Esophogeal Cancer Stage 4

mmoore0716
mmoore0716 Member Posts: 2
in Esophageal Cancer #1
Hello,
My Dad 63 was diagnosed Jan 2011 with stage 4 Esophogeal cancer and was sent home with a feeding tube in his stomach and given 3 to 4 weeks to live. That was over a year ago, He is still alive today by the grace of god! And still cannot eat or drink anything unless put through his tube. He was told that it was too late for Surgery and he didnt have insurance for chemo and radiation, so he was basically sent home to die last year. But he is a fighter and he is surely not ready to die so he gets up everyday and makes sure that he gets up and gets his daily exercise and sunshine atleast 30-45 minutes a day. He intakes cans of HN ( full of vitamins) that Hospice gives him as his main source of food to put in his tube also intakes cans of Ensure and lots of water. Oh by the way, did I forget to mention..... He still smokes two packs of cigarettes a day. He is old, stubborn and hard headed and will not quit! I dont know how he still going over a year later, but he is. My main concern now is that his pain medicines were changed ( to stronger) , and now when he is home alone he will be watching tv and dozes off during commercials with a lit ciagrarette in his hand and has already burned holes in all of his sheets blankets and pillow cases. He is going to end up catching himself on fire! Good Lord!! Someone help, he will nto quit smoking, lives alone and his memory is kinda starting to go... he repeats himself alot in conversations but for the most part he is still my same ol' dad! I just wander if maybe the cancer is spreading to his brain and making his memory bad? I dont know what else to do anymore.....

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • JReed
    JReed Member Posts: 428
    #3
    Sounds like another Rockstar to me!
    I was so afraid to open and read your post and then BAM! your dad was diagnosed a year ago and no chemo or radiation due to insurance (which should be a crime!) - still smoking and LIVING! I was so happy to read your post, your dad makes me smile.

    You must be very scared that dad has already burned holes into things - I have burned many a hole from smoking - my husband gets so mad with me. I don't like it either, but it's what I do.

    I think Sherri has a very sound idea with having hospice come in at night to check on dad. He surely isn't going to quit smoking at this stage in the game and it would be very hard on him if he did quit in all likeliehood. We have fire safe cigarettes - they go out on their own in a minute or so if you constantly puff on them - probably a good idea. Are you able to purchase any of those for dad to smoke?

    Please send me a private message (pm) if you need additional information. I'll be happy to help you if I can. He has smoke detectors located close to where he would be smoking right?

    Hugs to you,
    Judy
  • Court_Ren
    Court_Ren Member Posts: 27
    #4
    Wow, he is a true miracle.
    Wow, he is a true miracle. That is amazing. I am so glad that you have been able to enjoy him for much longer than you were ever told. The smoking thing,well I wish that he would quit as well, and I don't even know him. My husband has EC, and is not a smoker, but did when he was really young. I pray that your dad doesn't start himself, or anything else on fire. They do make fire proof capes that you can wear. Also the pain meds make my hubby tired as well. Sorry to hear that they needed to be stronger, but glad that he will be more comfortable. It really is to bad that insurance wouldn't cover anything for him. How is it that you can't treat someone because they aren't able to afford it. I don't want to get into politics, I just wish that there was a way. How is it that you can send someone home to die because they can't afford medication. Sad, but God must really be shinning down on him as he is a fighter and has done this with his strength and will. God bless your family.
  • Daisylin
    Daisylin Member Posts: 365
    #5
    Court_Ren said:

    Wow, he is a true miracle.
    Wow, he is a true miracle. That is amazing. I am so glad that you have been able to enjoy him for much longer than you were ever told. The smoking thing,well I wish that he would quit as well, and I don't even know him. My husband has EC, and is not a smoker, but did when he was really young. I pray that your dad doesn't start himself, or anything else on fire. They do make fire proof capes that you can wear. Also the pain meds make my hubby tired as well. Sorry to hear that they needed to be stronger, but glad that he will be more comfortable. It really is to bad that insurance wouldn't cover anything for him. How is it that you can't treat someone because they aren't able to afford it. I don't want to get into politics, I just wish that there was a way. How is it that you can send someone home to die because they can't afford medication. Sad, but God must really be shinning down on him as he is a fighter and has done this with his strength and will. God bless your family.

    Smoking.....
    I'm so glad to hear that your dad has been such a trooper!!! As for the smoking, he's not going to quit, and hey, why should he at this point? (aside from burning down the house, that is) My husband, towards the end, started doing the same thing, falling asleep with a cig in his hand. We always smoked outside before, but we changed the rules when he was unable to get around easily. Many times, I would catch him sitting on the chair, smoke in hand and sleeping!! I would get so mad, and scared too. I was still working at this point, and was terrified that he'd fall asleep when I was out and burn the house down. I sometimes wondered about brain mets, but we never ventured to be tested for it, since he already had mets to liver, spleen, bones and ribs..... just didn't need one more kick while we were down.

    I certainly don't have any solutions to his smoking problem, just wanted to let you know that you're not alone. perhaps hospice could make more frequent visits, just to check on him. Also, put in some extra smoke detectors where he spends most of his time. The pain meds may be causing this sleepiness and forgetfulness as well, perhaps he needs to have his medications re-evaluated and adjusted accordingly. Or he could try to adjust his smoking habits, not quit, but only smoke, say... at the kitchen table in a chair where he's not as likely to fall asleep (something not so comfortable as the bed or couch)

    Be well,
    Chantal
    wife of Lee ivb
    deceased Nov 8, 2011
  • mmoore0716
    mmoore0716 Member Posts: 2
    #6
    Feeding tube stained
    Thank you all for your kind words and support, you all helped put a smile on my face, that I really needed. I really felt alone in this one, but you all showed me that I am not. Thank you all kindly. :) I do have one more question for everyone if you dont mind..... My dad has had his feeding tube for over a year now and it is really stained up and the stopper on the top is falling apart, we tried cleaning the tube with club soda but that eventually stopped working. I think between the ensure,tea and coffee it just looks horrible. To give you an idea of what it looks like, it looks like it has chocalte milk sitting in the tube at all times, but its just stained that bad. We have a nurse coming out to the house this Thursday ( this is about the 3rd nurse he is showing now)
    to look at it, because we have asked if they can replace it, so we will see what happens then. Has anyone else had this type of problem or needed a tube replaced. He is using the J-tube which is placed through his stomach. At this point it is still working, but dad is so frustrated he is ready to cut it himself and try to re-attach it with another piece of tubing himself. God forbid this happens.... But if he gets too impatient he will try. He has already threatened to go down and find some tube they use on fish tanks and place this tube on top of the one he cut and use a cork for the stopper if he has too....lol... this is how frsutrated with the tube being dirty he is. I love my dad, but if he tries something like this I dont know what Ill do then.
    He thinks that the nurses and doctors are taking too long to do something about it, and I have tried to explain it just takes time because of procedures they must go through.
  • sangora
    sangora Member Posts: 213
    #7
    mmoore0716 said:

    Feeding tube stained
    Thank you all for your kind words and support, you all helped put a smile on my face, that I really needed. I really felt alone in this one, but you all showed me that I am not. Thank you all kindly. :) I do have one more question for everyone if you dont mind..... My dad has had his feeding tube for over a year now and it is really stained up and the stopper on the top is falling apart, we tried cleaning the tube with club soda but that eventually stopped working. I think between the ensure,tea and coffee it just looks horrible. To give you an idea of what it looks like, it looks like it has chocalte milk sitting in the tube at all times, but its just stained that bad. We have a nurse coming out to the house this Thursday ( this is about the 3rd nurse he is showing now)
    to look at it, because we have asked if they can replace it, so we will see what happens then. Has anyone else had this type of problem or needed a tube replaced. He is using the J-tube which is placed through his stomach. At this point it is still working, but dad is so frustrated he is ready to cut it himself and try to re-attach it with another piece of tubing himself. God forbid this happens.... But if he gets too impatient he will try. He has already threatened to go down and find some tube they use on fish tanks and place this tube on top of the one he cut and use a cork for the stopper if he has too....lol... this is how frsutrated with the tube being dirty he is. I love my dad, but if he tries something like this I dont know what Ill do then.
    He thinks that the nurses and doctors are taking too long to do something about it, and I have tried to explain it just takes time because of procedures they must go through.

    Tubing
    I, too, have a feeding tube and mine looks pretty raunchy but still works just fine. In my case the mass in my esophagus has gotten too large for them to get the instruments down to replace mine. There is a more invasive procedure that can be done but as long as the tube works many docs are reluctant to do this. I have no idea, but this could also be the case with your dad. Mine is 2 years old so you can imagine how it must look. Mine bothers me as well, but I try not to think about it and noone else sees it. Tell him to not take the situation into his own hands as this could prove to be deadly. Sam Stage IV
  • Unknown
    Unknown
    #8
    mmoore0716 said:

    Feeding tube stained
    Thank you all for your kind words and support, you all helped put a smile on my face, that I really needed. I really felt alone in this one, but you all showed me that I am not. Thank you all kindly. :) I do have one more question for everyone if you dont mind..... My dad has had his feeding tube for over a year now and it is really stained up and the stopper on the top is falling apart, we tried cleaning the tube with club soda but that eventually stopped working. I think between the ensure,tea and coffee it just looks horrible. To give you an idea of what it looks like, it looks like it has chocalte milk sitting in the tube at all times, but its just stained that bad. We have a nurse coming out to the house this Thursday ( this is about the 3rd nurse he is showing now)
    to look at it, because we have asked if they can replace it, so we will see what happens then. Has anyone else had this type of problem or needed a tube replaced. He is using the J-tube which is placed through his stomach. At this point it is still working, but dad is so frustrated he is ready to cut it himself and try to re-attach it with another piece of tubing himself. God forbid this happens.... But if he gets too impatient he will try. He has already threatened to go down and find some tube they use on fish tanks and place this tube on top of the one he cut and use a cork for the stopper if he has too....lol... this is how frsutrated with the tube being dirty he is. I love my dad, but if he tries something like this I dont know what Ill do then.
    He thinks that the nurses and doctors are taking too long to do something about it, and I have tried to explain it just takes time because of procedures they must go through.

    This comment has been removed by the Moderator
  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #9
    mmoore0716 said:

    Feeding tube stained
    Thank you all for your kind words and support, you all helped put a smile on my face, that I really needed. I really felt alone in this one, but you all showed me that I am not. Thank you all kindly. :) I do have one more question for everyone if you dont mind..... My dad has had his feeding tube for over a year now and it is really stained up and the stopper on the top is falling apart, we tried cleaning the tube with club soda but that eventually stopped working. I think between the ensure,tea and coffee it just looks horrible. To give you an idea of what it looks like, it looks like it has chocalte milk sitting in the tube at all times, but its just stained that bad. We have a nurse coming out to the house this Thursday ( this is about the 3rd nurse he is showing now)
    to look at it, because we have asked if they can replace it, so we will see what happens then. Has anyone else had this type of problem or needed a tube replaced. He is using the J-tube which is placed through his stomach. At this point it is still working, but dad is so frustrated he is ready to cut it himself and try to re-attach it with another piece of tubing himself. God forbid this happens.... But if he gets too impatient he will try. He has already threatened to go down and find some tube they use on fish tanks and place this tube on top of the one he cut and use a cork for the stopper if he has too....lol... this is how frsutrated with the tube being dirty he is. I love my dad, but if he tries something like this I dont know what Ill do then.
    He thinks that the nurses and doctors are taking too long to do something about it, and I have tried to explain it just takes time because of procedures they must go through.

    Hi,
    I am 37 years old, was
    Hi,

    I am 37 years old, was diagnosed and treated in 2006. I am a survivor, but for weight reasons, keep a j-tube. You can very easily have the j-tube replaced. It is very simple. Please ask your doctor. Mine currently has a stopper that screws on. I have replaced the stopper once in the past year (j-tube replaced in the fall 2010).

    I used Carnation VHC (Very High Calorie), as it is 560 calories a can.

    Please le tme know if I can help.

    -David,
    Hillsboro, OH
    Stage III, 2006

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