Thank you for this website.
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Pam, what a beautiful post. You are so right to thank all of those who give their time and share their stories and wisdom. I too am grateful beyond words. I use this website to research, ask advise and vent when needed. I read uplifting posts and relay them to my husband (like Lauren, he does not want to be on the website). It’s often difficult to talk to friends and even family members so this website has been a Godsend to me and I’m sure too everyone who frequents it.
So… thank you CC survivors, caretakers and friends.Hi,Pam
below is the copied message that I send to your daughter,(at first I think Laruen is your sister,my mistake,sorry.)
God bless.
Hi,Laruen,
I want to talk to you directly .
You are young by the population standard of CCA patient(50-70).
I learned your situation from your mom Pam’s message thru cholangiocarcinoma.org web site.
I am a pt. of 31month of CCA,resected twice. and had chemo for 16 months.It was not a fun thing to do.I am 62.and i am consider I will need chemo therapy for a long time to come.I regard this disease as a CHRONIC disease like diabetes or high blood pressure. In this way I can manage this horrible disease day by day;going to work partime in my medical profession;helping out on the cholangiocarcinoma.org website;and not letting this disease take control over me. The journey of cholangiocarcinoma is a long and winding road that requires patience,knowledge and courage to travel.
The field of cancer research and application are changing fast;ASCO just released their goal for the next 10 years;that is in 3-5 years;all of patients medical records will be centralized;molecularly-targeted therapies will be the main stage of cancer diagnosis and treatment in the next decade;that means treatment is more personalized and specific than what is doing now.The hope of getting a cure and/or a much better treatment plan for different types of cancer will be at hand ;so hang in there and be active;do not let minor bumps in your journey of CCA to discourage you.
What i am trying to say is this,Lauren, always be hopeful even in suffering;for the Love of God will not disappoint you.
Since we both had the same disease and if you like,you can write to me directly of thru your sister Pam thru the CC web site.
God bless.Pam,
I am so glad you joined and look forward to reading about Lauren’s updates. I agree, this website has been so very helpful to me. It’s so nice to read other’s experiences and talk to people who actually understand what your going through.Take care!
SusiePam-you make me miss my mom. My mother had passed away a year before I was diagnosed. I have always thougth of it as a blessing, because I couldn’t imagine her having to deal with, I don’t know who’s heart would have been more broken . I do know she (even at 81) would have been my biggest cheerleader. I read your posts here and at caring bridge and know how lucky you and Lauren are to have each other.
I also know how hard this site is when you are fighting. I know though how much support, expierence and information by those who have and are dealing with it helps, so thank God for all of us. I post on here so people know there is HOPE. I am a CC survivor and people need to know that we do exist. Thanks Jim and all others who remind us everyday, “cancer free” is an option with a CC diagnose.
Please encourage Lauren to read my story, and Jim’s story for HOPE.
Lots of prayers for your family-CathyDear all……everyone on this site is responsible for the success this board has achieved within the Cholangiocarcinoma cancer community and within the medical community. We have successfully crossed international, religious, and cultural borders solely by focusing on the one issue dearest to our hearts
Pam, I found website over a year after I had a resection and share your opinion of this website. I’ve emailed, spoken to and met a number of truly wonderful people as a result of having cc. I found this website quite by accident when I Googled ‘Cholangiocarcinoma’. The disease is sufficiently rare that it’s hard to find good information, and this site is a god send to caregivers and patients.
I have trouble spending a lot of time here, but do come fairly frequently. The people here truly understand and are caring. Bless them too.
Pam, you are just the most special person, yourself! I often post on here that if our Members ran the World what a great World it would be! Different opinions, different ideas, different religions and races and yet all caring and loving each other. Perhaps that is what draws me here. Lauren’s feelings about this site are much the same as other patients who do not want to come on and understandibly so. Teddy NEVER came on (he was not a computer person) but I told him all that was going on and the things that were being said. Our CC patients whether they post or not are really the most courageous people in the world. AND not enough can be said about our Care Givers who not only take care of their loved ones but then come on here and try to help others. This whole site gets the biggest award ever, as far as I am concerned. Really restores one’s faith in humanity.
Hi everyone,
I just wanted to say Thank You to whoever started this website. It has provided me with so much information, support and comfort. The thoughtfulness of all of you is neverending. Besides all the wonderful posts on here and on Lauren’s caring bridge site, I received an e-mail awhile back from Ichase. She is a mom that lost her daughter to cc at the beginning of October. Going through so much grief of her own, she took the time to send me an e-mail to tell me she is thinking about and praying for my Lauren and to tell me her Sara’s story. I could not believe how sweet and caring that was. It makes me cry right now to even tell the story. Lauren just received an e-mail from a young mom named hope and grace on this site that had lost her mom to cc a while back. It was beautifully written and meant so much to Lauren. She got on this site for a minute and read some of hope and grace’s posts, but they made her too sad. Lauren cannot bring herself to read anything about cc. I don’t blame her or ever push her to do so. I just told her that I read everything I can find so I am informed and will know what to do if certain things happen. I am truly amazed that there are such dear, sweet, people in this world. After being cut off in traffic, being treated rudely in public, etc., etc., it is easy to lose faith in your fellow man. My husband and I have raised our children, and we ourselves, try to follow the golden rule. You all have restored my faith that good people are still out there. God bless you all. I love you!
-Pam
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