My mom has Bile Duct Cancer and she is 93 and was just diganosed on March 1st. This has been a very hairy thing to deal with as there were NO options other than we did have the first 2 stents installed (plastic) and then the final one being mesh after they did decide it was cancer. I am giving a diet of all soft foods...whern I tried a little meats the bowel movements were really smelly and bad. Now we are back to being pretty good. K2626 is absolutely right...Hospice or your provider can give MYTAB Gas 80 mg. which seemed to help much for my mom. K2626 can you give me any more ideas of what to expect? This is really new for me as it must be to you all. Thanks & god bless
Hi Ma, sorry you are going through this. Do you know what stage she is at? With my father, he was very late stage-he passed 2 1/2 months later as it had spread to bones and liver by the time it was dx'd. You will see a lot of phases and everyone is a bit different. My father was already very weak when he was diagnosed and hardly walking--he was only 72 at the time. His journey went from being weak, to having major bathroom issues (having to go non stop right after he would eat), some gas pains (thankfully not a ton and his pain pills did help). As it progressed he slept more, became more disconnected, ate less, started to see things that were not there etc... I was never sure when to think it was the end, but when that time came close he was hiccuping a lot of bile, sleeping more than 20 hrs per day, barely eating and then in the end it was labored breathing etc....
Has hospice filled you in on what to expect? They did give us a piece of advise hrs before he passed that was very helpful in terms of what liver and stomach cancer patients experience right before death. Thankfully they warned us as it could have been very much more overwhelming for us otherwise.
Again, I am sorry you are going through this. I know how difficult this is. All you can do is be there, share your love and make more memories......
IT HAS BEEN A WHILE SINCE I HAVE POSTED BUT WE HAVE HAD A LOT OF THE RELATIVES DOWN TO SPEND SOME TIME WITH MY MOM. SHE IS GOOD AND BAD DAYS AND THIS IS A BAD ONE.
THE PAIN PILLS ARE COMING MORE OFTEN NOW AND THE NAUSEA PILLS ARE UPPING THEIR APPEARANCE ALSO. WE HAD ONE THIS AM AND ANOTHER JUST NOW WITH A LOT OF THE BURP PILLS IN BETWEEN. SHE IS STARTING TO GET WATER ON THE KNEE AND COMPLAINING ABOUT LOTS OF STOMACH HURTS. I AM FEARFUL OF THE END. STILL, HOSPICE WILL NOT COMENT. THEY SAY THEY ARE THE END OF LIFE PEOPLE AND CAN NOT COMMENT ON DURING LIFE BUT JUST TO KEEP COMFORTABLE. "K" ARE THERE MORE THINGS GOING TO HAPPEN THAT I AM NOT AWARE OF? IS THE SLEEPING DUE TO THE PAIN AND NAUSEA PILLS? WE WERE EATING PRETTY GOOD...ie; bread pudding and custards & ensure etc...right up to this point? What do you think..........thanks in advance for help in this horrible situation.
THIS IS SO OVERWHELMING FOR ME.......BUT CAN I COPY PART OF ONE OF YOUR MESSAGES? "I was never sure when to think it was the end, but when that time came close he was hiccuping a lot of bile, sleeping more than 20 hrs per day, barely eating and then in the end it was labored breathing etc"....
k, WE ARE GETTING THE HEAVY BREATHING NOW AND USING THE CCODINE COUGH SYRUP AND IS THE BILE UPHEAVAL WHAT I AM THINKING OF AS NASUEA? PLEASE GIVE MORE HELP IF POSSIBLE.
So sorry you are going through this. Hospice was not much of a help to me either, so many times I thought the end was near when it was not, but when it finally was-I knew.
My dad was sleeping a ton and virtually stopped eating his last week. The week prior he was too weak to really talk and would only eat a grapefruit or cup of yogurt.
His final days-some of this is graphic--3 days prior he was sleep most all day and stopped eating all together, he threw up bile in the middle of the night several times, 2 days prior he had the hiccups non stop and was basically in a light coma, but did wake up for about an hour (to our surprise) and was talking though he was very out of it (seeing lots of things that were not there etc), then he went back into a non responsive state. His final day he woke up at 300am moaning very very loud and his eyes were glazed open...we thought he was in pain but could not communicate to us. We called hospice and we started to give him liquid morphine every 45 minutes, after 2 hrs the moaning stopped. Hospice said they believe he was not in pain but perhaps it was his body breaking down or him transitioning over. I knew the end was very near that morning when his breathing was VERY labored and his body was very cold. He passed that afternoon.
One thing hospice warned us of is that sometimes people with this disease throw up a ton of bile right before they pass, which can scare some people if they are in the room. I had left my dads room and 10 min later he passed (in his room alone), however, I was informed there was a lot of bile. I am glad I was not there to see that part. Just want to warn you of this.
My dad did not feel nausa. Hospice should be able to give you better meds for this. How labored is the breathing? Have you called hospice?
Thanks K.......I don't think we are at the end quite yet but I don't think it is too many weeks in the future. She is getting much more pain every day now but not at the morphine stage yet as the pills are still controlling it...however, the pain pills put her out (to sleep) which is I guess, good and bad. Bad that she is sleeping but good not to have the pain. Do you think that the nausea is bile being regurgitated? Hospice did give us the pills for that as well as the suppository which we have not used as of yet. I also found out about some emzene from the Amerian Cancer Society which does help with the passage of foods plus the burps and other gas are not quite a bad now. The oxygen does help at times also. I don't know if I mentioned that a friends brother passed with this and she said to expect aprox. 6 weeks...My mom was looking pretty good at that time but things have changed now and it is 2 1/2 wks later. I just cannot believe Hospice does not know more than they are saying...plus I got a copy from Medicare for what they have been billing and it is unreal !!!!!!!!!!!!!! At those prices I think I should be able to have a nurse here every night for at least 4 hours or so. In any case, I REALLY appreciate this board and you in particular for your insight into this horrible problem. It does give me a little better idea of what to expect and I guess God is the only one that can say exactly when. So, thanks again & I will keep posting. By the by, my name is Fonda...when I joined this board I did not know how to do it or whats what so ma thel was my moms name. God Bless
She is not on enzymes? Even I was put on enzymes for possible pancreatic issues, I was on creon, not sure what my dad was on. They did not help me a lot but basically helps break down food vs your pancreas having to do the work. Nasua could be a lot of things and I do know is a side effect of this monster.
Have you called pan can? They are very helpful. Also there is another board which I cannot mention on here but it is VERY helpful-its all PC related and there are many posts per day
Hi, can I jump in here too? K is so right about getting some enzymes. Is your mom drinking some ensure, eating yoguart? When my best friend was approaching her time, she slept alot more also. The last few days she stopped talking unless it was necessary. We gave her watermelon to at least get some fluid in her. As the body begins to shut down, they don't seem to want food or liquid.
The last day, her daughter-in-law, also a nurse knew she was getting ready to go by the change of her breathing. It became more shallow. She died that night. We gathered around her, said our goodbyes and permission to go, and her breathing simply stopped. She appeared to be in a coma. The last thing to go is their hearing, so anything you want to say, tell her now, so you will never have the regrets. I am so thankful to be able to tell my friend, how much I loved her and to ride her horse free of pain through the meadow. Since her passing, her horse has joined her. She is alive always in my memories.
I am sorry you are going through this. hugs, Mel
Hi Mel & K:
Thanks so much. Yes we are doing 2 Ensures per day. She used to love Yogurt but cannot seem to want it now. Everything she used to love to eat she cannot get down now such as the oatmeal in the am. Fortunately she still likes my bread pudding which I pack with eggs and some raisins. Some of the side effects are troubling and I don't even know what is causing them except for this disease. It is so terrible to see a mind that is still so alert and the body is just quitting. I am still trying to get a time line here....Hospice will not say. Any thoughts? Thanks to all and God Bless. I am going to try and find the other site, Thanks
Hi k & mel:
Thanks for all your support. I have contacted the other sites but they don't seem to be as good as this one....probably i do not use them properly. In any case, yesterday was a great day, up mostly all day and ate pretty well....today is a bummer......took pain MEDS IMMEDIATELY upon waking and another within 2 hrs and then proceeded to sleep all day. Did take some bread pudding and vanilla pudding w/meds. This sleeping is getting to me as all indications are for a shut down of the body when that happens. Yesterday was a little game playing and sewing for an hour or so but basically up and in good spirits. Today upon waking was in terrible pain and then all sleep. Nurse wants to increase pain meds to morphine but she is resisting however if she has that pain like this am, i am positive she will do the stronger meds. Hospice is finally getting me a person for a couple of hours a week so i can get out just a little. I am so distraught as i have seen from all the posts that this sleeping is getting towards the end and that yesterdays alertness was just a one day temp thing. What do you all think? Thanks so much
Personally I would be glad she is sleeping. That would indicate to me she is comfortable. At this point, being pain free is so important. I understand what you are saying, her sleeping more may indicate she is getting closer to the end, but to suffer is the worst. Hold her hand alot and talk to her. The hearing is the last to go. Talk to her about pleasant thoughts, maybe a trip you took, a funny story.
Glad you are getting some free time.
Thank you for that entry, that helped alot because my father aged 68 has stage 3 bile duct cancer, and i just dont know what to expect and everyday is different, he has been acting very similar as to what you where saying, he now is VERY weak, wont eat and is sleeping about 12 hours a day. i wish i could hear more in detail about the journey your father had from the start to finish.