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Coping with long-term survival of stage IV

Forums General Melanoma Community Coping with long-term survival of stage IV

  • Post
    Erika
    Participant

      I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

      I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

      I have what could be called a "good problem," yet it is a problem just the same. How does one make life decisions with a husband who is supposed to have died, but didn't? Is he "normal" now? Or should I stock up on life insurance whenever I can? We did have 2 daughters after his diagnosis, so clearly I didn't just give up on life with him. But I do feel alone. Anyone else out there in a similar situation? I'd love to hear from you.

    Viewing 11 reply threads
    • Replies
        Barbaras Husband
        Participant

          I too am having this good problem.  We keep reminding ourselves to take one day at a time but it is not easy to do.  I find it  is easier when my wife is undergoing treatment than when she is NED and  all we can do is wait and watch.  Our feelings(yours and mine) are very complicated but very real and I think it is important for us to be able to express them and find suppor

          The Melanoma International Foundation web sight has a board for caregivers only.  I check it occasionally but is is quite unerutilized.  I would be interested in continuing this conversation on the MIF caregiver board.  I think others may join us there. 

          I would not be apposed to continuing the conversation here if you and or others wish but I think it would be more approprate on the caregivers only board of MIF

             

          Barbaras Husband
          Participant

            I too am having this good problem.  We keep reminding ourselves to take one day at a time but it is not easy to do.  I find it  is easier when my wife is undergoing treatment than when she is NED and  all we can do is wait and watch.  Our feelings(yours and mine) are very complicated but very real and I think it is important for us to be able to express them and find suppor

            The Melanoma International Foundation web sight has a board for caregivers only.  I check it occasionally but is is quite unerutilized.  I would be interested in continuing this conversation on the MIF caregiver board.  I think others may join us there. 

            I would not be apposed to continuing the conversation here if you and or others wish but I think it would be more approprate on the caregivers only board of MIF

               

            Barbaras Husband
            Participant

              I too am having this good problem.  We keep reminding ourselves to take one day at a time but it is not easy to do.  I find it  is easier when my wife is undergoing treatment than when she is NED and  all we can do is wait and watch.  Our feelings(yours and mine) are very complicated but very real and I think it is important for us to be able to express them and find suppor

              The Melanoma International Foundation web sight has a board for caregivers only.  I check it occasionally but is is quite unerutilized.  I would be interested in continuing this conversation on the MIF caregiver board.  I think others may join us there. 

              I would not be apposed to continuing the conversation here if you and or others wish but I think it would be more approprate on the caregivers only board of MIF

                 

              Rebecca and Bob
              Participant

                I get where you are coming from too. My husband has been stage IV since 2008 – treatment and surgeries. We have two young sons. Melanoma has stopped us from a lot of things including growing our family. I feel selfish saying what it has stopped us from when I should grateful for everyday. I feel constantly wondering when it's going to turn it ugly head again and interrupt the normalcy we are trying to create. He also delays going in for his routine scans now which seems to bother me more than him. He has been NED since 2009. Yet, it is the good problem but I'm always thinking of it.

                Rebecca

                Rebecca and Bob
                Participant

                  I get where you are coming from too. My husband has been stage IV since 2008 – treatment and surgeries. We have two young sons. Melanoma has stopped us from a lot of things including growing our family. I feel selfish saying what it has stopped us from when I should grateful for everyday. I feel constantly wondering when it's going to turn it ugly head again and interrupt the normalcy we are trying to create. He also delays going in for his routine scans now which seems to bother me more than him. He has been NED since 2009. Yet, it is the good problem but I'm always thinking of it.

                  Rebecca

                    Sherron
                    Participant

                      Rebecca – even when you have lost a loved one to Melanoma – you still never really get over melanoma….I have tried not to come to this site, but still find myself 21 months later coming back.  I think once Mel touches your life, it never lets go,  it just seems to linger in the back of my mind…how are the people doing on the board?  etc.

                      I wish you all well…and try as much as can to live a normal life..I remember it was hard, and it still is hard.

                       

                      God Bless and Take Care,

                      Sherron, wife to Jim FOREVER

                      Sherron
                      Participant

                        Rebecca – even when you have lost a loved one to Melanoma – you still never really get over melanoma….I have tried not to come to this site, but still find myself 21 months later coming back.  I think once Mel touches your life, it never lets go,  it just seems to linger in the back of my mind…how are the people doing on the board?  etc.

                        I wish you all well…and try as much as can to live a normal life..I remember it was hard, and it still is hard.

                         

                        God Bless and Take Care,

                        Sherron, wife to Jim FOREVER

                        MeNDave
                        Participant

                          I agree with Sherron.  My husband also passed away and I too have a tendency to not want to visit this board, but do anyway.  Looking back, Dave had such an amazing zest for life, and he really led the way – we did alot of things after he was diagnosed.  Please keep living your life to the fullest – you do not want to look back and say "I wish we had….".

                          Best wishes for continued NED…

                          Maria

                          MeNDave
                          Participant

                            I agree with Sherron.  My husband also passed away and I too have a tendency to not want to visit this board, but do anyway.  Looking back, Dave had such an amazing zest for life, and he really led the way – we did alot of things after he was diagnosed.  Please keep living your life to the fullest – you do not want to look back and say "I wish we had….".

                            Best wishes for continued NED…

                            Maria

                            MeNDave
                            Participant

                              I agree with Sherron.  My husband also passed away and I too have a tendency to not want to visit this board, but do anyway.  Looking back, Dave had such an amazing zest for life, and he really led the way – we did alot of things after he was diagnosed.  Please keep living your life to the fullest – you do not want to look back and say "I wish we had….".

                              Best wishes for continued NED…

                              Maria

                              Sherron
                              Participant

                                Rebecca – even when you have lost a loved one to Melanoma – you still never really get over melanoma….I have tried not to come to this site, but still find myself 21 months later coming back.  I think once Mel touches your life, it never lets go,  it just seems to linger in the back of my mind…how are the people doing on the board?  etc.

                                I wish you all well…and try as much as can to live a normal life..I remember it was hard, and it still is hard.

                                 

                                God Bless and Take Care,

                                Sherron, wife to Jim FOREVER

                              Rebecca and Bob
                              Participant

                                I get where you are coming from too. My husband has been stage IV since 2008 – treatment and surgeries. We have two young sons. Melanoma has stopped us from a lot of things including growing our family. I feel selfish saying what it has stopped us from when I should grateful for everyday. I feel constantly wondering when it's going to turn it ugly head again and interrupt the normalcy we are trying to create. He also delays going in for his routine scans now which seems to bother me more than him. He has been NED since 2009. Yet, it is the good problem but I'm always thinking of it.

                                Rebecca

                                Harry in Fair Oaks
                                Participant

                                  It is hard, especially with young children, to plan ahead when dignosed with advanced disease.  From my experience, things get better the further out you go.  Of course it can come back, but the fear does diminish over time.

                                  My wife always supported me, and always told me I would make it.  Did she really believe it?  I don't know – but I always believed she believed it (and she's not ignorant: she is a radiation therapist who works with cancer patients 8 hours a day).  I'm so lucky to have had that support.

                                  Best wishes,

                                  Harry

                                  Harry in Fair Oaks
                                  Participant

                                    It is hard, especially with young children, to plan ahead when dignosed with advanced disease.  From my experience, things get better the further out you go.  Of course it can come back, but the fear does diminish over time.

                                    My wife always supported me, and always told me I would make it.  Did she really believe it?  I don't know – but I always believed she believed it (and she's not ignorant: she is a radiation therapist who works with cancer patients 8 hours a day).  I'm so lucky to have had that support.

                                    Best wishes,

                                    Harry

                                    Harry in Fair Oaks
                                    Participant

                                      It is hard, especially with young children, to plan ahead when dignosed with advanced disease.  From my experience, things get better the further out you go.  Of course it can come back, but the fear does diminish over time.

                                      My wife always supported me, and always told me I would make it.  Did she really believe it?  I don't know – but I always believed she believed it (and she's not ignorant: she is a radiation therapist who works with cancer patients 8 hours a day).  I'm so lucky to have had that support.

                                      Best wishes,

                                      Harry

                                      dellriol
                                      Participant

                                        I am not yet what I would call a long term survivor, but the way I feel is this. I want my family's needs covered (life insurance).  I want emotional needs met (open communication) I want my affairs in order, same as anyone should, cancer or not.

                                        Beyond that, every time I make a choice because of the cancer, I feel like I have given the big C a little more power.I only give things up for the cancer if I have to.  I want to live as much as possible as if it didn't exist.  As I told my husband early on, "this may kill me someday, but I ain't dead yet!  And I WON'T act like I am!"

                                        I realize that cancer can be harder on the caregivers at times than it is on the warriors.  We thank you for all you do for us.

                                          shadowace
                                          Participant

                                            i dont know if u will get this or not, but i am fixing to have my 6th surgery soon, and what you wrote here touched me, thanks 

                                            i am at a crossroads at this moment, because what comes next i have no idea

                                            since diagnosis, this cancer has gotten more agressive, meaning the cancer takes less time to reappear than previously, meaning this is 6 surgeries in less than 1yr 9 months  definately dont think that this is normal by any means

                                            shadowace
                                            Participant

                                              i dont know if u will get this or not, but i am fixing to have my 6th surgery soon, and what you wrote here touched me, thanks 

                                              i am at a crossroads at this moment, because what comes next i have no idea

                                              since diagnosis, this cancer has gotten more agressive, meaning the cancer takes less time to reappear than previously, meaning this is 6 surgeries in less than 1yr 9 months  definately dont think that this is normal by any means

                                              shadowace
                                              Participant

                                                i dont know if u will get this or not, but i am fixing to have my 6th surgery soon, and what you wrote here touched me, thanks 

                                                i am at a crossroads at this moment, because what comes next i have no idea

                                                since diagnosis, this cancer has gotten more agressive, meaning the cancer takes less time to reappear than previously, meaning this is 6 surgeries in less than 1yr 9 months  definately dont think that this is normal by any means

                                              dellriol
                                              Participant

                                                I am not yet what I would call a long term survivor, but the way I feel is this. I want my family's needs covered (life insurance).  I want emotional needs met (open communication) I want my affairs in order, same as anyone should, cancer or not.

                                                Beyond that, every time I make a choice because of the cancer, I feel like I have given the big C a little more power.I only give things up for the cancer if I have to.  I want to live as much as possible as if it didn't exist.  As I told my husband early on, "this may kill me someday, but I ain't dead yet!  And I WON'T act like I am!"

                                                I realize that cancer can be harder on the caregivers at times than it is on the warriors.  We thank you for all you do for us.

                                                dellriol
                                                Participant

                                                  I am not yet what I would call a long term survivor, but the way I feel is this. I want my family's needs covered (life insurance).  I want emotional needs met (open communication) I want my affairs in order, same as anyone should, cancer or not.

                                                  Beyond that, every time I make a choice because of the cancer, I feel like I have given the big C a little more power.I only give things up for the cancer if I have to.  I want to live as much as possible as if it didn't exist.  As I told my husband early on, "this may kill me someday, but I ain't dead yet!  And I WON'T act like I am!"

                                                  I realize that cancer can be harder on the caregivers at times than it is on the warriors.  We thank you for all you do for us.

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