Serendopeity

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 !!!

 

Links:

 

Cathy’s EC Café www.eccafe.org

 

ACOR   www.acor.com

 

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

 

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2 responses to “YOU ARE NOT ALONE

  1. Barb Price January 24, 2009 at 4:43 pm

    Nancy,
    I luv the blog, great idea! I’m happy to say that we made our connection on the EC Listserve and I don’t know what Steven, my brother, and I would have done without you.
    I remember your post, you were just as scared as we were and we, too, were looking for information and truly shocked when we saw the stats, not good.
    The connection with you was instant–you and Steven had alot of things in common, both early 40’s, both fighters for sure.
    I remember the phone calls and emails, they all helped so much.
    I remember you having your surgery, you called me from your hospital bed and you sounded GREAT! I couldn’t believe it.
    I remember you calling me while I was on my way to Ventura, Steven was to have his surgery the next day. You gave both of us words of encouragement and hope.
    I remember the next 2 1/2 years, both of you trying to keep the Beast at bay and sharing your chemo and radiation experiences. Unfortunately, Steven was not as lucky as you and he died on August 26, 2007. Telling you was one of the hardest things that I’ve ever done.
    Speaking at Steven’s funeral was the next hardest thing, but I did it, I did it for him and for his fellow firefighters.
    I am glad that you have survived this horrible disease, your survival gives others hope and it makes me feel proud that I know you, Nancy!

  2. serendopeity January 24, 2009 at 6:25 pm

    Thank you Barb. I think in all of the people that I have been at the ECG with losing Steven cut me right to the core. I remember crying, out of sadness for sure but also out of guilt. I had called Steven that afternoon and got no answer, tried your cell and same, no answer…
    then I got the email…
    I am so glad that I got to know Steven. I will always remember talking to him after his trip to Vegas and his story about eating,eating and more eating and sucking back Southern Comfort. Anyone listening to our conversation would have thought we were just a pair of giggling teenagers LOLOLOL. I miss him too – I miss laughing with him. But I know that somewhere there is a firefighter looking down on us from way up above and smiling.
    If one good thing came out of having EC it was meeting you and Steven. It’s funny how something as horrible as having cancer can make people such good friends. I thank you for being mine.
    Nancy

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