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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
Por favor publique sus preguntas en Español y un intérprete le va responder.
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Posts found: 1 to 25 of 73
I found a very unique volunteer job for someone who loves others...a volunteer "rocker/walker" at the pediatric ward of our hospital. I was admiring a tiny bundle of love and expressed my thoughts to the gentleman giving the bundle a walk. He shocked me when he replied it was just his night to be a rocker/walker to babies who have no one. He went on to explain that often parents are working or perhaps ill also and the tiny ones need human contact and then he grinned and said he loved it! The little bundle squirmed and he said try it sometime.
Perhaps you could do something for a child that would give you something to hold, comfort, and care for for a few minutes. It would be a way to help without replacing your Wayne and could give you comfort.
I have thought of this often, I plan to do something after I am relieved of my caregiver job because I can't stand the thought of 24 hours of missing my loved one. There has to be someone I can hold and cuddle and they would be providing me a much needed warmth with my replacing part of my "empty hours" with someone who needed me.
Charlea, One day at a time, but make future plans also. Like they say, no expiration date and no Dr knows the details of time. They can make educated guesses from general evaluations, but each person is individual and each person has the will to live (some strong and some not so strong). Just enjoy all of the good days and do things you enjoy, make memories with your family that will sustain them later when your gone.
Ironbark, I am so sad for you and for Lainy. I appreciate all of the thoughtful, personal posts that have given me insight in areas that I will be facing soon. Your selfless sharing is a great testimony to the caring person you are. My thoughts and prayers will be with you and all of the cc family in our holiday season.
Lainy, What other proof do we need? Our lives will be touched by those we love, both life and death. It really is a miracle. You have been blessed.
Kimmie, You said for a lot of us today. I have had people see Mom at the hairdressers or restaurant on a GOOD day and then later hear reports of her "recovery". It is amazing what people will say and think. Take care.
Lainy, What a love story! You and Teddy to the end...and then once again in memories. Please accept my sincere wishes for strength and health to complete this story for all of us who have admired both of you so long.
Andie, You might take names and phone numbers and when your Mom wants to visit-call and plan a short trip. The sick need to get out as well as the caregivers! Maybe a short trip on the way to the Dr. another day a trip to the pharmacy another visit to another friend! Sound like a plan?
Or you can also call and tell people when she feels up to a visit-the pop in on the spur of the moment is for family only at a time like this! My opinion.
Andie, I asked Mom what she wanted and it was peace and rest. When she had company over she would get agitated because she was always the "hostess with the mostess". You were offered food, drink, conversation, trips, and were entertained. She doesn't have the energy now and states that most didn't come before she got sick why should they come now.
A couple of close friends and all of her family are welcome and we have just let the community know she is not receiving company at this time. Phone calls she takes when she feels like it and I relay messages other times. Those who have a problem don't know what sickness is and they can deal with it. We do the best we can for her comfort and health.
HI, I am from north Florida (Gator country) and my Mom was idagnosed at Shands UF in Gainesville, Florida. I am not familiar with your Dr or hospital. What city is it located in? Great physicians on the transplant floor and we wouldn't have Mom if she had not gone there.
Wishing you luck and good news with the visit to the surgeon.
How in the world can a needle biopsy spread cancer cells and the brushing not? Seems to me the brush could dislodge many cells which could migrate to other areas of the body. Sometimes I just don't understand all that I read. Help!
You'll get through this and have wonderful memories and the comfort of knowing you were there for Teddy every step of the way. Your last days of this journey so vividly bring back the experience Gary went through 13 months ago. Once he was admitted to Hospice things went very quickly, but by then everyone in this situation realizes that is inevitable. Please don't torture yourself with the idea Teddy isn't being cared for in a loving manor. I'm convinced that at this point of his journey he has one foot on earth and one in heaven.
My sincerest thoughts and prayers are with you both. You have inspired all of us. You can do this! Love, Elaine
Lainy---What an amazing post! This is truly words of wisdom for all of us facing this situation. I hope I will remember these sincere words of faith when my time comes to make such a tough decision for my Mom. Take care and take comfort that you have been able to do so much together in Teddy's last days at home.
Michael, My heart breaks for you. It is so sad to have someone you love taken too soon. Keep going to counseling and reading posts on this site. Everyone posting is a caring and loving individual. Everyone gives you support and love. Your Mom is probably just as hurt and maybe you can talk with her also, because together you might be able to help each other with your thoughts and remembering all of the good times. Take care.
Snezzie, I did go to Dr Oz's site and did a question on putting this subject (cc) on a future show. I got an auto-reply so hopefully if we get enough people to post, they just might do a show on this. We have survivors, what can be more positive than that. We just want better, faster treatment and lots of survivors.
Thank you ladies for helping me understand what I will be seeing and trying to do in the future. I have learned so much from this site and it is not all "education" so much is comforting knowledge of how to cope and how to do so many things. I do not know how others handle disease without a site and online friends who know the pain and frustration you are dealing with.
Bless you Lainy and missingwayne, I know it is so hard and you are both so brave and capable. Your thoughts, information and posts have been helpful to so many. Thank you and all of the others who post.
A baby, just in time to prove love and life go on. Congratulations and best wishes for all of the family and Grandpa also. This will surely lift his spirits.
My youngest grandchild will love the scene. Thanks for the update.
Love the tree. Life goes on...just look outside at the seasons!
My two cents on the subject---since some have tried to contact Oprah and have not had any success in getting the cc recognized on her program. Has anyone thought about the Dr. Oz Show? It might be worthwhile to contact him.
Maybe everyone is intimidated by the "knowledge" that the whole world will know we are ill. Even with the incognito names you really feel exposed. You get poked and proded by the Dr and nurses and wear a silly chilly gown in the hospital and after all of that sometimes you just don't want to discuss your problems with anyone else.
Molly, I wish peace and rest for you and your family. Take care and know you are in my prayers.
Your local hairdresser should be able to get you a weekly rinse that would cover the white and blend with the ends. My Mom gets one that is done weekly when she gets her shampoo. Just ask, buy the bottle or half a bottle and go for it...it washes in and washes out at the next shampoo.
Since I live in north Florida, I don't see snow just frost! Maybe ice occasionally but I wouldn't have clothing for your weather so maybe I should stay out of snow country. It really is beautiful. Loved the photos.
Yea, what a great idea. Our work group does a toys for tots gifting at Christmas, but for my birthday in lieu of present I could request a donation to cc. Or on the community cancer walk, I could sponsor a table and group of walkers for donations to cc. Just thinking out loud...but I love the ecards, I have sent some already and the more designs or messages, the more awareness of cc disease.
My Mom takes Marinol and that helps her nausea. We were on twice daily, but side effects were yuck. Once daily is enough. Wish I could help more.
Hang in there and talk, talk, talk to the Dr and nurses-question everything because you are stuck in a learning situation that you probably don't know anything about. Keep the faith and the fight going, we are all in the same boat paddling like crazy trying to make sense of the disease and the proper treatment for our loved ones.
Lainy, You are such a rock for all of us. We only wish the best for you and Teddy. Thank you for the discussion on patches. Mom has been refusing all medication because she received a recall notice for one of her old pain meds and now she is scared of all medication! The nurse comes tomorrow and I hope she will have suggestions for us. My prayers are for the patient AND his caregiver.
Pauline, The holidays can be hard if you have lost a loved one. I have not lost a spouse, but a parent and each holiday brings a sadness. Time makes the sadness diminish, but the loved one is never forgotten. For me busy is best...so I have continued to work and babysit my grandchildren. I have taken classes at the local community college and have taken dreamed of vacations and tried to enjoy all of the things I had looked forward to. I now have my remaining parent to care for (cc and dementia) so part of my life is on hold for the moment while I assume the duty of caregiver. I read, do crafts, and housekeep for the two of us and really stay busy so there is not time for blues to creep in. I hope this has been helpful in your quest for peace and happiness now.
Posts found: 1 to 25 of 73