There Were Times When I Was Creeped Out

I had to do it a little early- haircut received on Friday December 23 - one week  before my first chemotherapy anniversary.  I finally have stopped telling people that my curly short hairdo is my "Chemo Hair".  When I get complimented now I just say thank you and let them think I wanted a new style. I know this is not the hair I lived with for most of my life, although once upon a time, in the 80's in South Florida I paid good money to have curls. Yesterday, I purchased 2 canisters of Paul Mitchell's mousse as it was buy one get the other half off. So I ought to be good for the rest of my curly hair's lifetime. It is also nice that I am much less gray. Maureen was so reassuring as always. My hair came in at all different lengths and could no longer be managed with mousse. A hair cut that gave it some shape was definitely required. 

So it is approaching the end of the year and I read this article today and it reminded me of some awful experiences I have had with people who just do not know what to say or ask- and some challenging comments that were not meant to impact me at all but did deeply. Like last New Year's Eve- I sat near someone that had cancer 6 years earlier and now it was back. I crumbled inside.  I did not want to hear about it. I wanted to get away but did not know how. I kept thinking- I want to know what she did wrong so I will do it better. Since then I learned that there is no such thing as "wrong".  It is a crap shoot. Each and every woman at Mary's Place retreat center had a different course of treatment for their breast cancer.  I despised hearing about other people's friends and relatives who had cancer and died.  I would wonder- "Why on earth are you telling me this- how insensitive could you possibly be."  GO AWAY NOW !  But I would listen and nod, trying to appear polite and wait for an opening to move away. 

For all of you who want to know.  I have not been declared cancer free. There is not statements like "we got it all" with my type of cancer. It was in my lymph nodes. Cancerous cells could be dormant anywhere in my body. It is a wait and see for at least the next 5 years and then I have learned the doctors feel okay with watching you less but you will always wonder if and when it might be back--- just like the Jersey Devil or the Bogeyman. (mythical creature of terror)

DECEMBER 14, 2016 —Philadelphia Inquirer

Survivors advice: 11 things never to say to a friend with cancer

 

by STAFF REPORTS

The next time you wonder whether it's okay to ask a friend how their cancer treatment is going, consider the story of testicular cancer survivor Dan Duffy and his buddy Chris.

"One day while sitting in the car waiting for a mutual friend, he started asking me questions," writes Dan, a contributor to Philly.com's “Diagnosis: Cancer”blog.  "Some were serious, some were seriously flawed. They included:

"How did you get it?"
"So, how bad does it get?"
"Do you just puke constantly?"
"Since it's testicular cancer, just say you're having sex with your girlfriend ... Can you give it to her, like an STD?"

Was Dan offended? Not at all. Chris, he knew, was just being Chris.

“It taught me that while I appreciated my friends' genuine concern, every now and again, I needed someone who just didn't like me more, or differently, because I was sick," Dan wrote. He's healthy now, and reports that Chris can still be kind of a jerk. "And I still love him.”

It's the holiday season, when friends and family who may not have seen each other for a while are gathering. "How's it going?" seems a safe enough question. But what if someone in your circle is dealing with a health crisis?

We asked the experts - survivors and caregivers who have written for our "Diagnosis: Cancer" blog. They were unanimous on one point: The worst thing you can do is ignore another person's pain. Saying something well-meaning but kind of stupid is not great, but it's better than walking away.

Still, it's hard to know what to say to someone who is struggling. So our experts offered up some well-meaning comments they wished they'd never heard -- and suggested some words they would have found more helpful.

• “You are so brave.” Cancer patients don’t want pity or to be labeled. They are the same people they always were. Let them know you are their friend and if they want to talk about the illness you are there to listen. And if they want to avoid the illness, you are there to talk about other things.
-- Renata K. Louwers

•  “Wow, you are looking so well; you can hardly tell you have cancer.” The real battles can lie behind the mask that the person wears, even after recovery – the ‘invisible’ challenges that are taking  place every day that may not visible, such as extreme fatigue, cognitive challenges and pain. Try this instead: Let them know you are always around for a chat, a coffee, or a walk especially when they are having a tough day or just want a change of scenery. This acknowledges that they may have challenges that aren't obvious.
-- Claire Snyman

• "I don't know how you do it."  My first husband endured metastatic bladder cancer that included significant pain and numerous hospitalizations. Most frustrating was when someone would marvel at what we faced. My response was, “What exactly are our options? We all deal each day with the life and circumstances in front of us.” I know it was a well-meaning comment but it was utterly unhelpful and a reminder of just how awful our life appeared to observers.
-- R.K.L.

• "It's good you can put that all behind you." When I run into people that I haven’t seen in a long time who hear of my cancer diagnosis ..... (there is) a distinctive look of surprise and curiosity followed by an exclamation of “How are you?!” When I respond, “I’m good now, it’s been four years of remission” I usually get, “Another year and you’ll be cured,” or, “It’s good you can put that all behind you now.”  I wish that were true—high grade soft tissue sarcoma cancer is only controllable, not curable. The risk of recurrence is lifetime and so there’s a lifetime of being scanned for tumors at regularly scheduled intervals.   It’s not worth my time to try to explain this, because inevitably the response involves the inspirational story of someone who had some other kind of cancer … and when I ask how this person is doing, the answer is: "Oh, he died!"
--Laurel Felsenfeld

•  “At least it’s not [fill in the name of some other disease].” This can feel insensitive to the person receiving it and demeans what they are going through. Cancer and tumors affect the lives of every person whose bodies they invade, no matter the type, form or degree of aggressiveness. Try this instead: "I can’t begin to understand how your condition is affecting your life. Would you mind telling me more about it so I can understand better?"
-- C.S.

• "God doesn't give you more than you can bear." Platitudes, niceties, etc. only serve to make the speaker feel less awkward, invariably making everything more awkward. There is only one thing you should ever say: "I will be here in any way you need me in any way I can, and every few days I'm going to ask if you need something specific, like a cleaning or a meal. Take me up on it or don't, but I'm not offering out of pity; I'm offering out of love."
-- Dan Duffy

•  “I know how you feel, I sometimes feel like that too.” The physical and emotional experiences accompanying any disease condition are unique to each individual; no one else can fully understand them. Try this instead:  "That sounds tough. Tell me about it and how I can help out." It can be hard for people to ask for help, but if you know more about their symptoms, you can get creative.
-- C.S.

• “You’re doing a really great job.” This is often said to caregivers. Caregivers don’t want praise; they want practical help. Ask about specific, routine tasks such as groceries, laundry, etc. and how you might be able to help. Offer up specific days and times when you could help. Don’t make the caregiver ask.
-- R.K.L.

• “My uncle’s second wife’s cousin had cancer and did this raw diet and she’s doing great!”: Give the patient and caregiver credit for being smart enough to decide upon a treatment plan. If they specifically ask your opinion, then offer it. Otherwise, keep your so-called cancer cures to yourself.
-- R.K.L.

 • Running away. ­­­­­­­­The worst of the worst was when a couple of my friends simply went away. One disappeared entirely and I have not spoken to him since. Another friend had the decency to call me when I was almost finished with my treatment. He told me he was sick with sorrow for not having the courage to face it like I did .... When you don't know what to say, talk about what you would have talked about before your friend or loved one got sick. Life doesn't stop.
-- D.D.

Dan Duffy was diagnosed with Stage 3 testicular cancer three months after meeting the woman who is now his wife, and the mother of their two boys. "I have dedicated myself to telling my own story, and helping people tell their stories, so that no one feels they have to go through cancer alone," writes Duffy, whose day job is video producing.

Laurel Felsenfeld is a registered nurse care manager empowering families overwhelmed by the care of aging, ill or injured loved ones to navigate the health care system and become effective advocates. She is certified as a case manager and holistic cancer care educator and uses her 30 years of professional experience and personal cancer journey to mentor others living with cancer. She can be reached at kickncancersass@gmail.com.

Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network and the Research Advocacy Network. She lives with her new husband, Tim Louwers, in Virginia’s Shenandoah Valley and San Francisco.

Claire Snyman is a writer who works as a volunteer in the brain tumor community and a speaker, most recently at the American Brain Tumor Association’s National Patient & Family conference. Twitter: @clairehsnyman