Shared Experience Cancer Support
"It's what we all make it."
Add a cancer experience


Shared Experience Cancer Support

My mission is to create an easy to use website that allows cancer patients and their families and loved ones to discover what others have gone through before, and what some are experiencing now. I hope people will perhaps go on to use it as a means to contact one another and make that most human of gestures: empathetic support. When I have had to deal with cancer, I found plenty of medical information but couldn't seem to find enough first-hand accounts by others who had been through the disease in general and the treament specifically being recommended. So I took off-the-shelf software and figured out how to make web pages interact with a database. I have had alot of help from generous people who have donated their talent and energy (Merritt at oditech.com most especially for recently re-doing all the LASSO programming!) Shared Experience is the result....and while it could do with a lot of work....it's a beginning :-)

January 2008: After setting up the web site and seeding the internet with requests for links, I basically let the site grow itself, and got about 1-3 experiences a day. Cancer is a difficult subject and I needed a break from it, so the past several years it was on autopilot. I would check it every month but thought of myself as simply providing a technical platform, a website, for others to use as they saw best. Two years ago Shared Experience increasingly became the target for spammers. I required no passwords or login which made the site very easy for visitors, but also for pernicious folks. The spammers soon were filling the database with really rather unpleasant postings and I had to take the site down for of 2007. It's been re-designed recently so a person is now required to login with a valid email address. The upside benefit though is logging in makes it possible to collect all your Shared Experience postings for you in one place - just click on "My Experiences" on the left side menu.

The downside has been a dramatic decrease in the number of postings. I am at a bit of a crossroads now and wondering how to re-invent the site so it seems worth the effort of creating login account. I'd appreciate any ideas or comments.

June/2001: Forbes.com magazine "The Best of the Web" listed Shared Experience as one of only three cancer websites! I receive an increasing number of emails from people thanking me for the site and saying they it has made a significant difference in their lives. As most people leave their email addresses it has become a nexus for people, to contact one another, all of which gladdens my heart in the face of this awful disease. Now if only an angel would swoop down and take out full page ads in newspapers around the country asking cancer survivors to post a few words here....and the listing gre from 1500 experiences to 15,000 to 150,000....who knows what larger effect it might have!

February/2000: Why is it important to add your words to a searchable listing so others unknown to you can read them? Because if you write frankly about what you have experienced, someone will identify with you and it may make a difference. A big difference, encouraging them to look further, to express themselves or simply to find the momentary peace we enjoy when we understand each other.

November/98: My first draft, before anyone had contributed to Shared Experience, when I put up the technology to enable people in the hope it would help:

If you were just told "You have cancer", wouldn't you like to go to a web site and find hundreds -- better yet, thousands -- of personal stories by other people with the same diagnosis?

Cancer does not just attack the body; it assaults the individual's sense of identity, forcing us into a lonely guerilla war with an implacable enemy. The only support seems to come from friends and family who really try to understand - but often cannot -- and doctors who often unfortunately seem to have seen too many cases -- and understand too well. It is time to end the isolation and re-discover our inner reserves by sharing our experience with the finest experts in the field, the patients who are fighting cancer every day.

There is an overwhelming amount of medical and technical information about cancer treatment on the Internet: MEDLINE, Cancerlit and PDQ databases, government, medical school and research organizations, pharmaceutical web sites, as well as "for the layman" attempts to describe the disease and its treatment.

Shared Experience focuses on a different area.

Shared Experience is a collection of first hand accounts by cancer patients and the people who love and care for them. We hope it will become a constantly expanding collection of deeply personal accounts: reactions to cancer diagnosis and treatment, creative lifestyle adaptations, and the quest for the right cancer treatment. Rather than a dehumanized "patient" here you will find unique voices, thoughtful reflection, and courage.

Our ultimate goal is to gather hundreds of thousands of stories and make them freely available on the World Wide Web. If we are successful in publicizing this searchable cancer experience listing, and gather the stories of most people who are treated for cancer, we will have a valuable resource indeed. To the degree that each visitor participates, the site has the potential to permanently change our approach to cancer.

The recently added Chat Rooms, used in conjunction with the Searchable Listing should allow each of you to find others and form groups. This Shared Experience website is merely an island of potential, growing itself through the contribution of each visitor. There is no doctor, hospital, company or other group creating and maintaining it. The webmaster keeps upgrading the technology to mak it useful for you. So grow the garden....if you search, leave footprints.

Help make this web site a successful and empowering refuge by encouraging people to visit Shared Experience.

Home | Search Experiences | Add Experience | Patient Diaries | Why Share? | Volunteer
You Can Help! | Mission Statement | Disclaimer | Email Me