Should Have Posted Long Ago
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Larry…..I agree with your comments especially, the medical advise issue. We have a few nurses on this board and others in the medical field who have been great in passing on their knowledge but, there are no medical doctors on this site. Ultimately, the treating physician will discuss and order treatment plans with the patient. What brings us together is the disease of Cholangiocarcinoma/bile duct cancer. We are global and are growing daily and we pass on to each other what we have learned; all the while we support each other, care for each other, and simply, are there for each other. Being that Cholangiocarcinoma is a rare disease, it brings with it that it is a lonely disease. Very few people understand the symptoms and progression of this disease let alone can relate to the impact it has on our life. On this board, all of us know and what we don’t know, we learn from each other. This has contributed to the readily available wealth of information. Although, none of us are licensed psychologist, we are able to share our thoughts, fears, joyous moments and doubts and everything accompanying the diagnoses of Cholangiocarcarcinoma.
The one doctor we do have though is Dr. Giles and for that we are very grateful. You can find him on top of the page under Patient Support. Dr. Giles is a licensed psychologist and he has been an incredible resource to us. Anyone can reach out to him and you may too. Also, when perusing the website you may want to take a close look at the links to other organizations including, the oneHi Larry. Teddy & I are in Sun Lakes and I have a daughter in Gilbert off Elliot & Cooper at Neely Ranch. The munchkins go to Mesquite High School. In fact we just left them after watching the Cards beat the Pack. Originally we are from Milwaukee. If you are so inclined you can read up on Teddy under my name, Lainy.
We do not have a support group per say. I have met a couple of members in Phoenix. And last month Barb from Glendale CA stopped by with her husband.
If you want to talk we would be happy to meet with you and just talk. If a support is more what you need all the hospitals have support groups. Very good groups. Just send me an e-mail if you would like to get together. We could meet for dinner or a cup of coffee. I hate coffee make that tea for me!Thanks to everybody for your warm greetings.
You are right that I have unique experiences (as we all do) that might help someone going through similar situations. That is what was always so helpful to me in using this forum, other’s experience. I will contbribute all I can short of giving medical advise. I don’t beleive it is my place to do that. But I can advise what did and didn’t work for my father medically and medical institutions I am familiar with. We made many trips to the Mayo Clinic in Rochester despite having a Mayo so close to home.
For you other Arizona residents, I live in Gilbert. So we’re just about neighbors, small world. By the way my father lived in Las Vegas so I spent nearly all of 2009 away from home. Do you all ever get together or aware of support groups? Not neccesarily a CC support group (that’s what this forum is) but a grief oriented group. I could use it.
Thanks everyone.
Larry
Hi Larry,
Welcome to the site although I am sorry that you have to be here. And I am very sorry to hear of the loss of your dad. I lost my dad about a month ago to CC so I know how you are feeling right now. I was my dads carer throughout his fight so I also know what you have gone through with this.
I hope you will keep coming back and posting as you will have a lot to add and will be of help to others who are going through this fight.
My best wishes to you and your family.
Gavin
Larry,
Your story isn’t too different from many who are here. I came late in the game for my dad .. but once touched by cc it’s hard to step away. I too continue to come because I continue to think about and pray for many others who are here. And, I too am in Arizona – not far from Lainy in SE Chandler.
Bz
Welcome, indeed, Larry!! I’m so very sorry you’ve lost your dad & am so grateful that you’re joining us to share your knowledge & support. I’m sure he would be very proud of your thoughtfulness to others in the same positions you & he found yourselves. Like you, I’m a carer & I look forward to talking to you again soon.
Julia
Larry….I echo everything Darla and Lainy have said and I am deeply sorry for the loss of your dear Dad. You may not be aware of the fact that you have acquired knowledge and wisdom unique to your situation; information and experience which may very well benefit someone else touched by this cancer. I find that each and everyone who contributes to this forum may it be, for advise, support, information sharing, etc. is helping someone else cope with this disease. I appreciate your gracious offer and am looking forward to your postings.
All my best,
MarionHi Larry,
Welcome! I am so sorry for your loss and am glad you were able to find the answers you needed here and have decided to join us. I found this site a few days after my husband passed away and have been coming back ever since. I have found everyone to be so helpful, supportive and comforting. I hope you will continue to come back as I am sure you have a lot to add and contribute as do we all. I have found that by helping others, I am helping myself, too. I hope to see you around the CC neighborhood for a long time to come.
Take care Larry.
Darla
Dear Larry, Its never to late to come here and reveal yourself. We are so very sorry for the loss of your father. Our prayers and thoughts go out to you and your family.
Where are you from in Arizona. We live in Sun Lakes.
Please stick around our Board now and come visit anytime you wish, you are Family.Hello Everyone,
I have been visiting the site for almost a year now and only just registered today. This is my very first post. My father was diagnosed with CC in early 2009 and passed away on November 17, 2009. I miss him so much.
During the time he was sick and fighting this terrible disease, I used this forum extensively as reference. Everything my father dealt with during the stages of his disease I found others on here experienced as well. It was very helpful to my family and me to learn how to help my father through all your experiences. I will be eternally grateful.
Now, I can’t stop visiting the forum. There are certain ones of you I follow and pray for all of you. Being a caregiver was difficult enough, I have the greatest respect for those of you who are personally fighting so hard and posting on this site. I’m not sure I could be as strong as you all are.
I am going to try to start participating, even if all I can offer is encouragement. It’s the least I can do. I owe you all so much.
Thanks.
Larry
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