Thursday, January 17, 2013

The Blame Game

As time passed from my initial diagnosis, more and more people asked me the reason for my cancer. I think they wanted an answer so it gave them something to avoid and somehow provided them with more protection from the disease. They were hoping that I said ‘Uh, well, when I was a kid I swallowed some poisonous floor cleaner and it gathered in my breast and turned into a tumour’ so they could in turn say ‘Oh, thank God I never swallowed floor cleaner and therefore will never have cancer.’ People seemed to want to be able to put their blame somewhere, so they felt less threatened by the reality of cancer and it seemed harder and harder for people to grasp the concept that my cancer is a big question mark.

Never the less, I have been told by many, many people, who don’t have any medical or oncological training, that my cancer has a cause. Some people think it was the hormones from the birth control pill, others think it was stress, others think it was the food I eat or the deodorant I used, and others have blamed it on our environment. I continue to assure them that my entire medical team is baffled but regardless of genetic testing being negative, having no family history, and being only twenty six when I was diagnosed, they feel as though they know the answer.

In the beginning, I would let this kind of thing go, or just agree with the different conclusions to the cause of my cancer but I am starting to get annoyed – pissed even – because I think this blame game that we are playing is detrimental to our health. On Facebook yesterday I saw a picture of a bald woman, obviously hooked up to chemo, with IV bags lingering everywhere with a picture of a green fruit in the forefront and it said ‘The Soursop [it is some kind of fruit] – Totally ignored by the criminally murderous pharmaceutical industry, this medicinal tropical fruit kills cancer cells up to 10, 000 times more effectively than their expensive failure called chemotherapy with no side effects.’ Are you fucking serious? This just pisses me off. This picture blames me for losing my hair, for feeling like shit for 6 months, for not having a breast anymore, for taking a year off work, for everything that comes with cancer. It’s saying that I had a choice and when I had to choose my course of survival, I chose chemotherapy; a treatment that has horrible side effects and may have left me infertile instead of a simple fruit. What an idiot! The choice is so obvious, pick the fruit you moron, you like fruit, and it's 10000 times better than chemo and the bonus? No side effects. Man, people are stupid who decide to go through chemo. (You see where I’m going with this?).

What pisses me off even more is that I know of women who have been fit their entire lives, who don’t smoke or drink and who eat organically and guess what – they got cancer. Is their cancer somehow not their fault but because I didn’t eat organically and am overweight, my cancer is my fault? I was told by a doctor who specializes in nutrition and health that at 26 years old, it is physically impossible for me to be the reason for my cancer – I have not had enough time to be the cause because in 26 years, my body cannot produce a tumour because of something that I’ve done. Wow, did that feel good to hear. It doesn’t give me a free pass to live a reckless life but it does relieve some of the guilt that I have felt about somehow causing my own cancer due to stupid shit like this Facebook post (as someone who doesn’t smoke, drinks maybe 3 drinks a month, and has a relatively healthy diet).

This soursop fruit might be wonderfully healthy and it might have cancer killing agents but I absolutely detest when people who have never had cancer preach about how they would react if they were faced with it. I fully support alternative medicine and if anything, I am envious of those who are brave enough to refuse chemo because they believe in a more natural route but to say that chemo doesn’t work or that drinking green tea will cure the aggressive cancer tumour growing at a rapid pace in my breast is morally irresponsible and ill informed. And oddly enough, in all of the research that I did on breast cancer, treatment, chemo, fertility, etc. etc. etc. I found actual data and research about how chemo works and the survival rate and yet, I didn’t come across one thing that said ‘soursop is the cure.’

When I initially read this Facebook post (along with a variety of other ones that say marijuana will cure cancer, eating sugar is a sure way to get cancer, drinking green tea is a sure way to avoid it, etc.) I was pretty angry and it led to a tweet that resulted in a number of replies that I want to share with you (keep in mind that you only have 140 characters in a tweet so grammar doesn’t really count on Twitter).

My original tweet – ‘I hate reading about how people who have never had cancer would not do chemo and would instead eat a certain fruit or drink a special tea.

Reponses

From @ChristinaNewman – ‘talking to hubby about this – I used to be that girl – refused treatment for 11 months till I realized I would die w/o treatment.’ I loved her honesty. You just don’t know how you would react unless you are faced with these decisions.

From @zapladybug ‘When I was first diagnosed *two* people told me green tea cures #breastcancer. Two. To my face. And they were sober.’ I loved this. It was retweet worthy. Seriously, who says that?

From @arielnoriega5 ‘Agreed! People think they would do one thing but when you are put in the situation, one thing is clear… treatment!! #Life’. Yep, couldn’t agree more.

From @terriwingham ‘Seriously. I think it’s total garbage as I sip my red wine ;-) Everything in moderation even moderation is my mantra :)’. Terri, you’re so friggin’ great!

From @slieks ‘Even worse when they try to convince you it’s the key to your survival.’ Couldn’t have said it better myself.

From @lexieann73 ‘Agree! Unless they have been there and done that they should keep their mouth shut.’ I don’t pretend to know how I would treat MS if I was diagnosed and the same should be said for cancer.

From @iamnotcancer ‘After I finished chemo, an acquaintance told me a friend’s mother was cured by marijuana oil. Pot cures.’ Don’t forget your green tea!

From @nancebeth ‘I was told that grilled food caused my #breastcancer and that there was an herbal tea available that would cure it’. Aha! I knew there was a tea for that.

To my cancer peeps – thanks for listening, this post was brewing for months. To non-cancer peeps, please be very conscious of telling people why you think they have cancer and how to treat their cancer and don’t forget that sometimes bad cancer happens to good people, and instead of trying to get to the bottom of it, accept it – we have.

32 comments:

  1. So true & well said. People want to believe there's a REASON so THEY don't have to worry. My favorite was going to an in-home party and hearing it was the cleaning products I'd been using. Came home crying and my DH took my hands, looked at me gravely and said, "Now, hon. We both know there hasn't been NEARLY enough cleaning going on around here for that to be it". One of the great During-Cancer Laughs!!!!!

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  2. I laughed out loud the first time, then read this to my boyfriend, and we both laughed out loud. Hate that you were part of the blame game, love that it ended in laughter.

    Katie

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  3. I love quivervoice's husband. That's for starters...

    And second.. Katie... don't you KNOW the CURE is in a closet in some drug company???

    Keep the apricot pits, coffee enemas and whateverthef*kelse they got going on coming my way. We call it SNAKE oil....

    I'm in the midst of supporting the lung cancer people on my blog. I feel horribly because besides being blamed, they are shunned. While we are bathing in pink ribbons they are left with nothing. I supposed that's how/why I missed your tweet.

    Well said, as ALWAYS....

    xoxox

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    1. Thanks AnneMarie. You are such an advocate - it's admirable. I haven't stopped thinking about you and your mom since I found out. I am always just a click away...

      Katie

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  4. I remember when my step-dad was dying of lung cancer, several people seemed to think the most supportive thing they could do was research "natural cures", and share that information with my mom. One friend showed up with jumbo-sized containers of whey protein, and all these photocopies about how it will heal everything from warts to cancer. He was very put out when he found out that Mike was too sick to try taking it.

    I think sometimes it's not about blame, but rather about helplessness. The need to do something to help, even when help is impossible. Of course, when it's total strangers, and a year later, that's totally a different story.

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    1. Angie,

      I wrote a post a few months back called Lost in Translation (http://lovelykatielumps.blogspot.ca/2012/10/lost-in-translation.html) and I talked about the difference between what people said and what they meant. When someone told me about her aunt who died of breast cancer last year, it was difficult not to say 'Why are you telling me about another person who died from a disease that I have?' but I learned that they were trying to connect. What they were saying is 'I know how painful this must be for you because I have some experience with cancer.' I am grateful that I could see past the words and explore the meaning.

      And you're so right that people feel helpless. The best way I can explain it is to compare it to raising children. I don't have kids and so if a friend of mine was having trouble with one of her kids, it wouldn't be very helpful for me, some without kids, to go over and tell her what to do. Instead, I would ask her how I could help her and listen about her struggles. It's not my place to offer advice about something that a)I don't have experience with and b)have not been asked to. Does this make sense?

      Thanks for connecting, I really appreciate your comment.

      Katie

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  5. dear katie,

    i can understand how this post was brewing for some time - what a bunch of thoughless (and i mean that in a most literal way) claptrap you have had to endure. it begs the question when in the world will people keep their opinions to themselves, AND realize that assigning BLAME for another's disease is just plain cruel and s-t-o-o-o-p-i-d. this was a great post, and i hope you feel much better after writing it.

    love, xo,

    karen, TC

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    1. Karen, I do feel better after writing it.

      I quite honestly don't think people are trying to be cruel, I just don't want to be told how to be a cancer patient/survivor the same way I wouldn't tell a man how to be a man or a mother how to be a mother. I am neither a man nor a mother so I can't speak from experience. No one is trying to intentionally offend me (at least I hope not) but to say that eating fruit will cure cancer and calling chemo a failure is irresponsible. It's just not that cut and dry.

      Thanks for the message,

      Katie

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  6. Ugh. When my husband was diagnosed people seemed almost angry that he had lived a healthy life and there was nothing concrete to blame it on. His cancer is extremely rare and even then is almost never seen in anyone under 60. He was 42.

    Hearing/reading people on the internet saying that X, Y, and Z are cures for cancer and the pharmaceutical companies are just keeping them hidden really makes me rage.

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    1. Thank you for this. When someone tells me 'You know they have a cure for cancer, but there is too much greed in the world so they aren't releasing it' I want to ask them what good that does to both tell me that and think that way. I have no idea if that's true but they make it sound like I was dooped and that the pain that I felt/continue to feel is unnecessary. I kind of think it trivializes my experience to be honest with you.

      I am a full supporter of people trying alternative medicine - I certainly have done a lot of research on different approaches - but it's when people start telling me that my approach is wrong or how they would have dealt with it differently (having never had cancer, I feel as though it's somewhat easy to throw out opinions) that I get frustrated.

      Katie

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  7. Katie,

    I admire your courage of what you feel that is your choice.. I too was DX with cancer two years ago and had to face the world of chemo.. I am not disagreeing with you, but I know there is other ways to manage cancer. With a lot of research I found other options and acted on them. I was able to manage my cancer with modern technology and natural remedies. This is called FUNCTIONAL MEDICINE.

    Knowledge is power and if I can help others to open up to what is out there, that can manage cancer without surgery, chemo and radiation why not... I feel it is every ones choice on what they need to do for themselves....Managing cancer is a life change and not one thing will cure it.... But to blame one for cancer is just wrong... It happens to everyone and you should be able to make the decision on what type of quality of life you want... I have a web site that I started during my treatment and have continued it with all kinds of ways of preventions and ways to handle situations with cancer.

    It is only to help, not to hinder.... KNOWLEDGE IS POWER and why would you not want others to know that there are other ways to manage cancer?

    Just because I did not have chemo and lose my hair does not mean that I do not understand what you have gone through... I had cancer and feel different and besides for I had several members of my family that had been affected with this illness. They all had chemo and side effects.

    Check out my journey before you hate my guts for thinking out side the box... www.thejourneytogoodhealth.blogspot.com

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    1. Hate your guts? I loved your comment!

      I certainly don't think alternative medicine is wrong, I think I made that clear in my post. I admire your approach to your cancer but that's just it, it's your cancer and my cancer was my cancer so for me to tell you that you NEED chemo is not appropriate the same way I don't want to hear that my choice was wrong, because I made an informed decision and it was right for me. I loved when someone came to me and had a discussion about choices, approaches, and alternatives when it came to cancer. It is the preaching that drives me. It is the 'you know, I wouldn't get treatment if I had cancer, I would do yoga to rid myself of the tumour' - that pisses me off.

      I have a difficult time listening to someone preach about how they would deal with cancer if they were ever faced with it. As I mentioned in a previous comment, I feel as though it's comparable to me telling a friend how to raise her child. I don't have children, so I don't think it would be fair to tell her how I would mother my child because the truth is no matter how many books you read or people you talk to, unless you've experienced something, you just can't fully understand it.

      Something else that I didn't address was different forms of cancer too, there are different types, different locations, and different stages and to say that one thing will cure all cancers is irresponsible - like you said (and I love) 'managing cancer is a life change and not one thing will cure it.'

      I am always open to discussions, I just don't want to be preached to. I have put a lot of pressure on myself to do this cancer thing 'right' and as I move along in this 'journey' I learn more and more that there is no right way to do this and I think the same can be said for treatment - there is no right way, there is only the way that you choose.

      I want to make it clear that I am not against alternative medicine or approaches. It would be closed minded of me to say that chemo or surgery is the only (or correct) way but it was the right approach for me.

      Thanks again for reaching out and connecting,

      Katie

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  8. My name is Tom and I drive for a local Breast Coalition here on Long Island. It has been my honor to meet such courageous women who are going through what you are. I know very little of what they have gone through medically, but they do confide in me with other things. We talk, we laugh, we cry. They are fighters. I love my job, and I wish it didn't have to be something that needed to be done. I call them "my ladies". They inspire me as you have in this piece. Keep kickin' cancer's ass Katie, you already know this is your battle and you will fight it your way.

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    1. Tom, you are so incredibly kind.

      Thank you for taking the time to write to me. This post has certainly generated a lot of dialogue and your comment was so refreshing.

      From the bottom of my heart, thank you for all that you do. Your ladies are very lucky to have you.

      Katie

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  9. Thank you for once again striking a blow for rationality. You are the best. :)

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  10. Katie,
    I loved sour sop when I lived on Antigua years ago! Guess I didn't enjoy enough of it, hmm? That's the ticket! If only I would have known, I might have eaten more and avoided becoming a member of the BC club. If only it was that simple. Thanks for the great post!
    JoAnn

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    1. JoAnn,

      I love it! I hope hoping someone was going to say that they used to eat a lot of soursop! Thank you for this. Again, I am not against alternative medicine but to come right out and call chemo a failure and soursop the cure is morally irresponsible.

      Thanks for taking the time for letting me know that someone tried soursop and still got cancer...

      Katie

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  11. Okay, so I was told by a "friend" that eating too much bacon is way I got cancer. Another "friend" told me it was sugar. Another "friend" told me she could cure my cancer with some herbal b.s. And after my mastectomy, a nurse checking my vitals at 4:00 a.m. told me I probably got cancer from eating a lot of grilled food.
    Love your blog, check mine out at nancebeth.blogspot.com

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    1. Thanks Nancebeth!

      I don't get it because there are people who don't eat bacon who get cancer, there are people who don't eat sugar and they get cancer, etc. etc. etc. so why do we do this to each other? Is the bacon person therefore saying that if we stop feeding our children bacon that no one will ever get cancer? Or is only people who have no other reason for getting cancer (hormones, genetics, exposure to second hand smoke, etc.), are they the only ones who should avoid bacon?

      This kind of thing just drives me up the wall.

      Thank you so much for your honesty! Can't wait to check out your blog!

      Katie

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  12. Excellent post, Katie. The worst thing you can do for anyone with cancer is to place blame. Listen, support, help - but please, no blame.

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    1. That means a lot coming from you. Thank you!

      It is shocking how many people tell me the reason for my cancer. I don't walk around telling parents the reason their children are acting up because I don't have children, how would I know? It's maybe not a perfect comparison, but I think it holds some truth.

      Thanks again,

      Katie

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  13. Spot on, Katie! I have to admit that when I was first diagnosed (at 32), I ran through the same exercise -- what did I do/eat/drink/rub against to cause this to happen to me?! I felt like it must somehow be my fault. I think finding a "reason" or a "cause" gives us some meaning to such a crappy situation. And the unfortunate truth (as pointed out by one of my friends upon hearing about my diagnosis) is that sometimes life is a shit sandwich. And there's really no "reason" -- but I love that you are giving it purpose by sharing your thoughts!

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    1. Hi Molly!

      Thanks! Yes, in the beginning I think it was natural for me to seek out the truth behind me cancer but after seeing medical professional after medical professional totally baffled by my file, I learned that it wasn't because I took the pill or ate bacon or used deodorant it's because sometimes life is a shit sandwich!

      Thank you for your wonderful comment. I am grateful for your 'me too' reply to my feelings.

      Katie

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  14. Being a cardiac nurse and avid exerciser, I always tell my friends "Go ahead and smoke and drink....I led this healthy life and here I am with a bald head."
    No doubt, blaming is counterproductive and harmful and causes you to be unable to love yourself.

    The thing is, if the doctors can't tell me why I got it, then it's really up to me to find the answer in keeping it at bay (or at least being the best I can be for however long I have) That's where my search for "health" has taken me.

    In the end it all comes down to how you want to live....accept it and move on? Or question "the cause" for the rest of eternity.

    And when people ask "Why did you get cancer?" you can always say "The doctors think it was answering too many stupid questions."





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    1. I literally laughed out loud. Thank you for some comic relief.

      I have to agree with you whole heartedly that it is up to us as cancer patients and survivors to search out what is healthy for us and acceptance is key.

      Thanks again for the hilarious reason for my cancer, I may use that in the future.

      Katie

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  15. Excellent post, Katie. I know people generally mean well, but still... sometimes things said are pretty "out there" aren't they? Sometimes things just happen. We don't get only "as much as we can handle" and no more. Everything doesn't happen for a reason. And sometimes there isn't anyone or anything to blame. Thanks for speaking your mind on this.

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    1. Thanks Nancy. And yes, I agree, no one is out to hurt my feelings (and I have written a lot about that too)but it's important to speak/write about these kind of issues because I think issues like this start a dialogue and help open up the lines of communication.

      Katie

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  16. Most people, upon being diagnosed, cordon off their memories with yellow tape and start spraying mental Luminol everywhere. They sift through the evidence and pounce on any clue: “So, THAT’s what caused my cancer! It was Colonel Mustard in the library with the carcinogenic lead pipe! I knew it!
    Hi Katie have you seen this video from Jenny Saldana:
    http://ihatebreastcancer.wordpress.com/2012/01/20/stuff-people-say-to-people-with-metastatic-breast-cancer/
    Very funny!!

    I think on a personal level I would love to have some proof cancer wasn't my fault. I know it wasn't...I'd just love to have some evidence....

    If only Jessica Fletcher worked in cancer research. “If you lived in Cabot Cove from 1984-1996, there was a pretty good chance that someone was going to murder your ass,” this writer observes. “With a body count of up to eight per episode, Cabot Cove experienced an outbreak of no less than 800 murders during the time that Jessica Fletcher lived there.”

    Most people, upon being diagnosed, cordon off their memories with yellow tape and start spraying mental Luminol everywhere. They sift through the evidence and pounce on any clue: “So, THAT’s what caused my cancer! It was Colonel Mustard in the library with the carcinogenic lead pipe! I knew it!
    http://ihatebreastcancer.wordpress.com/2011/04/14/order-in-the-cancer-court/

    rock on
    KOB

    Katherine OBrien
    http://www.ihatebreastcancer.wordpress.com

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  17. Hi Katherine and yes, I wouldn't be heart broken if a doctor was able to pinpoint my cancer but knowing that will never happen, it can be overwhelming to constantly try to convince others that your cancer wasn't caused by their reasons.

    Thanks so much for connecting,

    Katie

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  18. Thank you, Katie, for making me smile about a subject that usually has me seething. I've been told that I attracted my cancer by thinking negative thoughts - this was from a complete stranger who had no clue as to how I think or what I think about. I've had two people stride over to me across crowded rooms with a messianic gleam in their eye, before launching into a fervent stream-of-consciousness sermon about how I must give up chemo etc and follow their cause immediately because they have the knowledge and power to aave me alone. Ive had a good friend tell me that she was worried the chemo hadn't worked for me because I was still overweight, surely I'd have lost weight if it was being effective? I smile beautifically, fume inwardly, and then I used it all as richly comical material in a stage play about my cancer last year. To watch the audience roar with laughter was sweet revenge indeed! Love your blog btw. Yvonne x

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    1. Yvonne, I think 'Fume Inwardly' could easily be the name of a cancer blog. Also, what are the odds that someone recorded your stage play? I think that is unbelievably awesome. Thank you for connecting. I can totally relate.

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