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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.
Posts found: 14
Hi--My mom lost all her appetite. My dad constantly tried to get her to eat. I think that was the only thing he knew to do for her. She would get so upset with him because she could not eat. She would drink the ensure and drink lots of water. We were told as long as she was drinking a lot of water and ensure that was good. She would go a few days with only that and then she would say man I'm hungry and eat a good meal. It's hard to understand that they just can't eat. I know this isn't much help, just sharing.
My heart breaks for you too! I feel you are probably in the same place as me, just looking for compassion, somebody to share your pain. Honestly we all share your pain, but not the same as you feel. I love coming here, just to read and know that we are not the only "ones", but sometimes it makes me so mad. After readling, I just wish I could have had half the knowledge that some of these people do. I suppose, that was not meant to be. There are so many things I wish I could have done differently. I'm realizing though, that this cancer is unthinkable, unexplainable, unpredictable, and it takes everything....It has questioned everything in my mind. Made me feel crazy, like the dumbest person, the most vulnerable and trusting person ever. I am so tired of hearing everyone tellling me, "at least your mom isn't suffering anymore" I just want her here, i guess I became very selfish, because I would have taken care of her forever. We never felt their pain and I hope someday I can see their happiness now. Thats all I hope for.
Do come here and talk Sarah or just read---it really does help!!
I am so sorry to hear of your dad's passing. I just couldn't believe it when you sent me an email about getting 2nd opinions for my mom. I felt so much hope. I saw everthing you did for your dad and knew right then that I had to learn so much more. To be the one to fight for my mom. Ofcourse, I had no time (she was gone in 5 weeks). But I learned so much from everyone here. You especially. I want to thank you for that.
I know how you feel about missing taking care of them. I tell people, I know it was hard, but I would have gladly taken care of her for the rest of my life. I did hate seeing her in pain, but I always prayed that the next day would be better.
I am thinking about you, what a wonderful daughter you were and how much strength I could feel you had. I often thought, I need to be more like that.
Heather-I too feel your pain. On the 17th it will be one month since my mom passed. I have days where I pretend this hasnt happened, so I can have a good day without thinking about it. Then I wake up the next day and say oh yeah, this is true, my mom is gone. All I can think about now is how much she missed, how much I am gonna miss. Pretty much feeling sorry for myself. I'm trying not to question everything. I'm wondering what we could have done differently, why I didnt know how bad this was. That's what I wanted to say to Rose also, please know that everyone is different, but I want her to know how terrible this cancer is. They said my mom had 1yr. to 6 months. She was gone in 5 weeks. I'm so angry about that. I really would have liked to say more to her. I'm so mad I didn't. I didn't want to talk about all that, I thought I had more time. Thats were the saying live everyday like its your last. Easy for them to say. Everyone here knows its definately one day at a time. More like one minute at a time. My best to everyone. When I think about how bad I feel. I think of everyone on here, just knowing your not the only one somehow helps get through the day.
Thanks and Love to all of you. Your kind words really do help sooo much. love, steph
Hi everyone. I made it through today. At least I think I did. What I probably havent told you is that I lost my brother to a car accident 13 years ago. I dont think I ever dealt with that the way i should have. He was only 19 and now I'm scared for my dad because he is going to be all alone. They were married for 36 years. I feel so helpless. I know my pain, but I cant imagine his pain. Losing a child and then your wife of so long. You would think I should know the grief process, but who does. Thank you all for your hugs, wishes, prayers, and thoughtfulness. I know I will be able to help you all some day. This is so helpful. To just write and then feel so much compassion in return. Thank you all!! love, steph
Hi Jill, not trying to scare you but please get with your oncologist as soon as possible. The whipple changes you so much. It is so hard to know if your body is trying to adjust to the surgery or if it is something else. This is so rare but very aggressive. You came to the right place, just please read on here and ask a lot of questions. You are in my thoughts and prayers. With love, Steph
I wish I had hours and hours to read everthing people write. It is now 2:40 am and I just had to get on here and read. My moms viewing is tom. and I was reading Pauline's posts. I just got done ironing and making sure everything is perfect. Sitting here i feel like I dont want to go. My moms battle was so short also. Only 5 weeks since her last scans came back not good. November 20th her scans were fine. We went out and celebrated. Like Pauline I question everything. We knew this would be terminal, but never thought it would be so soon. Anyways just wanted to vent, to know I'm not the only one feeling this way. I'm dreading this soo bad. Pretty much just feeling sorry for myself. Which I know is ok to do here. Thank God. I know I will be back soon to talk. Thank you all so much for being here!!! Love, Steph
Im back to say thank you all with your prayers and insight. Unfortunately my mom passed away yesterday. I can honestly say I hate this cancer and it has no shame. This was her second bought with her amonnia level getting so high. The first time we got it down and she went home. She never got any stronger. This time we knew the signs and got her right to the hospital. Overnight her amonnia level went up to 240 and her potassium was at 8, which the doctor said was at a deadly level. She was in a comma like state. Anyways I wish I could say it was a peaceful ending, but it wasnt because she was so young and her heart was so strong. I was so thankful for the end, no more pain. She had her son and family waiting to greet her and I am so happy for her now. Anyways thank you all and keep spreading the word. This site is so helpful to people. If you can help just 1 person its worth it. Love, stephanie
We had the doctor write down the name of her cancer, and she wrote down 2 things. Hepatobiliary adenocarcinoma and cholagiocarcinoma. Not sure what that means. If they are the same thing. I am going to call the doctor today and ask what the chemo was they at first wanted to give her. She went in for her stent and it is a 4 step process. All went as well as possible. She is in a lot of pain as she is having spasms, which is under control with pain medicine. Thanks.. Steph
Again, thank you to all that wrote. I knew there were great people around, but I never expected to here from you so soon. What I am realizing is that I know absolutely nothing about cancer. I have read other peoples posts and I have no clue what they are talking about. I do not know what kind of chemo they wanted to give to my mom, I just know that it was for colon cancer. And since she doesnt officially have colon cancer they wont do it. My mom is going in for her stent tom. and when I called her she didnt want to tell me because she said I need to be home with my kids. I know this is a mom thing because we always try to put others before ourself. I think this is my time to become the mom in charge and take care of her. I didnt think it would ever be this hard though. I am learning a lot from you guys, and I know I need to be the one to ask the hard questions. I am not a religious person and I almost feel guilty for asking for GODS help. But, I am, almost every waking moment. Thank you again. I dont know how much time I will be able to devote to talking on here. My mission now, knowing how bad this cancer is, is spending time with my mom. Having her, let me, help her.
Thank you, everyone. The doctor said she is in stage 4 advanced. She is going in next week to have a stent put in because she is so sick right now. She can hardly eat anything without severe pain and then getting sick. She is currently getting more jaundiced. We are hoping that this will relieve these symptoms so she can concentrate on taking her pills and hopefully just dealing with those side effects. After reading more on this site, I feel better. Definately not ready to throw in the towel.
Wow. Thank you for writing back so fast. We are from South Bend, Indiana (Notre Dame). We have been told that we have a great oncologist. Dr. Ansari. My mom is at peace with his decisions. She had colon cancer at 30 and feels she got her second chance then and that maybe now it is someone elses turn. I know she is in a lot more pain than she is telling me. At this time she doesnt feel she needs to get a second opinion. They want her to take the pills for 2 months and then check to see if theres been any change. She said she will go from there. I need to get my mind right again so I can keep the hope that this will help.
Hi my name is Stephanie. My mother starting having problems in July with nausea and jaundice. She had a scan and they found a blockage. She had the whipple surgery. They said the tumor was cancerous, but her lymph nodes were fine. She then had chemo and radiation for what we thought was a precautionary thing. She got her scans back 2 months ago and they were fine. Great!!! My mom will be back to normal in no time. She recently started getting sick again, so they put her on enzymes and did another scan. She came to my house on Friday night to tell me she got bad news, the cancer was back. Spots on her liver, colon, and ducts. How can this happen so fast???? There was nothing 2 months ago. We went yesterday and her insurance company would not cover the chemo they wanted to do, so she is on Nexavar. We had no idea what this cancer was even called. When I came home and looked it up I was SHOCKED. When we asked how long she would have to be on this pill, he said hopefullly for the rest of your life. I came home feeling hope, now I dont know what to think. I'm scared, my mom is only 55.
Posts found: 14
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