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My husband’s mind was not good, especially towards the end. He got easily confused and did a lot of strange things. The Doctor told us that toxins from the liver build up and affect the brain. There was a medicine he gave us that helped, but I don’t remember what it was called. It was liquid and real syrupy. My 40 yr old son, who has Juvenile Diabetes, related it to being alot like when he is having an insulin reaction. My husbands personality changed tremendously to the point that my children wanted to know where their dad was. I would not wish CC on my worst enemy, it is such an insidious disease. Hang in there and know that there are many thoughts and prayers on your behalf. May God bless you. LD
slittle1127, your comments and comments of posted prior to yours, really struck a cord with me, for I related so well to what you have expressed. My husband was diagnose in Jan 2007 and passed away in Aug 2007 (on his 64th birthday). I had many people tell me how well they thought I handled my husband’s death. What they didn’t understand was that I had been grieving since his diagnosis. We were initially told that they thought he had pancreatic cancer and my heart sank. I held out hope that maybe they wer wrong, but when all the tests were completed and we were told that he had CC and that it had spread to his lymph nodes, stomach, and lungs, it was devastating. He had never been sick, was an avid runner, did all the things they tell you to do to prevent cancer. He was really blind-sided by this. He tried to fight it with chemo to no avail. It just gradually took it’s toll. Iwatched him go through bouts of pain, getting very confused, and weak. When he did pass, I felt so guilty because of the relief I felt at not having to watch him die by inches any more. Not a day goes by that I don;t miss him, but I find comfort in knowing that he is in a better place and that he is not suffering anymore. It is a test of your faith, but Hang on tight and it will carry you through. I truly pray that you will find peace and comfort through your faith.
I am sorry to hear of your latest trials with this awful sickness. I, too, agree with what every one else has told you. I know full well how hard it is on the caregiver to watch your loved one suffer and feel totally helpless. The only help I can offer is to suggest(and they may already be doing it) is to try delauded (spelling?) for his pain. That was the only thing that helped make my husband’s pain bearable, morphine and even oxicodine didn’t help. It is a pretty heavy duty pain killer, I am told. My prayers are with you as are the parayers of many others.
Though I am opposed to considering suicide for a person with cc, I think more discussion and information for care givers would be helpful as far as what to expect might happen. It appears that this horrible disease affects everyone a little differently. I come to this discussion board often and it has helped me in a lot of ways, but I have never heard anyone discuss how this disease can affect the mind.
My husband went from a very mild mannered, loving husband and father to a very hard to deal with patient. He was demanding and said very cruel things to all of us. It was a nightmare of the worst kind and though I know that his mind was affected by toxins (as explained by a Doctor) in his brain, it is still very dificult for me even though he has been gone 2 1/2 years. Nothing was ever the same after his first severe attack of pain that sent him to emergency where a prelimary diagnosis of pancreatic cancer was made which then after more testing was determined, in reality, to be bile duct cancer. He was an extremely difficult pattient, especially towards the end. He litterally starved to death and because solid food of any kind caused him horrendous pain, I was told to only give him liquids. This still haunts me, did I starve him to death? As he grew weaker, he refused to use a walker even though he would fall. When he absolutely could not hold himself ip, he fought us constantly to get out of bed and was always trying to climb over the rails. Right up until he died, he fought to get up, the last three days of his life, he was in a semi-coma, he would lay guietly for 2-3 hours and then he would fight to get out of bed for about 10 minutes and then he would lapse back into a coma and this repeated itself 24 hours a day for three days. He was under hospice care and we had the morphine to give him, which we did. When it was all over, I felt so guilty at the relief I felt.
We had been married nearly 45 years and I loved him dearly, but I am plagued by my memories of our final year together. It was very much a nightmare.
I am sorry to be so negative, but I would not wish the experience I had on my worst enemy.
Your board id a good thing, keep up the good work.
I keep checking into this site since my husband past over 18 months ago. It is helpful to me to read the experiences of others and is helping me realize that we did the best we could for my husband. I have had many questions and they are gradually being answered and my mind put at ease. This is a horrendous form of cancer and I wouldn’t wish it upon my worst enemy. We all miss him terribly but are greatful to know that he is now in a far better place and no longer suffering. I thank all who share on this site for the help they have given me and I keep everyone here in my thoughts and prayers because I know what they are experiencing.
LDFebruary 12, 2008 at 10:04 pm in reply to: anyone exerence personality changes long before diagnosis? #19133
My husband was diagnosed in Jan 2007 and passed away in Aug. He had major personality changes as the cancer progressed and as I look back on it , I do believe these changes had started well before we knew anything was wrong, but his father had passed away unexpectedly (at age 84) and so I chalked it up to coming to grips with his father’s death. I noticed some weight lose and that he had stopped his daily routine of running several miles, but he kept telling me it was just stress. I finally got him to go in for a physical in Oct. 2006, but he passed with flying colors and the doctor also told him that he thought the weight lose was just stress. He wasn’t eating good and was very tired, it wasn’t until he had severe abdominal pain in Jan 2007, when we took him to emergency that discovered how sick he was. He was always very mild tempered, very layed back and easy going, but he had a major personality change and became very demanding and difficult. It was explained to me that with this disease tocins build up in the liver and cause something akin to an insulin reaction. The doctor prescribed Lactulose, which is the consistency of thick syrup (and he hated it) but it did help. I am still struggling to get past our final few months together because I too Lost my husband shortly after he was diagnosed. My children struggle with their last memories of their dad because they kept saying to me “This isn’t dad! What’s happening?”
I wish you well and all I can ay is keep trying to hold onto the memories of happier times. This is such a nasty disease and my heart goes out to anyone who has it and to their families.
My prayers are with you. LDSeptember 13, 2007 at 4:51 pm in reply to: anything we cando about a bit of confusion, forgetfulness ? #16844
Doctor told me that the confusion is due to toxins in the blood that the liver is having problems clearing. He prescribed Laculose for my husband and it did help. It is liquid and about the consisancy of honey and very sticky. As for water, my husband always said that it tasted bad to him, he drank a lot of gatorade because he found that more palatable, especially mango flavored. Hope this helps, I understand totally what you are experiencing. May God bless and help you.
My husband of 45 years passed away Aug.27, 2007, on his 64th birthday. He was a wonderful husband, father, grandfather. He put up a good fight, but ultimately lost the battle. He was diagnosed, Jan. 2007. In hind sight, I would have tried hard to dissuade him from having chemo because I think he would have had more quality time. The chemo affected his taste buds so everything tasted nasty to him and also caused severe anemia. He literally starved to death because he could not pallate most food. As most of you know this is a horrific disease to have to watch a loved one die of and my heart goes out to all of you who either have it or have a loved one with it.
I am comforted by my faith and know that he is in a much better place and is no longer in pain or suffering. We have wonderful children who are also a comfort to me. I have a whole jumble of emotions right now and I am sure in time that all will be well. I pray for strength to make it one day at a time.
Dear Ted, Patty, & Joyce,
I appreciate what you have shared with me and the support you have offered. I would give anything to see my husband regain some of his weight, but unfortunately, eating is a struggle for him, nothing tastes good (even things he used to love) to him. Ironically, stewed tomatoes seem to be the most paletable to him, but it is almost zero in calories even with butter and sugar added. Mango flavored gatorade is his drink of choice becuse he says it tastes close to water. He is drinking V8 juice which he forces down and he tries to drink orange juice every day which he mixes with a protein powder.
I am glad for Patty that she has gained some weight and is doing fairly well. You obviously have great faith and that is a wonderful thing to hang onto. My husband is also a man of great faith and he is ready for whatever the Lord’s will may be. I am afraid I am struggling, my own faith, which I always thought was stronge is being sorely tested. I am trying to be strong for my husband and children, but it is very hard. This is a good avenue to share the frustration and utter helpless one feels watching a loved one in this circumstance.
Joyce, I see that you have experienced much of the frustration that we have with hospitals and Doctors. This is such a tough cancer to treat and rare enough that not a whole lot is known about it. We had a lot of people tell us to go to the Cancer Treatment Center of America, But our doctor told us That the Mayo Clinic would be the best place as they are one of the few places doing indepth research on this kind of cancer. He called and talked to Mayo Clinic for us and they told him that my husband was not a candidate for them because his had spread too much on top of which his bilirubin level needed tobe below1.5 and thus far the lowest it has gone is 2.6. Like you, I am always searching looking for answers or some kind of help.
I thank you all again for your input.