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April 2001 Volume 4, Issue 4:
A Patient's Experience: Cancer Etiquette
By Roseanne Kalick
04.01.01

by Rosanne Kalick 

Say “Dread disease,” and everyone knows what youre talking about. Say the big “C” and no one doubts that the word is shorthand for cancer. Not so long ago, if cancer was spoken of, it was done so in a whisper. Today we are far more open about the disease and how we talk about it; bookstores and libraries are filled with books about cancer written by survivors, medical specialists, therapists, and clergy. Now that we speak more freely about cancer, it is also time to acknowledge that the words we use, and the deeds we do play a part in patient recovery. The cliché about sticks and stones is simply not true; words can harm us. I found this out the hard way. 

My journey to the cancer world began in October of 1993 when I went in for a routine physical. I was in good shape, working full time, jogging about 20 miles weekly. About a week later, I was asked to come in for more tests, including a 24-hour urine sample. Since I was a librarian, it was natural for me to go to the medical books. Imagine me standing, holding a huge medical text, and reading that the test could diagnose multiple myeloma; prognosis 18 to 24 months. To say I was shocked was an understatement; I had never even heard of the disease. The diagnosis was confirmed with a biopsy. 
The hematologist/oncologist who had been recommended to me said, “Don’t laugh when I tell you where you should be treated, Little Rock, Arkansas.” I laughed. Here I was, less than an hour from Manhattan, the medical Mecca of the northeast, and I was told to get treated 1,500 miles from home. I decided to make the trek. 

Before going, I wanted to discuss my condition with my family and friends. This included my work family at the community college where I was the library director. Because it was such a large staff, I had to go through the telling twice. It was difficult to say I had cancer, to explain what this strange cancer was, and to let them know that the treatment would take at least a year and a half. As you might expect, the reactions were powerful. Surprisingly, one of the librarians came up to me afterwards and quietly said how wonderful hospice was. I hadn’t even started treatment! That was my first experience with words that hurt. The librarian cared about me. She meant well. Her mother had recently died in hospice, and I assume thats where she was coming from. 

A few days later, an administrator came into my office and said, “Don’t you know youre ruining everyones Thanksgiving?” I can’t remember my exact response, but I think it was an expletive. I realize now, as I did not realize then, that cancer can have this effect on ones ability to communicate. She too meant no harm. These comments may be the vestigial verbal remains of our inability to face the devastation cancer can bring. You have cancer. You represent my worst fears. You make me think of my own mortality. You make me think of mother, or father, or friend who had cancer and died. It strikes at our worst fear. Will my body, too, go out of control? Unlike the past, however, cancer is now less frequently a fatal disease, and more likely a chronic one. Our language must reflect these changes. 

My daughter, Leslie, went with me to Little Rock. I started treatment immediately. The first pleasant surprise occurred the next morning. When I entered the center, the nurses and staff knew my name. The first procedure, after the multiplicity of blood taking, MRIs, and other diagnostic tests, was the insertion of a catheter in the chest. Only a mild sedative was used; we talked during the procedure, about everything from music to fishing. When the surgery was finished, I was given a small package, a present from the surgical team, the retractors and clamps that had been used. I was told that they would be the least painful tools to take the hook out of the fish. An ironic way but wonderful way to start the healing process. It was also one of the first examples of how what one does can promote healing. I was not a tumor; I was a person. 

I had elected for the two stem cell protocol, followed by four and a half years of interferon. Myeloma graduates know what this entails, the discomfort, infections, periods of weakness and strength, the physical and emotional rollercoaster as counts rise and fall. In my case, as with most patients at the ACRC, the treatment was long distance. I was an outpatient for the first transplant, and therefore, was required by the doctors to have someone with me at all times. Each transplant required about four weeks in Little Rock. My daughter Jean and a friend worked out itineraries for my friends and family, so that I was virtually never alone, another example of the healing power of good deeds. 

Dr. David Vesole arranged to have members of the local Jewish community visit me. The second transplant required hospitalization. One evening, a young rabbi came to my room, just before the start of the Sabbath. He brought a miniature challah, a piece of potato pudding, and a small portion of soup with two matzo balls. I really couldn’t even stand the smell of the food, much less the thought of eating it, but I stared at it for a long, long time. I was not alone. I mention these two incidents because they illustrate how as friends, colleagues, and family we can find the right language, the right behavior in times of a cancer crisis. The treatment finally ended and I recovered with what is considered a good partial remission. I returned to work, and worked until my retirement. I rarely thought about the negative comments I had heard when I was first diagnosed. 

Last April I went in for a routine mammography. My doctor called and asked me to come in for some additional pictures. This had happened before, so I wasnt too worried. I knew I was in serious trouble, however, when the technician said she was going to walk the pictures over to the radiologist, and then even more so when my doctor came to the mammography office. He sat down, and told me I probably had cancer in both breasts. Nothing had shown on physical examination. All prior mammographies had been negative. I had a double mastectomy on May 31. 

It was during this period that I again became aware of how powerful and how hurtful language can be. I was telling a friend, whom I had known for 40 years, that I needed a double mastectomy. Without missing a beat, she said, “At least you’ll be symmetrical.” When I spoke to yet another friend, she screamed, “You’ve got WHAT?” A few days later someone else said, “Well if anyone should have this cancer, it’s you.” She immediately realized what she had said, and apologized profusely. I knew what she meant, but when it comes to speaking about cancer, we often lose control over our words, and occasionally our deeds. I then began to think seriously about how we speak of cancer. We have etiquette books on golf, weddings, how to use the Internet, how to fold the flag, but we have no books on cancer etiquette. 

There are no absolutes when it comes to cancer etiquette. Every case, every individual, every situation is different. There can be guidelines though. Often just one word can change a comment from being a potentially negative one to a positive one. “It’s nothing,” may be what you hope is true, but as one who was told twice it was nothing and then found it to be cancer, saying “I hope it’s nothing,” will be better for you and the patient. Your concern will still be evident, but you’re not minimizing the anxiety of the patient, nor are you ignoring the possibility that things may not be all right. 
It will take many more pages than these to develop a cancer etiquette, but there are some ideas I would like to share, what I consider etiquette opportunities:

  • Stay connected.
  • Think before you speak. 
  • When in doubt, keep your mouth shut. 
  • Hugs are good. 
  • Do your best; but do something. 
  • Tell the people you love that you love them. 
  • Tell them again and again.
  • Remember the caregiver. 
  • The person with cancer feels life is out of control. Do what you can to help them restore some sense of control. 
  • If you make a mistake, apologize. 
  • Learn to listen. 
  • There are times when silence is the best  way to communicate. 

I’d love to hear your stories and experiences. Feel free to e-mail me at Rklibrary@earthlink.net.


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