Breast Cancer Stories
Posted 8/12/2009
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Today, I am writing to tell you about BreastCancerStories ( http://www.breastcancerstories.org/ ), a wonderful website and resource for us all. Here is their description:
Welcome to BreastCancerStories.org — a very special place where Breast Cancer Patients and Care Givers can write about their experiences, share their progress with loved ones, and read stories and connect with other Patients and Care Givers who are going through a similar experience.
Each month, they publish an online newsletter (easy to sign up on their site), and I especially like the new one about the emotional side of hair loss. Losing your hair is not something that gets easier with practice. Since I have had two breast cancers and received chemotherapy twice, I have twice had to deal with hair loss. Both times, I really hated it. Even though I did my best with hats, scarves, make up, and a good wig, I never looked or felt like myself. Although other people were supportive and sometimes even complimentary about my appearance, I always thought I looked terrible, and pictures prove me right.
Here is the article from their newsletter:
THE EMOTIONAL SIDE of HAIR LOSS
Susan Beausang, a breast cancer survivor and maker of BeauBeau head scarves, recently asked a number of people what it was like to lose their hair. With permission, here are some of the responses she received.
The Hardest Part of Losing Hair:
"Feeling less than whole - like I had lost part of me"
"Hair loss branded me as a cancer patient and 'different' when I desperately wanted to hold on to the normal parts of my life."
"It was a constant visual reminder that I was sick. My head was cold. The kids looked at me funny and had such a hard time trying to understand what was happening. It was hard to be anonymous in public. I looked like a different person in the mirror...it shocked me continually."
"It drew attention to me (to be bald and have no eyelashes or brows) and said out loud 'I HAVE CANCER - PITY ME!!!' I hated it."
"Family and friends didn't look at me like I was sick until I lost my hair. Now I feel like I have cancer. The idea that I could die is real."
Most Helpful Responses from Friends/Loved Ones:
"The best thing was my family and friend's honest reactions that 'different' didn't mean 'bad' and me bald was just that - 'different'.
"My husband rubbed/lightly scratched/massaged my head almost every day. And he would kiss the bald head. That made me feel like he didn't mind and still loved me."
"The best responses I got were from survivors who came up to me and said, not it will grow back, but 'I'm X years out, and you'll get through this'."
"When my 11-year-old daughter came up to me when I was crying and said 'You are still beautiful mom'!"
"It's not your hair we like, it is you."
Bothersome Responses:
"Some people would say, it's just hair. At least you are alive. I knew I was alive, it's just hard for them to understand."
"It seemed to invite people (strangers) to ask questions that I didn't always want to answer i.e. type of cancer (diagnosis), prognosis, etc."
"When people wanted to know why I didn't want to wear a wig (uncomfortable!) - like I needed to hide my baldness to make them more comfortable."
"Don't worry it will grow back. It's like, Duh! yes, I know that, but it will take 3 or 4 YEARS to get back to where I started."
Something that has made a significant difference in coping with hair loss:
"I took up running and playing tennis, both of which made me feel healthy and strong again, and challenged people's perceptions of me as a cancer patient."
"As it started returning, we have been taking a weekly picture. I can't really see the progress on me, but when I look at those pictures, it's amazing!"
"I surrounded myself with a variety of head wear options, whether it be a beaubeau or hat, etc. It makes you feel more in control. Also, I got a trendy short haircut before chemo and shaved my head two weeks in. It's easier when you feel like you are driving the process."
"I attend meetings at cancer support groups as often as I can. It is a place where everyone knows and feels what I'm talking about. I can let my guard down.">
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