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When to state facts to a totally wonderful guy…

Forums General Melanoma Community When to state facts to a totally wonderful guy…

  • Post
    Nancy
    Participant

      The day is drawing near, at least I think so, when difficult things must be answered,  Charlie S.

      The day is drawing near, at least I think so, when difficult things must be answered,  Charlie S. I have printed out nearly everthing you wrote over the past 2 years, Jerry Sullivan, you've been a welcome guest to us, Tim in Fl = Jill & Eric, Kevin in Atl., michel in FL. Betsy, Ellis, who now suffers, and Sharyon in Reno, linda, so many more,   but my writing is this- I don't think Buddy has a chance one of overcoming this melanma thing.   He still wants to get the 4th treatment of IPI.  He missed the 3rd injection, due to the fact he fell, was hospitilized with brain swelling, now in rehab center on 4mg steroids 3 x day,, The doctor is now reducing Steroids to 4mg in morning and night, and 2 in afternoon.  He must be off the 2 in afternoon to be allowed to get the IPPI….His tumors were getting smaller, but now there are more, and the others are growing,,..,.He was not allowed to get treatment @3 due to the steroids.   So, its now time for #4- who knows if he'll be allowed to take it.  He tried so hard in physical theraphy to get strong..The good fairies at the rehab said they wanted to discuss after care and hospice but I told him he was looking  forward to getting this over and be on his way to the orchard, am I the one to mention this to him,  or should I leave this to higher ups…I don't want to give up, but it seems a time is around the corner when something must be said === his torso ha numerous tumors, scan showed multiply spots on brain, its in his liver, both lungs–/////////////// If anyone sees an unused miracle laying around, send it our way…. How can I prepare him for the worst?   I've tried to stay up and heed advise given, but I must have not paid attention somewhere, or messed up, I cannot be the bearer of bad news, when I've tried to be so positive.

      Hes had the Interferon, Temador, IL-2, Gamma Knife, WBR, the brain surgery, trying IPPI ===should hehave another brain surgery  if they find more tumors in the old tumor beds, try gamma knife again, should he try Taxol ETC –He was not tested for B-RAF, even tho I asked for it..

      All in all, his doctor, Dr. William Sharfman at Johns Hopkins i, I believe, one of the best in melanma, He was one of the keynote speakers at Chicago a few months ago…

      Thinking of all the good friends I've made on my journey and thanking each one of them for smothing out that road–hopefully, someone, somewhere will be there fo you,…Who ever thought Jerry Ellis could ride a horse:::  or even try!!! He has to be a redneck~!

      Nancy – origianal WV gal (must be a redneck too)

      Good Luck Everyone = Luv ya

       

       

       

       

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    • Replies
        LizzM
        Participant

          I think if you don't want to have the discussion with him yourself (which I truly understand) then you need to speak to his doctor and ask him to speak with your husband and you together. If he still wants to fight after that then let him. You never know if he is the one who will get the miracle.

          My thoughts are with you both.

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          LizzM
          Participant

            I think if you don't want to have the discussion with him yourself (which I truly understand) then you need to speak to his doctor and ask him to speak with your husband and you together. If he still wants to fight after that then let him. You never know if he is the one who will get the miracle.

            My thoughts are with you both.

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            jag
            Participant

              Have a sit down with the doctor, sounds like he still wants to fight.  Tell him you love him no matter what he decides.  Go from there.

              Best and prayers.

              John 

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              jag
              Participant

                Have a sit down with the doctor, sounds like he still wants to fight.  Tell him you love him no matter what he decides.  Go from there.

                Best and prayers.

                John 

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                rj
                Participant

                  Nancy, I'm so sorry it has come to this.  I have no miracles lying around, but fervent prayers are going up.  I keep typing and erasing…I wish I were better with words; everything I put down sounds so trite.  While I am so thankful for Ron's good health, it doesn't seem fair that melanoma, beast that it is, can be so selective.  I have no advice–I leave that to those that know more about melanoma beyond our circumstances, but I will keep you both in constant prayer for healing, comfort, and knowledge of what to do.  Can't give you an actual hug, but just know the thoughts of all of us are with you.

                  Love to you both–Betsy

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                  rj
                  Participant

                    Nancy, I'm so sorry it has come to this.  I have no miracles lying around, but fervent prayers are going up.  I keep typing and erasing…I wish I were better with words; everything I put down sounds so trite.  While I am so thankful for Ron's good health, it doesn't seem fair that melanoma, beast that it is, can be so selective.  I have no advice–I leave that to those that know more about melanoma beyond our circumstances, but I will keep you both in constant prayer for healing, comfort, and knowledge of what to do.  Can't give you an actual hug, but just know the thoughts of all of us are with you.

                    Love to you both–Betsy

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                    lhaley
                    Participant

                      Oh Nancy, I wish there was something I could say that would make this all go away.  In the end it is Buddy's decision to make if he is to continue on the fight.  You somehow have to find out if he is continuing it just for you.  Also, you may find that the Drs take it out of both of your hands and tell you that they aren't going to treat anymore.

                      Do you ever read any of the posts to Buddy? If so maybe read one that contains information that someone is going into hospice.  That might open up a discussion for you. 

                      When my mother got to point of needing hospice I tried to talk to her. She acted as if she didn't understand a word I was saying. The hospice social worker called me and conveniently left the phone off of the hook so I could hear the conversation. Mom totally knew what was going on but was worried about me.  I wish I had been able to break through that barrier before it was too late.

                      I'm on facebook for a late night chat if you ever need one.

                      Love,

                      Linda

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                      lhaley
                      Participant

                        Oh Nancy, I wish there was something I could say that would make this all go away.  In the end it is Buddy's decision to make if he is to continue on the fight.  You somehow have to find out if he is continuing it just for you.  Also, you may find that the Drs take it out of both of your hands and tell you that they aren't going to treat anymore.

                        Do you ever read any of the posts to Buddy? If so maybe read one that contains information that someone is going into hospice.  That might open up a discussion for you. 

                        When my mother got to point of needing hospice I tried to talk to her. She acted as if she didn't understand a word I was saying. The hospice social worker called me and conveniently left the phone off of the hook so I could hear the conversation. Mom totally knew what was going on but was worried about me.  I wish I had been able to break through that barrier before it was too late.

                        I'm on facebook for a late night chat if you ever need one.

                        Love,

                        Linda

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                        Kevin from Atlanta
                        Participant

                          The 800 pound Gorilla in the room. Let the onocologist talk to Buddy about it with you telling the onc before hand. It is not pretty discussion, I only spoke to my wife about hospice just once. She stated she will accept any decsion I make about hospice and will not try to talk me out of it. I have so many mets, surgery has not been an option for me in a long time. If I was offered surgery, I would just decline it.

                          I found a plan B if I am not a late responder to Ipi. The original plan A. Six or seven different chemos. It did stop progression and after several months we saw good regression at the end. My bloodwork caused me to reduce to two chemo drugs, that failed and they all came back.

                          I am sure that Buddy has mentally prepared himself for the worst.

                          The most vauleable advice I received after joining this board is never look back on your prior treatments. Everyone involved made that decsion based on the information availble. Do not question or try to take any blame.

                          I feel blessed knowing you.

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                          Kevin from Atlanta
                          Participant

                            The 800 pound Gorilla in the room. Let the onocologist talk to Buddy about it with you telling the onc before hand. It is not pretty discussion, I only spoke to my wife about hospice just once. She stated she will accept any decsion I make about hospice and will not try to talk me out of it. I have so many mets, surgery has not been an option for me in a long time. If I was offered surgery, I would just decline it.

                            I found a plan B if I am not a late responder to Ipi. The original plan A. Six or seven different chemos. It did stop progression and after several months we saw good regression at the end. My bloodwork caused me to reduce to two chemo drugs, that failed and they all came back.

                            I am sure that Buddy has mentally prepared himself for the worst.

                            The most vauleable advice I received after joining this board is never look back on your prior treatments. Everyone involved made that decsion based on the information availble. Do not question or try to take any blame.

                            I feel blessed knowing you.

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                            Charlie S
                            Participant

                              Aw, Nancy, I hear you. 

                              There is an innate something within all of us to fight or flee and there is altogether something different when souls are connected and unwillingly someone becomes an agonizing beacon of reason in the eye and wall of a violent and deadly storm.

                              Experience has taught me though, that what is most important is to stand with another and truly help them with the courage of their convictions.

                              Your Buddy wants to fight and you should stand with him in that fight….no matter what.  It is also important to tell him truthfully it is okay to go and you will be okay.

                              I'll spare you the lecture of the importance of Advanced Directives, but I would encourage you to speak to  someone from Hospice to help you sort things out.  I am NOT saying Buddy is going to die, but he might; and you. I am sure, feel alone and tormented,, yet want to do right by your man, so please reach out to Hospice and I do hope they can guide you .

                              It has been a long and hard road for Buddy, but it has been and is for you as well.

                              My kindnest thoughts are with you both.

                              Charlie S

                               

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                              Charlie S
                              Participant

                                Aw, Nancy, I hear you. 

                                There is an innate something within all of us to fight or flee and there is altogether something different when souls are connected and unwillingly someone becomes an agonizing beacon of reason in the eye and wall of a violent and deadly storm.

                                Experience has taught me though, that what is most important is to stand with another and truly help them with the courage of their convictions.

                                Your Buddy wants to fight and you should stand with him in that fight….no matter what.  It is also important to tell him truthfully it is okay to go and you will be okay.

                                I'll spare you the lecture of the importance of Advanced Directives, but I would encourage you to speak to  someone from Hospice to help you sort things out.  I am NOT saying Buddy is going to die, but he might; and you. I am sure, feel alone and tormented,, yet want to do right by your man, so please reach out to Hospice and I do hope they can guide you .

                                It has been a long and hard road for Buddy, but it has been and is for you as well.

                                My kindnest thoughts are with you both.

                                Charlie S

                                 

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