts? Good luck with that. We all did, and we are still going to die from this.
      Truly, I wish you the best and I hope you never have to understand why we feel this way.
      Beth

  • […] hand, doesn’t like the war metaphor any more than she does pink ribbons or breast cancer awareness Facebook games and her approach to cancer treatment is not completely different from that of many other stage IV […]

  • […] hand, doesn’t like the war metaphor any more than she does pink ribbons or breast cancer awareness Facebook games and her approach to cancer treatment is not completely different from that of many other stage IV […]

  • Butterfly says:

    Thank you for raising my attention to this. I have passed this on instead of a silly heart. Posting info, This is how to save lives.

  • Meridith says:

    Having a mom who survived breast cancer, I want to say that I support ANYTHING that raises money for research, as long as no one is being injured. So if men want to strip down and show off abs, and some women want to buy their pictures, more power to them.

    Perhaps rather than rail at people who think they’re doing something good by posting hearts or cryptic messages, share them yourself – along with some cancer facts and an urging to remember to have proper screenings. (and/or have screening parties where a bunch of people go together and hang out in the waiting room talking and playing games and having fun- in the email along with the directions of what to post.)

    My mom is alive today. Perhaps because she’s got a positive attitude and proactive approach to things.

    Turn your frown (or glare) upside down and instead of being angry at something that you’re not going to change, being offended at people who (perhaps misguidedly) are trying to do something good find a way to improve it. It’s here. It’s a little weird. But apparently it’s here to stay. So let’s make it better.

    I post links to get free breast cancer screenings in my emails that I send out to women who want to post that heart. You can do that for many different types of screenings… colon cancer is another biggie where you can find free screenings in major cities.

    Instead of feeling anger (which I think is a negative emotion that can lower our immune system), make what these people are TRYING to do more valuable. Work WITH them.

    • Lisa says:

      OMG. Did you really tell a woman with Stage 4 breast cancer to “turn her frown upside down”? This is not Romper Room. She can choose to frown, be angry, be offended, or whatever the hell she wants. What a disgusting post.

  • Just a few minutes ago, I received one of those messages. I didn’t think of it as a game, just a way to support the people that I know and love that have had breast cancer. I posted a few hearts before my daughter came in said, “Mom, breast cancer awareness is in October.” So of course I was embarrassed after sending it to about 20 friends and then reading your post. In my opinion, these activities do bring about awareness. I don’t believe that people who pass those activities along intend to trivialize the disease at all. People that have not had to endure cancer feel utterly helpless when they see someone they love hurting. So posting a heart (or whatever the activity) makes them feel as if they are being supportive, even it is accomplishes nothing. I have not had breast cancer, but I have had to have additional mammograms, ultrasounds and biopsies. All of that was scary enough. I walk and raise funds for the Relay for Life every year. It may seem like a small thing to do, but AT LEAST it is some action done with the best of intention. I apologize for participating in something that is offensive to so many. I have learned my lesson.

  • Maria says:

    I just received the fb message above about the hearts and I was so torn in what to do. The person who sent it to me obviously meant no harm, but I definitely did not want to do it and I was kind of feeling bad for ignoring it. Your post is on point and I appreciate your opinion. I lost a father to prostate cancer, an aunt to breast cancer, a scare myself earlier in my 20′s and I hate the fact that most of the time it’s all about “awareness” but not more about education and solutions. I commend you on sharing your journey and I hope that you eliminate the cancer in your body!

  • Therese Daga says:

    I am not a cancer victim, but i have families that do and died. Personally, after reading most of the response..some of which i agree, and some i don’t…I FULLY UNDERSTAND everyone’s concern for awareness, whether it be Face Book’s silly games or not..BUT the fact remains “cancer awareness or advertisement” has reached thousands of the readerships to REMIND themselves have a check-up, just for the sake of checking to be sure you not a cancer victim. And sadly, if you did find out, i am SURE you will take the necessary steps to lessen the burden of being cancer stricken. There are people out there who don’t know they have cancer..and if a friend or family member reminds them to just check themselves, i am sure they’ll be appreciative and thankful for doing so. Mind you, I RESPECT everyone’s opinion, and how they react, its on them…be it negative or positive. We can’t control their feelings, attitudes or behaviors but we can respect their thoughts on this dreaded disease. One thing though, i pray for a cure to rid this disease for the common good and live a healthy life hereon. God Bless you all!

  • Jeff says:

    So here I am 6 months later finding this informative post because of a new Breast Cancer Awareness game on Facebook.

    Thank you for all of the great information you have provided. Your post is an effective follow up to the awareness that the “game” initiated.

    I am sorry if the game offends you, but it clearly works. It prompted you to create this article and for many of us to come read it, myself included.

  • Sam Cofer says:

    I am guilty of playing this FB “game” today and a FB friend posted your article. I was instantly and deeply ashamed that I participated in this, thinking it was funny. In my effort to have fun on social media, I lost focus on the bigger picture and didn’t think about those who actually fight this battle including my own family. Not to mention, I’m raising money for cancer awareness, so my actions cut me even deeper. Thank you for your reality check and one again I apologize for my ignorant actions.

  • Jennifer Connelly says:

    There is a horribly insensitive “game” going around. I am fully recovered mastectomy four years ago with reconstruction mother of four. Here is how I feel about this “game”:
    I don’t know if you saw the thread, but it is so obviously offensive..on the list of things to post on ur status for breast cancer awareness “game” was “I just used my boobs to get out of a speeding ticket,” Many many women have to say goodbye to a boob or two when they get cancer . Those who participated in the “game” are overlooking the obvious insult to those who had to get mastectomies.
    Also one option is, “I really dont know how to tell anyone. Im sick of hiding it. im gay”. Thats not funny either. Coming out is a huge challenge for many and rocks their world, foundation and relationships with their family. It causes suicides and hate crimes. This entire thread makes me want to puke. It is not out of the question that someone might post they are gay as part of this “game” and get some very unwanted retaliation. “A father from Texas killed his daughter and her girlfriend because he was disgusted with the former being a lesbian” .

    Well my contribution to breast cancer awareness month is go get your mammogram. I was diagnosed at 39 with my first ever mammogram. The thought of not being around to raise your four young children is no laughing matter.
    Since when did breast cancer become a game? Im so sick of ribbons and pink shit really. Lets get screened, lets look at our food sources, lets look at why other countries ARE NOT getting breast cancer…lets promote positive female self images that dont require using our tits to get off a speeding ticket, get a job or gain some other superficial favors.

    • Mac says:

      I was just diagnosed on 3/7/14 and I have to say that I just recieved one of the “silly” game requests and it didn’t offend me in the slightest. I believe in the power of a positive attitude and as a nurse, for someone above to suggest at some point in oir lives WE did something to cause our cancer? How ignorant. I only assume that you know the cure since you know the cause. I can also assume that you too are an Oncology nurse or have been in the past? I’m betting not. I have found that those with a positive outlook have a far better outcome and quality of life. I find so many BC patients to be so bitter. Why? It can happen to anyone. I have actually been told by surgeons to stay away from “support” boards because they breed negativity. The happy people are out enjoying their life. Negativity is toxic. Stop being bitter, we are NOT the only ones…it’s life.

  • Jenny says:

    Mac, for one (not sure if you are referring to me ) I never said we or you did anything to cause your/our BC. However some very learned people (and excuse me Im not an oncology nurse) have linked it to the newer way we cultivate corn making it toxic for our bodies. The liver can only break down so much at once and if its busy breaking down toxins in food products, it cannot break down estrogen. And I don’t see any reason why as a society we shouldn’t look at all possible contributors.
    Being positive: I was always and still am extremely positive about my diagnosis, treatment and recovery. I did great, always considered myself lucky, went right back to work and LOVE my body and myself. Mac, you’re missing the point of the FB game frustrations. They sidetrack the positivity actually and re route our brains to silliness that is not even funny in the case of the “game” I got. Trust me I am all for laughter and goofiness. Im sorry to hear you are part of the group and whatever you do to make your journey successful is what you should do. I wish you happiness, health and success!

  • Kathie says:

    My mother and several aunts died of breast cancer…having said that… I do participate in the games, becasue it does remind me it is time for a mamogram, and I hope when my friends see the silly posts they are reminded on yes it is time. YOU can be insulted if you want. Having cancer doesn’t make you scared or obviously keep you from being a fault finder. Seems like you have more to get over than breast cancer.

  • Helen Hirst says:

    Hear, hear. Couldn’t have said it better than you, Lisa. And I’ve never had any form of cancer, nor have I lost anyone close to me to cancer. Would never repost for the sake of doing nothing to raise awarenss and empathy for those who have suffered.

  • Shannon says:

    I agree with your feeling about the offensive Facebook posts. I live with a rare genetic cancer disorder, the proper medical term is actually “orphan” disease if you can believe it. I have Von Hippel Lindau syndrome, and I am embarrassed to say that I do resent the lack of awareness, research, general knowledge, etc that my Disease gets. I literally need to not only spell it to physicians, but also explain its manifestations and genetic mutations. It is something that I wish I wasn’t so aware of, and it saddens me that my family had to form a small charity in order to affect any sort of awareness, which still isn’t much. But, it is what I have, my mother gave to me, my brother has and what my grandmother died from and what my aunt is currently dying from, not to mention countless other ancestors who perished before we knew we carried this genetic disease. I do hate something being called awareness when it clearly isn’t. I once read a breast cancer survivor write that she told everyone not to donate to any organization whose sole purpose is awareness, what we need is research! And a cure! I love your writing and it does give me some comfort to read someone else’s struggles, even if it is a different cancer. Stay strong.

    Shannon

  • […] a joke. Breast cancer awareness games on Facebook are neither helpful nor funny, particularly to people who are living with that terrible disease. I don’t blame anyone for participating but I wish they would stop for a moment and ask […]

  • Jo Milner says:

    Beth, out if all the responses on here that made me cry, the quiet dignity, resolve and acceptance in those few words astounds me. I hate the share this with women games, I have a chronic illness that could kill me at any point but also may not, it took a lot for me to accept that. I cannot possibly comment on how someone who knows they are going to die in such a dreadful way should or shouldn’t feel and neither should anyone else. I didn’t play these games before, now I know how they make those of you who are incurable feel I will share this everytime I see these statuses. No one has the right to make you feel worse by participating in what is a silly game and I don’t for a second believe it makes people check themselves, it’s even sillier that it’s ‘for women’ only ignoring men as seems only women’s breasts matter. Yes survivors have something to crow about and I’m so glad they won but they shouldn’t trivialise what others are going through just because they did.

  • Lesley says:

    I just received the email you are talking about, you are saying that everyone with this insidious disease feel as you do. How would you know that? I received it from my Aunt who has stage 4 breast cancer, which just goes to show everybody does not feel the same. Your reaction is understandable and you have some very valid points but remember no two people think exactly alike. I have no idea how I would react in your situation and I can’t say that I know how you feel, but what if these silly games might make just a few people think or help or even be more aware ? Just a tiny chance? You can’t change human nature, there will always be those who laugh at funerals, joke about death and yes! play silly games but some of them also do take it past the fb sharing stage and donate, research or just reach out.

  • Beth says:

    Well, here I go again. Don’t know why I feel I have too, just do

    Lesley, No where in any of these posts does it say that all people feel this way. It says that I do, Lisa does, and countless others do. I went back and re-read the post and she is very clear on that. Yes, some do not and that’s ok. It’s their life, their feelings, and this IS America.

    Knowledge is the key to understanding, and Lisa is trying to educate people on what life is like for people like us. She helps give a to voice our fears, sorrows, and hardships. I can not even begin to tell you how she has helped me come to terms with all this. Of course that doesn’t mean ALL people will feel the same! It is how WE feel. I know it is so hard to comprehend how this feels, I could not have prior to progressing to stage 4. I wish I didn’t know how this feels.

  • […] and victims don’t. Lisa Bonchek Adams, a woman who has been fighting breast cancer for years, has written two posts that summarize my feelings of frustration at slacktivism that I am unable to eloquently […]

  • Sue says:

    I received the latest version of 2014 Breast and Prostate Cancer Awareness Game from my best friend’s son..I did answer it and posted 3 different choices not realizing the history behind this site. I would NOT have reposted anything if I known now information posted like yours. I have lost 2 siblings to cancer…my older sister and my older brother both too soon…two other family members have been touched by cancer..my mother and my younger brother.. (plus a couple of my aunts). Please continue to inform people how INSENSITIVE this game is!!!!!! Cancer is NOT a game and I am ashamed I didn’t check out about this so called game the ” 2014 Breast and Prostate Cancer Awareness Game” that people are posting on Facebook..
    ( like the Ice Bucket Challenge Game). Please continue your post.. I found it very enlightening. Thank you and God Bless.

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