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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.
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Thank you everyone for all your support and prayers. I wish one day this cancer gets the recognition like all the others.
I truly dont know what I would have done without all of you. Its so nice having a place to come and have people understand what your going through.
The kids and I take it day by day. We keep reminding ourselves that he is no longer suffering and is happy again. If we cry too much we also remember how much he couldn't stand us crying. We joke about how he would get after us for getting so worked up about him being sick.
Tonight is our first night home alone with no one staying with us. Its Diffenetly one of the hardest nights by far. My anxiety is at an all time high.
The kids and I have been camping out in the living room together. I'm sure we will be doing this for a while. My daughter has a hard time going into her own bedroom by herself. I have to walk in there with her and she don't like being left in the house on her own. She's afraid she's going to walk in the room and see him standing there.
My son has been kept pretty busy between my dad and my nephew. He has his moments but seems to be dealing with it better then I expected. He told my mom he had a dream about his dad and that he was with his friend and that his dad looked healthy and young again. It seemed to make him feel better.
I just wish the day my husband passed away he wouldn't have done it when I walked out of the room. I feel like i didnt get the chance to say good bye. If I would have had an idea it was going to happen I would have never left the room. He just had a small fever the night before and hospice came in the fever broke. Hospice told me all his vitals were normal. The nurse had given him 48 hours to a week so the next morning when he passed totally threw me off guard. I just so wish he would have given me the opportunity to be in there when he went. I feel bad for walking out. Within 2 minutes of me stepping out he was gone.
Thank you everyone for always being here.
I am so sorry for your loss. I just lost my husband on the 19th to this horrible cancer.
I keep reminding myself he is no longer suffering and is now happy and healthy again.
Sending lots of hugs and prayers your way.
Yesterday, March 19th, at 7:50 am my husband passed. I feel so empty inside. I can't help but wonder if I will ever get over this. The house feels so empty. I wonder how the kids and I will ever get over it. My heart hurts so bad.
Well since I last posted my husband has started falling a lot. He is now in a wheel chair. Since last Thursday evening he's been running fevers during the night. He gets the chills really bad. When the fever kicks in he can't seem to stand at all and has a grad time setting up also the confusion gets really bad.
He's down to 118 pounds. He gets the hiccups nonstop. Sometimes they last over an hour they go away for an hour and they're right back. This can happen with an enkarged liver. They say it presses on a nerve and it will cause the hiccups.
I feel so bad setting here watching him suffer. He looks so sad all the time. He still wants out of bed to set in his recliner which is nice.
It's really sad how much suffering one goes through. Just don't see the fairness in it all
As for me i am lucky if i get 2 hours a sleep a night. Always on guard making sure he's not trying to get out of bed on his own. Or around midnight is when he will spike a fever. They have been about 102. So far Tylenol is helping break his fever. Also rotating cold wash clothes every 10 minutes helps a lot too.
Hospice told me Thursday he probably had a few days til a week left ut they said with him being so strong willed its hard to tell. He sure is a fighter.
Prayers and hugs go out to all,
The fast few days have been a roller coaster. We have went from him to barley communicating, not eating, extreme confusion to now up talking and eating like crazy.
Now my main worry if this is what they call the spurt of energy( the calm before the storm) some get before the end comes. The hiospice nurse is fearing thats what is happening. Today is his birthday he is 47. The kids stayed home from school to celebrate it with him. They asked if he wanted a cake and he's all for it. He was up this morning and ate 2 bowls of cereal which just frightens me. For the past 2 months i was lucky to get him to eat half a bowl.
He layed back down around 10am and its 1:15 now so I am beginning to wonder if the energy is wearing off.
The kids have only made it to school one day this week which was Wednesday but only made it half a day. After what they watched him be so confused Monday they have been real upset. At one time Monday he acted like he didn't know who they were so he ran back in the room for a few seconds then came back out and said hi to them. That was the hardest thing to watch was the look on the kids faces.
The hospice nurse told me just to keep and eye on him and to be prepared for the worst to happen. She told me she can't be for certain that this is what's going on.
Seeing him with so much energy and being able to have conversations with hi. Is hard. It almost gives you false hopes like he's going to get better. I know thats what it has done to my son.
I just want you all to know I appreciate each and everyone one of you. With out all of you I dont know what I'd do. This group is wonderful. Prayers and hugs of out to all of you.
Feeling lost. My husband is sleeping more and more every day. When he is awake its like he's not even with me. He doesn't talk much and when he does its short answers. His appitite is small, he may eat a couple of bites for lunch and maybe the same for dinner if he eats at all. Drinking water has diminished to only 2 glasses a day. I have noticed when he sleeps his arms, hands and feet twitch a lot. The last 2 days i have noticed that he gets confused on things. Like our dog needed outside and he couldn't figure out when it would want to go outside. And I had gotten him a fresh glass of water then when I walked away to take a shower he asked my daughter to freshen his water so she did then 2 minutes later he asked her to do it again. She asked him didnt i just get you fresh water and he told her no that is was water that I had gotten him hours ago. Then today his parents stopped by to see him and he didn't remember.
Hes 134 pounds now. There's nothing to him. I am so scared.
It seems like if something is going to go wrong its all happening now. Luckily I stepped out in the garage to talk with his brother on the phone today because I noticed the chimney pipe had a hole in it. My house would have burnt down if I wouldn't have caught it.
My kids are having a hard time wanting to go to school. My daughter spent her first hour with the principal talking with him because she had a break down. My son has a stomach ache daily. Some of the kids make nasty remarks and they need to be slapped. The kid asked my daughter if he could have a drink of her water and she told him no that she didn't need to get sick. He couldn't see what the big deal was so someone told him she dont need to get sick then have her dad catch it. The kid had the nerve to say so whats the difference he's going to die any way. She almost punched the boy in the face but the teacher pulled her away. What is wrong with kids? How could they say something like that? Makes you wonder what their parents are like. It took me everything not to call the kids house.
I made an appointment to get arrangements made at the funeral home for Tuesday. I can't sleep because thats all I can think of. I just can't believe this is happening. No one on his side of family has been much help except his brother. His mom is just plain crazy and wants to call and argue with me. She thinks if they want to come visit i should wake him up so they can visit him. I have been good at keeping my cool but not sure for how much longer.
I know he's not going to be here much longer but still having a hard time excepting it. Hospice told me last week maybe 2 months but he's declined a lot since then. I even noticed he's looking yellow and so did others.
It's getting harder for me to sleep at night then during the day I feel like I'm a walking zombie.
I have a question. Some may think its weird but here I go. My beagle has been acting strange lately. He sniffs the air and even looks like something is there. Sometimes he acts like he's following it. The other day he was even growling. When someone is getting ready to pass do you think its possible that loved ones that have passed are here waiting and my dog is sensing them. It kind of freaks my kids out when he does it.
Well I guess I should try resting. Have a tough day ahead of me.
Best wishes and prayers to all,
I set here and watch my husband go on a steady decline. He is now 144 pounds. He still is up and about but I am constantly waiting for the worse. I still find it hard to believe that he is sick but then i look at him lying there sleeping and it looks nothing like him. The past few days have been very rough for me. I realize the end is coming and wonder how am I suppose to deal with it. I can't imagine my life without him. I have tried and i just can't!
I try to do as much as I can myself because I think i have to learn any way. Friends and family get after me for not asking for help but I figure I can't depend on someone for help all the time.
I have no idea how i am going to handle this. There are days I think there is no way I am strong enough. I feel like I am going to crumble. Then I realize I have 2 kids I have to be strong for and think how am I going to be able to get them through all of this when I dont think I can handle it myself.
I'm having a hard time sleeping and then during the day I feel like a walking zombie most times. My anxitity has been at an all time high. I even went to the doctor for all the pains in my side and stomach. All come back clear. Doctor is figuring since I have been stressed, not sleeping and with hauling fire that I pulled a muscle or tore one.
My husband is having a hard time with finding a pain med that will help control the pain. Morphine seems to help the most. They tried fentynol patch but that's not doing much of anything so back to morphine. Just with that I am up every 2-3 hours to give meds which is hard for me to get much sleep. He won't take pain meds in form of a pill because he's bound and determined that it will make him vomit. I have tried explaining that taking the ABHD cream should prevent that from happening again but he won't listen. His doctor has been trying to call the house to talk with him but he won't answer the phone to talk with him and it seems like when the doctor calls I'm not home. Otherwise I would answer and hand him the phone. His hospice nurse has tried explaining things to him but when she leaves he tells me that she's just picking on him. I try to explain that they are just trying to help him and keep him as comfortable as possible but he don't see it that way.
Being concerned about my kids I had hospice bring in a councler for children but she came in and treated them like they were 5 and 6 so thats not going like I hoped. The kids were upset so know looking to see what else is available.
I just wonder how anyone ever gets over loosing a loved one? I feel like my life is spinning out of control.
Well thanks for listening to me once again. I just have so much on my mind and its hard to talk with anyone because they just don't seem to understand. Plus I hate burdening everyone with my emotions.
Praying for you that it's just scar tissue. Lots of hugs.
Hospice came in today and gave him some of the cream to rub on his wrist. So good so far. Has not vomited once today. Fingers crossed it keeps working. Night time seems to be the worse.
Thank you Shellina, I will for sure ask hospice tomorrow about it.
Hope someone can help. Hospice has been coming in for a week now. They have given my husband Compozine to help him because he's been so nauseous. But it's not helping. He has been Vomitting for the past 4 days now. It seems to hit more towards late afternoon and evening. Anyone have any idea what could be causing it? And what else can he take since the Compozine isn't working. They even give him Compozine in the suppository form tonight but that didnt help either. Any feed back is greatly appreciated.
Just last week Friday my husband seen his ONC and she suggested hospice. Hospice came that evening for a consultation. Monday he signed up for hospice. He has already lost another 5 pounds, sleeps a lot and hardly has an appitite. The last 3 days he's been nausea a lot and has been vomiting. The nurse from hospice gave him a perscription to help with him being nauseated but he waits til he's real nauseous then he throws up once he takes the pill. They also have him on Ativan to help with the restlessness.
It just tears me up seeing him dwindling away so fast. In three days he lost an inch from his arms and waist. The nurse told me today she can see that he's declines every day and she just started coming in. Hospice was only going to come twice a week but after she seen him today she said she figures she should come three times a week.
So far everyone i have met through hospice have been really nice. We had a social worker in yesterday and she talked with the kids and I. The social worker said she was going to have another lady come in that works with kids on a regular basis come in. She said the other lady deals withs kids all the time. My daughter said she would give it a try and talk with her but my son told me there was no way he was talking to anyone. I dont know what to do about it. I just asked him if he would please give them a chance. My son really keeps everything locked up inside. He told me yesterday he wishes he was the one sick. I told him that his dad or I would never want him to be sick and that we both love him with all out hearts. I really hope he opens up to the social worker. I am so scared.
The holidays are coming and I am just having a hard time to be in the Christmas spirit. I try my best for the kids and try to keep everything as normal as possible.
I am so afraid that I'm not going to do a good job with my kids and screw them up and fail. I just dont know what to do.
Thank you once again for listening to everything I say.
My husband seems to be on a steady decline. Just in the past month he has lost a total of 15 pounds. Today the doctors office called and his tumor marker went from 665 to 1423 in two weeks. I figured it would climb since he is no longer getting chemo but for it to double in two weeks was a shock.
He is barely eating. I am lucky if he eats one egg in the morning, lunch he might eat a half of a sandwich but lately not even that, today it was 2 pair slices and he had to make himself eat it. Dinner sometimes nothing at all or he eats the helping the size of a jar lid.
He has no energy, sleeps a lot and get dizzy a lot when he walks. He's in a lot of pain. Once in a while I can get him to take his pain meds but he puts up a fight.
I feel helpless!
I feel like he is slipping away fast.
How long can a person go on like this? He is suffering so bad. I dont want to lose him and feel selfish for feeling that way. But at the same time I know he's miserable. He tells me he hopes it's soon. It breaks my heart to hear him say things like that.
He also told me that in 2 months he will be gone. Is it possible that they know how much time they have?
Daily he is explaining to me in how to make sure things get done. Like how long the house roof is good for and things like that. I set and listen and the whole time all I want to do is cry. I do pretty good at holding it in. I dont like crying in front of him much because then he feels like he has to apologize for being sick and I dont want him to feel like he needs to do that.
The kids are asking more and more questions and I try to answer them the best I can.
He has a doctors appointment friday and his doctor I believe is going to talk to him about hospice. At this point hes not real excited in having them come in. Will hospice wait until he is comfortable in having them come in? Can I call them and let them know he's ready? Not too sure how it all works.
Thank you everyone in listening to me oce again. Sometimes it just feels better to write then to talk about it.
Lainy, I believe I am ready. I want to be as prepared as possible. Plus with the way his nights are with his pacing and pains it makes me worry.
Lainy, no i dont recall you sending me the list. Of course I'm pretty forgetful these days though. Lack of sleep myself.
Lainy, his ONC told me the other day when I spoke with her on the phone that if he done with treatment then on his next visit which is December 6 that she would set up hospice. My hubby is against it. I have told him how much help they would be. Hopefully by his appointment he thinks it through.
I wonder if because she wants to set it up does it mean he dont have much time left?
Thank you Lainy
Well not sure where to start....
Friday we got the results from my husbands pet scan and ct scan. Like we thought the chemo quit working. He had 2 spots they he had on the right side of the liver that now lite up. They are 4cc big. The main tumor is now 7cc that is more on the left side. The lymph node up by the neck, liver and chest got even bigger plus had a few more light up for cancer.
The ONC told us he is unable to eat much because the liver is being pushed into the stomach which is causing restriction so when he eats half a sandwich he is extremely full. He lost another 5 pounds in 2 weeks.
He's been experiencing more pain which causes him a lot of restless nights. They give him pain meds but he doesn't always take them. He sleeps a lot with his legs so they are straight up on the back of the couch. He says it helps releave some of the pain.
The ONC suggested another type of chemo that they are experiencing with called terveca (i think i spelled it wrong). But he refused it. The ONC said if it worked it would extend his life a few extra months. He said hes done. He sick of being on chemo and running him down and making him feel like crap. I listened to all his reasons why he said hes ready to let things run their course and that he's just plain and simply tired of it all. He's tired of being miserable. He asked me if I understood and would stand behind him with his decision. I told him yes i know that it is soo hard on him. He was never a man to just set around and I have seen in the last few months that he's not happy and not himself.
That was the hardest thing so far listening to him. It's the first time he has opened up about how he felt and actually how miserable he is. The last few nights have been so rough. Reality has really hit me like a ton of bricks. I knew inside that he was sick but never excepted the fact that I was going to lose him.
He told me last night that he was going to teach me how to plow when we get our first snow storm because he said hes sure he won't be up to it. Then also went on how he thinks by spring he will be gone. I cant except that. There's no way! Then I wonder how much of what he's feeling is he hiding from me. He's really good at it and putting up a good front in front of others.
Ours kids have had a rough couple of days. So glad they have a principal that is soo understanding and told me just to let the kids stay home friday from school because they were so worked up about the results coming in. Glad they only had two days of school this week.
Well I think I have rambled on long enough.
Thanks everyone on your input. I thought so too on what I seen that it was sketchy. Just needed to confirm to let my brother in law know.
I appreciate every one of you on here.
Hi was wondering if anyone knows anything about a Dr. Burzynski? He's in Houston, Texas. I read stories about cancer patience he has helped out. Any info would be great.
Kris, thank you! Glad to know I'm not the only one dealing with in-laws who think they know it all. What gets me they have never been to one appointment!
I too call the doctors office and give them heads up on things. If he knew he would flip on me.
Not sure where to begin.
Well the last few weeks he's been really tired. The one week he didn't even feel like getting out of his chair. Experiencing more pain and appetite has been down. Of course tried getting him in to the doctor but he refused. Some of the things he will say to me are so hurtful. All I do is cry. Then the next day he will be fine and act like he never said anything to me.
So this past Friday was his doctors appointment. The doctor didn't like what she was seeing. She stopped his chemo. She said it has quit working. His tumor marker jumped 135 points this month and liver levels are on a steady rise. Plus he lost 7 pounds in 2 weeks. So Thursday he has to go in and have a pet scan followed with a ct scan. She thinks it has spread more.
I am scared to death. I see him slipping away from me. The worse part there's not a damn thing I can do about it. I get so angry! So angry that I am going out to buy a punching bag.
His family is no help. One minute that want to fight with him and then the minute they hear that things maybe getting worse they want to kiss ass. I bite my tongue with them people so much. Wish I could grab them and shake the crap out of them.
Oh the doctor even thought she was going to have to put him on meds for his pancreas. And of course I can't exactly remember quit what for. I seem so forgetful. The last I knew the cancer had spread to a few lymph nodes. Unless with all the symptoms she's thinking of something else. But she said she walks wait until we get results.
Sorry I just had to get all of this off my chest. I feel like I am going to burst sometimes. I hate cancer!
Prayers out to everyone,
I figured I better get an update on here.
1st.. My husband had a ct scan done to see if they could see whats the cause od his pain. Ct scan showed really no change. The doc said maybe there might be a couple of lymph nodes that may have changed slightly. But they are considering everything stable.
2nd... They give him delodid ( i think i spelt it wrong) for his pain. Which he has not taken. He refuses to at this point. He's stubborn!
3rd... Now on September 27th his last chemo appointment he had his blood work showed that his one kidney level was low and the other is high. Also the ALK phosphatase has gone from 145 to 157 and AST went from 31 to 50 and ALT went from 55 to 75. Also he lost 4 pounds. This is within 2 weeks.
Don't know if it means much but I worry because the pain in his abdominal pain hasn't lessened at all.
So in the past month he has lost about 8 pounds.
I wasn't able to make it to his last appointment with him because my kids had an appointment the same day. So him being him didn't ask any questions on his blood work.
I dont know if i should get over concerned but I am.
He is really restless at night. He says that when his stomach bothers him the most. So he will get up a sleep on the couch with his legs up on the back of the couch. He says it helps.
Oh the doctor did mention that maybe the pain could be caused from some of the lymph nodes that are swollen in that area or scar tissue.
Today wasn't a good day for him. He said his stomach has hurt and felt bloated a lot.
Just feeling lost today. I still find myself in denial with all of it. Then when he has days like this it hits me like a ton of bricks. Then i set and think how am i suppose to go on without him? I have no idea how to handle all of this and be strong for my kids at the same time!
Will post another update after his appointment on the 11th.
Prayers go out to everyone going through this,
Hi everyone. Thanks for all the input. I still have not been able to talk him into going in to be checked out. He just keeps telling me to call his oncologist tomorrow and see what she says. He's so darn stubborn.
He says the pain is not as bad as before but I wonder I'd hes just saying that or if its gotten better. He's up and gone with some buddies from work today so it must be better. I sure hope so.
He just doesn't realize how I worry. He always tells me I have nothing to worry about or be stressed over. Man is he ever wrong. He says hes the only one that has to worry. Dont matter what I say he thinks it doesn't have much effect on me or the kids.
What am emotional roller coaster this shit can be. I still try to figure out how he got this type of cancer. Just dont make sense.
I will update more tomorrow once I call his doctor and see what she recommends.
Thank you all so much.
Thanks Lainy, I will have a talk with him. His pain is in upper ab part, on both sides and says its goes to his back on his right side.
If i question him too much or watch over him then he tries to hide it. Wish I could give him a swift kick in the butt.
He tells me not to worry and that its nothing. Me?, not worry, right!
Right now he has been up and running around outside.
Hopefully I can talk some sense into him.
Thank you so much, Michele
Hi all, was wondering if someone could give me some input?
My husband had his second round of Irintecan on August 30th. He goes every other week. He is still having abdominal pain. We were both thinking it was from the chemo but its been over a week since his last treatment but the abdominal pain seems to be getting worse. Two nights ago he said the pain was so bad he could of screamed but then lessened up. Now yesterday he came and told me he was hurting real bad. He had Tylenol 3 so i have him one of those and he said it made him feel better. Then in the middle of last night he woke up and had to take another one. I am starting to wonder if the pain is still from the chemo or if the cancer is on the move some more?
He refuses to go see a doctor. Says he will just wait until the 13th for his next appointment.
Any info I would really appreciate it.
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