The faculty of making stupid discoveries by accident. The name of my first Fantasy Football Team. Neither of which have anything to do with this blog. I just like the word. Deal with it !!!!!!
YOU ARE NOT ALONE
YOU ARE NOT ALONE
The night of the day I was diagnosed with Esophageal Cancer I sat down and cried: real tears, real racking sobs.
I called a couple of people and told them, remaining calm as I did so. I said that everything was going to be all right, not to worry; it was an early stage, blah, blah, blah. I told them I was going to fight this with everything I had and would not go without a screaming, kick ass attitude.
I didn’t know what else to tell them, I didn’t know anything else about Esophageal Cancer and it would be two days until I would see someone who would plot out the rest of my life…
I fired up the PC and got online. At the time I had dial-up service. Not by choice, it was the only thing available in the area in which I lived, and truth be told, the ISP should have been paying me for using it, it was that damn slow.
I typed in Esophageal Cancer in Google. Holy crap, there were over 500,000 hits. I figured it was going to be a late night.
I went through each one, a thirst for knowledge over shadowed only by a thirst for coffee (some things never change). A pot later the only real thing I knew was that I had drank too much coffee…
Everything I read was horrible. The stats all pointed to an immediate death sentence. Surgery was brutal, second only to transplant surgery. Chemotherapy was antiquated – there were no real drugs for “gastric cancers” so the Oncologists used the next best thing. All the Chemo drugs I looked up had the same disclaimer “May contain carcinogenic compounds.”
HUH!!! The drugs that they used to fight cancer may cause cancer? WTF?
Radiation cold help shrink a tumour, it was mostly palliative.
On page 38 of my Google search I found a place called Cathy’s EC Café. When I opened the site I was amazed. There was real information. Not from the NCI or the Cancer Society, but real people. Real stories about real people. Recipes, links…OMG, I hit the mother lode.
One of the links was to ACOR. ACOR is an acronym for Association of Cancer Online Resources. They tout themselves as being the “ The free online lifeline for everyone affected by cancer & related disorders.” And believe me they do not fall short of that.
Through ACOR I joined a Listserve for Esophageal Cancer. The listserve is all email based. You can lurk or you can participate. It is hosted by Marc and Tammy Wolfgram. Marc is an EC survivor and Tammy is his lovely wife. Tammy participates all the time while Marc takes a back seat and rarely jumps into a conversation unless it is an Admin problem or to quell fears of those (like me) who still have issues on whether we will survive long term. He is a 13-year survivor. The Wolfgrams also host Cathy’s EC Café, so you can be sure that their dedication to both is heartfelt.
Joining the list was easy. I applied and was sent a very welcoming welcome message that asked me to supply some information. Pretty basic stuff – name, age, where from, patient or caregiver etc.
I posted my information and with 24 hours I had emails from all over the world, all from people who like myself were battling EC. My post was that of a scared little girl (I was 44 at the time). Each of them offered me something that I needed. The most important thing that I got from all of them was:
“YOU ARE NOT ALONE”
And I wasn’t. In one short email I had made friends with people just like me. Their outpouring of friendship, camaraderie, and advice was awesome. It was like meeting a group of friends that I never knew I had. I had allies. They were from as far away as Australia and as close next door – literally.
Four years later I still consider some of them some of my closest friends. They are a part of my family, a part of my existence. Although I will never know for certain what would have happened had I not found them, I am pretty sure I would not have become the person I am today.
I have had the absolute pleasure of meeting some of them in person. It’s actually funny when you meet someone you don’t know but “know” better than some of the people you see on a daily basis. There were no feelings of shyness; we all had something in common.
Over the last four years I have stayed in contact with the Listserve. I patiently await its arrival in my Inbox on a nightly basis. Some days it comes twice – when there is a flood of activity. Some days it is only one or two posts. However, whether it is 2 posts or 20 I can depend on them opening my eyes to yet another facet of this disease.
Survivors, patients and caregivers fuel the list: some of them doing so since the list’s inception. The list is the “Been there, done that” place to be. Whatever your EC “status” is you are most welcome to be there. Anytime I am asked how I survived the first thing I tell people is about the list. I have recommended it to all of my Oncologists and I know that 2 of them are regular lurkers.
The composition of the people on the list is amazing, proving that Cancer in anyway shape or form does not discriminate. We have Doctors, Lawyers, School Teachers, Professors, Fire Fighters, Police, Moms, Dads, Grandparents and even Great Grand Parents, Widows and Widowers. They come from all over the globe: each little corner of the world represented: and each with a different perspective of EC and the battle to beat it.
Sadly, there are some that are no longer with us. EC is still a deadly disease, (rising from 7th place to 2nd place in the race to be the number one cancer killer.) but survivor stats are becoming higher each year.
If you or someone you know and love is facing EC know that you are not alone. The links below will take you to some of the most informative sites on the internet where you can find help and more importantly HOPE !!!
Cathy’s EC Café www.eccafe.org
Esophageal Cancer Awareness Association www.ecaware.org
Esophageal Cancer Awareness Association on Facebook http://on.fb.me/ipJIW8
Esophageal Cancer Action Network http://bit.ly/cl3Sm1
Esophageal Cancer Awareness (an open FB group) http://on.fb.me/mtRn68
Esophageal Cancer Education Foundation www.fightec.org
Canadian Cancer Society www.cancer.ca
American Cancer Society www.cancer.org