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Lori C

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      Lori C
      Participant

        Sherron, I appreciate your posting this and it certainly doesn't strike me as "off topic."  It's about a reality of melanoma.  It's not everyone's reality, mercifully, but we need to honor those who struggle in many ways, including with these losses.  I appreciated their family's willingness to share their struggle and believe it will contribute to the information pool and help others.  I am so sorry for the family's multiple losses. 

        I know that the presence of some of us who have lost our loved ones to melanoma may be difficult here.  However, melanoma is part of our lives and we still feel a part of these boards.  It's not that we want to "share sad news that no one can do anything about" – not at all.  People who die from melanoma are part of the melanoma community.  They participated in clinical trials, fought hard, and advanced the science (often) to help others.  The fact that they did die from the disease should not be a discouragement to anyone.  Many of them lived far longer than expected.  Some lived incredibly richly despite the disease.  All are inspirations. 

        Lori, caregiver to Will.

        Lori C
        Participant

          I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

          Lori, caregiver to Will

          Lori C
          Participant

            I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

            Lori, caregiver to Will

            Lori C
            Participant

              I personally think it is because many non-melanoma specialists (including derms) have a specific idea in their mind about what melanoma looks like and what it does not, and melanoma doesn't really follow those rules.  Will's was amelanotic, right on the back of his head near his hairline for years, but until it ulcerated, no one paid any attention. 

              Lori, caregiver to Will

              Lori C
              Participant

                Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                 

                Lori

                Lori C
                Participant

                  Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                   

                  Lori

                  Lori C
                  Participant

                    Charlie, you are amazing.  I am very glad you are here and that you are participating in this forum; you were a great help to me when I was caregiving for Will and your lessons are ones I will carry with me.  Will's battle is over but I am sure to face more in the future, and your attitude and approach have been very helpful, always.  May you be kicking mel butt many decades to come.

                     

                    Lori

                    Lori C
                    Participant

                      Belva,  I am terribly sorry for your loss, and may his memory be for a blessing.

                       

                      Lori, caregiver to Will

                      Lori C
                      Participant

                        Belva,  I am terribly sorry for your loss, and may his memory be for a blessing.

                         

                        Lori, caregiver to Will

                        Lori C
                        Participant

                          Belva,  I am terribly sorry for your loss, and may his memory be for a blessing.

                           

                          Lori, caregiver to Will

                          Lori C
                          Participant

                            I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                            Lori, caregiver to Will

                            Lori C
                            Participant

                              I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                              Lori, caregiver to Will

                              Lori C
                              Participant

                                I would always seek a second opinion in such a situation, but I am confident that this surgeon sounds like he is a good one and the hospital is good.  Unfortunately, it is a myth that in the US there are not waiting times for getting into doctors and for surgery.  It's not an emergency and so it can wait, by their thinking.  I know it's horrible to wait.  If you do get a second opinion, make sure it's one as well qualified and a major center for melanoma.  Sloan Kettering, perhaps?  Can you travel?  I am sure people here can make great suggestions for such resources.

                                Lori, caregiver to Will

                                Lori C
                                Participant

                                  Sherron, I appreciate your posting this and it certainly doesn't strike me as "off topic."  It's about a reality of melanoma.  It's not everyone's reality, mercifully, but we need to honor those who struggle in many ways, including with these losses.  I appreciated their family's willingness to share their struggle and believe it will contribute to the information pool and help others.  I am so sorry for the family's multiple losses. 

                                  I know that the presence of some of us who have lost our loved ones to melanoma may be difficult here.  However, melanoma is part of our lives and we still feel a part of these boards.  It's not that we want to "share sad news that no one can do anything about" – not at all.  People who die from melanoma are part of the melanoma community.  They participated in clinical trials, fought hard, and advanced the science (often) to help others.  The fact that they did die from the disease should not be a discouragement to anyone.  Many of them lived far longer than expected.  Some lived incredibly richly despite the disease.  All are inspirations. 

                                  Lori, caregiver to Will.

                                  Lori C
                                  Participant

                                    Sherron, I appreciate your posting this and it certainly doesn't strike me as "off topic."  It's about a reality of melanoma.  It's not everyone's reality, mercifully, but we need to honor those who struggle in many ways, including with these losses.  I appreciated their family's willingness to share their struggle and believe it will contribute to the information pool and help others.  I am so sorry for the family's multiple losses. 

                                    I know that the presence of some of us who have lost our loved ones to melanoma may be difficult here.  However, melanoma is part of our lives and we still feel a part of these boards.  It's not that we want to "share sad news that no one can do anything about" – not at all.  People who die from melanoma are part of the melanoma community.  They participated in clinical trials, fought hard, and advanced the science (often) to help others.  The fact that they did die from the disease should not be a discouragement to anyone.  Many of them lived far longer than expected.  Some lived incredibly richly despite the disease.  All are inspirations. 

                                    Lori, caregiver to Will.

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