My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Sunday, December 14, 2008

Connections

I'm sorry I've not posted recently. Life gets busy and sometimes it seems there are too many priorities. I've been working lots, plus getting ready for the holidays. My todo list has grown...I need to better organize my time! I believe I read that you should post to your blog about 3 times a week....in that sense I am very delinquent.

I follow several other blogs now....blogs of cancer patients. I get worried when they don't post for a long while. It's strange, I feel like I know some of the other bloggers as they share so much on-line....so when I know they have cancer and haven't posted in months, I get worried. I feel a loss when a blog just ends without a goodbye, without an ending. Some who blog know they are terminally ill, and I appreciate it when they've shared access to their blog so that we can know when they've passed. I should probably share my blog password with my best friend in case of emergency!

The on-line cancer world is a different kind of cancer limbo sometimes. Cancer blog limbo. Electronic relationship limbo. Internet forum limbo.

I've been thinking lately. I've communicated electronically with about 500 appendiceal cancer patients since publishing my web site. I have been able to meet two patients I've met electronically in person, and it was so great to do that. I met one recently in Washington DC. We had breakfast together and talked for hours. Appendiceal cancer patients kind of feel like family to me now, we share a lot. I also love the cancer survivors I've been able to meet at conferences via the Scientist-Survivor program. We share a history, and just like history binds family members, it binds cancer patients. We connect.

In the world of email and Facebook and cell phones and text messaging, we communicate a lot more now, I think, but I wonder about the quality of our wireless communication. Now what I've really come to treasure is realtime personal connections, complete with body language and facial expressions. Sometimes for me electronic communication is like seeing a photo of an oak tree vs. feeling the roughness of its bark, touching the tree’s leathery leaves, smelling the woody smell and hearing the wind rustle through it's branches. The picture isn't the tree. I much prefer connecting like I did yesterday with a new friend over breakfast, we shared a couple of hours of great conversation about things that matter, complete with body language and facial expressions and "vibes".

In a strange kind of coincidence, a columnist for our local paper recently published a book, I think his first book, "Connections". I like the columnist and regularly read his column (and blog). I met him when he came to our soup kitchen last year twice. The premise of his book as stated on the book’s web site is: "This primal need – which is not only timely, but timeless – is our original wireless connection, with face to face value and eye to eye contact. No need for Blackberry batteries, a strong cell phone signal, or a laptop computer."

When I read that on his book's website, the premise “connected” with me, so I ordered the book. I've recently come to truly value that "original wireless connection", so the book was timely in my world as I'm truly feeling the limitations of "electronic" connections lately. I've wondered if it was just me or if others feel the same in this new world of wireless communication? I'm looking forward to reading the book.

I took some time to really look at the book's website after I ordered the book. Guess what, I'm in the book. On the web site, the link to the book excerpt is about me... me who feels sometimes disconnected lately in this electronic age. I hadn’t known that when I ordered the book. Kind of ironic.

Another kind of irony I’ve witnessed in the cancer community is that very few of us want to join support groups, but all of us love to communicate with each other. Sometimes those who love us but who have never had cancer in some ways can’t understand us. We find we cherish connecting with others in our family of cancer survivors.

Lately I've been thinking about planning a real time get-together for appendiceal cancer patients I've communicated electronically who live in my general area, about a 100 mile radius. There are 4 or 5 of us. I also want to start a real time empowerment group, not a “support group” for cancer patients at my large local oncology practice. Realtime empowering connections for cancer patients.

I think electronic communication serves a purpose, but we cancer survivors need to connect in a real sense sometimes.

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