lisaann
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Dearest Friends,
Dad’s horrible ordeal was finished today at 4:15. He passed relatively peacefully and his entire family was at his bedside together. I don’t know what I can do to make a difference with this horrible disease but I am willing to devote all my pain to finding what causes it. Thank you all for being there, I am just so numb and exhausted I can barely think.Thank you all for your support. I can feel your support even through the distance.
Dad is nearly unresponsive now, but I did get the chance to tell him that he has been the best father any daughter could ask for. Once while sitting there, I wasn’t talking I just had my head down beside his pillow. He opened his eyes and said, “you don’t have to worry, I am not going to die, I will be around.”
My son was in Afghanistan. I have fought MS for 12 years. Went to school and almost have a doctorate. This is the hardest thing I have ever done.
Dear Friends,
Dad has been in hospice for about two weeks now at home. There is no chance he will get to try chemotherapy. He has steadily deteriorated since he had the external drain put in. Hospice called me home last night, I usually try to get here on Friday nights, and they state it can’t be more than 2 days.Dad has only eaten a bare minimum of ice chips for days, something like 6-7 days in a row. The completely strange thing is that he is not in pain. Sometimes they give him pain meds anyway even though he does not complain nor ask for it. Is that a strange occurence? TO have no pain with this? I am grateful for it.
Dad’s breathing seems very shallow right now, like right at the top of his chest and he can barely speak. We have to put our heads down to his face to hear. Last night he spoke to all his kids and reached his hands up to hug us. He said “I want to go out in the field and find my rest.” There is a huge farm behind us. As much as I do not want to lose him, I pray he finds that rest soon.
Thank you all so much for the comfort and advice. I may do the screaming car thing too. It feels good just to be able to let it out, even if it makes me feel guilty for saying what I really feel….
Lainy,
I read the hospice book and it is very helpful. My worry is that since I live 2.5 hours away, I might not be here when it happens. If I had a better idea of time frames, I could have a better chance of being here. I come on the weekends now and they call me when anything happens through the week. The nursing home called me yesterday about coming today and meeting with all the family and I assume that means they think it is approaching. But dad is responsive just like he has always been. He just sounds weaker.marions,
My opinion has become that anticipatory grief is worse than an unexpected death. I do well most days when I am at work. Yesterday, when the nursing home called me at work, I completely lost it and kept losing it until about 10 pm last night. The nursing home wants my brothers and myself to talk to mom today to be sure she understands nothing more can be done. I don’t really know if I can keep myself together there.
I don’t feel very strong at all right now. I am sitting here in my parents house writing this before we go to the nursing home. My dad is everywhere in this house and I can’t stand it. My feeling right now is I never want to come back here, no Christmas, no Thanksgiving, I will never be able to do it again. Maybe that sounds selfish but it is a pain too much to bear. I hope I find some of the strength you mention.
Our family is very religious or I would say spiritual. This has given me so many doubts I cannot count them. I spend most of the time when I pray, asking why. My parents went to a church for 50+ years and there has only been 1-2 people even come to see them or help in any way. On top of the extreme grief, I have this overwhelming sense of anger at these people who don’t care. I have found more love and support here on this board, than from the church members at my parents church. I don’t know what that means, but it has made me doubt alot of things.
I probably should talk to Dr. Giles. I am not sure he can help me. Knowing that you all are here has been a light in a very dark dark place for me.
Thank you all for being here. I don’t know what I would do without you all. They did give Dad IV injections that stopped the pain and they are keeping him in the hospital until he can go to in-patient hospice. At least that is the plan for the moment. They wanted to start him on chemo but the ER Dr last night, (who was quite rude) took my brother aside and basically said you’re wasting your time with the chemo, it’s too advanced.
The ONC thought he could have chemo and thought it would help. So we are just feeling like we’re getting conflicting comments from everyone. Meanwhile, Dad is just trying to get through the day for the pain. Being in the hospital with the IV’s is the only thing that helps him. Last night my mom said his urine was dark, the color of tea. Does that mean the end is near?
briola24 wrote:Hi LisaAnn,
My name is Gaby (briola24) I agree with Marion no one has an expiration date. At the previous hospital my Dad was in they had given him 3 months at the the most to live. It will be 2 years since we were told that this July 31. My Dad is currently at UCI Medical Center where he has had great doctors fighting to keep him with us.
Was it not possible to place a stent?
My Dad had the same symptoms your Dad has. His cancer is unresectable as well and it is 7cm and growing. It has spread to the rest of the liver as well as his spine.
He had stents placed on both sides, and one stent would release large amounts of bile, not so much on the other. In December they internalized the stents, and in April they tried Nano Knife.
Its now June and his cancer is spreading fast. And the Doctors told us he doesn’t have much time left, but we cant let that put us down. Everyone on here is amazing providing their support. I know everyone has helped me on this website when I feel hopeless.
Which UC is your Dad in?Yes, he does have a stent and I presume it is still working. They did not mention the stent. When they went in, there was metastisis in the lining of his abdomen? and they could not proceed. They never gave us a cm or even a tumor explanation, just the mets. Did your Dad take the chemo? This is the only option they gave dad other than the hospice, but told they could not have both at once. He is at University of Cincinnati, in Ohio.
marions wrote:LisaAnn…..the accumulation of bile in your Dad’s stomach causes the extreme nausea and vomiting however; I am wondering why the internal stent had failed and why an external drain had not be considered? There are many questions, LisaAnn. Is it possible for you to make direct contact with the physician? You Mom may have to give permission, but that is easily done.
Hugs,
MarionMarion,
I did talk to the Dr. today. As far as I know, the stent is still there and working, they did not mention it. They had a stomach pump machine going for awhile and this is how I saw the massive amounts of bile. However, they say this is temporary?? Nothing said about external drain.They are suctioning his stomach and massive amounts of bile coming out. Is this a sign for a near end? What happens when they take the suction out? I have so many questions I don’t know where to start.
Dear friends,
Today they found metastasis in dads abdomen from presumed bile duct cancer. Diagnosed as unresectable. Prognosis 3 -6 months . Just trying to hold it together. Is this a hospice diagnosis. What are the next steps? What do I need to do to help him not suffer?dmj4ctj wrote:My heart goes out to you. I know you’re very concerned and frustrated over being unable to be with your parents at this time. Have you considered getting FMLA protected leave from your job? It covers taking care of one’s parents with severe illnesses. You cannot be fired, but you might not get paid either depending on whether you have PTO you can use.
DianneThat’s the rub. I just started the job I am in now and moved and can’t take the FMLA or leave time yet.
Update, Talked to Dad’s main surgeon and they are going to transfer him to UC tomorrow. They also said that if he is not stable enough the surgery will be cancelled again…..pray this does not happen……
dmj4ctj wrote:LisaAnn,
Have they placed an NG tube in your father? This can go a long way in alleviating nausea, esp. if things aren’t moving through the GI tract very well. I’d have to say that the presence of bile is a good thing cause it’s obviously getting through his bile ducts into his duodenum. Perhaps he has a bowel obstruction? Is his abdomen distended? He may need surgery for that. I work in an OR and we see surgery for this quite often and it is frequently due to reasons other than cancer. I sure hope they get him feeling better soon. He needs to be in the best shape possible for a liver resection this week.
DianneAs far as I know he is not distended. He has had some diarrea today though, so maybe that rules out a blockage. I just pray this surgery does not get rescheduled again.
Lainy wrote:Dear LisaAnn, I am NOT a Medical person, I was a Caretaker, but I have to say, I do not understand in your Dad’s preesent Medical Condition, how they can do surgery. Are the 2 Hospitals communicating and all Doctors concerned? I simply, logically don’t see how they can do surgery in his present state. Someone needs to talk to his Doctors ASAP. I am sorry to say that a Regional Hospital is not the best place to treat CC, they just don’t get the cases. I don’t know what else to say. Guess if it was me I would find out how far the U of C is, get him transferred if possible, clear up what may be going on and then have the surgery. My husband had a double E Coli infection before his surgery and they would not touch him until the infection was clear. Best of everything and I sure hope it all works out. P.S. Is anyone with your Mother for support and strength?He does not have a tube and as far as I know, the doctors have been in contact with UC doctors. This hospital is close to home and my mother cannot drive in the city. So the decision was made to keep him at the regional center and keep him hydrated and on pain meds until they can get him in for surgery. He may be getting antibiotics too, not sure. No one is with my mother and I can’t be there as I work and live too far away. Other family members and friends are basically absent. A couple of church people have been there, but other than that, nothing. It is one of the things that stresses me out the most, but I can’t afford to quit my job. My mother is not well herself. It is an impossible situation.
marions wrote:Lisaann…I assume that your Dad has plastic stents – average life span is 90 days – often less – rarely more. As the others have mentioned, the fever may very well be related to clogging. It is something we see this frequently on this site.
However, I don’t believe that the fluid and food intake is related to the stents. But then again, only a physician will be able to answer this question. Are you contact with any of your Dad’s doctors?
Hugs,
MarionDad had a stent when he had the first ERCP and then he bled because of that. Then he had another ERCP with spyglass and they put in a different, shorter stent then. That would have been about May or so I think.
Today his fever is gone, but he is still in the local hospital getting fluids and pain meds. He can barely eat and is vomitting pure green bile as I am told by my mother. He is also having diarrhea that is yellow/green. Not sure what that means, but I would think it does mean that bile is getting out. What do you think? I am just afraid he is waiting too long for intervention but the doctors say he can wait. Surgery is scheduled for July 11th.
