women 4 hope

Dedicated to addressing women’s issues.

Cancer, Chronic Illness, and Online Communities

Posted by Catherine Morgan on June 29, 2007

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Not too long ago, I did a post on BlogHers living, coping and blogging with chronic illness. At that time I hadn’t included BlogHers blogging with cancer, although I do agree that cancer is becoming more and more a chronic illness.

Cancer is in the news a lot these days. Elizabeth Edwards’ breast cancer, Fred Thompson’s lymphoma, Tony Snow’s prostate cancer are a few that made the headlines. But what’s most interesting about these reports is that they all are about cancer survivorship and not about cancer deaths. Cancer has become a chronic illness and in most cases the diagnosis is no longer a notice of imminent death. Rather it is the beginning of a long-term treatment process with remissions and exacerbations over many years. And with new treatments being developed with novel mechanisms of action, the odds are that this trend towards chronicity will continue. More cancers will become chronic illnesses and those that are chronic will take longer and longer to show their worst sides. — read full article

Coincidentally, it was just announced yesterday that Elizabeth Edwards will be be attending BlogHer ’07 as part of our Closing Keynote on Saturday July 28th. — read more about this exciting turn of events

Many of our BlogHers are blogging about how they are living with the diagnosis of cancer. Below are a few that I came across while surfing through the BlogHer Health & Wellness Blogrolls.

Laurie is a 39 year old BlogHer with two children who blogs about living with metastatic breast cancer. Her blog NOT JUST ABOUT CANCER, chronicles Laurie’s experiences through treatment – “the good, the bad and the truly bizarre.”

This is from a post of Laurie’s titled…

no deconstruction needed

I have just started another knitting project. It’s another giant undertaking, even bigger than the log-cabin, because I will have to sew pieces together. It’s the mitered blanket (although my plans are less ambitious than this example, from the really inspiring Cara, at January One) from Mason-Dixon Knitting.

I don’t think I need a psychologist to tell me why I am drawn to projects that will take me a really long time to finish.

I am, after all, an optimist at heart.

Minevera is A Woman of Many Parts, this is a from a recent post…

How strange a different perspective makes. I am still so affected by the chemotherapy; my legs are hugely swollen, my eyes weep yellow gunk that glues them up, and my nails are so painful but because I am no longer looking to the next treatment, it all seems better. My eyes are not turned to the next island of treatment but instead to the mainland of normality. — read full post

One Breast Less is an everyday story of breast cancer…

Last Thursday, I went for my annual mammogram, given we still don’t have MRI’s in this country.

Before they started the mammogram , the technician asked me some questions about my history. I felt myself getting agitated and angry at this woman. I thought “Why does she make me tell the whole tale again, while all she has to do is read my file” I told her this as well, I don’t know if she understood or not.

Going into that mammogram chamber always makes me go through the day I was diagnosed again. The fear, the horror, the helplessness, it all comes back. — read full post

Jeanne Sather is the author of the blog The Assertive Cancer Patient – living with cancer, and an attitude.

Who, or What, Is an Assertive Cancer Patient?

These are questions I kick around every day of my life with cancer, especially since I began writing this blog back in September and officially identified myself as “The Assertive Cancer Patient.”

Of course, I think I was an assertive cancer patient before the birth of the blog, but that was my coming out of the closet, so to speak.

I think there are at least three good reasons to be an assertive cancer patient:
• You will get better care.
• You will probably live longer.
• You will feel better about yourself and your illness.

Here are some more characteristics of an assertive cancer patient… read full post

Ruby Shooz has a blog called A Bit of Peace and Quiet – life, here and now.

This is from a recent post about dealing with pain…

It was a total meltdown day for me. Back to oncologist who said that since the pain meds aren’t working, here’s a pile of prescriptions for anti-anxiety meds. It’s just not fair. I keep reading about people who have wonderful understanding caring doctors when they have cancer and damnit – I keep getting this write off the pain attitude, that it doesn’t matter or register with them – it must be stress causing the pain. — read full post

Jane’s Breast Cancer Blog – Exploring the Intersection of Cancer and Creativity

I’m a breast cancer SURVIVOR & I live one day at a time. I’m also a freelance writer, incredibly happily married, and the mother of three amazing sons.

Can internet communities (specifically for women with breast cancer) have a positive benefit to the women who participate? Here is some information from a very extensive research study done on this subject…

Internet community group participation: Psychosocial benefits for women with breast cancer. Journal of Computer-Mediated Communication

This study examines the psychosocial benefits of Internet community group participation for women with breast cancer. A longitudinal content analysis of more than 33,200 postings from an online breast cancer bulletin board, and thematic analysis of the “life stories” of 100 women randomly selected from the bulletin board, was conducted. Psychosocial benefits included: receiving/giving information; receiving/giving social support; affect toward the discussion board, optimism toward breast cancer, increased skill or ability to cope with the disease, improved mood, decreased psychological distress, and strategies to manage stress. Over time, a positive shift was shown in women’s affect toward the breast cancer and online community, and a positive correlation was found between amount of participation and psychosocial well-being. — read full research article

Lillie Shockney, is a nurse, author, and blogger of Breast Cancer Chronicles. She is administrative director of the Johns Hopkins Avon Foundation Breast Center, and also a breast cancer survivor. The is from a post she did in May of 2006…

According to a new study conducted by the University of Wisconsin-Madison Center of Excellence in Cancer Communications Research (CECCR), breast cancer patients who participate in online support groups can experience emotional benefits when they openly express themselves in ways that help make sense of their cancer experience. — read full article

As the above research points out; There are a lot of benefits to finding online support when a woman is suffering with breast cancer (as well as many other chronic illnesses). Blogging is a great way to do that, but for people just not ready to create their own blog…there are other options.

There are many health and wellness sites available on the Internet, where anyone can find information on just about every medical condition. One that I happen to like, and use often is WebMD. There are also similar sites that provide forums and communities, and these can serve as wonderful support systems for women. So let me take a minute to tell you about some of these sites.

BreastCancer.org seems like a great place to find information on breast cancer. And they also have a support community with both Breast Cancer Discussion Boards, and Chat Rooms

OurHealthCircle is an online support community that enables anyone seeking support, advice and encouragement on a specific health or wellness topic to connect publicly or privately 24/7 with others who share the same objective.

OurHealthCircle has nearly 750 (and growing) “support circles” run by and for anyone who wants to talk anonymously or personally about specific health and wellness topics, including cancer, diabetes, stress management, depression, alcohol abuse and prevention, parenting and much more. The virtual setting mirrors the real-world intimacy and connection of a group meeting by putting a “face” – either through a personal photo or anonymous avatar – to who’s participating in the discussion.

Here is a link to their community specifically for women with breast cancer.

Revolution Health has something a little different than a traditional forum. Here you can join communities, ask questions, and even make a blog post. Here is a link to their community specifically for women with breast cancer.

iVillage connect has many groups (not just health related) and if you don’t see something you like, you can start your own group.

This is just a sampling of support communities that are available to people online. If you know of one that is really great, please add the information and link to the comments.

Also, if you’re a BlogHer blogging on living with cancer, I would love to know how you feel about online support groups and communities. Are you a part of one? Do you feel it has been helpful? Would you recommend these communities to others suffering with cancer and chronic illness?

And if you are a BlogHer blogging with cancer, and I didn’t include you in the list above…I hope you will add your link in the comments. Thanks.

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2 Responses to “Cancer, Chronic Illness, and Online Communities”

  1. RubyShooZ said

    Thanks for the honorable mention here.

    I often think that I’ve chosen a road that I don’t think many do when they find out they have breast cancer that I won’t get support or even acknowledged but I’ve found that isn’t necessarily true.

    I think there are actually more women who don’t choose treatment than are being heard from but it’s hard to research and I’ve not found much on the subject.

    Thanks for all you do here.

    Peace, love and understanding.

  2. Hi–A couple of posts that your readers might enjoy:

    Cancer Dog
    http://www.assertivepatient.com/2007/08/cancer-dog.html

    Want a Service Dog of Your Very Own?
    http://www.assertivepatient.com/2007/08/want-a-service-.html

    Cheers,

    Jeanne
    http://www.assertivepatient.com

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