Does anyone feel guilty? (family member)

Manf88
Manf88 Member Posts: 20
in Esophageal Cancer #1
Good morning to all. As some of you know, my dad has EC. I live in Florida and my dad lives in NJ. I am lucky as I can see him on almost a monthly basis. However, I feel so guilty when I do or even think about doing 'fun things'. I feel bad telling him about what my family and I did on a Saturday because I know where he is, what he is doing and going through.
My brother is getting married in September and to be honest, I could care less. We are not sure if my dad will be able to go so I am not looking forward to it. Just wondering if any caretakers/family members feel this way every so often. Thank you

Comments

  • Daisylin
    Daisylin Member Posts: 365
    #2
    guilt
    I always feel guilty eating in front of my husband. He says he does not care if I eat, as long as I tell him in advance what I'm eating. (some smells make him sick, 3 months after chemo) But, nevertheless I feel guilty, stuffing my face with foods that he used to love and now can't even look at. He is starting to be able to manage some things, after a few weeks of eating virtually nothing.

    Where your dad is concerned though, I bet he'd be happy to know that you and your family are hanging in. Any time I go out with the girls, Lee is always very happy to hear the gossip and tales from my adventures. I think HE feels guilty that I've had to give up so much of my leisure time to take care of him. He wants me to be as happy as I can be. I also often feel guilty going for lunch with friends or doing fun things, and often make excuses why I can't go out. Silly, I know, but I just want to be at home with him.

    There is a very real thing called survivor's guilt, you hear about it after fatal accidents where there are survivors and I don't think people have to pass away for the survivors (caretakers) to have guilt over things such as eating or having fun. Sad but true. I'm sure your dad wants your family to enjoy life. So try to get out and have some fun, dad won't mind!

    Chantal
  • unclaw2002
    unclaw2002 Member Posts: 599
    #3
    Hi,There is no way to deny
    Hi,

    There is no way to deny when you hear the dreaded words that your father is sick with cancer that your world will never be the same. And there is no way to know what will happen as your family goes through this battle. I too was a daughter living far away from my 79 year old dad - he was in New Orleans and I lived in Delaware. I have a family and a very demanding job and a busy life. I would see him every month or so, spoke to him on the phone often. We had 18 months with him from diagnosis to his death. I did fun things with him and without him. We all got together as a family at Christmas and had a wonderful time making many wonderful memories.

    I can’t tell you how to feel but what a wonderful opportunity to share in the joy of your brother’s wedding to have family around, and pictures and memories. A chance to feel almost normal again and not controlled by the cancer. Something happy to look forward to and something for your dad to look forward to instead of more of the same cancer treatments.

    See while we were in the midst of the fight I had a talk with my dad. We talked that he didn’t want the cancer to define his life, who he was, to rob him or those he loved of the joy of life. He knew that living with cancer does not have to define or diminish an individual or a family. The cancer might eventually take his life, but he didn’t want to waste a precious moment of the time he had. Now I would like to say that he always was able to do that but we are all human and there were days that he became consumed by the cancer, the treatments and he became angry and demanding. But then we would tease him or he would think for awhile and he would chuckle and smile.

    Seeing his grandchildren do well, hearing stories from them made him happy and it made life feel a bit more normal when we weren’t thinking about the next treatment or scan. One of my nieces even went to China for a year --- a wonderful opportunity and my dad would get on Skype to talk to her. I was sworn in to the US Supreme Court and my dad a real history buff wanted to go with me but he just wasn’t able to handle the stairs and lines --- but he made me promise to take lots of pictures which I did and he went all over town showing them off to his friends (kinda like baby pictures – LOL) he was so proud.

    So, after his cancer diagnosis I didn’t plan any trips or exotic getaways no tropical beaches for me – all my time off went to spending time with him or travelling with him to doctors. We had many wonderful times and really enjoyed the time together. Again it wasn’t all wine and roses and there were plenty of frustrations. And when he went to Pittsburgh for experimental treatment we went almost every weekend to see him. But then when he took a really bad turn for the worse in May we didn’t want to leave --- but my daughter had her prom on Friday and her Graduation from high school on Sunday --- I wanted to stay my daughter wanted to skip her prom and graduation. But my mom and dad both insisted we go home and make the weekend special for her after all there is only one senior prom and one HS graduation. It was a big day and they were both so proud. And yes they made us promise to take lots of pictures and send them. As I kissed my dad goodbye that Monday I was afraid it would be the last time I saw him. The morning of my daughter’s prom my dad passed away. She didn’t want to go to her prom she didn’t want to go to her graduation. We all had to talk her into going, my mom, my nieces, friends, and her sister. And she was beautiful and managed to have a good time. We sent pictures to my mom and they ironically brought a little bit of joy into an otherwise very sad day.

    Having lots of Irish in the family my dad wanted a celebration of his life not everyone weeping for the entire time, and yes I still cry and have a hard time talking about this on some days. We wore red at the funeral --- one of his favorite colors not black. And in the New Orleans tradition combined a full military honors funeral and had a jazz band play and follow in the procession to the mausoleum--- and they played and it was pretty remarkable. We raised drinks in his memory and even made some “Harvey Wallbangers” one of his favorite 70’s drinks.

    So did I feel guilty, sometimes, but I also knew that my dad lived a full and blessed life. What he wanted most in the world was for those he loved to do the same.

    Hugs and prayers for you as you start this journey.

    Cindy
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • unclaw2002
    unclaw2002 Member Posts: 599
    #5
    unknown said:

    This comment has been removed by the Moderator

    I didn't realize you were keeping your dad's diagnosis a secret
    Hi,

    I didn't know you were keeping your dad's diagnosis a secret from him. I am a strong believer that the patient should be fully informed and at that point they can decide how many questions they want to ask or not ask. But a patient should never be denied the opportunity to know the state of their health.

    Secrets are horrible, and keeping secrets because you think you are saving someone from information they can't handle is really taking alot on yourself. I think, my personal opinion, that you should tell your dad. He should be able to decide what he wants to do --- how he wants to be treated and if and how he wants to fight or even if he doesn't want to fight. He should have the chance to see the people he wants to see, tell people he loves them and even work on his "bucket list" if he can and wants to.

    This cancer does give us a gift. The gift to appreciate and time to say what needs to be said and a chance to love your family and be there for each other. Please reconsider your decision to keep this from your father.

    Cindy
  • Daisylin
    Daisylin Member Posts: 365
    #6
    unclaw2002 said:

    I didn't realize you were keeping your dad's diagnosis a secret
    Hi,

    I didn't know you were keeping your dad's diagnosis a secret from him. I am a strong believer that the patient should be fully informed and at that point they can decide how many questions they want to ask or not ask. But a patient should never be denied the opportunity to know the state of their health.

    Secrets are horrible, and keeping secrets because you think you are saving someone from information they can't handle is really taking alot on yourself. I think, my personal opinion, that you should tell your dad. He should be able to decide what he wants to do --- how he wants to be treated and if and how he wants to fight or even if he doesn't want to fight. He should have the chance to see the people he wants to see, tell people he loves them and even work on his "bucket list" if he can and wants to.

    This cancer does give us a gift. The gift to appreciate and time to say what needs to be said and a chance to love your family and be there for each other. Please reconsider your decision to keep this from your father.

    Cindy

    telling dad
    Well, I already sent you a private message, which I hope you've read.... but, just wanted to say, that I think you are right in waiting for the testing to be done and the staging and treatment options to be available. If your dad is in as poor a condition as you posted previously, I don't blame your decision to wait. If he is so sick and weak that he is unable to have any tests done, and is suicidal and homicidal, how could he manage such devastating news? If he is not well enough for testing, he certainly is not well enough to face chemo, radiation and possible major surgery. And, not knowing the options, how could you even begin to have an intelligent conversation with him regarding it. I say, get your ducks in a row, be fully informed, then tell him. I have copied your first post here, for those of you who may have missed it.....
    Chantal

    ------------------------------------------------------------
    My father is 73. Up till now, he enjoyed good overall health. Within the past 3 months he endured the removal of his appendics and colon (no cancer found/the removals was due to severe ulcerative colitis/nonerosive gastritis). Then he needed some other surgeries due to complications of being bed-ridden (drain in leg due to blood clot) and a feeding tube due to malnutrition and failure to thrive. He lost signicant weight. During the procedure of the feeding tube a biopsy was taken of his esophagus, which was cancerous.

    Quoting the report, "a large friable mass noted at 40 cm from the incisors in the distal esophagus just proximal to the gastroesophageal junction. The esophagus was approximately 8 cm in length and compromised 50 percent of the luminal wall, although there was a clear passage through the esophageal mass into the stomach allowing the esophagus to be patent. The mucisa was very friable and malignant-appearing. Cold biopsies were obtained of the distal espphageal mass and placed in a bottle."

    Due to his current condition (weakness, malnutrtition and failure to thrive) addtional testing was not recommended until his present condition improves.

    What I am desprately seeking (I live in Florida/Dad lives in NJ) is some sort of idea of his chances of survival. We have no idea what stage the cancer is in. Additionally, due to his state-of-mind (depression, anxiety) from being bed-ridden, he does not know he has cancer yet. We were hoping he would get stronger, get further testing and then tell him. Some may think this was a bad idea, but at the time, we think he would have given up altogether. (He was having suicidal/homicidal thoughts and very confused with sense of time and mixing dreams with reality---those have all subsided).
    Given his age and present condition, I know the prognosis is not what I would like it to be. I just want to know how much time we have with him. I know no one can pin-point it or predict the future as it is in someone elses' hands, but any feedback/support would really help. Thank you in advance! It just feels good to write it all out.
  • Manf88
    Manf88 Member Posts: 20
    #7
    Daisylin said:

    telling dad
    Well, I already sent you a private message, which I hope you've read.... but, just wanted to say, that I think you are right in waiting for the testing to be done and the staging and treatment options to be available. If your dad is in as poor a condition as you posted previously, I don't blame your decision to wait. If he is so sick and weak that he is unable to have any tests done, and is suicidal and homicidal, how could he manage such devastating news? If he is not well enough for testing, he certainly is not well enough to face chemo, radiation and possible major surgery. And, not knowing the options, how could you even begin to have an intelligent conversation with him regarding it. I say, get your ducks in a row, be fully informed, then tell him. I have copied your first post here, for those of you who may have missed it.....
    Chantal

    ------------------------------------------------------------
    My father is 73. Up till now, he enjoyed good overall health. Within the past 3 months he endured the removal of his appendics and colon (no cancer found/the removals was due to severe ulcerative colitis/nonerosive gastritis). Then he needed some other surgeries due to complications of being bed-ridden (drain in leg due to blood clot) and a feeding tube due to malnutrition and failure to thrive. He lost signicant weight. During the procedure of the feeding tube a biopsy was taken of his esophagus, which was cancerous.

    Quoting the report, "a large friable mass noted at 40 cm from the incisors in the distal esophagus just proximal to the gastroesophageal junction. The esophagus was approximately 8 cm in length and compromised 50 percent of the luminal wall, although there was a clear passage through the esophageal mass into the stomach allowing the esophagus to be patent. The mucisa was very friable and malignant-appearing. Cold biopsies were obtained of the distal espphageal mass and placed in a bottle."

    Due to his current condition (weakness, malnutrtition and failure to thrive) addtional testing was not recommended until his present condition improves.

    What I am desprately seeking (I live in Florida/Dad lives in NJ) is some sort of idea of his chances of survival. We have no idea what stage the cancer is in. Additionally, due to his state-of-mind (depression, anxiety) from being bed-ridden, he does not know he has cancer yet. We were hoping he would get stronger, get further testing and then tell him. Some may think this was a bad idea, but at the time, we think he would have given up altogether. (He was having suicidal/homicidal thoughts and very confused with sense of time and mixing dreams with reality---those have all subsided).
    Given his age and present condition, I know the prognosis is not what I would like it to be. I just want to know how much time we have with him. I know no one can pin-point it or predict the future as it is in someone elses' hands, but any feedback/support would really help. Thank you in advance! It just feels good to write it all out.

    thank you
    I just wanted to thank everyone for their input. Not to give blame, but it was my mom's choice not to tell him yet. Given his state of mind and his physical condition, this was the right choice at that moment. I believe he should know, we wanted to give him some time to improve both physically and mentally and wanted to do the PET scan so we had more information to give him. Right now, we have limited information to go on because the doctor said he cannot handle any treatment due to his condition. However, he is walking with some assistance and mentally much better than a few weeks ago.
    I believe my dad realizes that he is not going to live forever. He and my mom have had many conversations during the past few months regarding a living will and other things that are between them as a married couple. I do not need to know specifics, but they are doing what they need to do for each other.
    If this were to happen to me right now, I would want to know. But that is me. I do not want to ramble on, but everyone's situation differs with the same commonality. Under these circumstances, decisions need to be made and some of them are difficult. My family and I will be going to NJ to see him and my mom, so I am going to focus on making positive memories. Thank you.
  • Manf88
    Manf88 Member Posts: 20
    #8
    unclaw2002 said:

    I didn't realize you were keeping your dad's diagnosis a secret
    Hi,

    I didn't know you were keeping your dad's diagnosis a secret from him. I am a strong believer that the patient should be fully informed and at that point they can decide how many questions they want to ask or not ask. But a patient should never be denied the opportunity to know the state of their health.

    Secrets are horrible, and keeping secrets because you think you are saving someone from information they can't handle is really taking alot on yourself. I think, my personal opinion, that you should tell your dad. He should be able to decide what he wants to do --- how he wants to be treated and if and how he wants to fight or even if he doesn't want to fight. He should have the chance to see the people he wants to see, tell people he loves them and even work on his "bucket list" if he can and wants to.

    This cancer does give us a gift. The gift to appreciate and time to say what needs to be said and a chance to love your family and be there for each other. Please reconsider your decision to keep this from your father.

    Cindy

    Thank you for sharing your
    To unclaw2002: Thank you for sharing your story. It was bittersweet and I am taking some of it with me when I go to NJ.

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