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  • Post
    • July 11, 2015 at 1:35 pm
    lmhl
    Participant

      Hello

      I hope that this is not inappropriate for this site, but recently there was a story on CBC news about Camp Erin, a camp for children who have had a loss.

      In the story, were two children who shared their experience of losing their father to melanoma.  Here is the link for the story.

      http://www.cbc.ca/news/canada/camp-erin-blends-play-help-for-grieving-kids-1.3140122

      I am sharing this, as I recently lost my husband, and my children lost their father to this stupid horrible cancer. It was 8 months from the time of diagnosis to the time he died.  We did not have the opportunity to speak to him about dying.  My kids did not have a chance to share their feelings with their father, as the children in this story did, as at no time, despite multiple requests, did the oncologist share his prognosis. My husband was attending appointments and Ipi treatments.  The day after his second ipi treatment he had a brain hemorrhage and died a few weeks later.

      Not sure if this is usual for a doctor to not share the prognosis.  All the doctor kept saying when we asked was "as long as it doesn't spread we are good".  We trusted the doctor and thought we were like many others with melanoma that live for years.  I was not prepared for the dark side of melanoma.

      I am having a tough time grieving and have many regrets of not researching alternatives and guidance as many of you do here. I just wanted to share this, as if anyone ever unfortunately finds themselves in this horrible spot in their lives, that they advocate for themselves.  We had no idea where our path was leading.  I am thankful for this site and would like to find a way to spread the seriousnes of this cancer so others are aware.  

      Does anyone have any suggestions of good organizatons to support in creating a greater awareness of melanoma?  I am a bit synical in my thoughts of  some organizations, with either the mismangement of funds or involvement with pharmaceutical companies at this time.

      Again, I am sorry if this was inappropriate to bring here.  The love, support, and hope on this forum is truly incredible.

       

    Viewing 2 reply threads
    • Replies
        • July 11, 2015 at 8:42 pm
        Mat
        Participant

          I'm so sorry for your loss.  There are a number of Stage IV patients on this site with young families (me included).  Your story is a good reminder that we each only have today.  That's true for healthy people too, but more pronounced for cancer patients.  As an alternate take on your onc experience, I remember becoming annoyed with my dad because he would come to my (early) appointments and always ask "what's the prognosis?"  I wanted to answer "Duh, Dad.  The answer depends on whether the treatment works and they don't know if it will work."  We're all in similar, but very situations with this disease–and there are no guarantees for tomorrow.

            • July 12, 2015 at 1:57 am
            DonnaK
            Participant

              Anon,

              I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

              Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

              I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

              Best,

              Donna

               

              • July 12, 2015 at 1:57 am
              DonnaK
              Participant

                Anon,

                I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

                Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

                I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

                Best,

                Donna

                 

                • July 12, 2015 at 1:57 am
                DonnaK
                Participant

                  Anon,

                  I am so sorry for your loss. I was in your shoes almost 2yrs ago.  I have two young kids that I am raising on my own since my husbands death.  (They were too young for Camp Erin at the time, but I'm still thinking of sending them.)  I think there is no way to predict what will happen with Melanoma, and as much as you wish you had researched other options, the option you chose was probably a very good one. I did research options extensively, and still can't help but wonder if I did enough. (It's a natural response.  I know I did everything I could, but I think this is part of the grieving process.)  

                  Like you, I never spoke to my husband about his pending death.  It was also 8mos from the time of (stage IV) diagnosis to death.  I worried that the conversation would be a sign of giving up, and I wanted to believe there was always a chance.  I believe his oncologist felt the same way, though she did tell me privately that his time was limited.  With time, I have come to peace with this decision and generally feel I handled things as he would have wanted.  

                  I'm sure there are many worthy organizations out there. I have chosen to fundraise for the Melanoma International Foundation. This is partly because it is local (Philadelphia suburbs) and also because they do a great job educating patients/caregivers about treatment options.  My career is focused on developing cancer therapeutics, so I felt fairly well versed on the subject, but I often wondered how people with different backgrounds could navigate the process.  MIF has been a great organization for doing just that.

                  Best,

                  Donna

                   

                • July 11, 2015 at 8:42 pm
                Mat
                Participant

                  I'm so sorry for your loss.  There are a number of Stage IV patients on this site with young families (me included).  Your story is a good reminder that we each only have today.  That's true for healthy people too, but more pronounced for cancer patients.  As an alternate take on your onc experience, I remember becoming annoyed with my dad because he would come to my (early) appointments and always ask "what's the prognosis?"  I wanted to answer "Duh, Dad.  The answer depends on whether the treatment works and they don't know if it will work."  We're all in similar, but very situations with this disease–and there are no guarantees for tomorrow.

                  • July 11, 2015 at 8:42 pm
                  Mat
                  Participant

                    I'm so sorry for your loss.  There are a number of Stage IV patients on this site with young families (me included).  Your story is a good reminder that we each only have today.  That's true for healthy people too, but more pronounced for cancer patients.  As an alternate take on your onc experience, I remember becoming annoyed with my dad because he would come to my (early) appointments and always ask "what's the prognosis?"  I wanted to answer "Duh, Dad.  The answer depends on whether the treatment works and they don't know if it will work."  We're all in similar, but very situations with this disease–and there are no guarantees for tomorrow.

                Viewing 2 reply threads
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