March 20, 2014 at 12:45 am #80622darlaParticipant
My thoughts and prayers are with all of you during this trying time.
Love & Hugs,
DarlaMarch 19, 2014 at 9:44 pm #80621marionsModerator
Stella….underneath it all is your beloved husband. Stella, do you have someone with you or are you alone by his side?
MarionMarch 19, 2014 at 3:21 pm #80620lainyParticipant
Stella, I am just so sorry. I do have a list that helps you know what to expect but I only email it. I have always felt that if you know what is coming it takes the fright of the unknown away. In fact I emailed one out this morning. Has the ONC mentioned Hospice? If you would like a copy just email me through this site and I will email back. In the meantime know that we are right with you and now you need to be stronger then ever. If you feel your husband is near the end remember when the time is right that often one needs to give permission to take the journey. At the end for Teddy I told him quite often to go to his peace and that I loved him and I will be OK. I am here for you and by you in spirit.March 19, 2014 at 3:06 pm #80619
Things are not looking too good for my man. One specialist has suggested he may have as little as 2 weeks to live. It is a shock to see him disintigrate under the power of this cancer. This afternoon he become very ill with loud groaning as he threw up. He asked me to phone for an abulance as he is dying…. he is in hospital and could not understand why the ambulance was not coming. I sense that some nurses are loosing interest in him or it just may be my sensitivity. The care-givers in the ward are amazing people. I dont know where to from here….March 17, 2014 at 8:25 am #80618claremParticipant
I am sorry that your husband is now so weak. It is very hard to watch and be unable to make him better. Be with him when you can and know that there is much they can do to give him relief and make him comfortable.
XMarch 16, 2014 at 6:15 pm #80617darlaParticipant
Sorry to here things are not going well. Unfortunately this is all too common with this disease. Yes, it is a sad thing to go through and just as hard as a care giver to watch it happening. Know that I am thinking of you both and hoping for some help and relief for him. Stay with us and let us know how things are going.
Love & Hugs,
DarlaMarch 16, 2014 at 9:17 am #80616
Thanks for all the information and encouragement. My husband is still in hospital and very week. They have a progrma of when they tap off the fluid. This morning I went to help him with his breakfast and to take his tablets. He threw up about 2 cups of fluid and porridge. Although he has often been nauseous, this is the first time he has thrown up so much content. He has been in hospital for 2 weeks, beside 2 nights he was at home. This morning he was unable to stand up from the armchair and it took two of us to get him onto his feet and into bed. He has become very quiet and seldom speaks. It is so sad to see a determined man with a dominant character reduced to this.March 13, 2014 at 7:40 am #80615mcwgoatParticipant
I have a drain in my abdomen. Was put in about a month ago and it is such a relief to be able to help myself and not rush to ER every time I fill up. I started draining three times a day, then two, then one. I am now down to once every other day and only get about one liter. When I use to go to the ER It was every five days and they would drain between 5-8 liters each time. I looked like I was 9 months pregnant and it was so painful. I find it easy to care for.
Please feel free to ask me any questions.
Peace, Love & Hugs,
MaryMarch 12, 2014 at 9:00 pm #80614brenda-on-the-farmParticipant
The question I have is…How would you get the albumin after the draining? If not in the hospital? That has been part of the draining of ascites for my husband. That was always done as a outpatient. Thankfully since June of 2013 he has only had one draining in Dec , so much better than every week or two in april thru June..The ascities sure made him sickly. I hope all gets better for you.
BrendaMarch 12, 2014 at 7:46 pm #80613
Last night, a “permanent” drain was inserted into my husband’s abdomen. Over 24 hours, 10 litres of fluid have been tapped off. His ankles are alot less swollen and his abdomen is looking better but still somewhat out of shape. He is still unwell. I dont know how I am going to cope with the drain but I do wish I could bring him home now as I want him with me.March 10, 2014 at 7:02 am #80612gavinModerator
Sorry to hear what your husband is going through right now and as Marion says, this is not uncommon. Here is a link that should be of use to you.
I hope that he can get some relief from this.
My best wishes to you and your husband,
GavinMarch 9, 2014 at 9:11 am #80611marionsModerator
Stella…..So good to know that your husband has found some relief. It is very likely that the abdominal paracentesis will have to be repeated periodically. I assume that he physician has ordered reduction of your husband’s salt intake as well as elevating his legs as much as possible in addition to the use of diuretics.
You might want to discuss with the physician “Creon” a pancreatic enzyme supplement that can improve the absorption of nutrients from the digestive system as it helps with nutrition and prevent weight loss.
The loss of bowel movements may be related to disease progression hence I agree with Kris in that I would ask the physician for an explanation. It might be best to use “pads” until things can be sorted out. Please know that everything you are mentioning is not uncommon to the world of Cholangiocarcinoma.
Hugs are heading your way
MarionMarch 9, 2014 at 8:49 am #80610mcwgoatParticipant
I had a major issue with abdominal fluid build up. I would get drained and have relief for 3-5 days and then the fluid build up again. It was so bad that I could fit into clothes. I look 9 months pregnant!!!
Finally, I took the doctor’s advice and they put in an abdominal drain so I could drain myself at home. I’ve been doing that the past month and it has helped tremendously. At first, I was draining twice a day. Then it’s was just once a day. As of Friday, the doctor told me to drain every other day unless I feel uncomfortable. It’s great being able to do it myself and not have to go to the hospital every time I feel bloated!
If your husband is filling up frequently and it’s causing a lot of discomfort, you may want to talk to the doctor about having a drain put in where he can do more for himself.
MaryMarch 9, 2014 at 7:08 am #80609kvollandParticipant
One of the things you can do for the fluid build up is to keep his protein intake up. The protein will help draw the fluid back into his blood stream. It’s not an instant fix but will help with the process. Meats, eggs, cheeses, cottage cheese, yogurt…. all that good stuff. If you are vegetarian then rice and beans, tofu and other protein substitutes. Protein shakes are great too. There are tons of ways to make them but we used frozen fruit, ice cream, yogurt and milk. Also we added whey protein powder….my husband liked the milk and cookies flavor and then I hid plain, unflavored in things like mashed potatoes, gravy and soups.
As for the tummy problems, I would ask the doctor. There are lots of things that could cause that. If he has had recent antibiotics that can cause issues like that. Probiotic might help regulate things (ask at the pharmacy it should be over the counter). If it continues have the doctor check a stool sample and they can tell a lot from that.
Hope this helps.
KrisVMarch 8, 2014 at 7:52 am #9638
Hi All. My husband was admitted to hospital in severe pain, this week. 4kgs of fluid was drained from his abdomen. This relieved the pain considerably. His ankles are very swollen and he is very unwell but is home again. Is there anything I can do to assist him – maybe through his diet etc, to slow down future fluid build up. Also, previously he was very constipated. Since the procedure, his tummy is going, often without him having control. Can this be expected or is there possibly something else wrong? All advice most welcome. Thank you
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