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mickeyk
mickeyk Member Posts: 5
edited March 2014 in Caregivers #1
Hi, I am so glad to find a support group. My father was just diagnosed with cholangiocarcinoma or bile duct cancer. I am taking the news of this very hard as he was a very active 86 year old and has never had even minor health problems. My parents have been married for 65 years and are devoted to one in other which makes it doubly hard as I worry so about mom. My dad has been given 2 to 3 months by one doctor and 6 by another. I do not know what to expect in the coming months. This all started with what we thought would be a gall bladder operation. Dad has had two more surgeries since and another one next week. All for stint placements. His cancer is unoperatable and no chemo or radiation helps it. I would love to hear from someone who knows anything about this cancer. Also how do you get over feeling so sad. I realize that no one lives forever but it is so hard for me to accept my dad's situation. Thank you for listening, MK

Comments

  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #2
    Hi Mickey,

    Glad you found us, just sorry we had to meet here.

    First, I do not know anything about your fathers cancer; however, there are many groups on this site and people there should be able to help you out.

    As I am here because my dad died from cancer and my husband has cancer, I know full well what you
    and your mom are going thru. I know your heart is breaking from what the doctors have told you,I have learned to live with this and try to be very upbeat around my husband, and that is pretty much all we can do. Make the most of every day!

    Your family is in my thoughts and prayers!

    Sue
  • mickeyk
    mickeyk Member Posts: 5
    #3
    Thanks for writing me back so quickly. I have been taking some time for myself this afternoon and reading a lot of the postings and I already feel better. I am single which in a way is a blessing as no spouce to worry about or children to neglect but I am do feel alone with no one to talk too. Sometimes dad can be so stubborn and I get so mad and frustrated with him amd then I feel so guilty. Same way with my mom and her constant worrying about money. I have told her so many times, that she should not let those bills overwhelm her as she can not pay them anyway. For her to wait until Medicare kicks in and then make payments if need be. i have only know about this diagnosis for about 3 weeks and I find myself very angry and usually at other people. I have two brothers that try to help but it is never good enough for me. I try to do it all which isn't really fair to them. I know what is for the best and hopefully I can change and relax a bit.
    I am sorry you lost your dad and so sorry for you and your husband. That has got to be rough.
    I think this site is so great as when we get down, it is so comforting for me to know that others are going through the same thing, especially the ones that survive. I pray for you and your family as well, Thanks, again, MK
  • Lilly731
    Lilly731 Member Posts: 8
    #4
    mickeyk said:

    Thanks for writing me back so quickly. I have been taking some time for myself this afternoon and reading a lot of the postings and I already feel better. I am single which in a way is a blessing as no spouce to worry about or children to neglect but I am do feel alone with no one to talk too. Sometimes dad can be so stubborn and I get so mad and frustrated with him amd then I feel so guilty. Same way with my mom and her constant worrying about money. I have told her so many times, that she should not let those bills overwhelm her as she can not pay them anyway. For her to wait until Medicare kicks in and then make payments if need be. i have only know about this diagnosis for about 3 weeks and I find myself very angry and usually at other people. I have two brothers that try to help but it is never good enough for me. I try to do it all which isn't really fair to them. I know what is for the best and hopefully I can change and relax a bit.
    I am sorry you lost your dad and so sorry for you and your husband. That has got to be rough.
    I think this site is so great as when we get down, it is so comforting for me to know that others are going through the same thing, especially the ones that survive. I pray for you and your family as well, Thanks, again, MK

    Mickey-
    So sorry we had to meet under these circumstances, but I am very glad you found this site! The chat has been a great place for me to learn and spend time with others who KNOW how I feel. My husband was diagnosed with a form of Non-Hodgkins cancer in July and although it is treatable, it is still a very scary and emotional time. I have learned to just take it day by day...sometimes, hour by hour. Thinking of the "ifs" and "whens" do nothing but make me very angry and sad. Instead, focusing on each day seems to allow me time to really enjoy things. Good luck to you and keep us posted. Our thoughts and prayers are with you and your family.
    Lilly :)
  • CanadaSue
    CanadaSue Member Posts: 339 Member
    #5
    mickeyk said:

    Thanks for writing me back so quickly. I have been taking some time for myself this afternoon and reading a lot of the postings and I already feel better. I am single which in a way is a blessing as no spouce to worry about or children to neglect but I am do feel alone with no one to talk too. Sometimes dad can be so stubborn and I get so mad and frustrated with him amd then I feel so guilty. Same way with my mom and her constant worrying about money. I have told her so many times, that she should not let those bills overwhelm her as she can not pay them anyway. For her to wait until Medicare kicks in and then make payments if need be. i have only know about this diagnosis for about 3 weeks and I find myself very angry and usually at other people. I have two brothers that try to help but it is never good enough for me. I try to do it all which isn't really fair to them. I know what is for the best and hopefully I can change and relax a bit.
    I am sorry you lost your dad and so sorry for you and your husband. That has got to be rough.
    I think this site is so great as when we get down, it is so comforting for me to know that others are going through the same thing, especially the ones that survive. I pray for you and your family as well, Thanks, again, MK

    Hi Mickey,
    I know exactly what you are saying about getting angry and frustrated, then the guilt starts. I have been there also. I am trying to channel my frustrations at the situation. I have talked to my hubby and told him I get angry, and that I don't really mean to, and he seems to understand.
    When this first happened to us, I had the same thoughts as your mom - what about money - But I quickly got over that as there is nothing you can do about it. Everything happened so fast with my husband he was dx on a Wednesday and first surgery took place 2 days later. As for you wanting to do everything, you have to learn to let your brothers also get involved as you all have a fight ahead of you all. We have a daughter and son-in-law who have been my rock, don't know what I would have done without them in the beginning when everything was happening so fast, we really pulled together as a family, and I am sure your family is the same way.

    Try to relax and take it easy on yourself, and if you need to talk you can e-mail here at this site.

    My prayers are with you all!

    Sue
  • mickeyk
    mickeyk Member Posts: 5
    #6
    Thanks for all that responded to me. Dad is home from his third try at the stint placement and it was sucessful. He looks much better as had to have two units of blood. He also has non hopkins lymphoma and anemia which makes his red blood count drop.
    We finally talked to his cancer doctor and was told dad suffers from malnutrition. That was a shock. My mom has always been a fanatic about weight. She always had dad on a diet if he would gain a few pounds. She herself looks like a skeleton. I have been preaching to her to feed both of them more forever. She can take one chicken breast and have enough for two of them for 2 days. She takes one pot pie and divides it between the two of them. They eat cereal for supper and 1/2 a banana. All her life she has been so proud of how little she spends at the grocery store. The whole family has been taking in food for them.
    I just hope dad will feel better for a long time. His cancer doctor said that as long as those stints stay open, he will be fine. Once the cancer takes over the stints, there is nothing more that can be done. If dad was not 86, they would consider radical surgery. He is just too old and too frail.
    Thanks for listening. Good luck to all of you and your family members. mk
  • Cindy54
    Cindy54 Member Posts: 452
    #7
    mickeyk said:

    Thanks for all that responded to me. Dad is home from his third try at the stint placement and it was sucessful. He looks much better as had to have two units of blood. He also has non hopkins lymphoma and anemia which makes his red blood count drop.
    We finally talked to his cancer doctor and was told dad suffers from malnutrition. That was a shock. My mom has always been a fanatic about weight. She always had dad on a diet if he would gain a few pounds. She herself looks like a skeleton. I have been preaching to her to feed both of them more forever. She can take one chicken breast and have enough for two of them for 2 days. She takes one pot pie and divides it between the two of them. They eat cereal for supper and 1/2 a banana. All her life she has been so proud of how little she spends at the grocery store. The whole family has been taking in food for them.
    I just hope dad will feel better for a long time. His cancer doctor said that as long as those stints stay open, he will be fine. Once the cancer takes over the stints, there is nothing more that can be done. If dad was not 86, they would consider radical surgery. He is just too old and too frail.
    Thanks for listening. Good luck to all of you and your family members. mk

    Hi Mickey, I have read your posts and find them really interesting. I also see the pain between the lines. My Dad had lung cancer. My Mom has ovarian cancer, she is now 90. I am the primary caregiver because we have no other relatives to step in. Believe me I would have welcomed it if someone had stepped in to help. Instead I am left to make all the decisions and hopefully the right ones. I do as much as I can and there are times I still feel guilty that I do not do enough. I am the cheif cook and my Mom , while never skimping on food for her family, always ate like a bird due to her upbringing. I think nutrition plays a big role in healing and maintaining and sustaining us. Keep after your folks to eat and if you can try and have one meal a day with them. I have found that if I distract my Mom by talking or reading some news to her she will eat whatever I give her without thinking. Sneaky, I know, but it is for her well being I do this. Take care of yourself too and don't beat yourself up. You are doing what you can. Cindy
  • beacon
    beacon Member Posts: 77
    #8
    mickeyk said:

    Thanks for all that responded to me. Dad is home from his third try at the stint placement and it was sucessful. He looks much better as had to have two units of blood. He also has non hopkins lymphoma and anemia which makes his red blood count drop.
    We finally talked to his cancer doctor and was told dad suffers from malnutrition. That was a shock. My mom has always been a fanatic about weight. She always had dad on a diet if he would gain a few pounds. She herself looks like a skeleton. I have been preaching to her to feed both of them more forever. She can take one chicken breast and have enough for two of them for 2 days. She takes one pot pie and divides it between the two of them. They eat cereal for supper and 1/2 a banana. All her life she has been so proud of how little she spends at the grocery store. The whole family has been taking in food for them.
    I just hope dad will feel better for a long time. His cancer doctor said that as long as those stints stay open, he will be fine. Once the cancer takes over the stints, there is nothing more that can be done. If dad was not 86, they would consider radical surgery. He is just too old and too frail.
    Thanks for listening. Good luck to all of you and your family members. mk

    hi mickeyk
    so sorry to hear
    hi mickeyk

    so sorry to hear about your father, and he is lucky to have kids like you that care!

    try not to focus on what your mum and dad did or didn't eat over the years...
    you don't want your mum to feel like its her fault, as we can often blame ourselves, and research shows that longevitiy can be greatly extended in humans and animals with a calorie restricted diet, maybe his calorie restricted diet could have lenghthened his life and the progression of the disease?

    malnutrition can be found in many of the largest people you might meet,that eat waaaay more than their fair share of food too....
    often people eat a good amount, but it is nutrient deficient (ie processed foods, white flours etc) so although they get the calories, they don't get nutrients, yet others may eat a small amount of nutrient dense foods, and have low calorie intake yet high nutirent intake.

    then again ,alot of people may eat an adequate amount of healthy foods, but not absorb the nutrients due to conditions in their body,(especially older people) so you can never know what the cause is.

    my parents also eat with that "war mentality" as i call it, although unfortunately neither of them are what you could call thin, but i think alot of people from that era eat like spartans, including eating leftovers that should have been binned days ago...

    i just wanted to post this about malnutrition so you don't have to worry about the cause of it, as it could be one of many things, that we will never know...

    but i hope that he will enjoy being so well looked after by you all...
    it must be so hard for you...

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