• Registered: Sat, 28 May 2011
  • Posts: 65

Topic: Can we provide a beacon for those in this battle?

Hi folks!

It has been a while since I last posted.  My brother Bruce (originally diagnosed with CC 3 years ago and given 4 - 6 months to live) is still hanging in there.  It has been a wild ride!  He is actually back in the hospital as of last evening with what appears to be an infection, so any prayers that can be made are appreciated.

His complete story is posted here:  http://www.brucehaney.org/Page/42
I also posted about what we have learned over the past 3 years here:  http://www.cholangiocarcinoma.org/punbb … hp?id=6261

What I was hoping to accomplish today...as a way of generating hope for those in this battle...was to provide a list ("beacon of hope") of those who have been able to continue this fight past the 3 year mark.  I think that there are several people posting on this board who have hit 5 or 7 year milestones...and I think that we have someone on here who has made it to 15 years.  Can we get a list together of those who are hitting these big milestones?  It would be good for everyone who is starting out fighting this horrible disease...and for those in the battle for several years...to know that there is "hope" always.  I told my brother several years ago about the person on this board who hit the 15 year milestone, and every so often Bruce says to me, "I want to be like that guy that made it 15 years." 

Hope is a precious weapon in fighting this battle...and I am hoping that we can provide a beacon of hope to all by providing a more comprehensive list of those who are maintaining and treating this disease more as a chronic illness.  Please reply to this post if you have hit a big milestone that we can share...

Thoughts?

God bless all of you!!!

Patti

  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,199

Re: Can we provide a beacon for those in this battle?

Hi Patti, good to see your smiling face again and I sincerely hope Bruce gets that darn infection out quickly! We have a lot of hope on this site but adding more hope is always a good and welcome commodity. My Teddy was a 5 1/2 year survivor after his double Whipple in 2005. I attribute it to his attitude, hope and faith. We love threads of HOPE!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Sat, 28 May 2011
  • Posts: 65

Re: Can we provide a beacon for those in this battle?

Thanks and bless you, Lainy!  <3

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Can we provide a beacon for those in this battle?

Patty…how nice it is to hear from you again.  First and foremost, congratulations to Bruce for having passed the three year mark with this disease. Two thumbs up, dear Bruce.

Several of our patients survive for years to come and beyond, and they post on this site, within their threads.  We have not yet found a way to track this, but I like the thought of compiling a list for this purpose.  The discussion board always is open to make changes in order to best serve the patient community and the best input so far has come from the members of this site. 

Patty, why don’t you start a thread by asking the question of survival?  The good news section provides the perfect venue for just that.  As time goes on, we can continuously revive the post in order to keep it going.  What do you think? 

Oh, don’t want to forget about mentioning your wonderful website. I read it on a regular basis however; I am wondering whether you would care to place it our blog section also? This would allow others to easily access it via our site.


Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Registered: Sat, 28 May 2011
  • Posts: 65

Re: Can we provide a beacon for those in this battle?

Hi Marion!

Thank you for your great suggestions!  I would be happy to start a new topic in the Good News section.  I will title it:  Survival...Please tell us your latest milestone.

I would also be happy to add the information from the BruceHaney.org site to the blog section as you suggested...especially if it is helpful to anyone.  Thank you for mentioning that and your kind words.

I must say, once again, how wonderful it is to have this website available for those of us looking for answers for our loved ones or ourselves.  Thank you, Lainy and the team for keeping this going...

God bless,

Patti

  • Registered: Fri, 12 May 2006
  • Posts: 8,157

Re: Can we provide a beacon for those in this battle?

Patty...good job.  In order to keep it active, we must remember to revive the thread periodically.
http://www.cholangiocarcinoma.org/punbb … 543#p65543 
Can't wait to see the thread grow. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Akron, Ohio
  • Registered: Mon, 11 Apr 2011
  • Posts: 407

Re: Can we provide a beacon for those in this battle?

Patti, I love this idea. I would love to hear what they are doing to beat this disease.
Lisa

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