Sharing what we know

So a couple months ago I received an email asking me to moderate a new site for cancer patients, caregivers, and loved-ones called wikiCancer. Initially, I was uncertain -- it would mean a lot more time spent researching cancer, reading about cancer, writing about cancer . . . and I already do a lot of that. And sometimes it can be overwhelming, and I just want to forget about it for awhile, but we all know it isn't that easy. And then I remembered how difficult it was to track down information when I was first diagnosed, and how much easier everything would have been if there had been a place that consolidated information about chemotherapy, and coping, and diagnosis, and drugs, and what to ask your doctor, etc. etc. etc. Or a place which would link me to the blogs of others in the same situation I was in -- it would have been nice to know I wasn't the only freakishly young woman with ovarian cancer dealing with menopause and baldness at the same time.

So I agreed to moderate the site. It was launched in the wee hours of Monday morning on March 6 (coincidentally the third anniversary of my official diagnosis, that being the date on which my cancer was confirmed by surgery and pathology, yet another anniversary which I forgot about until days later). Right now, most of the people checking it out are from outside the cancer community, so this is where you guys come in.

What I would love is to have members from the cancer community, especially those of us who are keeping blogs, to post their story on the new site. There is a section called "Shared Stories" where you can do that, and you can link to your blogs from there. If you can mention the kind of cancer you have/had in your title, even better -- that way newly diagnosed patients can easily find stories which relate to their diagnosis experience. Eventually I want to put together a page which lists cancer blogs and links people to them. Not only will wikiCancer be a practical resource with regards to treatments and such, but also it will be an excellent networking tool.

So please check out the site. Contribute wherever you are able -- if you have information about a cancer type that isn't listed, create a page and add it. If you've read an interesting story about a new treatment, link to it on the News & Research page. And post your stories. I've read so many amazing things on the blogs of cancer patients and caregivers, and I think so many people could benefit from reading these blogs.

wikiCancer is a site run for and by the cancer community. So let's get together and make it everything we want it to be. And remember, if you have a questions about the site or posting or suggestions of things you'd like to see -- email me. Cause that's what I'm there for.

Comments

[nicole]

Very cool idea, I know I would love to have had (and still would love to see!) a resource of shared stories. Makes me feel not so isolated...I'll be putting my story up for sure.

Link in the post doesn't work by the way, it's pointing to http://bombinmybelly.typepad.com/my_weblog/2006/03/www.wikicancer.org

[Louise]

Thanks Nicole. I don't know why it was linking like that, it should be fixed now.

I had this long reply written to your last blog entry, but I couldn't post it for some reason. But I saved it, and I'll send it to you as an email.

[Noelle]

Hey there, Louise. Great work! I passed the link on to my stepbrother who is battling a brain tumor.

I know it must suck to have cancer be such a presence in your life, even after the fact, but you're doing a really good thing here. I'm applauding you, you just can't see me. Or hear me.

[Joan]

OK, Louise -- I finally got off my butt and started the thyroid cancer page. I expect it will be keeping me busy for a while!

It's a great thing you started, this wiki.

[sunnyside2day]

EXCELLENT website!

I have added a link on my blog to it and have also added commentary to the site itself. I wish this site had been around when I was diagnosed. I would not have fumbled my way along the way I did in the beginning after diagnosis.

I am sure it will become a sought after source for many as they deal with the cancer journey either as a cancer patient, survivor or support person.

Hats off to you Louise! You are doing a great job.