My mother had trouble breathing and part of it was because of the fluid buildup and ascites in her abdomen pressing on her lungs, part of it was the cancer itself - at the time, I researched it, and shortnesss of breath is one of the side effects of this cancer, even without chemo. It was very scary and she was hospitalized with oxygen, but even the doctors didn't know it was a side effect -- they were completely at a loss. It did get better, but she felt more reassured if she always had oxygen nearby, just in case. Best of luck to you!
I'm a New Yorker and I had great experience with Long Island Jewish Hospital. It was for my stepfather's lung cancer, not cc, but the doctors and staff and hospital itself were very caring and professional and took great care of my stepfather. Of course, Memorial Sloan Kettering, if it's closer, is considered the best -- but sometimes there's more of a wait when the place has such a great reputation.
Lots of love to you and your uncle,
Re: When we lose a moderator to the disease of Cholangiocarcinoma, we lose (18 replies, posted in In Remembrance)
Ditto to everything you said, Marion - and thank YOU for always being there for all of us. You are priceless, too.
I used to be a regular on this board, but I've been avoiding it for the past few months. Now I see your posts and I wish I had been here to tell you my experiences, since your mom went through a lot of what my mom went through, and maybe we could have helped each other. Then again, maybe it's better that I didn't bring you down. My mom was diagnosed November 15, 2006 and she died on January 22, 2007 -- in 2 short months she was gone. I now know that ascites that spread to the thighs means the liver/kidneys are not working, and it's' the beginning of the end.
I am so sorry that our mothers had to suffer like they did. Mine was young (64) but yours is even younger. What a terrible loss. I just wanted you to know that I cried as I read your posts, and I know a lot of what you're feeling. I know you feel so alone and like no one can possibly understand -- and it's true, nobody can know the depth of the bond you shared with your mother. My mother was also my best friend, my confidante, my soulmate, my mother and father and sister all rolled into one - and my only sibling, a sister, is just in denial and hasn't grieved at all and just stays cheerful. So I know what it's like to grieve alone, and I know I have "complicated grief" because I was so very close to my mother. Please know that the pain may not necessarily go away (it hasn't for me) but it gets more bearable with time. You will think of your mom every day, every hour, but maybe not every minute, and not with that pain in your chest that makes you think you cannot breathe or go on. IT's hard to offer words of comfort when I know you're hurting so very badly, but if you ever want to talk, I am here and I will listen and commiserate.
I also had questions about how to deal with my young child's attachment to my mother. My daughter had just turned 4 when my mother died, and she spent at least 3 days a week with my mother and ADORED her (preferred her over ME, really). It took about 2 months for my daughter to accept that Grandma was really GONE, but she still didn't really accept it. She started acting out, having tantrums, looking for my mother. My broken heart was even more shattered. I can recommend some books (for you and for your daughter) if you like. I wound up taking my daughter to a pediatric psychologist (talk therapy, no drugs) for 6 months, and it helped a lot. But to this day my daughter avoids mention of my mother -- and sometimes I catch her caressing the photo of my mother that I have displayed in the living room. The only thing that kept me going was my daughter --- and I know that you are trying to be strong for your child, too. I keep my mother's memory alive and every Christmas and birthday, my daughter gets a gift from "Grandma Fifi." I also show her the jewelry that she will inherit when she's old enough and I always wear my mother's ring.
Sorry for the long post -- I was so touched by your posts that I had to reach out to you. I understand if you don't want to talk or even think about it, since everyone has their own coping mechanism. But I'm here if you need an ear. I'm here if you're angry, depressed, denying, positive or negative. My last piece of advice is to surround yourself with other people who loved your mother; though they may not have loved her as much as you do, you can talk about her and keep her alive in your memory and not feel so alone. It's terrible to be around people who are uncomfortable and won't even mention your mother's name anymore, as if she never existed.
I wish you some measure of peace in these hard days ahead, and my heart breaks for you in sympathy.
I understand completely, and I agree with Marion that for some people the voice of your loved one will always be cherished, and while it may bring pain, it brings remembrance and love.
The 4 year anniversary of my mother's death is almost here, and I sometimes watch the videos my dear friend made of her daily interactions with my daughter. At the time we didn't know how precious those videos would be -- he was mainly just filming my daughter as she grew up. She was 4 (now 8) when Grandma Fifi died and she still won't watch the videos because she is still deeply upset by her favorite person's disappearance. And though I cry every time I watch those videos, it also makes me happy because it's all I have left of my mom and I can experience her goofy humor and crazy expressions and dancing all over again.
Peace to you - and I hope you find some consolation in the memories.
I am in shock and denial and I am heartbroken over this news -- and I didn't even know Kris personally! Hans, my heart goes out to you, and to your family and Kris's family and, of course, to the cats. She touched me as she touched everyone on this board and she made us laugh out loud and root for her and weep for her. I can only say that she packed more love, laughter, living and zest into her short life than most people could do in two lifetimes. What a loss for us, for her family and friends, and for humanity. If there is a tribute page for her, it would be wonderful if her cc friends here could let the world know how much she changed our lives with her humor, her support, and her love. I don't mean this in a morbid way, but Kris will NEVER rest in peace -- she will rock everyone's world in heaven or wherever she is now -- and she will make the angels laugh and sing.
I'm so so sorry for our loss.
I haven't logged on for a while, but I remember your Miracle Man very well, and the hope he gave to all of us. Mostly, though, I remember your wonderful, supportive attitude and how you are such a valuable member of this board, always positive and strong. I am so sorry for Teddy's passing, yet so glad for you that you had such wonderful years with him. I hope you are doing okay - well, as well as can be expected. My thoughts are with you - and with Teddy - and the true inspiration that you BOTH have been to me and to other people on this board. Thank you both for all you've done and said, and for your incredible sense of humor. Neither one of you will ever be forgotten.
So sorry to hear about your dad. You and your mom are in my thoughts. Your dad seemed like such a funny yet dignified person - I feel I knew him through your posts. I wish you some peace in the rough days ahead.
Dear Margaret and Blair,
Please accept my heartfelt sympathy on Ron's passing. He was one of the "old timers" here, so full of life, so upbeat and funny. I'll miss him, but I'm sure he was even more amazing in real life. I hope you find some peace in the days to come.
I am so sorry for your loss - believe me, I understand your bitterness - it's perfectly fine to express it here. You've undergone a huge loss, and it happened to quickly, and he was so young. It just seems so unfair.
You're in my thoughts and I wish you some peace in the midst of your grief.
So sorry for your loss, and that you had to join the rest of the bereaved here. I'm glad your dad was a trooper until the end. May he rest in peace and may you have some comfort from the fact that you had a wonderful father who loved you very much.
Re: What I would have done differently if I would have known better (24 replies, posted in General Discussion)
So sorry for the loss of your mother. Please try not to second-guess your decisions (though we all do it) - as others said, there are no right answers with this cancer. My mother also had tumors just in the liver, but there were so many of them, and it's considered metastasis Stage IV if it's in the liver, so it usually IS completely hopeless. My mother tried chemo and I believe it hastened her death, so really, you never do know. But she wouldn't have last that long, anyway - once the liver is afflicted that heavily, there usually is not much time. My mother lasted two months after diagnosis.
You are a WONDERFUL and CARING daughter and I'm sure your mother told you how much she loved you, in actions if not in words. You did the best you possibly could, and she loved you for it.
Dear Beth and Carrieann,
I think what makes it especially hard for us is that we were physically close to our mothers and saw them often. I have a friend whose mother just died of cancer and I thought they had a very close relationship, but the mother lived in France so they didn't see each other that often. I was ready to comfort her and give her whatever she needed, but after a week of grieving, she seems totally unaffected by her mother's death -- even ANNOYED that her father is grieving "too much." I know everyone has different coping mechanisms, different levels of grief, but I think that when you have almost daily contact with your mom, when she's your best friend, it's as devastating as having your spouse die. It's been 2 and a half years and I still cry every day, still think of her as soon as I wake up. Then there's my little daughter's grief that still shows up whenever she's feeling sad - and she asks for her Grandma Fifi, just heartbreaking.
I just wanted to say that I feel your pain - both of you - and offer you any comfort I can. You're not alone and we were so blessed to have such wonderful mothers. If only the grief would subside a bit.
Hi - Just my two cents, as a fellow animal lover:
Kris's suggestion about rescue organizations for specific breeds is a great one.
Also, I don't know if they still work as well as they used to, but you can put an ad in Petfinder.org - I fostered a dog and my allergies made it impossible for me to keep her and I felt guilty giving her back to the animal rescue place, so I found her a beautiful home with a sweet grandma through Petfinder. The dog was very skittish and shy and sweet and I found the perfect match for her and I'm still so thrilled about it. You might want to check it out -- though I do hope you can keep them! Even though they're elderly, there are people out there (my sister and best friend are 2 such people) who purposely adopt older animals because they're usually the last ones to get adopted.
Best of luck, Lainy! You're such a trooper and we need you around here, so don't linger around the hospital too long, eating their delicious food!
I am so sorry for the loss of your mother. Enjoy your children and grandchildren's love as your mother surely enjoyed yours. You were a wonderful daughter and it's so sad that your mother was taken from you. I wish you peace,
I've read your wonderful, compassionate posts over the past year or so, and have been so impressed with your caring spirit and great attitude. I grieve with you for the loss of your soulmate and I just wanted to say that I think you're an amazing human being to give so much comfort to others when you're hurting so much yourself. I hope things get a little bit better over time - you always have friends here. And through us, Jim's memory stays alive also.
You're making me cry, because I'm thinking of my mother and how I stayed in her house hugging her box of ashes (ridiculous, I know, but it was all I had of her) and had 2 birthdays since she died, and still I"m just a little child inside, crying for my mother.
Nothing can ever replace a mother, especially when you saw her and talked to her every day --- yet life somehow goes on. I wonder how it DOES go on, sometimes, but I take it a day at a time, because that's all I can do. I've been on antidepressants many times in my life and I think I should get back on them -- and you should, too, or adjust your dosage or try something else if this one isn't working too well. Nothing can take away the pain, but they might help it a little bit.
My mother also went from healthy to dead in less than 3 months' time, and it's such a shock that you just can't accept it. I still don't want to say it out loud - still think that maybe she'll come back to me, though I'm not delusional and don't REALLY believe it. It's just a coping mechanism, and I'll use whatever works. I also like to talk to her good friends and family members who were close to her so I can talk about her. It might make me cry, but it's better than being around people who avoid the topic or pretend that your mother never existed, which dishonors her memory.
Someone suggested I write my mother a letter and I tried that a few times and found it therapeutic - but there's just soooo much I want to say that it's hard to write a letter that isn't 50000 pages long! But it might help to work out some of your feelings - all of which are perfectly normal and natural. You just lost your best friend, the person who was with you for your ENTIRE life, supporting you with her unconditional love, so you have the right to lie in bed for a week if you want. Take care of yourself, immerse yourself in friendships or in grief - whatever works for you - and know that your mother loved you very very much and she will always be with you and within you, in some mysterious way. Or at least that's what I'd like to believe.
All my sympathy,
We know you're married to the Miracle Man and you've proven to us that you're the Miracle Woman! All my love and best hopes going out to you - that it's just some simple hernia (ha! who thinks a hernia is a good thing except people on this board?) Whatever it is, your attitude will beat it down into submission!
Much love and prayers,
Dear Danielle and children and family and loved ones,
I am so sorry to hear of your loss. I wish there was a way to make things better, I wish there were words to comfort you, but right now there is probably nothing that can do that. Please feel free to come here when you are ready, and we will support you in your time of grief. A great soul has left the earth once again.
My heart breaks for you at the loss of your best friend, your mother. I lost mine to this disease, also, and she was also 64. We were truly blessed to have such wonderful mothers -- but that makes it all the more painful to lose them. I hope you find some peace in the tough days ahead.
You go, Kris! I think you're definitely 100% a 1% person (if that makes any sense). My fingers are permanently crossed for you.
My deepest sympathy on the loss of your dad. There are no words to console you right now, but you can come here to vent and find sympathy whenever you want - we understand.
Your dad sure has been through a lot (and you and your mom, too), so it was great to hear your happy news. May he continue to feel fine and have an appetite, and play the piano, for a long time to come! Thanks for the good news,
I know a lot of what you're feeling. I wrote a similar note to my mother on this board a while back. I realized that one of the reasons I posted it on this board (besides the fact that everyone here is so empathetic and kind) is because I felt like I needed to make a public statement, a testatment to the greatness of my mother, to MAKE people remember my mother instead of just going on with their lives and forgetting. Sometimes I feel like I'm the only one who remembers she ever existed and I am SO ANGRY that such a wonderful, vibrant, funny woman should be forgotten so easily.
The pain gets easier to deal with, but never goes away. She will be with you always: through her memories, her belongings, her little white cat, but of course it's not enough. But it's all we have left of our motheres. We were truly lucky to have amazing mothers, and that's why it hurts so badly when they're taken away from us so cruelly.
I hope you found some peace in communicating to your mother; someone suggested I write letters to my mother, as it has a therapeutic effect, but I think visiting this board is my therapy, instead!
I wish you peace and I offer you my sincere sympathy and empathy on the loss of the most important person in your life.