Telling People You Have Breast Cancer

Phyllis Johnson Health Guide
  • Telling people that I had cancer was one of the hardest parts of the experience.  We had moved a thousand miles away from family and friends just a few months before my diagnosis, so most of time I shared the news in a phone call.

     

    The calls were difficult.  Most people hadn't even known that I was having a biopsy, and now I was interrupting them in the middle of making dinner or helping the kids with their homework to say that I had inflammatory breast cancer.  With each call, I had to decide how much to share about my poor prognosis and the seriousness of inflammatory breast cancer.  For the most part, my friends and family came through in wonderfully supportive ways, but I soon realized that I needed a better way to let people know about what was happening.

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    Group emails turned out to have tremendous advantages for communicating.  I could write when I had enough physical energy.  It gave me time to decide exactly how much information to share.  When the news was bad, I could stop to cry while writing without upsetting the recipient.  The very act of writing helped me sort out my emotions.  Having to explain what the doctor had told me helped me understand it better myself.

     

    Writing helped my friends too.  They were opening those emails when they had time to concentrate on what I was saying and could think before replying.   The responses were a beautiful quilt reflecting each person's strengths.   I have a stack of the emails and regular mail that poured in over the course of my treatment.  Cards and letters filled our mailbox.  Some people sent books or information; others offered their prayers and put me on their congregational prayer lists; some were incredibly good at reading between the lines in my emails and responding empathetically.

     

    A work colleague from my previous place of employment turned out to be particularly helpful with empathy.  A young man with no cancer experience, he wrote, "In response to news like yours, . . . we have three choices: 1) ignore it because we don't know what to say . . . 2) offer cliches, or 3) be vulnerable and speak from the heart."

    Over the course of several emails, we shared experiences.  I wrote to him, "I'm fortunate to have people like you in the third category ("vulnerable and speak from the heart") who really do respond not just to information, but to the feelings underneath. . . . I find that empathy doesn't mean having the same experience.  No one ever will have the exact same combination of factors I have.  Your empathetic imagination does make me feel less alone.  Thank you."

     

    To someone else I compared my fear to a huge, mushroom-like blob.  "Each time I write you, I feel like I've broken off a piece of that fear and given it away.  Thank you for holding a piece of my fear for me."

     

    Since my diagnosis, new tools for sharing news during a serious illness have been developed.  Many people now use CaringBridge, Facebook, or personal blog websites like Blogger or WordPress the way I used the group emails.  Our own Cancer Vixen is trying out Twitter.   CaringBridge is a non-profit site specifically for families dealing with serious illness and will offer you more privacy.

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    One possible drawback to a blog is that you can't tailor who receives each post. 

     

    There may be some issues related to your cancer that you don't want to share with everyone who knows you, so check out the privacy settings possibilities before you choose a blogging site.  However, the advantages of writing about your cancer will outweigh the drawbacks as long as you think about your audience.

     

    The article "Cancer blogs become part of treatment" by Neil Munshi in The Boston Globe (August 20, 2008), discusses the benefits of this trend.  "While there hasn't been much research done on the relatively recent phenomenon, patients attest to its many benefits."   The article reports that two Ohio State University researchers who looked at 50 cancer blogs concluded that blogs help patients cope better with their illness.

     

    Munshi quotes Jennifer Moreland, one of the researchers who said, "It's definitely not hurting these folks . . . it's a good means to express yourself.  These folks will look back over the last few years and say: 'Look at what I've come through. Hopefully, someone else can read this and survive as well.'"

     

    Whether you decide to use email, a blog, or even pen and note paper, consider the benefits of writing your news to you and your support network.  I ended one of my group emails like this,

     

    "I have noticed in each new stage of life how impossible it would have been to understand what it would be like. . . .  But I have found out in a way that I couldn't have appreciated before this experience, how much it means to receive an e-mail, a card, a note, or a phone call.  Your letters and print-outs of your e-mails are all in a folder where I can reread them from time to time, and the cards are on the windows of my china cabinet where I can see them while I eat and be reminded of your love.  Your prayers and kind expression of support mean more to me than you can know unless you have also been seriously ill far from home (or unless you have better imagination than I do!)  Thank you. 

     

    Love,

    Phyllis"

     

Published On: March 23, 2009