PA/NJ CC Connection

Posted by on Sep 21, 2013 in Uncategorized | 0 comments

PA/NJ CC Connection

On Thursday, Sept. 5th, 2013, a group of wonderful people met in a diner outside of New Hope, PA. We were virtually strangers, from different areas of Pennsylvania and New Jersey. The one thing we all had in common? Cholangiocarcinoma. 5 of us are patients; one of us is a former caregiver who still keeps in touch with our CC family.
By screen name, from left to right, we are: Clawler, En11, Karen, Kris00j, Mcwgoat, Rvb. I’m kris00j…  I am the one in the back of our group photo.
I’ve been a member now for 2 1/2 years and have tried to meet other cc patients on the board. Previously I met Kim, who has since passed on. I also met Pam and her wonderful Lauren, and Lisa Craine, and Tiff, before her transplant!
My goal was to have a meeting with those of us in our local community and start a support group. I am no psychologist, nor do I have any training, but I thought it would be good to connect with others who are battling, and see the different approaches to this darned fight.
Of the 5 patients, we presented from asymptomatic to having symptoms. I made everyone smile because I showed up on my scooter! (It’s a 400cc, so it isn’t small!)
We all shared our “bios”. There was some sadness, and lots of encouragement. Then we jumped into the fun stuff: plans! There were many! En11 has barely been home, he shared his travel schedules! En11 has travel plans every off week. And Clawler has plans to leave for California the day following his chemo. Me? I am making plans to visit my parents.
It was wonderful to see and hear positive energy shared and how we see others trying to live life to the fullest. This fight certainly does change things.
I would like to keep our support group going, every month or two. I think it could be a wonderful experience for all of us.

A few comments from the others:

Clawler wrote:

“Thank you, Kris, for facilitating this meeting!”

“Today was the first time I met anyone with Cholangiocarcinoma since my diagnosis in March. I was concerned that our meeting might turn out to be depressing, but that certainly was not the case! I was struck by how positive everyone was. It’s so nice to see that all of us are continuing to live such full lives despite this challenge– traveling, laughing, working (a little), and helping our family and friends cope with our illness.”
“Thanks for sharing your stories and treatment experiences. How refreshing to discuss all of this with people whom truly understand. I look forward to seeing you again.”

Rvb shared:

“Kris, you are the bomb!  A wonderful idea that came at just the right time with a very nice turn out.  It was such an intimate group in a quiet enough setting that I think we got to know more about each other than had there been a much larger turn out.  It opened the door for a larger turnout, which I hope, will be the case next go ’round. “

“It was a true test of the good time we were having that we lost track of the time if it were not for Eric.  They say time flies when you are having fun.  And as Chris mentioned, it was fun, not depressing at all.  How could it be depressing when we are all fighters and survivors or their loved ones.”

“Well, best wishes to my new friends.  And same for a peaceful week ahead.”

Mcwgoat shared:

“Well said Renee!!!  I look forward to our next get together!!!”

And En11 said:

“What an inspiring group of people!  I needed to know there is hope for us…and discovered courage as well.  Thinking of you all and I looking forward to seeing you again in a few months.  Thanks Kris for taking the lead!”

I would like to personally thank all of you for making the trip to meet with others! I know for a couple of you it was over an hour. But from the laughs and cries we had (mostly laughs) I hope everyone feels as I do: that it was well worth the effort!
And while I love the kudos, it was also very inspiring to me, to meet others battling this same disease. I hope at our next meeting there will be a few others who will join us in New Hope, PA.

We would love to have another PA/NJ CC Connection meeting in November. Either in New Hope again, or possibly in Peddlers Village area, where we are bound to see scarecrows or holiday decorations.  I welcome your suggestions. I am all ears!

Please feel free to email me at kris00j@gmail.com with your availability, so I can hopefully find a great date for most if not all of the “locals”!

Until next time, be well.
Kris / kris00j

 

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