update on Ed

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Well Ed has had four radiation treatments this week and has been in bed every since. He says he is extremely tired. I know that radiation can make you tired but this fast? We have fifteen treatments in total to do and I am wondering how he is going to make all of them if he is this tired already. He seems very angry and I am wondering if this is the steoids that is making this anger come out even more than before. This whole situation has been a total nightmare on all of us, diana and I are trying our best but believe me, it is becoming very very difficult to deal with him, I cannot figure out if its steroids, radiation or him or a combo of all of above. Well, I am tired, going to hit the bed and hope tomorrow is a better day. Ten long months, it has been quite a long time.

Will keep you posted on how things go.

Linda

Comments

  • unclaw2002
    unclaw2002 Member Posts: 599
    #2
    Linda,
    Radiation took it out
    Linda,

    Radiation took it out of my father right from the beginning. He had 30 treatments but he would get to the point that he couldn't go any longer and had to just go to bed. That would hit him by 7 in the evening and he still took two naps a day. I can't speak to how radiation is effecting Ed - but radiation was much harder on my dad than the chemo.

    I know Ed has pretty much stayed in his recliner or bed since the diagnosis so I can understand your frustration. Unfortunately for Ed he may be like the boy who cried wolf. Perhaps this is really throwing him for a loop, but because he has been such a difficult patient you don't know whether to believe him or tell him to suck it up. And this is a difficult road no matter what happens so just try and keep the faith.

    My thoughts and prayers are with you and your daughter.

    Best,
    Cindy
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Donna70
    Donna70 Member Posts: 852 Member
    #4
    steroids can make you angry
    Linda,
    When I took my chemo and had steroids, I got very irritable and short tempered. It must be very depressing for Ed to have to go thru so much treatment. The radiologist could tell you if he should be so tired and hopefully they will keep track of his blood counts. All this does not make it easier for you and your daughter and you have not had an easy time before this either. My thoughts and prayers are with you. take care,
    Donna70
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    Hello our dearest friends
    Hello our dearest friends Linda and Dianna
    My heart continues to break for both of you. I know when my dad was taking the prednisone, initially to improve his appetite, which it did do, he was also very angry and short tempered. He also developed very swollen ankles and feet, which he kept until the night he passed away. I must again agree with William. He mentions the fact that you all need to have a family discussion about Ed's quality of life. Even though we sometimes think that Ed is crying "wolf", he and both of you have a one hell of a long 10 month battle. This battle with cancer does come to the point at times, when you have to look at the whole picture. Ed is beyond drained. He is extremely tired, as are you also. Quality of life at this point outweighs the quantity of years of Ed's life that are left. I am sorry to be being so upfront and honest with you Linda, but I believe it has come to that time. Give Ed your blessings. Give Ed the peace he needs to move on to his next life. When Ed is tired, let him sleep, sleep as long as he wants to. He has a long journey ahead of him. He must prepare for it. You know that my family and I have been where you are. It was one of the hardest things we had to decide, but we have learned now of how much a blessing it was to do. I will be thinking of you all and praying that you will make the right decision.
    May the Peace of God be with you at this time.
    Tina
  • lindadanis
    lindadanis Member Posts: 235
    #6
    Tina Blondek said:

    Hello our dearest friends
    Hello our dearest friends Linda and Dianna
    My heart continues to break for both of you. I know when my dad was taking the prednisone, initially to improve his appetite, which it did do, he was also very angry and short tempered. He also developed very swollen ankles and feet, which he kept until the night he passed away. I must again agree with William. He mentions the fact that you all need to have a family discussion about Ed's quality of life. Even though we sometimes think that Ed is crying "wolf", he and both of you have a one hell of a long 10 month battle. This battle with cancer does come to the point at times, when you have to look at the whole picture. Ed is beyond drained. He is extremely tired, as are you also. Quality of life at this point outweighs the quantity of years of Ed's life that are left. I am sorry to be being so upfront and honest with you Linda, but I believe it has come to that time. Give Ed your blessings. Give Ed the peace he needs to move on to his next life. When Ed is tired, let him sleep, sleep as long as he wants to. He has a long journey ahead of him. He must prepare for it. You know that my family and I have been where you are. It was one of the hardest things we had to decide, but we have learned now of how much a blessing it was to do. I will be thinking of you all and praying that you will make the right decision.
    May the Peace of God be with you at this time.
    Tina

    thanks for your replies
    I wanted to comment on the replies I received from my above posting. Ed is having extreme fatigued since starting radiation this week and although I may not agree with everything he has done, he was advised from three doctors to do whole brain radiation because he was having a huge issue with headaches and not been able to walk correctly. we were hoping not to have to do whole brain radiation but in the end, he had no choice. I cannot tell Eddie when and if to stop treatment, I believe that this is his decision and his decision only, I do not know what I would do if I was in his place, I only hope and pray that I never will be. if he had not done radiation, his tumor would of killed him. He is the only who has called every shot of his treatment since last October which included eight months of chemo and now 15 sessions of radiation. I do not know how his body has gone through so much and his oncologist is still talking about more chemo after radiation. My question is this. When does the doctor STOP OFFFERING TREATMENT!!!!. They see these patients, day in/day out/ going through hell and yet, they still offer and push treatment. I believe that they are the ones who should not give false hope to any patient, nevertheless, Eddie, he still has stage four with lots of mets, now even his brain and I do not believe that it will ever go away. It may shrink it, but not get rid of it totally. Diana and I cannot tell him what to do, he is very very adamant about making his own decisions and Wiliam, you first hand, know this. I do not agree with it all but I cannot honestly say anything about it. Ed and I do not discuss his treatments, he stays to himself, he does not ask me much about anything and I have had to live like this for ten months. I feel very very bad for him and honestly, I do not know if he made a good choice or not, the steroids he is on making him irritable and tired, I cannot figure out what is Eddie, what is radiation, what is medicine. The oncologist who was treating him with chemo has basically stepped out of the picture, leaving us with a radiation doctor that we just met. I do know that this treatment can be dangerous, I have read up on it but feel Ed did not really have any other choices other than to do it.
    Will he go back to chemo, I do not know, I think he is the one who will make that decision. He does not want our advice and we have learned to live with it.
    thanks for writing to me on this discussion, but honestly, I feel the doctors have alot to do with patients continuing with their treatment, if they had it their way, Ed would have surgery on his brain first then followed up with radiation.

    Linda
  • Ellie_E
    Ellie_E Member Posts: 50
    #7
    lindadanis said:

    thanks for your replies
    I wanted to comment on the replies I received from my above posting. Ed is having extreme fatigued since starting radiation this week and although I may not agree with everything he has done, he was advised from three doctors to do whole brain radiation because he was having a huge issue with headaches and not been able to walk correctly. we were hoping not to have to do whole brain radiation but in the end, he had no choice. I cannot tell Eddie when and if to stop treatment, I believe that this is his decision and his decision only, I do not know what I would do if I was in his place, I only hope and pray that I never will be. if he had not done radiation, his tumor would of killed him. He is the only who has called every shot of his treatment since last October which included eight months of chemo and now 15 sessions of radiation. I do not know how his body has gone through so much and his oncologist is still talking about more chemo after radiation. My question is this. When does the doctor STOP OFFFERING TREATMENT!!!!. They see these patients, day in/day out/ going through hell and yet, they still offer and push treatment. I believe that they are the ones who should not give false hope to any patient, nevertheless, Eddie, he still has stage four with lots of mets, now even his brain and I do not believe that it will ever go away. It may shrink it, but not get rid of it totally. Diana and I cannot tell him what to do, he is very very adamant about making his own decisions and Wiliam, you first hand, know this. I do not agree with it all but I cannot honestly say anything about it. Ed and I do not discuss his treatments, he stays to himself, he does not ask me much about anything and I have had to live like this for ten months. I feel very very bad for him and honestly, I do not know if he made a good choice or not, the steroids he is on making him irritable and tired, I cannot figure out what is Eddie, what is radiation, what is medicine. The oncologist who was treating him with chemo has basically stepped out of the picture, leaving us with a radiation doctor that we just met. I do know that this treatment can be dangerous, I have read up on it but feel Ed did not really have any other choices other than to do it.
    Will he go back to chemo, I do not know, I think he is the one who will make that decision. He does not want our advice and we have learned to live with it.
    thanks for writing to me on this discussion, but honestly, I feel the doctors have alot to do with patients continuing with their treatment, if they had it their way, Ed would have surgery on his brain first then followed up with radiation.

    Linda

    Linda,
    My husband, Jim, is
    Linda,

    My husband, Jim, is also Stage IVb and in the last 2 weeks he has been getting weaker. Jim just came home from the hospital today and has decided to try one more chemo and then stop. He as been getting chemo since last October and also had radiation for the mets in his spine. Like your Ed, his cancer is spreading. We have discovered that there is a palliative bridge care to hospice. The nurse from hospice met with us today and explained all their services. Unlike full hospice, Jim can continue with treatment for as long as he wants and still have hospice's support services. This may be an answer for you and Diana to take some of the burden off of the two of you. They will give as much or as little help that you want. Your local hospice office can give you all the info. Hope this helps.

    Ellie

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