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I am so sorry to hear of your dad’s passing. I understand when you say this is the hardest thing you have ever gone through. Losing my dad was the hardest thing I have ever experienced. I wish there were something I could say to make it easier for you. Just know that many prayers are going up for you and your family.
Lisa Ann,
I just want you to know that my prayers are with you and your family at this time. I lost my father in January, and I know how you must feel. Hold his hand and tell him everything you want him to know. He will hear you. My father was completely coherent until only a few minutes before we lost him.
Praying God will give you and your family a peace and comfort during this difficult time.
Thank you for the many kind words and support. Each response has touched my heart. Lainy, the poem was so very fitting and beautiful. Marion, you found the perfect words…grief is the price we pay for love. I will never forget that. And to those who share in the heartache of those terrible images of pain and suffering, I thank you for the encouragement that it will fade away. I have found myself remembering more of the good times lately. It is all still fresh in my mind, but I am able to think a little more of all the fun we had together. But of course, then I am saddened even more missing those times. My oldest daughter has really handled things well and keeps me focused in the right direction. She is only 5, but while praying before breakfast, she began to cry. She told me she missed him, but then she said, “But mommy, I’m happy too because I know he is all better now.”
Margaret, I am definitly going to take the suggestions given and make sure that he is talked about often and that we always have special pictures and videos on hand to look at often. I’m so sorry to hear of your loss. My youngest daughter is 2 1/2 also. That is so hard. But what a wonderful gift that your grandson was able to see. Thank you for your encouragement.
Each kind word has meant so much. Thank you all.
Well, here we are a month later and dad is still here! They did not think he would make it to Thanksgiving. This has been the strangest thing I have ever seen. No one knows what to think anymore. One day we are afraid he will not make it through the night, and the next he is much better. Then it starts all over again. His hospice nurse has even commented that she has never seen anything like it.
The only constant is that he is getting much weaker. Still able to get up to go to the bathroom, but he has to use a transport chair. They tweaked his medication and now his nausea is completely gone. He has been eating sweets constantly. His hands were “blotchy” the other day, and he now has some apnea while sleeping. Most of the time when he is awake, he says he is “fuzzy.” He knows exactly what he wants to say, but sometimes the words come out wrong. He is still seeing things, and people, but no one he knows. I was so very fortunate to have about an hour with him last week where he was completely coherent. I was able to tell him things that I wanted to make sure he knew. That has really helped me. Although, I still feel like it isn’t real. Mainly because he has always gotten better through all the MANY close calls he has had over the years. This seems like one of those hurdles. I don’t think I have fully accepted it yet.
My mother is working so hard to take care of him. I try to go over each day to help, but with small children, it isn’t as easy as I wish it were. And one of the biggest things I think I have realized through all this, is that no one can fully understand how much a person, as well as the caregiver, goes through with this cancer. It has been one of the most heartwrenching things I have ever had to see. It is the hardest to see my dad when he is no longer himself. He has always been the “clown”, making jokes and having fun. To see him this way, not even able to speak coherently at times absolutely breaks my heart. They say he may only have days, but he has fooled us many times before!
Sorry for such a long post. I just felt that it might help someone else out there who is looking for answers like I have. Sometimes just reading of others’ experiences can help. I hope maybe this will. Again, thank you to all who have been such an encouragement to me through all this. What a blessing this site is!
Lainy- Yes, dad is under home hospice care. The nurse comes at least 3 times a week and usually more. Since I last posted, they have tried one last combination of medications including steroids. It has seemed to help slightly. He had 2 really good days over the weekend, and even kept some food down. However, since Monday, he hasn’t been able to eat much and is still throwing up from time to time.
Marion – Your information was very helpful and makes sense. My dad continues to lose weight at a moderate speed. I am not certain that his body is processing what little amount he is now able to keep down.
He had his PT/INR checked again and it was better at 2.4. They also checked ammonia levels and they were normal. His blood pressure and heart rate had been fluctuating a lot, but that has gotten better. But the odd thing is that he is SO tired. With all his vitals better, he is more exhausted. The nurse said that the disease can do that.
It is so hard to figure out where we are with all this. He seems to do well for a few days, then bad again. The only constant I can see is that he continues to get weaker. Even getting outside in his wheelchair for a ride down the street with his grandbabies completely wore him out. He still is not in a hospital bed, but I’m afraid that may be coming.
Thank you all for your support. You will never know what it means to me and my family.
Marions- My dad didn’t get up and move around afterwards, but his nausea has certainly increased as he has gotten sick several times today already with anything he tries to drink. However, it does not appear that any of the food has come up. I wonder if it is like you say, just sitting on his stomach causing the nausea to continue and worsen. He has a bowel movement about every 4 days. As of today, it’s been about 3 days since the last one. There seems to be no rhyme or reason to anything anymore.
Also, does anyone know if lack of food can affect blood levels? He is on coumadin blood thinner, and all of a sudden today his level was 3.8 which is VERY high. Could there be a connection or does the cancer cause this?
I’m sorry to ask so many questions, but this site has proven time and time again to be the best resource of information about this horrible disease. I value each and every one of the opinions I receive. Just knowing that others can fully understand is so helpful.
Things have changed again. Dad was feeling a little better last night and asked to eat tomato soup with cheese toast. We were nervous about him trying it since he hasn’t been able to eat in 5 days. To our surprise, he kept it down! However, first thing this morning he was sick with the first sip of liquid. Has anyone experienced this? We are so confused! Is he is coming out of this, or is this normal? This whole experience is such a roller coaster ride, and it is taking its toll on everyone. I’m afraid to get my hopes up, only for them to come crashing down again. So many doctors have told us that they have never seen a patient like my father. He has become the definition of rare and unusual conditions. With that being said, that is why I wonder if anyone else has seen these type of symptoms.
My father has tried so many different types of nausea mediciation, and some will give him a bit of relief, but nothing has seemed to take it completely away. He has tried the one that dissolves under the tongue, along with creams, pills…you name it. He had been on a regular cycle for weeks where he would be sick for 4 days and then better for 3. The doctor seemed to think his body was rejecting the food and that would make him feel a little better for a few days, so he would eat. Then the process would begin all over again. He has just this week not been able to keep any liquids down, and he has not had his normal “better days.”
I have spoken with the nurse (who is absolutely amazing!) and she said after consulting his doctor that the blood pressure variations are just part of the cancer taking its toll on his body. They have tried just about everything possible. I just am not sure what to expect now. I wonder if he is getting any value from sips of water he takes before he throws it back up. I will have to check on the syringe driver. That sounds like something that might help.
Thank you all for your information.
Mlepp0416 -They are going to check my dad’s blood tomorrow to see if there are high levels of ammonia in the brain. He has progressively gotten worse just in the past 2 days. He becomes disoriented and sees strange things that aren’t there. He had to go change his shirt today because he said that he kept seeing odd shapes “jumping” off his shirt at him. He knew it wasn’t real, but it bothered him severely. It’s like he will be fine one minute, and the next completely out of it. Hoping the results tomorrow show that it isn’t just the cancer progressing. Guess we’ll wait and see.
Lainy – Thank you for the book suggestion. I am looking into that. I found out that there is also a place called the Caring House that helps with children in this situation. I plan to check on that as well.
Thank you for all the suggestions and comments. Without them we would never have known to ask about these things. And most of all thank you all for the encouragement. I am struggling, but finding ways to get through it for now. Each day brings new challenges, as you all know.
My mother spoke with the hospice nurse today, and it was not good news. She noticed a significant change in dad’s condition since last week. She believes the confusion and difficulty speaking clear thoughts (and strange movements) are all from the disease. I spoke with him several times today and he sounded really good, but inbetween those times my mother said he was a little “spacey.” It is so strange to see him up and getting around fine, and know that things have progressed to this point.
We are about to receive the dreaded blue booklet. The nurse is going to be visiting more often. I have not let it sink in yet, because I know if I do, then I won’t be able to take care of my family like I need to. I have small children, one of whom is my dad’s best buddy. She begins Kindergarten next week. I have no idea how I am going to help her through this, when I know I will be a wreck. All I know is that my heart goes out to everyone going through this horrible disease, and their families. It takes away so much, and so quickly.
Thanks to all of you for your helpful responses. It really has helped with knowing what questions to ask. It really helps to hear of others experiences and be able to compare them to our situation and gather as many answers as possible.
Thanks, Lainy. My mother plans to talk to the hospice nurse tomorrow to see if we can gain any more insight. He takes nausea medication already, but he still has a lot of problems getting sick. It seems to come on so fast. I think she is going to ask about the booklet as well. My dad said today that he thinks his time is getting shorter. He says he can’t explain it, he just feels that way. That is very concerning to us. It just seems that he has gotten worse in the past few weeks. He’s having trouble carrying a conversation, whereas a few weeks ago, that was not a problem. We are very fortunate to have a wonderful hospice nurse who has become not only a great caregiver to dad, but a good friend as well. Just wish there were more solid answers out there for everyone going through this. Cancer encompasses so many things that are “unknown.” My heart goes out to all who are going through this.
I am so sorry for your loss. My father is battling cc and I can’t imagine the sorrow you must feel. Thoughts and prayers are coming your way.
Small world…my father is being treated in Huntsville as well. I have found that usually by the 4th day afer chemo, things begin to settle down. I certainly hope that will be the case for your husband. Keep us all updated on his progress. We are keeping our fingers crossed for successful treatments!
You will find this website to be such a helpful place. I am sorry that you had to find us though.
My father was given the gemzar/xeloda combination. Although, I have read of many people who have taken the same ones you mentioned. Each person handles the chemo differently with this type of cancer. What works for one person, may not for another, so there is not any particular combo that everyone begins with. Hopefully that combination will work for your dad!
