Breast cancer blog: Internet support groups bring me an oasis
Despite the many well wishes from friends and my swim squadmates, breast cancer can at times feel like flying solo. A month since being diagnosed there is at times an immense emptiness, a void unexplained. “Get well soon,” wishes no longer really work.
At times I desperately seek an oasis and a community. So far the pickings are slim; I’ve found a mere two 40-and-under ladies with the same diagnosis, and one isn’t up to talking as she’s undergoing chemo.
When being thrown life’s lemons some people hit the bar, others the shopping malls or the gym. Retail therapy and the treadmill works to a certain point, but what I really want is to talk about the emotions and fears surrounding the cancer, and that’s when it gets tough (it’s hardly the kind of banter one would have with a bartender). I’ve considered taking the pastor or the shrink route, but who I really want to talk to are others like myself.
So I’ve turned to Facebook and the Internet to hunt for others like myself, because I am fast learning that even family are limited in how much they can talk about the nitty gritty of post-lumpectomy symptoms, feelings of anger and loss, not to mention the occasional rant I have with my left breast.
The good news is that there are a ton of breast cancer support groups out there thanks to the power of social media.
The Susan G. Komen Foundation, Breastcancer.org, and Young Survival Coalition are some of the larger organisations with a wealth of resources and support, but there are hundreds of smaller communities that were born on social media platforms.
After trolling Facebook I became a member of Beyond the Pink Moon, Little Pink Houses of Hope, and Pink Ladies of Sai Kung, a group of women who fundraise for the Hong Kong Breast Cancer Foundation. I’ve gotten doses of camaraderie and comfort by scrolling through the posts on Facebook. On Beyond the Pink Moon I am met with a virtual welcome mat by fellow breast cancer conquerors and am showered with likes, smiley face emoticons and hearts.
These women have shared their own stories. We speak a similar language and are familiar with the vocabulary. We understand the significance of genetic testing, what it means to have a positive estrogen receptor, negative HER2, the realities of mastectomies single or double and the down and dirty realities of breast reconstruction.
Here is a post from the Pink Moon ladies:
Hi Ladies! I'm new to the group and am so glad I found a community of others who can relate to what I'm going through. I am 37, BRCA2+, and diagnosed with breast cancer on May 14th. I start chemo on Monday, followed with surgery sometime in the Fall.
I'd love to hear from you with regard to: what do you wish you knew before your very first chemo day? Any special suggestions?
Thanks so much!! :)
And this from another:
Biopsy came back normal!!! Now off with the boobies!!! I am NOT going through this again.
And there are swaps and exchanges, messages of hope, articles about discoveries, cures, diet, fitness, meditation, yoga, recipes and remedies for prevention.
Here a post from another Pink Lovely.
Health tip! Dr. Dean Ornish believes we can reverse our genes and illness. Here he recommends some simple changes to make a powerful difference in our health.
And there are stories of hope and survival, a quick fix to the blue spots during the day. (Hi Everyone! Day 9 of recovery. RC my husband took me to lunch today. I hate how I get so tired doing smallest things...I got to shower, and wash my hair today too! Yay, I'm starting to feel a little human again. It's the little things in life that make me happy!) I’ve also scoured and devoured the posts on community forums and discussion boards.
Sometimes the outreach is a lot more basic and is a simple e-mail. I’ve fast learned the diagnosis itself the fastest connection to an instant group of contacts, friends - sisterhood if you will. All I need to do is give my basics, name, age, diagnosis and within a day I receive e-mails from fellow survivors at Young Survival Coalition and a group called Stupid Cancer for the under-40 crowd, welcoming me to the organisation, listing the resources available to me, and letting me know that I’m not alone. They are always a click away.
In the end, I’ll admit it that I have never been much of a fan of Facebook. Before being diagnosed I began getting bored of my own posts (here is my breakfast and here is my dinner, here is me posing with a massive rubber duckie) and of other peoples’ pics of food, feet and pets, but now I am truly hooked. I have finally found my community on Facebook and give the pink moon ladies a thumbs up.
List of Resources
Pink Ladies of Sai Kung
Twitter: The Haven; Breast Cancer Action, The Breast Cancer Charities.org