Why cancer is not a war, fight, or battle (Xeni Jardin)
Why cancer is not a war, fight, or battle
By
Xeni Jardin
Editor's note: Xeni
Jardin is an editor and founding partner at BoingBoing.net.
The opinions expressed in this commentary are solely hers.
(CNN)
-- When news of Senator John McCain's brain cancer diagnosis hit the internet,
I thought it was beautiful to see so many well-wishers tweet to him with
messages of support.
President
Barack Obama tweeted: "Cancer doesn't know what it's up against. Give it
hell, John." Rep. Steve Scalise, still recovering from surgeries to treat
his gunshot wound, said: "Praying for my friend @SenJohnMcCain, one of the
toughest people I know."
It's
hard to know what to say when someone gets bad news, but when I read some of
the well-intentioned tweets from McCain's colleagues in the Senate and House,
from former Presidents and vice presidents, one thing I kept seeing really
bothered me.
I'm
a cancer survivor, and since the day of my own diagnosis, it felt strange to
hear it myself.
"You'll
beat this."
"You
got this."
"You'll
win this battle."
"Cancer
isn't as tough as you."
"You
have a positive attitude and you're a fighter, so I know you'll get well soon."
"You'll
be fine."
Strangers
and friends who loved me said some of these things too. I knew they meant well.
Like them, I grew up hearing cancer described as combat, something you
"beat" if you've got enough "fight" in you. President
Richard Nixon declared war on cancer when I was a baby. Military metaphors were
familiar, but they stopped making sense when the war was me. My own body.
Cancer,
I soon learned, is my own cells going rogue. Suddenly all the combat language
was confusing. Am I the invading army or the battleground? Am I the soldier or
a hostage the soldier's trying to liberate? All of the above? If the
chemotherapy and radiation and surgery and drugs don't work, and I die, will
people be disappointed in me for not "fighting" hard enough?
For
me, cancer never felt like a war. Cancer wasn't something I "had," but
a process my body was going through. Brutal but effective medical treatment
paused that process, as far as I know today. By the grace of science and God,
I'm alive with no evidence of active disease as I share these words. It's as
close to "cured" or "winning" as I get, one day at a time.
And I'll take it, with gratitude.
Writers
before me like Susan Sontag and Barbara Ehrenreich lived with breast cancer
(and Sontag died from it), and both wrote about the dissonance of war metaphors
in describing our disease. In war, we are taught, there are winners and losers.
When breast cancer, a disease for which there is no known cure, progresses to
our lymph nodes and shuts down our organs, have we as fighters failed?
There's
no one right thing to say when someone gets diagnosed with cancer. Even if
there were, nobody elected me to be the cancer vocabulary police.
I
am no warrior. I just showed up to my medical appointments, did what I was
told, and lived as best I could. Now, I try to avoid saying things to other cancer
patients that imply I expect a certain outcome for them, or that I expect them
to feel or behave in a particular way. "Try to think positive!" isn't
always reasonable or possible, and I don't want to make a fellow patient feel
bad by commanding them to feel one thing or another.
Some
of the fellow cancer patients I met online became close friends during the
isolation of treatment. They freely shared invaluable tips from their own
cancer experience that helped me have a good outcome. Some of these men and
women didn't live. Their cancers didn't respond to treatment, or they did but
later popped back up as metastatic recurrences. Some of those stage IV patient
friends have since died. They taught me that acceptance of the unknowable, and
doing our best with our bodies, our lives, and our treatment options a day at a
time is the best any of us can do.
One
of those beautiful friends was Lisa Adams, a mother and writer, and a fearless
soul.
"When
I die don't say I 'fought a battle.' Or 'lost a battle.' Or 'succumbed,"
she wrote. Don't make it sound like I didn't try hard enough, or have the right
attitude, or that I simply gave up.
When
I die tell the world what happened. Plain and simple. No euphemisms, no flowery
language, no metaphors."
She
lived. She died. She is still loved. Her words still resonate for me.
During
this odd era in which facts, truth, and reality itself seem to be up for grabs,
I'd like to propose that with cancer, as Lisa suggested, we just call it what
it is. War is war. Cancer is cancer. Cancer is a disease of cellular biology in
which some cells stop obeying the good instructions they've been given. They
hog the body's shared resources, and replicate over and over again, until the
body's own organs cannot carry out the basic functions we need for life to
continue.
We
don't know how any cancer patient's life will unfold. What will become of any
one of us is not ours to know. All that any of us can do is try to live today
as best we can.
Dear
Senator McCain, thank you for your lifetime of service to America. Cancer
sucks. Glioblastoma is a rough diagnosis. I'm so sorry you have to deal with
this. I'm glad you have expert oncologists and surgeons working with you, and
that you have such an abundance of loving support from family, friends, and us,
your fellow Americans.
We
are all wishing you the best, Sir.
Godspeed.
TM& © 2017 Cable News Network, Inc., a Time Warner Company. All rights
reserved.
Comments
-
Thank you for sharing this. Absolutely agree with it all.
-
I don't think I've ever been comfortable with the use of war/battle/fight metaphors in describing my or any person's experience with cancer. Twenty two years ago I was diagnosed the first time with breast cancer, eleven years ago the second time, eight years ago the third time (mets that time around). I can barely remember how I initially considered the diagnosis, but I think it was something along the lines of feeling like my body, and perhaps even my life, had betrayed me. Not too long into the process of learning to live with cancer, I realized how the language of betrayal didn't fit with life perspective and values. I learned how to trust my body as my oldest, dearest friend--one doing its best possible, but certainly imperfect, and imperfect, yet still whole. Wholeness--that seemed to be an interesting concept: Could I be whole even though one or more of my parts was not operating in a way that resembled wellness? And so started the deepening of understanding of what it means to be whole.
The person who lives with me can attest to the fact that I still voice outrage when I read that someone lost her battle with cancer. So, I was definitely relieved when I read the above essay on my news feed, and I decided to hold hope again that maybe, just maybe, one day people won't automatically consider a cancer experience as a war...or a battle or fight that can be won or lost.
PS If you use the above metaphor(s) to describe your experience with cancer, and it fits with your values and beliefs, please don't feel judged by me. That's not my intent.
In lovingkindness....
-
Thank you for this. Reading the posts to McCain made me cringe especially given the odds with his diagnosis.
When I was cut off chemo my oncologist said "Oh well. You tried". The implication was tried and failed. People with diabetes are not seen to have failed when they die of the disease. They are also not said to have fought a courageous battle with the disease. Nor are heart patients.
Many people I know who have other diseases (stroke, MS, renal failure....) are fighting a lot harder than I am.
You get cancer. You get treatment or not. You live or you don't.
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Good piece.
Tina
-
sorry, just noticed it was stage 4 forum. :-/
-
So well said I have told friends and family if they say she lost her battle or any other war analogy, I will come down from the heavens or up from the depths and there will be hell to pay. I want no pity or folks feeling sorry for me. My epitath - she lived, she died, she had a pretty good run
Nel
-
LOL Nel, well said. When people talk about heaven and hell I cant help but think about the traffic flow when we have a "Highway to hell" and only a "Stairway to heaven".
As a woman who is never going to "win this battle" against cancer, it is frustrating and hurtful to be made feel like a failure or a loser when I am still alive and doing the best I can to just get through each day. I'm not brave or courageous either, to do something brave involves a choice to do it. I have no choice, once again it is about making through each day, having something to look forward to (in the near future) and enjoying what I can of the time I have left.
Cancer is a disease, it is neither a battle nor a journey. If I wanted to go on a journey I would take a damned holiday.
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Brendatrue, thank you so much for posting this. It was well written, and I concur with the author's outlook when it comes to cancer.
I never framed having mbc as a war or battle, tho respect anyone who chooses to approach it that way. The way to deal with mbc that worked for me was to look at many areas of my life and see what changes or adjustments I could make to aid in healing. This wasn't something that happened overnight or in a month. It involved everything from downsizing some things, decluttering, adding more things I wanted to do and cutting out what I felt obligated to do. It involved my relationships with others. It involved my spiritual, emotional, physical and mental states as well. It was/is a comprehensive approach to dealing with the whole of me. Words like battle and war were too simplistic of an approach for my way of thinking.
I don't think we need a couple of all inclusive words to describe what we go thru as if it can be wrapped up in one tiny phrase.
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Wrenn, please feel free to repost this piece wherever you'd like to share it!
-
I too am uncomfortable with a war analogy. I show up, I do the best I can. I'm OK with the journey metaphor but can understand those who aren't.
Once again, I show up, I live as best I can and I'll die as best I can. Lots of people around me are surprised and shocked that I'm so matter of fact about this, but there's nothing I can do to change the situation. With luck I'll live well for a long time. With no luck I'll die soon. So far I've had pretty good luck. [considering the suckiness of getting cancer in the first place]
You know, now that I write this, I do like thinking of this diagnosis as bad luck. Because that's what it is. I feel for those women who have 'done everything right' and can't understand how this happened to them. I don't think of cancer as anything I did. It's totally an accident. No one knows why our cells turn on us but there it is. It happened. I move on.
My best wishes to John McCain and to all of us.
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Thank you! I have never related to the war/warrior/fight metaphors. I do the best I can and enjoy life. As to a positive attitude, I have always been a bit of a Pollyanna and I didn't let MBC take that from me.
-
Brendatrue - thanks for posting this commentary. It really resonated with me.
-
It is cliche but maybe the terminology arose from the "fight-flight-freeze" stress response. Unfortunately no way to flee with cancer and freeze is not a good option. With treatment our cells are armed to fight. An epic battle ensues. Unless the treatment is ineffective and our ragtag army of immune cells are overwhelmed or hijacked by the cancer cells. By treatment I also count other healing modalities. Who knows what will work. The problem is we know too little about the terrain, too little about cancer. There are no rules of war. In fact, it is probably a fake war. Cancer is likely evolutionary programmed death and it will win sooner or later unless something else gets you first.
-
Brenda, thank you for posting this, it made me cry. Regardless of which side of the aisle you are on, John McCain is a true American hero and I wish we could send that message to him.
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I read this article a few days ago. I had just told my adult children I had bone mets. I have been blessed to have had 11 years since my first diagnosis. I met some amazing people including a support group where I was the only one not stage Iv. The hospital had only one group. I watched friends, family members pass away from cancer. Many of these people struggled to get the same care that I received. Insurance and health care are not the same for everyone. I still see the man in Infusion who was so sick because he didn't have money for anti nausea drugs . He was too proud to ask or tell the staff.
All that to say what I learned from all these people and others is that it's important to live your life. That's it ...just live the life you have. It makes me sad and angry whenever I hear that people "lost their battle" etc. Whenever I hear that I see the faces of these friends and family members . They were courageous while they were fearful. Cancer took them . It's as simple as that.
I didn't live an extra 10 years because I was strong or brave or positive. I didn't win a battle or a war. I am not a survivor although people try to tell me that. I had cancer. It came back. The odds were always against me with one node positive. I am luckier than many. This is a journey not a race, a war or a battle. All those faces wanted to live and so do I.
I am frightened, angry, hopeful,in denial, worried about my family and I felt all these things many years ago before I had mets. How do I tell my friends and family. Why do I keep thinking about what will their lives be after. I m just starting on a trip I really didn't want to make. Why do I want to clean out my closets. What a waste of time! Am I wasting valuable time thinking about all this.
I am grateful that this article helped me articulate my feelings to my family.
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I view it as living with cancer. Often thumbing my nose at cancer by having a good time anyway. Enduring. And if someday (in the far distant future, of course) someone says I lost a battle, I will come back to haunt them.
Hello, Maire. Your emotions about your recent mets diagnosis are familiar. It may be hard to believe, but you can get through them and come to a place where you feel more calm and even happy. You might want to join the bone mets thread and whatever thread matches your treatment, among others. Let us know if you need help.
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Thank you Shetland Pony. I like the thought of haunting😊 And appreciate your suggestions.
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Maire67, I'm thankful that this post came along at a time in your life when you really needed it.
I've appreciated reading all the posts and members' different perspectives. I was reminded of an essay I read that talked about moving against, moving away from, or moving with challenges, threats, obstacles, what-have-you. Perhaps we do all those things at one time or another--or even simultaneously. I think that over time I've learned to move with--a process that looks different day to day.
Hoping each of you finds your way with clarity and perspective that best fits YOU!
-
Thank you your thoughtful post. I too struggle with these metaphors. How can one frame and communicate this bazaar struggle? I'd be willing "fight" as hard as could, ... but what the heck does that mean? what do I do? If I am loosing, does that mean that I was unprepared? unskilled? unmotivated? Cancer seems to me more like being mugged at gun-point than hand-to-hand combat or trench warfare. I suppose my body is a "battlefield" between my (evidently inadequate) immune system and a bunch of rogue cells.... if that is the case, I was drafted and no one provided any training or armaments (aside from a bunch of slash, poison and burn). On days when I am feeling brutalist, I think natural selection is just going to take care of some people earlier than others.... and things are not looking so great for me right now. A vaguely medieval metaphor .... I do rather feel like the barbarians are at the gate and it is a matter of how long they can be held at bay. My personal pet peeve ... and I suppose we all have them... is when people tell me to "think positive." Most of the time I am courteous enough to keep my mouth shut because I (generously) assume that this falls into the category of inept well-wishes. Occasionally, I "share" with someone that there is no clinical evidence that "thinking positive" changes outcomes. Thinking about cancer clinically rather than personally allows me to think about it but not focus on it wreaking havoc on my life. Sometimes, I just try to take a break from thinking about any of it and get out of the mental weeds. I cringe at the bad metaphors and ignore them.
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Lumpie, thank YOU for your thoughtful post! You mentioned one of my most dreaded phrases: "Think POSITIVE"--where one can imagine a smiley face or a pink ribbon in that "O" thrown in for good measure. Aaarrrggghhh! I could write about that topic for a while, but I'll refer you and anyone else interested to this excellent essay (one you already may have read, of course) by Barbara Ehrenreich:
https://www.theguardian.com/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich
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Thanks for the link to the Barbara Ehrenreich article, Brendatrue. I myself have been very guilty of smiling and treating my cancer and treatment as though it weren't a big deal - to save the feelings of others. Occasional rage is, I think, a very healthy thing!
MJ
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I liked the article, too, Brenda. The author makes so many good points. The perky positive approach was foisted upon us by a society that does not want to picture women going thru the ugliness or despair of this disease. We must dare to be ourselves about the matter, and be true to our feelings.
Society also likes to minimize the issues of women, including health matters. Again, we must try not to fall into the societal trap of making everyone else feel good about "our" cancer. We must own what we are going thru and what our experiences are. Without apology.
The perky positive attitude we are expected to have makes FAR TOO LIGHT of breast cancer. Making this a cheerful disease minimizes it. There is most often grit, determination and perseverance involved in going thru treatment and beyond. Society doesn't want to describe women with these tougher characteristics that are more often attributed to men.
If women were really honest with themselves, they might admit that too much energy is spent on an outward appearance that "hey, I got this!" "Oh! This is a walk in the park!" "Wow! What a gift!"
I personally reject the insistence that I be outwardly cheerful. I have a good life, I am in no way sour or despondent, But I choose how I spend my energy and its not going to be spent living up to someone else's expectations.
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Great article. We often expect too much of ourselves trying to protect our families and friends. Thanks for sharing
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As my "name" suggests, I do believe this to be a battle. In my life's experience, I have come across those who view each new challenge as a negative and some who view it in a different light. To me, the "fight" is more of a will to at least step up and take the challenge rather than to just throw my hands up and say "I can't". I am more than aware of the fact that at some time I will more than likely be in the position to decide that "I won't" but somehow that still gives me the feeling that it is my choice. Saying that enough is enough is still a win in my book.
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I love this. It states it exactly the way I see it. I've told my family that if my cancer is the reason I die, not to say I passed away peacefully after a long (or short) battle with cancer. I'm not fighting a war or battle. I've told them to say I lived with cancer for however long it was before passing away peacefully
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WTF, just a couple of passages from the article Brenda posted. These are some of the attitudes Barbara Ehrenreich came across. We are women, we must be pretty and sweet all the time and you cannot use cancer as an excuse to let yourself go, UGGG!!
"cancer is your ticket to your real life. Cancer is your passport to the life you were truly meant to live." And if that is not enough to make you want to go out and get an injection of live cancer cells, she insists, "Cancer will lead you to God. Let me say that again. Cancer is your connection to the Divine."
The effect of all this positive thinking is to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against but a normal marker in the life cycle, like menopause or grandmotherhood. Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalise the disease. Indeed, you can defy the inevitable disfigurements and come out, on the survivor side, actually prettier, sexier, more feminine. In the lore of the disease – shared with me by oncology nurses as well as by survivors – chemotherapy smoothes and tightens the skin and helps you lose weight, and when your hair comes back it will be fuller, softer, easier to control, and perhaps a surprising new colour. These may be myths, but for those willing to get with the prevailing programme, opportunities for self-improvement abound. Breast cancer is a chance for creative self-transformation – a makeover opportunity, in fact.
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Freya - that last paragraph was sarcasm , right?
-
Thanks Brendatrue for posting the link to the article from the Guardian by Barbara Ehrenreich.
The last paragraph of the article was the perfect summation.
"Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a "gift", was a very personal, agonising encounter with an ideological force in American culture that I had not been aware of before – one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate."
With that said - I am certainly not advocating against having a positive attitude. I try to be as positive as possible simply because I feel better when I think positive. I'm all about feeling good for the rest of my life.
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Bigbhome, unfortunately not sarcasm, but I really don't know what to call it. This line from the paragraph AnimalCrackers posted above sums it up:
one that encourages us to deny reality, submit cheerfully to misfortune and blame only ourselves for our fate.
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