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.

Tuesday, September 30, 2008

The Beginning of the Beginning

Once I had a basic idea of how to put together a web site from the class, I did on-line tutorials to learn more. I learned about web hosting and code and templates and tables and hyperlinks and frames and FTP. I became obsessed with putting together my web site, Appendix Cancer and Peritoneal Surface Malignancies. I was driven. I had to learn a lot to do it.

The toughest part was re-reading all of the medical literature I'd read initially when I was diagnosed. The horrible statistics, the grim predictions, the detailed surgical reports. Emotionally it took me back to the horrible feelings I had when I first learned what I was up against. I thought of those who suffer post traumatic stress after returning from war.

Interesting, many who have been through tough cancer battles are now being diagnosed with post traumatic stress syndrome. I recently read of a breast cancer survivor who decided one day to wear a scarf. Turned out the scarf she chose to match her outfit was one she had used to cover her baldness while on chemo. On seeing the scarf in her drawer, she became physically ill. In the end she disposed of all scarves she had worn during that time. This is an interesting article, Post-traumatic Stress Disorder and Cancer . I've since communicated with appendiceal cancer patients who have been diagnosed with PTSD. Constructing the web site was hard enough for me emotionally that I joined a support group for the first time.

I published my web site early in 2006, almost the anniversary of my 5 year survival. I had a contact email on my site, but didn't know if I'd hear from anyone. It just made me feel I'd done the right thing by making the information I knew accessible on-line. I didn't really plan a life of cancer advocacy after that, I just wanted to create and publish the web site.

But then doors opened, then my world expanded. I think I discoved my purpose.

2 comments:

Graham Davies said...

Carolyn, you wrote:
"My best place to worship still is not in a church, but amid beautiful trees and wildflowers and lakes, where I am surrounded by the works of my intelligent designer. That's the first place I went when I received my cancer diagnosis, the place I go before every CT scan, the place I go when I am afraid or feel alone."

So do I! Every Sunday I take my dog on a walk that passes through what I call typical English countryside. I sit for a few minutes on a bench in the garden of the quaint little country church in which my elder daughter was married and I say my prayers, thanking God for keeping me safe for a another week. I regained my faith after I began to recover from surgery. I never really lost it, I guess, but I had become cynical and apathetic towards religion. Now all that has changed, and I no longer fear death.

As you know, my story is on my website, and I update it regularly:
http://www.camsoftpartners.co.uk/pmpsurvivor.htm

Unlike you, Carolyn, I did not have to learn about Web design as this has been part of my job ever since the Web first went public. I train language teachers to use computers, and I maintain this website:

http://www.ict4lt.org

Recently, I have developed an interest in virtual worlds, especially Second Life:

http://secondlife.com

I maintain a "house" in Second Life, and I regularly explore other locations. Around six weeks ago, I discovered that the American Cancer Society (ACS) has a presence in Second Life. I dropped in on their location and "met" three of their representatives. The conversation turned to PMP and they asked me if I would be prepared to talk about it during one of their online broadcasts. They had never met anyone with PMP before, so I willingly offered to do the talk and provide them with any additional information they needed.

I have written introductory tutorial materials on accessing Second Life:

http://www.ict4lt.org/en/en_mod1-5.htm#secondlife

The materials are geared towards language teachers, but they are also of general use.

Graham

Carolyn Langlie-Lesnik RN BSN said...

Hi Graham!

Great to hear from you! I love your web site.

I'll have to check into secondlife.com. Sounds interesting!

Glad you are continuing to do well, I'm sure you are an inspiration to many.

Take care,
Carolyn