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My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Discussion Board Forums Introductions! My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin

Viewing 15 posts - 31 through 45 (of 125 total)
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  • #16654
    lisa-ann
    Member

    Hi Jules,

    I am so sorry that my posts made you cry. It must be so difficult for you to read my Dad’s story so soon after you lost your Father. The pain and emptiness you are feeling must be overwhelming.

    We do not try and force Dad to eat anymore, as he only gets aggrevated. When he wants something, he asks, and gets whatever he wants. The sleeping is probably one of the most difficult things to adjust too, because its time you cannot spend with them.
    However, I know that while he is sleeping, he does not feel nauseated and he feels no pain, so I guess I am glad for that.

    I have been thinking about what everyone says, not to leave anything unsaid and tell him how much I Love Him, etc. With my Dad that is very difficult to do, as he hides all emotion. In all my life, and I turn 45 this month, I have never once seen him cry. Some of my sibblings hold that against him, because he never cried when my biological mother passed and then again when we lost my little sister at the age of 26 to a rare cancer as well. He never really spoke of them again. I look at it as that he just he way of dealing with things, he internalizes everything. I know he was very saddened at both those losses. When my sister passed, it was like the wind was taken out of his sail. She never got the chance to do anything she dreamed of doing in life. She married 2 months before she died, but never got the chance to be a Mother herself. She was very angered at the fact that she was dying, but put up a fight like no other.

    I know when the time comes, in some way he will know how I truly feel about him. I find myself kissing him more often or just touching him, and I think he knows what I am trying to say to him.

    I will post again hopefully today when we get the results.

    Thanks For Caring,
    Love Lisa

    #16653
    jmoneypenny
    Member

    Dear Lisa Ann,
    I was away all weekend and just now catching up on your posts. I’m so sorry that the brief time of feeling better didn’t last longer for your dad. I guess you didn’t get to do anything for your parents’ anniversary, then – but I’m sure you all celebrated in your hearts that you still have each other – such a precious thing to be grateful for, and you only truly realize it when it’s all being threatened.

    I know you’re feeling terrible right now but I know there’s also nowhere else you’d rather be than by your father’s side, even just watching him sleep. You’re a wonderful daughter and I’m a little envious of you, believe it or not, that you still have your dad in this world and can do little things for him. I’m not saying that to make you feel bad or that you’re lucky – it does sound horrible, doesn’t it? We never want our loved ones to suffer but there’s that glimmer of selfishness that wants to keep them here for us. I would never want to go through what you’re going through – again – but at the same time any memory of being with my mother is precious, even the end.

    I know you will figure out a way to keep a little hope alive in your father, no matter what the results of the tests and what the doctors say. He may get depressed because he realizes the situation is bad, and you don’t have to lie to him, but just a little bit of hope to keep all of you afloat amidst all the pain. Your job right now is the hardest one of all: you’re bearing the burden of all the anguish and you feel like there’s nothing you can really do and you can’t show any of the helplessness, fear and sadness. It’s what you have to do for your beloved dad, but I know it’s hard, it’s heartbreaking. Just always remember that you are doing everything RIGHT and there’s no reason to feel guilty or like you’re not doing enough.

    There may still be some real treatment they can offer – some way to alleviate the vomiting – so maybe it’s not as bad as it seems. We can never predict how this evil disease will progress. Here’s hoping they can do something.

    Don’t give me too much credit for being a caring person – it’s partly selfish, because re-living my mother’s nightmare is actually therapeutic for me and it’s something I need to do. So you’re actually helping ME by letting me relive everything and vent a bit. If I can help you just a little bit, just by being there for you, it makes me feel I’m doing something for my mother. So you are not only caring for your dad, but for me, too!

    Lisa, I hope there’s some good news coming your way soon. Thinking of you-

    Joyce

    #16652
    jules
    Participant

    Lisa Ann

    It will mean so much to your Dad that you are there for him right now, supporting him in whatever way that you can. I know it is just so hard when they sleep llike this. I remember (and regret) how I kept trying to push food into my Dad when really he didn’t want it and he just wanted to sleep. I now wish I had just accepted the situation and just helped to keep him as comfortable as I could.

    I understand your restlessness regarding the scan result. I remember the anxiety and sheer torture of the days leading up to results day. Looking back, I see now that that was just an extra burden that we had to carry that was so unfair. My Dad’s scan results ALWAYS showed stable disease. I don’t want to sound too gloomy, but I want to prepare you – my Dad lost alot of weight very quickly, stopped eating and drinking and just faded peacefully away.

    I understand that you are trying to stay positive for him and I was always that way with my Dad, I think that if I had taken away the hope then he would have been left with despair and he couldn’t have coped with that. My Dad tried to talk to me and get me to acknowledge that he was leaving me, I think he got quite frustrated and felt alone at times that nobody would accept it, although he seemed to fluctuate – other times he would want to ask me to do this and that for him (eg get him some shopping in, arrange further treatment sessions) that gave me the impression that he still had hope.

    Lisa, this disease is just the pits. It is just so cruel and so so hard on us all. I cried reading your post because I understand so well where you are coming from. I am hoping that the Drs are able to offer your Dad something, we all hope for miracles in this situation, but at the same time just cherish every moment with your dear Dad, I’m sure you are doing that anyway, don’t leave anything unsaid. I will never forget the moment when I leant over my Dad’s bed and I stroked his cheek and I told him that I had always thought the world of him, he replied that he had always thought the world of me too and kissed me on the cheek. That moment comforts me so much now.

    I will be thinking of you, love Jules

    #16651
    lisa-ann
    Member

    Hi Again,

    Not much has changed since I last posted. The weekend was not good as he was sick vomiting and slept most of the time. His pain managed to break through this morning, because he slept past the time the patch should have been changed out. He continues to eat the littlest amount of food and not drinking much either. How do you get a person to eat or drink anything when they sleep the majority of the day. Thats one thing that is most frustrating. He is not even getting any of his other medications, because he is not awake for those either. I do not know what to do.

    We are anxiously awaiting the results of the sans, we we are supposed to get tomorrow. His weight loss has got to be over 50lbs as of this week, and much muscle loss also. His face is the only part of his body that has not changed drastically and for that I am glad. I know that too will change appearance, but thus far remains just a little thinner looking, not as drastic as the rest of his body.

    He did have a visit from my younger brother on Saturday, and he fought to say awake.
    He did such a good job of acting like there was nothing wrong, no one would ever guess that he is so sick. He was jovial and upbeat the whole time, and was awake much longer than usual. He did take a 45 minute nap while we ate dinner, but was awake for almost 3 hours. Needless to say, he slept the whole next day except for about a 1/2 hour at which time he got up drank a cup of tea and then vomited it right back up. He keeps asking where all the vomit is coming from, since he is not eating. It is so exhausting for him when he gets sick, it takes every bit of energy out of him.

    I am trying to stay positive for him, but I am afraid of what the results are going to be tomorrow. I still think he is hopeful, in that they will say they can do something for him.
    Will we then be faced with telling him there is nothing, no hope, no anything and watch the depression set in on top of everything else. I am very restless today, preparing for a possible sad day tomorrow. The waiting has to be the hardest part right now. So many questions, so few answers.

    I will post tomorrow again tomorrow as soon as we get word.

    Hugs Lisa

    #16650
    lisa-ann
    Member

    Hi Joyce and Missing U,

    We all must have been posting at the same time.
    I just read your posts from tonight, after posting my update.

    In response to both your posts, I can only say what wonderful caring people you truly must be.The fact that the both of you have taken the time out of your busy days to think about Dad, Mom and myself, only convinces me more how special you must be.

    I agree we do not know each other very well, yet I have begun to feel as though I am getting too. I cannot possibly put my thoughts into words as well as the both of you manage too, but I do feel your pain. I know how difficult it must be to support me and my family, when you have to keep re-living the suffering and heartbreak of your own experiences. All I can say is that your Dad and Mom obviously live in your hearts and minds and have given you the strength to go on and help others deal with the most difficult part of life. I can only hope that I can help others in the same caring way that you are helping me. I have gotten more support and love from the both of you, than I have gotten from people I have known all my life, and for that I thank you.

    I listen to every word you say, and am trying to live each day as best I can under the circumstances.I too check the board everyday, as it is comforting to know that you are both here for me. Once again, stay as special as you are, for you a helping me more than you know.

    Luv Lisa

    #16649
    missing-u
    Member

    Hi Lisa- wonderful that no mets were found to the brain! I know how absolutely time stands still while waiting for the results of tests and I wish you strength to guide you through those long anxious moments.

    Your dad’s sense of humour is refreshing… he sounds like a really neat man! I’m glad that he feels up to going to the Flea Market tomorrow… it will probably feel nice to get out in the fresh air and to do something normal. I know he’ll not feel completely fine the entire time, but the outing will be good for everyone’s soul… these are precious memories and as I look back, the memories I most treasure are the simple ones.

    Lisa… don’t feel that there is a certain expectation to post from those of us who respond and are concerned for you… there aren’t any rules or expectations- I think the more we get to know each other, the remote involvement sometimes means that we also anxiously await news and sincerely hope all is well. It is beginning to feel to me that we are a family of sorts, not connected by illness, but connected by the common denominator of the love we feel for one of ours who is experiencing one of life’s greatest challenges. So, our love and concern is what unites us.

    Have a wonderful weekend with your family!

    Missing U

    #16648
    lisa-ann
    Member

    Hi Everyone,

    Sorry I am just getting the chance to write and give everyone an update on Dad. Things have been such a rollercoaster ride the last few days. As of yesterday morning the confusion and hallucinating seem to have subsided, so I truely believe that he was over medicated with the fentanyl and oxycodone. He does not have access to his medications anymore, they are all hidden. He was still pretty sick yesterday morning, but as the day went on, he seemed to improve slightly. He is once again not complaining of any pain, but is still nauseous. It also seems that the vomiting is worse in the morning, and of course his meds come right up along with the bile. I suggested maybe trying the compazine in suppository form, thinking it may get into his system to do the job. He is trying to eat, very little of course, and is drinking fluids better. Although I know he is dehydrated, he is keeping more fluids down for the time being, so I am not going to fight with him about the hospital. I did tent his skin on his hand to show him how dehydrated he is and compared it to mine, but he just laughed and rubbed his skin till it went back into place. He is so stubborn, yet I am the same, one of his bad traits that he passed onto me. I am really a bullhead, and everyone reminds me of that daily.

    The testing went well and the results of the MRI show NO mets to his brain, which is just what I had expected to hear. The results of the CatScan of his chest, abdomen and pelvis and the PetScan will not be given to us until Tuesday, ah yes, we wait once again.Of course when Dad was made to drink the concoction for the CatScan, is was only minutes until he vomited all that back up, but they did not make him drink anymore. Dad said to me as we were waiting that by the time they get the results and figure out what they need too, we should just call the funeral director and save a step, because he is going to die before they decide how to treat him. Sometimes I have to agree with him as it is all so frustrating. We just want answers, so that we can make decisions, and keep him comfortable. I know my Dad never thought he would have to suffer through an illness like this, he always thought he would have a major heart attack and go quickly. He would never have to worry about being taken care of, or losing his independence and dignity. I think that is the most diffcult part for him and of course for me, I always thought he was indestructable.

    When we got the results of the MRI today, he once again seemed a little relieved, so I think his spirits picked up a little. In fact he was joking a little more like Dad, so far as to put on a dark jacket and dark hat and tell Mom he was all dressed for Halloween. Mom said “What are you talking about Jim?” and he answered chuckling, “I am going out as the Walking Dead”. I know it must sound morbid to all of you, but that is my Dad’s sense of humor as morbid as it may be. That is how he deals with this. However, he was then caught talking to the dog, and telling her that he wasn’t long for this world, and she would have to live with the Warden (Mom). I have had thier yellow lab Abbey on a diet for months because she is obese, and Mom remains strict with her. Dad on the other hand still feeds her whatever he is eating, and lately thats alot, since he is eating so little. AHHHHHHHH but I can’t yell at him, not now. He loves that dog. Dad is like me with the animals, in that he loves them more than some people, as thier love is true and unconditional. They love you no matter what and never ask for anything more than to be close and by your side.

    Dad asked me today if I was taking a ride with him tomorrow to the Flea Market. I said are you up to that, and he told me, oh yeah, its going to be a nice day tomorrow.
    So Mom and me will go with him even though he usually gets pretty sick while we are there, but he still wants to go and I think it comforts him. I actually thought that I could take my camera, and snap some photos of him without him taking notice to what I am doing. My parents anniversary is on Sunday, and I am going to get some photos of them together as well. I cannot take them out or do anything special for them, as he would rather just be home, but I will try to make it special as best I can.

    So, I am back to trying to be and think positve once again, and take in all I can while he is having a few good days. My brother is stopping up tomorrow night to see him, and I think he is looking forward to that as well. So I am hoping for a good weekend with him, I do LOVE him so much.

    Thanks for all your input and advice, caring and support,
    Lisa

    #16647
    jmoneypenny
    Member

    Sorry I was bit confused in my last post – I meant to say I second everything Missing U said
    Joyce

    #16646
    jmoneypenny
    Member

    Lisa,
    I second everything Lisa said – I keep checking to the board to see if you have any news – though we don’t really know you, we care and we’re concerned about how it’s going with you, your dad, your family.

    Here’s wishing you strength-
    Joyce

    #16645
    missing-u
    Member

    Hi Lisa- Just a little note to let you know I was thinking about you and your mom and dad. It was this time last year when my Dad started feeling sick and reading your experience brings back so many memories. I didn’t really have many people who were able to help and I just wanted someone to understand… so, although I can’t understand completely what your situation is like, I wanted to let you know that I am very sorry this is happening and I sincerely hope that things are a little more stable… and my heart that has weathered many storms since last year, has broken and mended several times over… my heart goes out to you.

    Brightest Blessings,

    Missing U

    #16644
    jmoneypenny
    Member

    Dear Lisa,
    You’re in such a difficult situation, I know. Since it’s nighttime and he sleeps a lot, I guess waiting till the morning appt is best – and maybe he did take too much of the painkillers. If he’s lucid enough to act normal if an ambulance came, then I think he’s still pretty rational – probably just angry at the disease and what it’s doing to him, and I can’t blame him – and some chemical imbalance from the disease and the medications are adding to that. I do think he will get looked at when you’re at the doctor’s – I’m sure they’ll see signs of his physical distress, and recommend something – but doctors can be brainless so you may have to bring it up to them!

    My heart goes out to you – hope everything gets better tomorrow

    Joyce

    #16643
    missing-u
    Member

    Hi Lisa- I am sorry at this recent turn of events. You’re absolutely right, you have to respect your dad’s wishes. Perhaps if you can find out the impact that not going to the hospital will have on him and let him know, that way he is making an informed decision.

    What initially brought my Dad to the hospital was constant vomitting- not holding anything down… and the pain as well. In Canada we have this toll free health advice number and when I called, not knowing what to do, they called the local hospital, explaining my Dad’s symptoms and called us back to have my Dad go in. It turned out that my Dad was dehydrated. He also had very low haemoglobin and was transfused. The doctor told us if we hadn’t bought him in, he was at risk of a heart attack due to the low haemoglobin. Although the transfusion and the IV fluids didn’t prolong his life (which was not our intent it the longer life meant longer suffering), but they did prevent further damage to his body and I am so glad he didn’t have to contend with anything else.

    I’ve read and was also told that we may think the body is hungry or thirsty, but at certain stages of illness, the individual does not experience these things. Not much comfort when you watch someone seemingly starve… however, my Dad made his decisions and that amount of independence is significant when the illness seems to be determined to do damage.

    We all know how difficult this is, Lisa. I also respect the difficult space you are in with your siblings. My own family kept telling my Dad stories of survivors and this was painful to hear, not every story ends happily, or with extended years of quality life. It seemed like too much unfair pressure put on my Dad. Like Joyce, I also had to bear much of the burden, being the only one who was realistic… often the cost was anger and hostility towards me… and I was sadder than most at what was occuring.

    If he is sleeping that much and appearing confused, it may be excess ammonia as Joyce suggested. There are procedures such as stents which will ease the symptoms of this… and if he is in pain, it is important to have him comfortable. My Dad went almost immediatly to Dilaudid and it wasn’t long until he needed break through doses.

    Peace and prayers go out to you, your mom and your dear dad.

    Missing U

    #16642
    lisa-ann
    Member

    Hi Joyce,

    I cannot call an ambulance because he will just act normal at that time and tell them NO. I realize also that it could be alot of different things that could be causing this and I am so frustrated. Mom was waiting to set hospice up unitl after this weeks testing was complete.

    I was just up stairs sitting for an hour, they are both in bed and didn’t hear me come up. I am so restless, and cannot sleep. I am a little exhuasted myself, mostly from all the worrying.

    He does know about his appointment tomorrow and I am sure he will go, he has been very good about that. I also think there is a possibility that he overdosed on the fentanyl patch. He changed his own patch in the middle of the night almost a day ahead of schedule and then took some oxycodone on top of that. We hid everything now, so he does not have access to it.

    I will let you know if anything changes, and I am trying to hang in there.

    Hugs Lisa

    #16641
    jmoneypenny
    Member

    Hi Lisa,
    Oh, this is so tough for you! I know you have to respect his wishes, I agree with everything cdr said, but if he’s hallucinating he may have ammonia buildup or something that sounds like that that I”ve read about here, so he may not be really capable of making a rational decision. My biological father had brain cancer and became very cantankerous, wouldn’t let anyone change his bed, became verbally abusive – not because of the brain necessarily, they said it may have been the steroids or dehydration or the cancer, they couldn’t tell – but he wasn’t really lucid, it wasn’t really HIM, if you know what I mean. THey did manage to regulate it and get him back to his cranky but normal self.

    I dearly hope you can ease this latest pain somehow – if you could just get someone to make house calls! I suppose there’s no way to call an ambulance to pick him up? He really should be seen to – that was the advantage of hospice, that the nurse could come right to you. Will you even be able to get him to go to the doctor tomorrow?

    I’m thinking of you and worrying and I wish I had some way of helping.

    Hang in there,
    Joyce

    #16640
    lisa-ann
    Member

    Hi Everyone,

    Dad is not doing well again, this is the worst I have seen him. He is complaining of pain again, and is now confused and hallucinating. He started vomiting again yesterday, so we are unable to keep the least little bit down. I am certain that he is dehydrated which would possibly be causing this. We called his Primary Doctor and he suggested getting him to the hospital to at least try and rehydrate him. Dad will not go. He has only been awake for maybe 1/2 hour since 8PM last evening, and it is now 8:30 PM the following day. He ate a jello when he was awake and vomited it back up 10 minutes later.

    I don’t know what to think, or do for that matter. He is so strong willed and we can’t get him to budge. On top of that he is now so confused that he is getting nasty and aggrevated.He is scheduled for a CT Scan and PetScan tomorrow AM, so I am hoping that once we get him to the hospital, they will do something for him. The ride to the hospital is 1 1/2 hours away, so I am not looking forward to all the travel time with him being so sick.

    I am very restless, and worried that we are going to lose him, much faster than I ever thought if we can’t get him to cooperate. I cannot just pick him up and carry him out of the house and take him, because I have to respect his right to make his own choices.

    I will write again later on, I am going back to check on him again.

    Thanks For Listening,
    Lisa

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