A guide to finding cancer support online

Researchers at Ohio State University studied a group of women who had just had surgery for breast cancer, collecting answers about their feelings of emotional stress, their support system, their diet and exercise, and their smoking habits. The women were also tested for how well their immune system was working. They were divided into two groups, one of which attended regular small group meetings on topics related to their health and treatments, and the other group did not attend any meetings. These women were similar in many ways: age, diagnosis, race, marital status, and menopausal status. At the end of four months, all of the women were interviewed on the same questions they had answered at the start of the study.

The women who had attended small groups showed improvement by reporting lower levels of stress and anxiety, improved feelings of support, and a reduction in smoking. Their blood was tested for T cells, a part of the immune system that helps the body organize its disease-fighting resources, and their resistance to disease was higher. The women in the second group, who did not attend small groups, did not show this kind of improvement.

This study suggests that you will benefit from attending a support group, because it can strengthen you in body, mind, and emotions, while you are in treatment. When I was diagnosed with breast cancer and undergoing treatment, I was lucky enough to join a wonderful cancer support centre attached to the hospital I was treated at. It quickly became my lifeline and I fully embraced the opportunities there to attend yoga, meditation, art and creative writing classes. Just as beneficial were the chats over cups of tea with other cancer patients who shared tips on coping with treatment and understood what I was going through. Marvelous as this centre was, it did not prepare me for what happens next.

When the time duly came that I finished my treatment and I was declared NED (no evidence of disease), I knew I had to leave this group which had become my anchor and support and return to the life that had been put on hold for the past 9 months.  From time to time I would return to the weekly meditation class which had sustained me over the previous year’s treatment, but I found that I didn’t “fit in” anymore. I wasn’t in the same space as these other women who were newly diagnosed or in the middle of their treatment, and yet, I wasn’t quite ready for moving on. I know I am not alone in finding myself in this half-way space, the limbo land of post treatment.This was one of the hardest parts of my journey with cancer and as I searched for stories of those who were also experiencing my sometimes confusing post-treatment feelings, I felt very alone and unsupported. I needed to find a new source of support for myself, and so I turned online to find it.

The rest, as regular readers know, is history….

I set up Journeying Beyond Breast Cancer three years ago to help me make sense of my life in this post cancer treatment phase. And find it I did. Along the way, I connected with so many others on the same path, many of whom have become precious friends.

Writer and blogger, Jan Hasak, in a recent article for Medify writes:

Social isolation need not follow a cancer diagnosis.  Find a cancer support group through local hospitals, clinics and the Internet.  Help is only a phone call or click away.  Let your fingers do the clicking through the Google pages.  You’ll be surprised at the variety of ways your needs will be met.

You will find many online support groups, which range from listservs, newsgroups, chat rooms to Facebook groups, Twitter chats and blogs. You get to choose how open you wish to be – most groups observe rules of etiquette and confidentiality.  Over 60% of breast cancer patients who used online support groups said that they benefited from the online community, had less depression, felt less pain, and felt more spiritual.

Finding cancer support online is a great way to overcome barriers such as fatigue, returning to work or living in a remote community, which might prevent you from attending in-person support groups. You also get to connect with women who may be geographically distant from you but emotionally on your wave length and it’s a support group that’s open 24/7 (you will always find someone online somewhere in the world to connect with).

I know that many of you reading this will agree wholeheartedly with what I have written here about finding cancer support online, but today, I want to address those of you who are reading this and are concerned about issues such as privacy on the net. Or maybe you question whether an Internet chat could move beyond the superficiality of most social media and foster any kind of in-depth discussion?

I have met women who tell me they are regular readers of my blog, and while they don’t feel comfortable commenting, they nevertheless find reading it a source of inspiration and support.

So today I want to reach out to those of you who are reading this but remain unsure that you can truly find support online. What are your main concerns? How can those of us who are part of online cancer support communities help you overcome some of  the barriers you have?

And those of you who find and give support online, what has that experience been like for you? Do you have any advice to share with those who are considering stepping into the online support community? Which groups would you recommend? Please share your experiences as a guide to help others on the same path.