March 04, 2009

Sharsheret teleconference

Last night I was one of three presenters at a teleconference on writing as a means for self-expression for cancer patients sponsored by Sharsheret, the organization for young Jewish women with breast cancer. It turns out that I was the only amateur (the other two presenters are professional, published writers). I was a little overwhelmed at being in such company, but was glad to participate. Sharsheret also recently launched a blog, and was gracious enough to link from their blog to mine.

Here's what I said in the teleconference, which about 60 women had signed up for --
Why do I blog about cancer?

Thank you to Sharsheret for including me in this conversation. First a little bit about me: My name is Jill Cohen and I have been living with breast cancer for ten years. My original diagnosis at age 39 in 1999 was at stage II. I had a lumpectomy, CMF chemotherapy and radiation. I was also diagnosed with lymphedema a few weeks after my surgery. In 2002, my cancer returned with extensive metastases to more than 20 bones in my skull, sternum, spine, humerii and femurs. A few months ago I was diagnosed with three new primary tumors in both breasts. All of these cancers have been highly ER/PR+ and I have been mostly stable on anti-estrogen drugs and occasional rounds of radiation for the past six and a half years.

I started to write an ethical will, which our first speaker Linda spoke about, while recovering from a broken leg that coincided with my mets diagnosis. Every day I wrote and wrote and cried and cried. But I found I liked writing for 15 minutes every day as a way to express myself. And after my ethical will was complete, I missed the daily writing.

I should point out that I have no published credentials as a writer. Blogging is my first public effort to write outside of the workplace setting. I’m really an amateur.

So why do I blog?

1. I got tired of repeating the same conversation with different people every time I had news to share. When I was first diagnosed with breast cancer, we stayed in touch with family and friends via telephone and email throughout the months of my treatment. A few years later, when my husband had open-heart surgery, we did the same. Then when my mets were diagnosed in 2002, we started sending these mass emails again.

2. Sending email to dozens, maybe a hundred people soon became too time-consuming. I had to segment the large list of email addresses into sections because of the size limitations on the email system. Each post had to be sent several times. Pretty soon we were overwhelmed with people’s desire for up-to-date information and inundated with replies to every email we sent.

3. So I decided to start a blog. Readers can see my blog any time they choose. Most family and friends seem to check my blog several times a week. I feel some pressure to write daily but as I seem to have a lot to say, I can usually keep up with my self-imposed schedule. Unless a lymphedema flareup interferes with my ability to type….

By blogging, I am able to write both short notes and longer posts about whatever part of living with cancer is on my mind that day. I can rant about my frustration with the medical system. I can bemoan my frustrations with lymphedema. I disclose how I manage pain, talk about new symptoms (new tumors!) and deal with new drugs and their side effects. I actually find that getting the cancer stuff off my chest every day helps me live the rest of my life without dwelling on cancer. Best of all, I don’t have to repeat myself several times a day, every day, to different people. I also blog about holiday celebrations, cooking, living a Jewish life, gardening, my dogs, and spirituality, as well as living with cancer and grief, death and dying.

When I have very important news to share, such as test results, I do call my immediate family to tell them what’s going on. So in a way I am still repeating a few conversations. But most of the people I know were willing to check my blog at their own convenience rather than expecting an occasional email from me.

4. In addition to being a great way to stay in touch with family and friends, blogging also gave me an opportunity to educate members of the public who find my blog about the realities of living with metastatic cancer. Since metastatic disease is not frequently mentioned in the press, I think I also fill a need. I am always surprised when random people find my blog. Most of the time I enjoy reading comments from people I’ve never met. Occasionally I receive comments that I do not welcome, and I am able to delete those comments from public view.

My blog is called Dancing With Cancer: Living With Mets, A “New Normal.” It was rated 9.4 out of 10 total points and number 2 of all blogs on metastatic cancer by Blogged.com, an independent rating site reviewed by real people. I was surprised but proud to receive this recognition. It has apparently led others to read what I have to say.

Why did I call my blog dancing with cancer? I’ve been a dancer all my life and this image spoke to me. Sometimes the cancer leads the dance and I follow, and sometimes I am in the lead.

I didn’t learn quite enough about how to blog before I started blogging, so the name of my blog is not the same as the URL. You can read my blog at www.jillscancerjourney.blogspot.com.

I was thrilled to be asked three questions afterwards. The first was on how to deal with people who give you, the patient, unsolicited advice. Here I quoted another woman living with metastatic breast cancer, The Assertive Cancer Patient, who, when she blogs about new treatments, writes that she does not want medical advice from anyone. Her ability to set boundaries is a great example.

The second question had to do with Twitter, which I am unfamiliar with. You should have seen me, trying to access Twitter's web site while simultaneously answering the question.

The third question was a technical one about the ease of blogging. I said that I might be more computer-savvy than some, so it was easy for me to do the research on blog hosts, choose one, and set myself up. My only regret here is that I didn't come up with the name for the blog (Dancing With Cancer) until after I had set up the URL. So they're not the same, which might make it one step harder to find my blog online.

However, I just Googled the words "dancing with cancer" and my blog was the second hit, after a book by a cancer survivor and before Patrick Swayze. How's that for results?

1 comment:

  1. I am dealing with breast cancer as well, my first (hopefully last) bout. I am starting radiation in a couple weeks. The chemo is done. I have been finding a lot of courage by following the stories of people who have walked this walk before me. I blog because I found that it was wonderfully encouraging to be able to go back and re-read. I've come a long way in 5 months. It is not over yet, but I am encouraged by my own transformation so far.

    Congratulations on your successes. I am sure that you are encouraging others.

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I dance with cancer. Oy!