Friday, May 13, 2011

Colontown, a community of cancer survivors

I'm out of the chemo room temporarily, and I've stepped from it into an online community where I can talk comfortably about my colorectal cancer.

It's called Colontown USA, a kind of gated community on Facebook.

You can only get into Colontown through Mayor Pro Tem Erika Hanson Brown, a Colorado woman who started the closed Facebook group just two months ago. She already has registered 190 Colonists, citizen survivors of a disease no one really likes to talk about.

My sister can tell you about that. Over the last four years while fighting my cancer, I often got tired of talking about it with her and told her so. It's not a pretty disease. The bathroom becomes the most important room in the house.

So not only do you not feel like talking about it, you don't, and that leaves you pretty much alone (unless you are hounded by a great sister).

Hanson Brown felt the same loneliness while battling her disease. She has survived seven years now, and has staked out Colontown to help others avoid a similar lonely road.

Colontown residents have posted 600 messages to each other over the first two months. Hanson Brown's business card calls the ongoing discussion "colorectal cancer survivors sharing their experience, strength and hope." I can testify that sharing your problems with others offers great comfort when you realize the others have spent as much time in the bathroom as you have.

You are not alone.

On Tuesday, very early in the morning, I spoke to about fifteen doctors, nurses and other healthcare professionals who are members of the Colorado Cancer Coalition's Colorectal Task Force. For months, Hanson Brown has worked to have the task force, which mostly has promoted colon-cancer prevention and screening, to turn its collective eye toward survivors like herself -- and me.

She wants people without the cancer, professionals involved in treatment as well as caregivers and family members of patients, to enroll in Colontown and join the discussion. She'll call them Colonials, and she knows additional voices will only add to the town's collective wisdom.

But Colonials should be prepared. Town residents talk candidly about the side effects of chemotherapy treatments; about clinical studies they are enrolled in to test new drugs, what the new drugs do to their bodies, and whether they get results; about what a drag it is to miss events with family and friends because you are afraid to be far from the most important room in the house; and about the emotional release that is granted by the ability to vent about all of it.
Colontown residents so far have been mostly survivors from across the country (Erika says I am the only other Colonist from Colorado), but there is plenty of room for others to settle in our group.

Andi Dwyer, co-chair of the Colorectal Task Force, is compiling a resource guide for patients, survivors and caregivers dealing with the disease. Erika and I, and four other Colonists who joined the Tuesday task force meeting on the phone, were there to pitch Colontown as a valuable new resource.

Contact Dwyer through the Colorado Cancer Coalition. The coalition enjoys a national reputation for its work, and it already has compiled a resource guide for those working with or contending with breast cancer.

No one in Colorado has to fight cancer alone. Just find the kind of townsmen and townswomen who can help.

1 comment:

  1. Wonderful piece, Bob! Thanks so much for writing this!

    I think you've captured beautifully the "feel" of community - that sort of "shiver of recognition" - that I always feel when I bring COLONTOWN (and it's citizenry) to my own mind.

    I feel so very much less alone.

    It's my hope that no colorectal cancer survivor ever feel alone again.

    mayor pro-tem, COLONTOWN USA