Once upon a time, I was riding along, listening to a radio interview with a woman who ran a summer camp etiquette school for girls, still even in the year 2009. She hosted this camp in her home each summer, teaching young ladies the social graces. As the girls followed her through a day, she was heard teaching them lesson upon lesson. A gentile sounding woman, I imagined her in very sensible shoes, immaculately appointed in Pendleton wool…perhaps a bit grandmotherly. I was mesmerized by her smooth perfect inflection saying to the girls, “We never call it a trash or garbage can, it’s always a wastebasket; it just sounds nicer that way.”

It made me think about how simple word choices do offer us a mental shift and have the power to viscerally change something in us; to paint how we imagine something in our minds. A simple word choice creates the smell we imagine, and the way we envision the experience will unfold. A single word has bearing on whether we anticipate that the experience will be positive or negative, half full or half empty.

A “garbage can” is a dented metal can, it is smelly and overflowing with rotting food, perhaps a fish skeleton or two. Yet “a wastebasket” is in a wallpapered powder room; it’s attractive with a tidy scented liner and has at best, several slightly used tissues as its waste.

In that same vein, I rarely refer to my former spouse as, “the ex.”  I always say, “their dad,” or “Amelia’s Dad.” “The ex” sounds bitter to me, and highlights the awful and sad part of the story; what was lost, and the other choice speaks to the part that made it through…. what was saved and remains intact. George Carlin, master of word dissection, did a hilarious routine years ago on euphemisms and how airlines have jostled the words around to make the experience of flying more pleasant.  For example, “in the event of a water landing” vs. “if the plane crashes.” He was a funny man, but I digress.  

How we say it says a lot. Words and semantics are not only the tools of my trade but are how I get my hands around something emotionally. Contextual clarity is my business.  My professional work as a forensic interviewer involves talking to children in meaningful ways, with certainty that they understand the questions, and that the words used are as neutral as possible with no emotional loads. For example, in teaching children about “safety behaviors” (vs. sexual abuse, see?) people will often use the age old standard of a good touch/bad touch. I am careful to point out that no kid will likely admit to be involved in something with the “bad” label on it even if it wasn’t their fault, but that is the essence of emotional load and connotation. “Bad” just makes everyone feel bad.

It got me thinking about the words that are attached to cancer, and how the words we use affect both our attitudes towards cancer diagnosis, and our expectations about cancer treatment. They say attitude is everything so pick a good one.  So, if words are the antecedents to our attitudes, I suppose it follows that we must pick words carefully.

There are literally a million words out there; adjectives and adverbs galore, and when taken collectively they have the ability to generate a gazillion more ways to arrive at a description for an experience. So would someone please explain to me why it is that the media always always always always use just two words to describe cancer?  

Grueling and battle.

Why are these two words the Siamese twins of chemo and cancer treatment? Chemo is grueling and treatment is a battle. Michael Douglas just finished a grueling round of chemo, Patrick Swayze lost “a battle” with cancer. The battle, while valiant and courageous mind you, is usually lengthy, but always grueling; a grueling battle.

Chemo is always grueling.

Gruel:

1. A thin watery porridge.

2. Chiefly British Severe punishment.

 Gru·el·ing:

adj.

Physically or mentally demanding to the point of exhaustion:

Grueling  is loud and noisy and dirty and painful. It has this Viking slave boat feel to me. Gruel makes us ask, “What the hell did I do to deserve this?” It involves rusty heavy chains and people yelling orders at you like “Row! Row!” Grueling sounds like torture; it feels like you are wearing rags, it’s cold and all you get to eat is well, gruel. Gruel is assuredly not something we want, to eat or do. We are afraid of things that are grueling, because they are extreme and epic bad. We may wish it upon mean people, but certainly not on those we love.

While gruel may be all you can eat day two after infusion, is chemo really grueling?  I mean in an unremitting, punishing harsh laborious kind of way?  Now, lest you thinketh I am in denial, (like how you get about remembering child birth) by no means am I saying chemo is a cake walk, take it from a chick who had 15 months of it. But I think I am fair in saying really, you are sick with some side effects and you get well. My reality was yes I was a little queasy, flu like sick for a couple bad days after each infusion, but mostly I had meds and magical shots and mouthwash to combat all that. It’s icky and not a whole lot of fun, but it didn’t feel like punishment. The fatigue was a giant pain in the patootie, but not anywhere near what I would call grueling, like say my dad’s bypass surgery (talk about gruel.)

Battle

1. (when intr, often foll by against, for, or with) to fight in or as if in military combat; contend (with) she battled against cancer

2. to struggle in order to achieve something or arrive somewhere he battled through the crowd

3. (intr) Austral to scrape a living, esp by doing odd jobs

OMG really, it’s in the definition of the word? 

I just don’t like this whole notion of a battle. First, it feels like a dual, or a fight or a wrestling match. A “battle” implies you have some control over your involvement, and some vestment and responsibility in the outcome, and well that’s simply not true.  A battle suggests that perhaps you picked the fight as urban legend tells us, by eating one thousand too many processed sugar pixie sticks as a kid. Visually I think of a knight in armor fighting, swords clicking and I hear metal clashing. And you know what, it’s damn hard to feel armored when you have no hair (although does bulletproof comes later.) It’s hard to be a contender when your white blood cell count is zero.

A small variety (read a whopping total of 3) of adjectives are typically attached to this battle; the battle was always courageous, valiant, and brave. While in treatment, of course undergoing “grueling rounds of chemo and radiation” you are “bravely battling cancer.” It is still you against the beast. If the person dies, they “lost their courageous and valiant battle with cancer.”  Maybe it’s just me, but losing a battle implies you weren’t a good enough fighter, and were maybe even weak; which really pisses me off as it seems to say, “Well punkin you simply didn’t have it in you, you didn’t do enough, but Cathy over there, well she opened up a can of butt whoop and lived to tell about it.” “Losing a battle with cancer.” just feels like it says someone layed down and rolled over; that cancer was bigger and better, and in my book cancer is neither of those, no matter the outcome. I wasn’t in the battle if there was one anyway, my oncologist was; I just was sitting in my barcolounger sipping ginger ale and reading the Star magazine

Easy for me to say after five years, but I don’t think there is any more bravery or battle in a having a chemo nail driven into your lidocaine numbed port than there is to getting an appendectomy or a root canal. It’s scary and you do what you have to do to get well. I don’t imagine it’s much fun either getting dialysis, or open heart surgery or a limb amputated but no one calls those things a grueling battle. We residents of Cancerland don’t feel so valiant and brave; sometimes those accolades make us feel a bit perplexed as to how they got attached to us. Sometimes they make us feel a little embarrassed because truth be known we are scared to death, and if people knew how we quivered and cried at night, they wouldn’t think we were really brave at all. The only real grueling battle was what went on in my little head all night long, but I don’t think that is what the media is talking about to when they say grueling battle.

I guess my point is this. Words like grueling and battle just plain fear monger.  They make cancer and treatment larger than life, frightening and monstrous. They assign personal responsibility for the outcome of the disease. With all the hype, it’s no wonder society has a script written out for us at diagnosis, and it is usually that of a horror film. It’s no wonder people are so frightened when faced with a cancer diagnosis, it’s no wonder they have such awful expectations. I mean geez, its scary enough thinking you might die but then to think it could be pure torture where your skills determine the outcome?  Please, just shoot me.

Conversely and on a more optimistic note, words can also talk cancer down to size. Words can make it doable. And I intend to do just that. So here are my suggestions to neutralize the cancer experience and let us make both our own predictions of what it will be like and draw their own conclusions, I mean if you are the one going through it you should have the ability to describe how it feels after all.

My Hair Fell Out in Clumps.  

“Releasing” is the clinical term. Doesn’t it sound so much better, maybe even just a little bit happier?  Hair releasing sounds more effortless and freeing than does falling out in clumps, which just sounds depressing and heavy. Releasing feels like you are letting go of something that was cumbersome. It feels like shedding something you are done with and “oh well, there it goes.” I have to be honest that it was a rather odd experience, it does just let go; I don’t know why I thought it would feel like hair being pulled out or hurt. Yeah, it’s hard when your hair releases, but infinitely harder to have it fall out in clumps.

Undergoing Grueling Rounds of Chemo

I recall trying to explain to my kids what I had and how it was treated. I used neutral terms they could understand, not wanting to scare them and keeping it real. I explained, “I am sick, they have medicine and surgery to treat it (and the medicine makes your hair release.)  Just like you take Penicillin for strep, I will take chemo for cancer.”  If a friend of mine got appendicitis, I would explain to my kids that they would have both surgery to remove the appendix so the person could live, and medicine to kill the infection. Sometimes the part that is sick has to go.  And thank god they have medicine to treat it…although the medicine will make my hair release (I had to assure them that penicillin didn’t do that…ever, I promise.)

Battling Cancer

I remember sitting on the couch with my then bald noggin (as my hair had released while taking the medicine), doing my very favorite thing in the world, watching the Winter Olympics. They were covering the downhill ski event and showed the mother of one of the skiers, her own bald noggin wrapped in a warm Olympic cap. Later, in his interview, the skier was asked, “I understand your mother is battling breast cancer?” He said, ”Yes, she is recovering from breast cancer.”  And just like that, it was game changing for me. Aren’t we all just people recovering from cancer? Doesn’t it sound more half full and hopeful? So from then on when explaining my illness, I said, “Yes, I am recovering from cancer.” Sometimes, just because you say it does make it so.

She Lost/Won her Battle with Cancer or Beat Cancer

She passed away.  Her hair released, she took medicine and she recovered from cancer. Ok, so I have been known to say, “she kicked cancer’s butt to the curb” (instead of beat cancer,) it’s just human to want credit for a victory…even when there was no battle.

When I Had Cancer

Even now when I look back on it and try to describe that time of my life, I never say, “when I had cancer”  I always say, “when I was sick.” It has less drama and intensity, it’s less alarming for people to hear (and you don’t get ‘the gasp’ that way) and really it was, when I was sick. Sometimes I might say “during chemo” but never “during my grueling chemo,”… it just sounds nicer that way.

Grandmother Willow (see first blog) gently reminds me that when I was sick it was a wee bit harder than I recall. But I still maintain that our words steer our emotional mindset going into cancer and can make treatment and perhaps our memories, either frightening or tolerable. A shift in word choices has the ability to take a self fulfilling prophecy of horror and turn it into waste, to spin gruel into food for thought and to make cancer doable.

So I got sick, got medicine that made my hair release, and I recovered. It was hard but doable. Half full, half empty, potato po-tah-to, tomato to-mah-to.  Chin up vs. chin down.  The eternal Suzy Freaking Sunshine in me rides again, but ya know, attitude wins battles, grueling ones at that.

As far as I am concerned, grueling and battle can be put in the wastebasket. Valiant, don’t you think?

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