Maybe I can share my story and help the "newbies"

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Hi everyone, I use to post on this website everyday when my husband, age 56, back in 2009, was having some swollowing issues and eventually October 7,2009, was diagnosed stage four, mets to liver, stomach and pelvis. He did five rounds of radiation, of which most of them did nothing except the last round, at which time, two weeks later, we found out the mets had gone to his brain. We did six weeks of whole brain radiation and this left Ed unable to basically walk, think, and he became a total vegetable laying in his bed. The radiation was a big mistake, they told us the chances of it working were less than 10%, but he wanted to do it still. His scan revealed that no only did the radiation not work, his brain tumor grew throughout radaition, these results, we never told Ed about because he never would of understood them. He stayed in bed from July to September when eventually he died of this horrible cancer.

I have been reading all the storis this morning and noticed many of you are faced with the same situation/decisions that we were faced with. I, can only say, from my personal experience, that when you are stage four with mets right from the beginning, the chemo/radiation treatment does not work, in fact, it makes you sicker and your quality of life goes right down the hill. I wish, now, looking back, that Ed did no treatment at all, that he lives his last eleven months here on earth with dignity instead of basically becoming a baby, relying totally on his daughter and me to get him through each day.

I watched as my husband struggled through this terrible disease day by day for eleven months.
He was extremely depressed right from the beginning and he became very nasty towards me throughout this whole ordeal. I do not want to get into all the emotional stuff that he put me through as well as his daughter through, but I just wanted to jump on and say listen to your heart-some of these doctors want you to go through treatment, knowing there is no cure, knowing that these treatments will not make a difference, because it keeps these cancer centers going, it is a money maker and unfortunately, we all get sucked into this. We are at their mercy, we are hoping and praying that they will cure us or our loved one and if you have stage four with mets, the cure rate is extremely low.

I do not post here much anymore, I am trying to move on with my life, as difficult as it has been, still trying to move on. I just want you to know I am always here if you would like to write to me, I will always answer you and be totally honest in what we went through with this cancer. Although we are all different, we are all in the same place when this bomb comes into our lives. The "big pink elephant" does move in and our lives are never the same from that day forward.

If I can help any of you, please write to me. I'm so sorry that I woke up this morning and decided to jump on this site and was so saddened to see so many new stage four's out there struggling with everything that we went through. My heart goes out to all of you.

Linda

Comments

  • BMGky
    BMGky Member Posts: 621
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    Thank you.
    What a poignant, heartfelt post. While so very painful to post, I am sure, it will help so many understand what they may be facing and what results may occur. I pray for you and your family's continued healing. BMGky
  • sangora
    sangora Member Posts: 213
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    BMGky said:

    Thank you.
    What a poignant, heartfelt post. While so very painful to post, I am sure, it will help so many understand what they may be facing and what results may occur. I pray for you and your family's continued healing. BMGky

    I appreciate your post
    For many, the expereience you and your family experienced is true. However, we must know that their are exceptions. I was dx as a stage IV with a completely blocked esophagus and mets to the liver. Not much spread in the scheme of things. I did the chemo/radiation program and the original tumor was resolved and the spot in the liver was reduced. It has been 22 months and with continuous treatment I am stable. I have said many times that I am fortunate in that I tolerate chemop very well. I will say that I agree with you on the point that if this goes to my brain, I am finished with treatment and will call hospice. I think people have to understand that to treat or not to treat has something to do with how much spread there is at dx. I had very little. Sam Stage IV
  • Proactive Daughter
    Options
    Hi Linda,
    Thanks for your

    Hi Linda,

    Thanks for your story. Learning that you or your loved has esophegeal cancer is a huge 'bomb' as you said. It's devastating. I see my dad falling into a depression ever since he was diagnosed. I can't imagine being the one with EC. They must face every emotion in the book, including anger. I know as the daughter of a parent with EC, I sometimes get angry.

    I know my dad is grasping at straws, whatever is recommended, he wants. Sometimes I like to barry my head in the sand and think that if we follow the Onc's recommendations, we will walk away from this. But the reality is, like you said, sometimes the cancer has spread to far.

    Thanks for your story Linda, my heart goes out to you and your daughter.

    Sincerely,

    Jennifer
  • ifalk
    ifalk Member Posts: 29
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    post really hit home
    Hi Linda

    Reading your post, my heart breaks for you. Myhusband was diagnosed in July 2011 and it has been a roller coaster ride every since. He too did chemo and although his tumor shrunk from the first two rounds of chemo and I do not regret that I do regret the 28 radiations they put him thru. You are so right about the cancer centers. We are bringing hospice in this week. Looking back I wish we would have done that in the beginning instead of putting him thru the misery. When we first found out he decided he did not want treatment, I feel it is my fault he changed his mind for my sake. I have watched him go down hill the last three months and they still want to pump the poisen in his body. Last week he finally said no more and the relief we have felt from this disicion is great. He has had no quality of life for the past three months laying there suffering when he could have gotten some of his strength back and controled his pain so much better. The radiation doctor whom I thought was so great let us down big time at our last appointment. His whole story changed. Now I just want my husband to have the best quality of life for the time he has left and we are both at peace with that.I guess I should not point the finger as basically we knew this all along, but it is in our nature to crasp on to hope and hold on for all your might I just truly wish the doctors would be more honest and let you have all your options. We were told one thing one day and another the next. you are so right they do keep you hanging on. I hope you find peace after this terrible desease. Ida
  • lindadanis
    lindadanis Member Posts: 235
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    ifalk said:

    post really hit home
    Hi Linda

    Reading your post, my heart breaks for you. Myhusband was diagnosed in July 2011 and it has been a roller coaster ride every since. He too did chemo and although his tumor shrunk from the first two rounds of chemo and I do not regret that I do regret the 28 radiations they put him thru. You are so right about the cancer centers. We are bringing hospice in this week. Looking back I wish we would have done that in the beginning instead of putting him thru the misery. When we first found out he decided he did not want treatment, I feel it is my fault he changed his mind for my sake. I have watched him go down hill the last three months and they still want to pump the poisen in his body. Last week he finally said no more and the relief we have felt from this disicion is great. He has had no quality of life for the past three months laying there suffering when he could have gotten some of his strength back and controled his pain so much better. The radiation doctor whom I thought was so great let us down big time at our last appointment. His whole story changed. Now I just want my husband to have the best quality of life for the time he has left and we are both at peace with that.I guess I should not point the finger as basically we knew this all along, but it is in our nature to crasp on to hope and hold on for all your might I just truly wish the doctors would be more honest and let you have all your options. We were told one thing one day and another the next. you are so right they do keep you hanging on. I hope you find peace after this terrible desease. Ida

    I'm glad that I could help
    Thanks to all who have replied to my post and I'm so glad that I could help someone. yes, it it always with a very heavy heart, that when I write on this foruum, it always brings me back to 2009-2010. I lost Ed September 15, 2010 and then my dear mother nine days later, September 24, 2010, the night before my 57th birthday. I went through alot, I am not going to lie to anyone. Yes, there are some people, although few and far between, that do beat this beast, however, we were told right from the beginning that Ed only had 3-6 months to live.
    Yes, what do you say when a doctor is saying this to your husband/loved one! I remember that day specifically and how Ed was sitting on the bed in the room and once the doctor spoke those words, he fell totally backwards and my sister, who is a nurse, was on the other side to catch him before he could fall off the bed. I almost passed out, I could not believe I was hearing these words and all I could think about was how were we going to go home and tell my 22 year old daughter, an old child, that her Dad was going to die. I will never forgot the pit in my stomach, it will last me a lifetime. I remember telling my poor Mom, age 78, battling copd, end stage, grasping for air as we told her that Ed was dying of cancer. How can we deal with all this. It was the first day of a nightmare in my home. Ed went into total depression, stayed in his room, only to come out for doctor's appt's., never talked, never cried, put the blankets over his head, did the chemo/radiation., until August 14, 2009, hs doctor said "Ed, we are at the end of the road here-go home on hospice". He was in a wheelchair by then, unable to walk due to the radiation issues and I remember wheeling him out of Dr.O'Connor's office, into the car, helping him upstairs to our bedroom and that was basically it until September 13th when he went into full pycotic break and hospice came over and said he would be admitted to the hospital, which is where he went for two days, unaware of what was happening, and died after another shot of morpheine Unfortunately, I saw Ed that morning until 11:30 at which time my mother was also at the same hospital, so my daughter and myself took the elevator up to see her and when I just walked into my mom's room, my cell phone ranged and it was Ed's nurse saying " Linda-are you in the hospital-Ed just died". I will leave the rest of this story out but as you can see, it was a horrible year for all of us and the end was just as horrible.

    It has been been sixteen months since their passing and I still have many many days of saddness without the two of them. Ed was a great man, a great Dad and my friend for over 27 years. We were married 25 years on August 10, 2010 and even though he was very sick, we did get him up to the church to renew our wedding vows and had a very small party in our yard.
    He said "it was the best party he ever had" and I believe it was us and for our daughter.
    Although he was nasty, I do believe to this day that Ed had brain cancer right from the beginning of his cancer and because they did not scan his head, we never knew until seven months into it. I know he loved me and I know he loved his daughter.

    I will not lie to any of you and tell you that we are fine, because, no, we are not fine without him. There is a huge hole in my heart without him but at least I know he is ok now and he is not in any pain.

    Life is precious-you never know what the next day will bring, heard those words all my life but never truly knew what they meant until October 7, 2009. Tell those dear to you that you love them, that it is ok to not do treatment if they do not want to, tell them at the end that it is ok to leave and go home with God. I know that my life is different now and I know that there is a life out there without Eddie, but I do know the true meaning of being sad, I have felt it deep within my heart for almost two years now, but as time goes on, I am getting a little better all the time. I am in therapy, have been since the month he got diagosned, still going and she helps me alot with all my stuff and emotional well being.

    I hope I did not go on too long for some of you but once I started writing, it all just came out-the good-the bad-the ugly. Hope my story will enlighten some of you and again, please write if you would like to talk.

    Linda
  • I'm glad that I could help
    Thanks to all who have replied to my post and I'm so glad that I could help someone. yes, it it always with a very heavy heart, that when I write on this foruum, it always brings me back to 2009-2010. I lost Ed September 15, 2010 and then my dear mother nine days later, September 24, 2010, the night before my 57th birthday. I went through alot, I am not going to lie to anyone. Yes, there are some people, although few and far between, that do beat this beast, however, we were told right from the beginning that Ed only had 3-6 months to live.
    Yes, what do you say when a doctor is saying this to your husband/loved one! I remember that day specifically and how Ed was sitting on the bed in the room and once the doctor spoke those words, he fell totally backwards and my sister, who is a nurse, was on the other side to catch him before he could fall off the bed. I almost passed out, I could not believe I was hearing these words and all I could think about was how were we going to go home and tell my 22 year old daughter, an old child, that her Dad was going to die. I will never forgot the pit in my stomach, it will last me a lifetime. I remember telling my poor Mom, age 78, battling copd, end stage, grasping for air as we told her that Ed was dying of cancer. How can we deal with all this. It was the first day of a nightmare in my home. Ed went into total depression, stayed in his room, only to come out for doctor's appt's., never talked, never cried, put the blankets over his head, did the chemo/radiation., until August 14, 2009, hs doctor said "Ed, we are at the end of the road here-go home on hospice". He was in a wheelchair by then, unable to walk due to the radiation issues and I remember wheeling him out of Dr.O'Connor's office, into the car, helping him upstairs to our bedroom and that was basically it until September 13th when he went into full pycotic break and hospice came over and said he would be admitted to the hospital, which is where he went for two days, unaware of what was happening, and died after another shot of morpheine Unfortunately, I saw Ed that morning until 11:30 at which time my mother was also at the same hospital, so my daughter and myself took the elevator up to see her and when I just walked into my mom's room, my cell phone ranged and it was Ed's nurse saying " Linda-are you in the hospital-Ed just died". I will leave the rest of this story out but as you can see, it was a horrible year for all of us and the end was just as horrible.

    It has been been sixteen months since their passing and I still have many many days of saddness without the two of them. Ed was a great man, a great Dad and my friend for over 27 years. We were married 25 years on August 10, 2010 and even though he was very sick, we did get him up to the church to renew our wedding vows and had a very small party in our yard.
    He said "it was the best party he ever had" and I believe it was us and for our daughter.
    Although he was nasty, I do believe to this day that Ed had brain cancer right from the beginning of his cancer and because they did not scan his head, we never knew until seven months into it. I know he loved me and I know he loved his daughter.

    I will not lie to any of you and tell you that we are fine, because, no, we are not fine without him. There is a huge hole in my heart without him but at least I know he is ok now and he is not in any pain.

    Life is precious-you never know what the next day will bring, heard those words all my life but never truly knew what they meant until October 7, 2009. Tell those dear to you that you love them, that it is ok to not do treatment if they do not want to, tell them at the end that it is ok to leave and go home with God. I know that my life is different now and I know that there is a life out there without Eddie, but I do know the true meaning of being sad, I have felt it deep within my heart for almost two years now, but as time goes on, I am getting a little better all the time. I am in therapy, have been since the month he got diagosned, still going and she helps me alot with all my stuff and emotional well being.

    I hope I did not go on too long for some of you but once I started writing, it all just came out-the good-the bad-the ugly. Hope my story will enlighten some of you and again, please write if you would like to talk.

    Linda

    This comment has been removed by the Moderator
  • I'm glad that I could help
    Thanks to all who have replied to my post and I'm so glad that I could help someone. yes, it it always with a very heavy heart, that when I write on this foruum, it always brings me back to 2009-2010. I lost Ed September 15, 2010 and then my dear mother nine days later, September 24, 2010, the night before my 57th birthday. I went through alot, I am not going to lie to anyone. Yes, there are some people, although few and far between, that do beat this beast, however, we were told right from the beginning that Ed only had 3-6 months to live.
    Yes, what do you say when a doctor is saying this to your husband/loved one! I remember that day specifically and how Ed was sitting on the bed in the room and once the doctor spoke those words, he fell totally backwards and my sister, who is a nurse, was on the other side to catch him before he could fall off the bed. I almost passed out, I could not believe I was hearing these words and all I could think about was how were we going to go home and tell my 22 year old daughter, an old child, that her Dad was going to die. I will never forgot the pit in my stomach, it will last me a lifetime. I remember telling my poor Mom, age 78, battling copd, end stage, grasping for air as we told her that Ed was dying of cancer. How can we deal with all this. It was the first day of a nightmare in my home. Ed went into total depression, stayed in his room, only to come out for doctor's appt's., never talked, never cried, put the blankets over his head, did the chemo/radiation., until August 14, 2009, hs doctor said "Ed, we are at the end of the road here-go home on hospice". He was in a wheelchair by then, unable to walk due to the radiation issues and I remember wheeling him out of Dr.O'Connor's office, into the car, helping him upstairs to our bedroom and that was basically it until September 13th when he went into full pycotic break and hospice came over and said he would be admitted to the hospital, which is where he went for two days, unaware of what was happening, and died after another shot of morpheine Unfortunately, I saw Ed that morning until 11:30 at which time my mother was also at the same hospital, so my daughter and myself took the elevator up to see her and when I just walked into my mom's room, my cell phone ranged and it was Ed's nurse saying " Linda-are you in the hospital-Ed just died". I will leave the rest of this story out but as you can see, it was a horrible year for all of us and the end was just as horrible.

    It has been been sixteen months since their passing and I still have many many days of saddness without the two of them. Ed was a great man, a great Dad and my friend for over 27 years. We were married 25 years on August 10, 2010 and even though he was very sick, we did get him up to the church to renew our wedding vows and had a very small party in our yard.
    He said "it was the best party he ever had" and I believe it was us and for our daughter.
    Although he was nasty, I do believe to this day that Ed had brain cancer right from the beginning of his cancer and because they did not scan his head, we never knew until seven months into it. I know he loved me and I know he loved his daughter.

    I will not lie to any of you and tell you that we are fine, because, no, we are not fine without him. There is a huge hole in my heart without him but at least I know he is ok now and he is not in any pain.

    Life is precious-you never know what the next day will bring, heard those words all my life but never truly knew what they meant until October 7, 2009. Tell those dear to you that you love them, that it is ok to not do treatment if they do not want to, tell them at the end that it is ok to leave and go home with God. I know that my life is different now and I know that there is a life out there without Eddie, but I do know the true meaning of being sad, I have felt it deep within my heart for almost two years now, but as time goes on, I am getting a little better all the time. I am in therapy, have been since the month he got diagosned, still going and she helps me alot with all my stuff and emotional well being.

    I hope I did not go on too long for some of you but once I started writing, it all just came out-the good-the bad-the ugly. Hope my story will enlighten some of you and again, please write if you would like to talk.

    Linda

    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
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    unknown said:

    This comment has been removed by the Moderator

    Hi Sherri
    Sherri, I hope posting on here today did not upset anyone, because, believe me, this was not my intentions at all. I know that everyone is individual, each case in separte on it's own, and I did not want to bring anyone down but when I started reading some of these stories, I started to feel like it was me writing them back in 2009. Yes, some survive this cancer but many do not. I only wish that Ed's oncologist was honest right from the beginning which he wasn't nor was his radiation oncologist. As you know, Ed delayed starting any treatment for almost two months and I think the only reason he did was for his daughter and her wishes.
    His quality of life was extremely poor right from the beginning. When the fifth round of chemo ended and we got the wonderful news that "it did something", it was immediately followed up within a week from his radiation doctor that the six weeks of whole brain radiation "did nothing, in fact, grew". I cannot tell you how sad we were when we heard that news, it just broke my heart and honestly, we could not tell Ed, the doctor actually called me and told me instead of him. I think, deep down inside, he knew it did nothing but it was too late.

    My only hope of writing on this forum is to educate people to ask alot of questions, demand answers from these medical people. They know the odds, they know how their chemo/radiation works on most people, they have the stats. My story is very different from yours, as we have talked about so much since we met, you were very fortunate that Jim's doctors were honest right from the beginning and Jim was fortunate that he never had to deal with what Ed dealt with. You as a family are very fortunate Sherri, mine, was a different story.

    Everyone has the right to know the odds-to know how other people have responded to these chemo cocktails, etc. Just ask-ask everything-soup to nuts.

    I sincerely hope that I did not hurt anyone's feelings here and I just want to say that I pray for everyone who has been dealing with cancer of anykind.

    If it were not for you Sherri and Mr. Marshall, my dear friend, I do not know how I would of
    gone through my horrible ordeal. We make lifelong friends on this forum and I'm grateful to call you "my friend".

    Linda
  • fredswilma
    fredswilma Member Posts: 185
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    Hi Sherri
    Sherri, I hope posting on here today did not upset anyone, because, believe me, this was not my intentions at all. I know that everyone is individual, each case in separte on it's own, and I did not want to bring anyone down but when I started reading some of these stories, I started to feel like it was me writing them back in 2009. Yes, some survive this cancer but many do not. I only wish that Ed's oncologist was honest right from the beginning which he wasn't nor was his radiation oncologist. As you know, Ed delayed starting any treatment for almost two months and I think the only reason he did was for his daughter and her wishes.
    His quality of life was extremely poor right from the beginning. When the fifth round of chemo ended and we got the wonderful news that "it did something", it was immediately followed up within a week from his radiation doctor that the six weeks of whole brain radiation "did nothing, in fact, grew". I cannot tell you how sad we were when we heard that news, it just broke my heart and honestly, we could not tell Ed, the doctor actually called me and told me instead of him. I think, deep down inside, he knew it did nothing but it was too late.

    My only hope of writing on this forum is to educate people to ask alot of questions, demand answers from these medical people. They know the odds, they know how their chemo/radiation works on most people, they have the stats. My story is very different from yours, as we have talked about so much since we met, you were very fortunate that Jim's doctors were honest right from the beginning and Jim was fortunate that he never had to deal with what Ed dealt with. You as a family are very fortunate Sherri, mine, was a different story.

    Everyone has the right to know the odds-to know how other people have responded to these chemo cocktails, etc. Just ask-ask everything-soup to nuts.

    I sincerely hope that I did not hurt anyone's feelings here and I just want to say that I pray for everyone who has been dealing with cancer of anykind.

    If it were not for you Sherri and Mr. Marshall, my dear friend, I do not know how I would of
    gone through my horrible ordeal. We make lifelong friends on this forum and I'm grateful to call you "my friend".

    Linda

    Linda & Sherri
    I just wanted to write and say a big thank you to you both, Linda you did in no way offend, at the moment my husband stg iv with mets to lungs, bones and goodness knows where else, is currently having 5 zaps of radiation, I did not want him to but our radiologist suggested it would help with his bone pain and with his eating, personally I think it is a case of Dr's can so Dr's do and the sad thing is Mark is hopeful that this will indeed have some impact on his eating. Here's the thing Mark has been basically bed-ridden since Christmas, his weight is nose-diving even shakes are causing him problems, I am so scared when he eats that it will end up in his lungs as there is so much coughing and burping, he seriously is looking like skin and bone.
    When we met with the radiologist I asked him straight up whether he thought that Mark could handle this and also asked for a feeding tube, he said he felt Mark was in good condition??? (Mark has lost 20kgs since diagnosis, 18mths ago) and a feeding tube would involve major abdominal surgery as the feeding tube could not be put down his throat because of scarring, they are scared of tearing his eosaphagus???, I have always said that Mark needs to make decisions regarding his treatments and I would support him, but this time I think I should have shouted louder I am so scared of how he will react to this treatment.
    Sorry to have droned on needed to get it out, so frustrated at the moment watching someone you love fade away has got to be the worst thing ever, thank you for coming back on site to help us it must be incredibly hard to relive it again.
    Ann