With Cancer, Let’s Face It: Words Are Inadequate

March 15, 2010, 4:47 pm

By DANA JENNINGS

James Steinberg
We’re all familiar with sentences like this one: Mr. Smith died yesterday after a long battle with cancer. We think we know what it means, but we read it and hear it so often that it carries little weight, bears no meaning. It’s one of the clichés of cancer.

It is easy shorthand. But it says more about the writer or speaker than it does about the deceased. We like to say that people “fight” cancer because we wrestle fearfully with the notion of ever having the disease. We have turned cancer into one of our modern devils.

But after staggering through prostate cancer and its treatment — surgery, radiation and hormone therapy — the words “fight” and “battle” make me cringe and bristle.

I sometimes think of cancer as a long and difficult journey, a quest out of Tolkien, or a dark waltz — but never a battle. How can it be a battle when we patients are the actual battleground? We are caught in the middle, between our doctors and their potential tools of healing and the cell-devouring horde.

We become a wasteland, at once infested by the black dust of cancer and damaged by the “friendly fire” of treatment. And ordinary language falls far short of explaining that keen sense of oblivion.

As a patient, it’s hard to articulate how being seriously ill feels. In a profound way, we are boiled down to our essential animal selves. We crave survival. We long for pain to end, for ice chips on parched lips, for the brush of a soft hand.

It pays to have a positive outlook, I think, but that in no way translates to “fighting” cancer. Cancer simply is. You can deny its presence in your body, cower at the thought or boldly state that you’re going to whup it. But the cancer does not care. You’re here, the cancer has arrived, and the disease is going to feed until your doctors destroy it or, at least, discourage it.

Then there’s the matter of bravery. We call cancer patients “brave,” perhaps, because the very word cancer makes most of us tremble in fear. But there is nothing brave about showing up for surgery or radiation sessions. Is a tree brave for still standing after its leaves shrivel and fall? Bravery entails choice, and most patients have very little choice but to undergo treatment.

Which brings me to “victim.” I didn’t feel like a victim when I learned that I had cancer. Sure, I felt unlucky and sad and angry, but not like a victim. And I have no patience for the modern cult of victimology.

Victim implies an assailant, and there is no malice or intent with cancer. Some cells in my body mutinied, and I became a host organism — all of it completely organic and natural.

And what are we once treatment ends? Are we survivors? I don’t feel much like a survivor in the traditional (or even reality TV) sense. I didn’t crawl from a burning building or come home whole from a tour of duty in Afghanistan.

I’m just trying to lead a positive postcancer life, grateful that my surging Stage 3 cancer has been turned aside, pleased that I can realistically think about the future. I’m trying to complete the metamorphosis from brittle husk to being just me again.

The phrase “salvage radiation” is not used much anymore, but when one doctor said it in reference to my treatment, it made me feel less human and more like a “case.” It meant I needed radiation after surgery, because the cancer was more aggressive than expected — I needed to be “salvaged.”

I felt as if I had been plopped into some screwy sequel to “Raise the Titanic!” — time to raise the U.S.S. Jennings, lads. Or maybe I was going to get picked up by a scrap-metal truck and then get zapped at Frank’s Junkyard, laid out in the back seat of a 1960 Ford Fairlane.

And I’m still troubled by this sentence, which I’ve heard many times: “Well, at least it’s a good cancer.” It’s usually applied to cancers that are considered highly treatable, like those of the prostate and thyroid.

Most people mean well, but the idea of a good cancer makes no sense. At best, the words break meaninglessly over the patient. There are no good cancers, just as there are no good wars, no good earthquakes.

Words can just be inadequate. And as we stumble and trip toward trying to say the right and true thing, we often reach for the nearest rotted-out cliché for support. Better to say nothing, and offer the gift of your presence, than to utter bankrupt bromides.

Silences make us squirm. But when I was sickest, most numbed by my treatment, it was more than healing to bask in a friend’s compassionate silence, to receive and give a hug, to be sustained by a genuine smile.

Strangely enough, although cancer threatened my life it also exalted it, brought with it a bright and terrible clarity.

So, no, cancer isn’t a battle, a fight. It’s simply life — life raised to a higher power.

Dana Jennings, Dana Jennings, Jennings Related Posts
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Feeling Like Myself Again After Cancer
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1. March 15, 2010
5:05 pm

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God bless you and your family mr. Jennings

— Cindy

2. March 15, 2010
5:14 pm

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Dana, you make so many good points about the inadequacies of words…While I went through my treatment, I heard a lot of stupid things, said with warm hearts. I never questioned their words, knowing they were doing the best they could with the little they had. I too hated the terminology, the fight, the battle, the surviving. Who fights diabetes? Who survives a broken ankle or heart disease? But I think anything said in kindness is a net good. I wish we had less reactive language to use with respect to cancer. Of all my friends, family and colleagues, only one work colleague never said a word while I went through my treatment. I think she cared, but I still wonder why she never asked how I was, or how I was doing, still, years later. I’m sure it was because she didn’t have the language to ask…but I wish she had tried.

— Kat

3. March 15, 2010
5:18 pm

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Thank you for your exquisite writing. Mine is breast cancer. Avanti! This is the life!

— Marilyn Blundin

4. March 15, 2010
5:19 pm

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Wow.

Dana, I’ve come to think of you as a special friend of mine, who can find the right words for the things I didn’t know I wanted to say.

I do agree that it is better to say nothing, or very little, rather than say the wrong thing. I had a friend avoid me because he didn’t know what to say. I called him on it, and he blurted out, “I’m worried about you, I’m scared you’ll die, I want you to get better.” I appreciated that MUCH more than the people who told me I’d make it because I was a strong fighter. I’ve wanted many times to ask that person, “Okay, if I die does that mean I was weak?” But there is this strange self-imposed etiquette when you have cancer and someone says something stupid to you. You can’t upset them, you have to comfort them.

Just once I’d like to read an obit that said, “After a sensible acceptance of her cancer, Jane Doe passed away at home under hospice care.”

— Alice Payne

5. March 15, 2010
5:20 pm

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Well said. And let’s take the phrase ‘lost her battle to cancer’ out of the mix as well. That one really gets to me, like it was the patient’s fault that he or she died.

So true also about the clarity that life threatening illness can bring. As Theodor Roethke said “In a dark time, the eye begins to see…”

Stage 4, head and neck cancer ten years ago. Thanks, your words are more than adequate. They are right on target.

— Kathy

6. March 15, 2010
5:27 pm

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Wonderfully written. It’s true that often words are inadequate to describe such situations, yet we as humans almost always find the need to speak. I enjoyed your analogy of the patient being the battleground. although I still give patient’s credit for being brave. However, maybe this is just by undying need to use words to describe a situation.

http://foodfitnessfreshair.wordpress.com/

— FoodFitnessFreshair

7. March 15, 2010
5:28 pm

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Truly eloquently said. I hope many people will read your piece. In what are mostly desperate attempts to sound “hopeful”, to encourage the friend who is ill, I recognize that I have fallen into the very clichés you deplore and so has everyone I know. Words are indeed completely inadequate, and yet you have found a way to use them to enlighten the rest of us. Thank you.

— Nancy Guri Duncan

8. March 15, 2010
5:35 pm

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Dear Dana,

According to my research, three of the top 20 statements people with cancer want the walking well to know are:

• “Telling me to think positively can make me feel worse;”

• “Hearing platitudes or what’s good about cancer can trivialize my feelings;” and

• “I need you to listen to me and let me cry.”

As always, you’ve articulated these concepts perfectly. Thank you for being the voice for the tens of millions who have been punched by cancer. (As a writer and cancer survivor, euphemisms or misnomers such as “touched by cancer” hurt almost as much as hearing cancer horror stories).

And if you haven’t already, please check out the “Health Care as Though People Matter,” blog by physician Jeff Kane, MD, author of “How to Heal: A Guide for Caregivers.” Dr. Kane’s February 10 blog post, titled, “Cancer Victim Loses Battle” will certainly resonate with you. (http://healthcareasthoughpeoplematter.blogspot.com/)

Respectfully and gratefully yours,
Lori Hope
http://www.lorihope.com/blog

— Lori Hope

9. March 15, 2010
5:37 pm

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Read this one all the way through. It seems to say it well. Raising life to a higher power, whatever or whoever that may be. xox

— Joyce

10. March 15, 2010
5:39 pm

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I do like the term “cancer survivor”. My husband went through testicular cancer 20 years ago.
Once cancer comes and visit you, it never leaves completely. Even though I ‘ve never been sick, we read a lot about it, we try to be informed, I know at some point either me or our children will have it.
Last year we participated in a cancer run, it was a therapeutic experience. The survivors were in a red t-shirt. A sea of white with some red dots now and then.
The red dots smiled to each other, even introduced themselves. We were very aware that you, that are in a red t-shirt, you are a lucky one. We could even feel the thousands of red dots that were not with us that day.

For the first time my husband felt like a survivor. It was magical. (pardon my english, I am not a native speaker)
Thank you again Dana.

— Mariana

11. March 15, 2010
5:40 pm

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Thank you so much for writing this.

— Stupendousness

12. March 15, 2010
5:43 pm

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I liked the last comment “In a dark time, the eye begins to see….” I would end that quote with, the fragility of life.

— Joan

13. March 15, 2010
5:55 pm

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And this is why poetry is needed – it is the task of expressing what is ostensibly inexpressible; it is not only the task but the activity of. Jack Gilbert’s “The Great Fires” is testament to this.

— Bobby

14. March 15, 2010
5:55 pm

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This is so true.

When my dad had cancer, it was such a terrible, terrible time for him and the whole family, and I had little patience for well-wishers who beamingly spurted out those meaningless cliches. What was even worse was the “advice” that was given to my father and mother – things like “You just need to stay positive,” and “Don’t you stop fighting, ok?” as though if my dad got sicker it was his fault for being grumpy and lazy.

Honest concern is hard to vocalize because those words are a response to, and therefore a reflection of, the raw pain that is the very nature of the disease. Still, I truly appreciate those loved ones who said what they honestly felt and meant, as well as those who were comfortingly present and silent. They are the people who made my father’s and family’s journey more bearable, while the walking Hallmark cards only ever managed to make everyone feel worse.

— Rachel

15. March 15, 2010
5:55 pm

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Dana,

100% agreement! Language and how it is used is so important. So is context. I share with you what I wrote for my synagogue’s newsletter which reflects exactly what you write:

Dear Friends,

It has been quite a month! On January 1st we had a lovely service that honored the memory of Cheryl’s husband, Peter. By Sunday morning I was in the Emergency Room of the Bennington Hospital, soon to be transferred by ambulance to Albany Medical Center. This is when I no longer remember what happened. From my time at Albany Medical until I woke-up on Saturday night I was not aware of my surroundings. Yet wake-up I did. Saturday night found me with two pot holders on my hand constantly trying to scratch my head. Sunday. Monday. Tuesday. Wednesday. Thursday. It was time to leave to go to the Sunnyview Rehabilitation Hospital. Another ambulance. Entering Sunnyview and voila–I did not need to be there. I was released on Shabbat morning when Yuval was able to drive me to Manchester Center (thank you, Yuval).

Yesterday was the pathology report. While it was not what one would characterize as an extremely positive, it is not going to beat me down, hold me back, or break my spirit. No, we will treat this. We will come around on the other side.

I want to share with you the idea of the “war metaphor”–which is that you “attack” cancer. That is not the metaphor I adopt. This will not be a cancer that is attacked. This will be a cancer that gets treated and hopefully disappears. Fighting is not how I choose to do this. Instead I seek shleimut, wholeness. My brain is sick. The rest of my body is healthy. Let’s cure the brain.

Finally I want to tell you how overwhelmed I am with all of your messages to me. Thousands and thousands of messages are up on the websites (did you know there are three of them, in addition to the email?) This community is amazing. You are together. You are raising the bar so much higher than it was before. I want you to know that this makes me grateful.

I will conclude with words from Tehilliam, our psalms: “Zeh hayom asah HaShem, nagila v’nismicha bo: This is a day that God has made: Let us be glad and rejoice in it.”

With love,

David

— David Novak

16. March 15, 2010
5:57 pm

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Have just stumbled upon your article quite accidentally. It’s almost 10pm & I am in bed in Essex (just outside London)trying to purchase a paint tester pot. I literally must have mis tapped a couple of letters on the keyboard & up came the NY Times & your article. I was feeling a bit low after a very dodgy telephone conversation a few mins ago about my breast cancer with a well meaning friend. Reading your article has made all the difference to my evening. Many Thanks.
Janey :-)

— Jane

17. March 15, 2010
6:05 pm

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Whether it is cancer or lupus or any other chronic disease, illness is an impossible condition to describe.

Perhaps it is the fact that the physical feelings involved (fatigue, pain, discomfort, nausea) are all so personal. We each have our own threshold for each of these symptoms and our interpretation, of what these words mean, are vary dramatically.

On top of that, the emotions involved with disease are equally complex, as we often second guess ourselves (I can push harder, can’t I?) or chastise ourselves for, as you say, not being the “hero” others have been. When this happens, not only is the lexicon lacking, but our own willingness to speak about our condition becomes equally dampened.

So without words, how do we justly share our stories? I have struggled with this conundrum for some time and think I have two solutions. One, use tangible objects. Whether it is an essay of photographs or the use of spoons as metaphor for measurements of energy, pairing words with something graphic seems to reveal more facets of the day-to-day life. Secondly, never stop trying. Just because we don’t have the words now doesn’t mean we won’t at some point. And every time someone shares his or her tale, like you Dana, we, as a community, grow closer to painting the big picture of living with a disease.

Thank you for another great post.

http://www.sodiumgirl.com

— sodium girl

18. March 15, 2010
6:19 pm

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Thank you for such an honest and refreshing piece. My wife was diagnosed with a low-grade brain tumor over eight years ago (for which she has had three surgeries) and we struggle with the impossible questions from many friends and family that live in the binary worlds of ‘benign growth’ or ‘cancer’ and ‘cured’ or ‘dying’. How does one go about answering questions such as ‘did they get it all?’ or ‘but she is going to be ok, right?’. For us, the entire experience has been one of balance…managing the condition while living our lives…sharing information while giving comfort (and, perhaps, false assurances).

So much more that I would like to hear…so much more that needs to be said. Thank you again.

— Oscar

19. March 15, 2010
6:32 pm

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Speak for yourself. My mother was very brave to submit to surgery, rehab, chemo and a year of trying to survive and finally face death. She made this supreme effort at 86 as much for her children and grandchildren as for herself. No one will know whether the year she gained was worth her suffering and effort, but I admire her courage. The only word I have to describe her attitude was strength. I will be so lucky if I possess half of hers if my time comes.

— Spofford Torrington

20. March 15, 2010
6:48 pm

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In the last two years, I have had three close friends develop three different kinds of cancer. In all three cases, they wanted no words at all – at least related to health or cancer or treatment. They all said outright they wanted life to go on as it always had before. So I don’t ever ask “how are you feeling” or crap like that. But I do call for no reason to tell them of something funny or interesting that happened. And I spontaneously invite them over more often than before. Those kinds of words seem to work. … At least they do for me.

— Spencer

21. March 15, 2010
6:55 pm

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Cyber hugs Dana,your columns always bring me to tears,you have a lot of courage in both dealing with your cancer and writing about it so honestly,I’m sure you are helping many,many people.

— maureen

22. March 15, 2010
6:55 pm

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Dear Dana Jennings, Your columns about your experiences with cancer are some of the best writing on the topic I have ever seen. (I have quoted and passed on your piece about hot flashes to countless people–mostly husbands of my patients. It’s priceless!)

I’m so grateful to you.

— oncologyNP

23. March 15, 2010
6:55 pm

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So beautifully stated! I had the same thoughts & feelings when I was diagnosed with breast cancer: how could I go to war against my own body? I even refused to use the word “chemo,” which sounded toxic to me; I called it chemoTHERAPY.

The link below is an essay I wrote about cancer and language, published in “Pulse” magazine.

http://www.pulsemagazine.org/Archive_Index.cfm?content_id=45

— Elaine

24. March 15, 2010
6:55 pm

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it’s been 5 yrs since i was diagnosed w/ a brain tumor and still – when friends or family or other – have faced the trauma of cancer i find myself at a loss for words. there is a natural inclination for the uninitiated to ascribe some name for what it takes to stand in the face of approaching oblivion and far often than not what falls out is ‘bravery’, ’strength’, ‘battle’. I do not think all people say these things to be shallow or look no deeper into the experience but because they can not know (or rather do not yet know) what the concept of facing your death looks/feels like. my wife and i always use the metaphor of returning from an overseas war. only the people in battle can truly understand. for the rest, i’m a ‘brave soldier’

— Brian P

25. March 15, 2010
6:56 pm

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Thank you, Dana, for being able to put your thoughts and feelings into such exquisite form and then put them out here for the rest of us.
I have read your other articles on your experience, and think you and your ability to express is an absolute treasure. I appreciate the fact that you exist, think, feel, and then write about it. I am sorry that you went through this, but, it is the same fate which may await many of us, and we need to read, ponder, and try to learn from your words.

— Janet

Comment

My Mom died of lung cancer almost seven years ago. The process took 18 months and encompassed four course of chemotherapy. After four chemo series' she didnt see any improvement and neither did the doctor, so she just said, "Enough". Eacxh of those chemo treatments cost $1500 and more and although she had Medicare her copay was significant. She said, "I can use all the money I have saved all these years to get more chemo and maybe live one more year, winding up as a bag lady living under a bridge. Or I can quit and live the rest of my life as comfortably as possible until the end. I choose the latter." She was very brave the entire time and had most of her ducks in order by the end, financially and emotionally. I still miss her sometimes, when something important in my life happens and I want to call her and let her know.