A board for spouses
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A board for spouses

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  • Post
    • June 3, 2012 at 2:38 am
    Carla Edge
    Participant

      I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  D

      I am new to this board.  My husband is stage IV with a met on muscle around his small int.  He was diagnosed in Jan and was randomized into the TIL study at the NIH.  So far, they can't tell if the tumor is growing slowly or just changing shape.  We are deciding this week the next step to take- likely ipi.  Roy was feeling pretty good after release from hospital.  Two months later, he feels lousy.  He went from a rather normal existence with an afternoon doze to flat on his back on the couch most of the day.  Nothing seems to cheer him up.  Docs said to expect him to go backwards, but we didn't expect it to be this terrible.  I've tried to be supportive, but find myself acting impatient and "witch-like" sometimes.  Is this the proper forum to vent about all of this, or is there a similar board for spouses/caregivers?  I love reading posts on this board.  Thank you for sharing all of your stories.  They all give inspiration in one way or another.  Thank you all!

    Viewing 8 reply threads
    • Replies
        • June 4, 2012 at 4:39 am
        Swanee
        Participant

          Hi Carla……I am no expert of any kind, but I felt what you were asking for was just feed back, so here goes……..  While knowing nothing of your husbands disease except stage IV which is devastating and takes time to absorb, this is a crazy place and you are quickly thrown into the "abyss" or the frenzy as I refer to.  I too am in the frenzy of 2 years out and I am just now getting my foothold in the whole thing and I am lucky that I am still here and have had an opportunity to take a little time to figure this whole thing out, while others have already passed on.   When you are first diagnosed at stage IV, it is so scarry and for some so little time to figure things out, no one knows how it is going to go.  For me, not as fast as others so I have had  a little more time, however, I did not know that when I was diagnosed…..would be helpful if we knew exactly how much time we have…but then we realize, nobody knows that, not even the doctors and we start taking control and start helping ourselves. Obviously, you must be in a great medical center because TIL is very cutting edge.  I too, am considering TIL and will have more surgery this month and will save tumor for possible TIL treatment.   Sounds like your husband is suffering from depression which can be devastating and detrimental to his survival.  For some reason, I think men can be more susceptible to depression than woman…oddly so. If his disease is threatening (like mine) but not actually physically interferring…..I would suspect depression, which could be just as debilitating.  I also experienced a very difficult treatment( IPI,) which took me a good 9-10 months to recover from and then I lost my drive and have struggled with long- lasting side effects from the drug, also going through menapause which doesn't help!!  The best thing that has helped me is my own decision… I just decided to have an attitude of,  if I only have this long to live, than I might as well have as much fun as I can.  No one knows when they will leave this world, so why waste a day to melanoma….it's like you're living with the devil or negativity…(call it what you want) but everyday you stay on the couch throwing a pity party for yourself…..you're wasting precious time.  The other thought I had was,  what if the dr.'s said you only had  2 yrs to live, so you went into a deep depression and stayed on the couch until you died……..but you didn't die……a long time could happen in between living and death and so sad to think we spent that time in anticipation waiting to die…but we didn't……..we wasted a lot of time, a lot of good living time.  Anyway, I am not the caregiver but the patient and I have talked to many, who are caregivers to patients with a less threatening diagnosis(  than mine and your husband's)  and have struggled with the patient being down in the dumps like you describe.  So much is just part of our personality and how we deal with things.  I would strongly encourage you to seek outside help because I know it's possible to be better even though this is such a difficult place to be, sometimes joining a caregivers group!   Keep searching, you will find answers.   Please feel free to contact me if you need more support.  Take care and God Bless!

          Swanee

          • June 4, 2012 at 4:39 am
          Swanee
          Participant

            Hi Carla……I am no expert of any kind, but I felt what you were asking for was just feed back, so here goes……..  While knowing nothing of your husbands disease except stage IV which is devastating and takes time to absorb, this is a crazy place and you are quickly thrown into the "abyss" or the frenzy as I refer to.  I too am in the frenzy of 2 years out and I am just now getting my foothold in the whole thing and I am lucky that I am still here and have had an opportunity to take a little time to figure this whole thing out, while others have already passed on.   When you are first diagnosed at stage IV, it is so scarry and for some so little time to figure things out, no one knows how it is going to go.  For me, not as fast as others so I have had  a little more time, however, I did not know that when I was diagnosed…..would be helpful if we knew exactly how much time we have…but then we realize, nobody knows that, not even the doctors and we start taking control and start helping ourselves. Obviously, you must be in a great medical center because TIL is very cutting edge.  I too, am considering TIL and will have more surgery this month and will save tumor for possible TIL treatment.   Sounds like your husband is suffering from depression which can be devastating and detrimental to his survival.  For some reason, I think men can be more susceptible to depression than woman…oddly so. If his disease is threatening (like mine) but not actually physically interferring…..I would suspect depression, which could be just as debilitating.  I also experienced a very difficult treatment( IPI,) which took me a good 9-10 months to recover from and then I lost my drive and have struggled with long- lasting side effects from the drug, also going through menapause which doesn't help!!  The best thing that has helped me is my own decision… I just decided to have an attitude of,  if I only have this long to live, than I might as well have as much fun as I can.  No one knows when they will leave this world, so why waste a day to melanoma….it's like you're living with the devil or negativity…(call it what you want) but everyday you stay on the couch throwing a pity party for yourself…..you're wasting precious time.  The other thought I had was,  what if the dr.'s said you only had  2 yrs to live, so you went into a deep depression and stayed on the couch until you died……..but you didn't die……a long time could happen in between living and death and so sad to think we spent that time in anticipation waiting to die…but we didn't……..we wasted a lot of time, a lot of good living time.  Anyway, I am not the caregiver but the patient and I have talked to many, who are caregivers to patients with a less threatening diagnosis(  than mine and your husband's)  and have struggled with the patient being down in the dumps like you describe.  So much is just part of our personality and how we deal with things.  I would strongly encourage you to seek outside help because I know it's possible to be better even though this is such a difficult place to be, sometimes joining a caregivers group!   Keep searching, you will find answers.   Please feel free to contact me if you need more support.  Take care and God Bless!

            Swanee

            • June 4, 2012 at 4:39 am
            Swanee
            Participant

              Hi Carla……I am no expert of any kind, but I felt what you were asking for was just feed back, so here goes……..  While knowing nothing of your husbands disease except stage IV which is devastating and takes time to absorb, this is a crazy place and you are quickly thrown into the "abyss" or the frenzy as I refer to.  I too am in the frenzy of 2 years out and I am just now getting my foothold in the whole thing and I am lucky that I am still here and have had an opportunity to take a little time to figure this whole thing out, while others have already passed on.   When you are first diagnosed at stage IV, it is so scarry and for some so little time to figure things out, no one knows how it is going to go.  For me, not as fast as others so I have had  a little more time, however, I did not know that when I was diagnosed…..would be helpful if we knew exactly how much time we have…but then we realize, nobody knows that, not even the doctors and we start taking control and start helping ourselves. Obviously, you must be in a great medical center because TIL is very cutting edge.  I too, am considering TIL and will have more surgery this month and will save tumor for possible TIL treatment.   Sounds like your husband is suffering from depression which can be devastating and detrimental to his survival.  For some reason, I think men can be more susceptible to depression than woman…oddly so. If his disease is threatening (like mine) but not actually physically interferring…..I would suspect depression, which could be just as debilitating.  I also experienced a very difficult treatment( IPI,) which took me a good 9-10 months to recover from and then I lost my drive and have struggled with long- lasting side effects from the drug, also going through menapause which doesn't help!!  The best thing that has helped me is my own decision… I just decided to have an attitude of,  if I only have this long to live, than I might as well have as much fun as I can.  No one knows when they will leave this world, so why waste a day to melanoma….it's like you're living with the devil or negativity…(call it what you want) but everyday you stay on the couch throwing a pity party for yourself…..you're wasting precious time.  The other thought I had was,  what if the dr.'s said you only had  2 yrs to live, so you went into a deep depression and stayed on the couch until you died……..but you didn't die……a long time could happen in between living and death and so sad to think we spent that time in anticipation waiting to die…but we didn't……..we wasted a lot of time, a lot of good living time.  Anyway, I am not the caregiver but the patient and I have talked to many, who are caregivers to patients with a less threatening diagnosis(  than mine and your husband's)  and have struggled with the patient being down in the dumps like you describe.  So much is just part of our personality and how we deal with things.  I would strongly encourage you to seek outside help because I know it's possible to be better even though this is such a difficult place to be, sometimes joining a caregivers group!   Keep searching, you will find answers.   Please feel free to contact me if you need more support.  Take care and God Bless!

              Swanee

              • June 5, 2012 at 5:38 am
              kylez
              Participant

                Carla, I got a flyer in the mail today for "Stress Management for Caregivers: Practical Tips for Coping". More info at http://www.cancercare.org/connect_workshops, see the June 29 event. I've attended a few of their workshops, which were high quality and helpful. This is one of a series of workshops/webinars on a topics related to cancer care.

                – Kyle 

                • June 5, 2012 at 5:38 am
                kylez
                Participant

                  Carla, I got a flyer in the mail today for "Stress Management for Caregivers: Practical Tips for Coping". More info at http://www.cancercare.org/connect_workshops, see the June 29 event. I've attended a few of their workshops, which were high quality and helpful. This is one of a series of workshops/webinars on a topics related to cancer care.

                  – Kyle 

                  • June 5, 2012 at 5:38 am
                  kylez
                  Participant

                    Carla, I got a flyer in the mail today for "Stress Management for Caregivers: Practical Tips for Coping". More info at http://www.cancercare.org/connect_workshops, see the June 29 event. I've attended a few of their workshops, which were high quality and helpful. This is one of a series of workshops/webinars on a topics related to cancer care.

                    – Kyle 

                    • June 12, 2012 at 2:12 am
                    kylez
                    Participant
                      Carla, I came across some boards/forums for caregivers here, http://www.cancercare.org/support_groups. I hope Roy is feeling better.
                      -Kyle
                      • June 12, 2012 at 2:12 am
                      kylez
                      Participant
                        Carla, I came across some boards/forums for caregivers here, http://www.cancercare.org/support_groups. I hope Roy is feeling better.
                        -Kyle
                        • June 12, 2012 at 2:12 am
                        kylez
                        Participant
                          Carla, I came across some boards/forums for caregivers here, http://www.cancercare.org/support_groups. I hope Roy is feeling better.
                          -Kyle
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