My grandmother has cholangiocarcinoma
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Thanks so much for this wonderful perspective on grandmas Lainy. There is nothing like tradition, and yummy food, to bring a family together. It sounds like you have been truly blessed with a wonderful family. Best, Mimi
Ladies, from the Grandma’s point of view, mine….when we moved to Phoenix we moved about 20 minutes from my daughter’s 4 kids, now young adults. The end of March is one of our biggest holidays, Passover and the Seder which is the big dinner and service is a very time consuming and tiring project but I do it with joy each year no matter what Teddy and I are going through. Last night we all went out to dinner and my only granddaughter ( I have 5 grandsons) said, Grandma I want to help you cook this year. She is 17 and a Senior. My heart was just skipping out in front of me. I said of course lets set a date! Sometimes we wonder if we really make an imprint but we do and I am sure of it when I hear all of you talk about your grandmothers.
Oh, let me add, I do Passover and always within 4 – 7 days I turn around and do Easter for Teddy! So its doubly tiring. Last night the kids ages 13, 15, 17, 21 said they still want to find the Easter Eggs. Bottom line is when Grandparents have a close relationship with the children, things do hold fast and are remembered forever. And what a great feeling that is, just the greatest! And remember you will always have the wonderful memories.Thank you Patty for your offer of help – it helps so much to be part of this community. I am in downstate IL (Springfield) though I used to live in Chicago and especially miss the delicious food!
You are so right about the unique relationship – it’s an irreplacable part of you which makes it special and also poignant thinking about losing it. It actually hit home when I took my son to the allergist this week – we were discussing allergy shots and I said that I had them as I child and the doctor asked how old I was when I got them. I thought “I’ll need to ask Nan” (my name for my grandmother) and then I thought, wow, I won’t be able to do that soon…she has so much of my own history inside of her.
Thanks again for reaching out Patty, and stay warm! Best, Mimi
Mimi,
I just wanted to welcome you to our little family. I am glad your grandmother is doing well enough to take care of some of her needs. I can understand her decision not to receive treatment and your fear of what lies ahead.
Your post made me think of my grandparents, I really think the relationship with grandparents is a special thing. In your case it was even much closer because they have raised you. What your post also made me think is that we miss the person we lost but we also miss the relationship with that person that is unique. When you say that nobody else will call you Mimi it makes me think of my Mom, we lost her to cc and once in a great while she would call me Trixie and I will never hear that again.
I see you are in Illinois, I am in Chicago, if you need any help or have questions, just e-mail me.
Patty
Marion, thank you. There are so many resources here, so many caring people. Just what I need. Best, Mimi
Hello mimi….I also would like to welcome you. I am so glad that you have found us. Mimi…in addition to the great and caring members on this site, I wanted to point out that we have Dr. Giles. Dr. Giles is a clinical psychologist and he is always there for all of us, you included. I just wanted to point out this very special service we have the benefit of enjoying.
I am sending all my best wishes,
MarionThanks so much for your support Darla and Gavin. I am very sure that I will be a frequent visitor here (and thank goodness all of you are here!).
My best,
MaryHi Mary,
Welcome to the site, although I am very sorry that you have to be here. Please come back often as you will get a ton of support from all of us. My dad was diagnoed in 2008 with inoperable CC and everyone here has been of great help to me since I came here.
I know how hard all of this is for you right now and you are doing everything possible for your grandmother right now. I was my dads carer during his fight with CC and went through what you are experiencing now. He was also in hospice care here in the UK and the care and treatment he recieved from the nurses and doctors was nothing short of spectacular.
Take care and my very best wishes to you and your Grandmother,
Gavin
Mary a.k.a. Mimi,
Yes, this is a great, very active site with a whole lot of wonderful people. it sounds like you are doing everything you can for your Grandmother. It is good you have been able to have special time and talks with her and God willing you will have more. Take care and keep in touch, we are all here for you.
Love & Hugs,
DarlaThank you so much Kris and Lainy for your kind words and support. I am very thankful that I have amazing people like you in this forum. I look forward to keeping in touch. Best to both of you and yours.
Mimi, Welcome to our wonderful family. First I want to say what a loving Granddaughter you are and I also want to let you know you are most definitely not alone. Your Grandmother sounds like a very exceptional and brave woman and sometimes as one gets to that age, one prepares to be with their “other” loved ones. You will always have your memories. Stay strong for her now and know that Hospice will ease her journey. Take care and please keep us posted.
Mimi (aka Mary)
I am sorry for your grandmothers diagnosis but happy you found us. We are really one of those families that fate and circumstance put together, not genetics.Sometimes you will need to vent and express your worries, not to worry we have very big shoulders to help carry the pain. If you have specific questions, please ask. Usually one of our members have the experience to answer it.
There is a section just for hospice and pallative care and there should be loads of information there for you.
Hugs,
KrisDear Margaret, thank you so much for your note. You are right that I would have rather not known about CC but now that it has become a central part of my life, I am so thankful for this foundation and for people like you who understand and care (I have been reading posts over the last few days and am so touched by the warmth and caring expressed on this site).
I neglected to put my grandmother’s age in my intro – she is 86 and her birthday is March 29. I have not made airline reservations yet since there are so many unknowns but I plan to spend her birthday with her if the fates allow.
In between talking about her care, how she is feeling, we do spend time remembering our lives together. In fact, the name I use here “Mimi” is my family nickname and when my grandmother passes there will be no one who will call me that again. My given name is Mary and when I was young I used to hide from my grandmother when she called out “Mimi!” in stores because I was embarrassed – now I treasure it and will so miss hearing it.
I wish you and your husband the best in his treatment. I know that my grandmother decided not to treat in large part because of her age. She just did not want to go through it. I hope that his appointment tomorrow goes well.
Thank you again for responding so quickly to my post. It is good not to feel alone. Take good care and keep in touch. You are actually just north of me as I live in Illinois.
Mary a.k.a. Mimi
Mimi:
Welcome to the best site addressing CC on the internet. As many others I’m certain that you really didn’t want to join this site. However with that being said, you will find compassion from others on this site. I too, did not wish to join this site but am very happy that I did.My husband Tom is also fighting this terrible cancer. I do not know what his outcome will be or how long he really has. You can read about his journey under my login name mlepp0416.
Since your grandmother raised you from an infant, you have many happy memories of her. Keep those memories alive by talking about her to your family. Create a scrapbook of any pictures and document those happier times.
My husband too had the high bilirubin levels and has undergone radiation treatments for his inoperable reoccurance of CC. He had a liver resection in June 2008. Tom was lucky in the respect that he did not experience the terrible itching that you describe that your grandmother experienced. His bilibrubin level was up to 24.7 and after 28 radiation treatments it is now down to 9.1.
He has lost a lot of weight and now also has an external drain which is giving him a lot of pain and discomfort. He wants the drain ‘gone’ and we will be discussing that tomorrow with his doctors. As his caregiver, I have to respect his wishes and if he decided to ‘give up the fight’ as your grandmother did, then that is what I have to do. Just like you, I am not ready to give him up, but he knows how much he can tolerate, and I would respect his wishes.
Tom is 62, will be 63 on Feb. 11th. You don’t say how old your grandmother is, however, regardless of her age, Kudos to you for being supportive of her wishes.
I’m not certain of ‘signs of what is next’. I do know that when / if the time comes, Hospice will ensure that your grandmother does not suffer. A long time family friend recently was diagnosed with cancer and it had spread throughout her entire body. She had no symptoms whatsoever until her stomach started bloating. It was then that they found the cancer. She too opted for no treatment, she was 88 years young. Within 6 weeks she was sleeping more and more and her family got her into home hospice. She passed away in her sleep 7 weeks after her diagnosis but never suffered because the Hospice team always kept her comfortable. And if nothing else, Hopsice will do the same for your grandmother.
Prayers are coming your grandmothers way from Wisconsin.
Go with God.
Margaret
My grandmother, who raised me along with my grandfather (now deceased) from the age of 10 months, was diagnosed 3 weeks ago. We learned of her diagnosis while she was in the hospital, recovering from an infection she contracted during an ERCP procedure to place a stent to alleviate severe jaundice and itching. At the end of 2008 she underwent a gall stone operation only to learn after the surgery that her gall bladder was removed due to the fact that cancer was found. We were under the impression that she was lucky to have all cancer removed via the gall bladder removal. Then, last November after surgery to address a drooping bladder, she became jaundice, her urine was dark, and she became progressively more jaundice and itchy. She had the ERCP in January of this year which also included a biopsy of a tumor that was found and here we are.
She has decided to not pursue treatment for the cancer and is ready to die. While I respect her decision I will miss her terribly. She is an amazing woman and the rock of our family.
I set her up in hospice in her home and she is very glad to be there. The hospice is wonderful, and because she needs 24 hour care she also has a private duty nurse and a companion service.
Since recuperating from her recent hospital stay she is no longer jaundice, has less itching (though it is still very there), has a great appetite, and is able to do many things for herself, including making breakfast and taking a sponge bath. However, she recently noticed some abdominal pain in her upper right and experienced pain during a bowel movement.
It is scary because I think both of us are looking for signs of what is next. Since I know that I can’t keep her forever, my hope is that she does not suffer a great deal.
I live several states away from her, and have a young family, so cannot be there with her day to day. We said our goodbyes when I left 2 weeks ago and we talked about her death and our relationship when we were together which, given the circumstances, was a wonderful gift. Now we speak every day and I organize her care and affairs from a distance.
I will so miss her voice and everything special she did throughout her life. I am glad that this discussion board is here as a resource. I don’t know what I would do without it as nothing else I have found has addressed death from this disease in any detail. Thank you.
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