› Forums › General Melanoma Community › Dad’s struggle is over
- This topic has 66 replies, 10 voices, and was last updated 13 years, 2 months ago by
FormerCaregiver.
- Post
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- January 24, 2012 at 6:59 pm
Hi everyone,
I just wanted to let you all know that Dad is no longer suffering. He passed away on January 12th.
(I will go ahead and say I have to type this somehwere. It has been a really hard year, and you may not want to read as I recount the last weeks and hours.)
Hi everyone,
I just wanted to let you all know that Dad is no longer suffering. He passed away on January 12th.
(I will go ahead and say I have to type this somehwere. It has been a really hard year, and you may not want to read as I recount the last weeks and hours.)
I had posted that we had to move to hospice care after a really hectic out-of-town Thanksgiving hospital episode. I feel like at the time it was deemed Temodar was no longer effective, I had already noticed a subtle decline. He also had a poor reaction to the Zelboraf in November, I think in part due to how advanced his brain tumors had become. The tumors affecting his heart rhythm, the meds also also affecting the rhythm. The continued effects of the steroids, etc. The infection. The seizure(s). All the medications got complicated, and were still just were not effective for him.
Hospice helped a lot, but we still had a lot of stressful problems helping dad through December. Eventually we had to check him into the Palliative care unit at the hospital becaus ehe had gotten very combative and confused, and form there to the nursing home while we figured out what to do. He was such a big guy, I couldn't move him or help him up, and he couldn't remeber that he didnt have the stamina or even blood pressure to suport himself and would fall. I felt pretty helpless.
We finally made arrangements on a Friday to safely bring him home early the next week. We had soem minor crisis at home and had to delay til that Wednesday. We would readmit him to hospice, have more helpers, etc. He had lost the ability to speak clearly, but I could tell he could hear and understand me. He was so excited his favorite team (U of ALabama) had won the championship against LSU. He cracked a tiny half smile. I told him he was coming home the next day and all his "granddogs" were waiting on his bed. He smiled a tiny subtle smaile again. I could plainly see I was not going to have to worry about him "sneaking" out of his bed and falling anymore.
I packed some of his things that day, and the next morning came to get the rest. He looked pitiful and really uncomfortable for the first time since he ad that chest tube in April 2011. I was so glad we were able to get him soemwhere familiar and hopefully relaxing. He was coming home in the ambulance later. I was surprised, but not upset, that he had to go on an oxygen machine. We had used one a lot during the spring after his lung collapsed (from biopsy) and in the summer after his blood clots in both lungs, so it didn't really phase me.
He knew he'd made it and we could tell he was happy, but also in pain. I played a favorite collection of Wagner, brought the dogs to see him (those are our kids), and was able to give him water. He was vaguely responsive. The admitting nurse said she had seen many patients like him "perk up" and have a few weeks. I knew transport must have been tiresome and he needed some good rest, though the timeline seemed off to me. That night it was rough, breathing wise, it got really labored and rapid and congested. The oxygen machine was turned up from 2 to 4 liters. It malfunctioned and then was ok, but the guy was out at 1 am to replace it. It didn't seem to help. I told the nurse over the phone it reminded me of my cat's breathing the night before she died, and it was unnerving. He was not responsive, except I could tell him to swallow and he would. But not much else. The on call nurse came to help me around 2am. (She lived about an hour away.) His HR climbed up into the 160s and his breathing rate was aabout 36/ minute, despite the ativan and morphine. We got him "relaxed" as much as possible his breathing rate had gotten less intense, chest no longer heaving. I finally got in bed at 4:30 and was up on the hour for medicine. She called to check in a few times, and shortly before 8, I went in and he was gone. It was so surreal.
I felt so relived and so sad and so exhausted. I still do.
Thanks for all the help everyone offered to me and answering questions and letting me vent. I still worry about you who are dealing with this, but I am also relieved that so many have had much better responses to their treatment, mostly because you had at least found it before it was so advanced. I hope you all remain active participants in your healthcare and enjoy the hell out of life.
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- January 24, 2012 at 7:36 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:36 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:36 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:15 pm
So sorry for your loss. I know he is no longer in pain and suffering.
May the Lord bless you and lift you up during this season of grieving. You were a big help to him and I know it was a strain.
Praying.
Barb
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- January 24, 2012 at 7:15 pm
So sorry for your loss. I know he is no longer in pain and suffering.
May the Lord bless you and lift you up during this season of grieving. You were a big help to him and I know it was a strain.
Praying.
Barb
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- January 24, 2012 at 7:15 pm
So sorry for your loss. I know he is no longer in pain and suffering.
May the Lord bless you and lift you up during this season of grieving. You were a big help to him and I know it was a strain.
Praying.
Barb
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- January 24, 2012 at 7:34 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:34 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:34 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:35 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:35 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 7:35 pm
I am so sorry for the loss of your Dad, you are a wonderful daughter. My sister is currently getting hospice care at home so your post hits home for us. She had an "engery spurt" week 2 weeks ago but has been steadily declining since. This is the hardest and worst part for sure.
God Bless you
Stacie from New York (sister to Karen stage 4)
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- January 24, 2012 at 9:29 pm
I am so sorry to hear about your father. You have been a wonderful support for him and your family. Please know that many hearts are with you.
Hope
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- January 24, 2012 at 10:10 pm
I am crying as I write this, I am so very sorry that you lost your dad. I am not looking forward to dealing with this myself. My condolences to your family and I am only glad he is no longer suffering. He was very lucky to having such a loving daughter.
Nahmi from Melbourne
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- January 24, 2012 at 10:10 pm
I am crying as I write this, I am so very sorry that you lost your dad. I am not looking forward to dealing with this myself. My condolences to your family and I am only glad he is no longer suffering. He was very lucky to having such a loving daughter.
Nahmi from Melbourne
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- January 24, 2012 at 10:10 pm
I am crying as I write this, I am so very sorry that you lost your dad. I am not looking forward to dealing with this myself. My condolences to your family and I am only glad he is no longer suffering. He was very lucky to having such a loving daughter.
Nahmi from Melbourne
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- January 24, 2012 at 9:29 pm
I am so sorry to hear about your father. You have been a wonderful support for him and your family. Please know that many hearts are with you.
Hope
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- January 24, 2012 at 9:29 pm
I am so sorry to hear about your father. You have been a wonderful support for him and your family. Please know that many hearts are with you.
Hope
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- January 24, 2012 at 10:40 pm
Please allow me to echo the sentiments of others here: you are a wonderful, caring daughter that any parent would only hope to have raised and to have love them as you have shown your love for your dad. You must know that every moment spent with him was felt in his heart, his spirit. May he rest in peace, and may peace come to you in days ahead. I am so sorry for your loss.
CarolA
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- January 25, 2012 at 12:40 am
I am so sorry to hear of your dad passing and thank you for sharing the details. You really are a devoted daughter and how wonderful that you could bring him home! Take care of yourself and live each day…its so very painful and hard. Thank you again for sharing.
Vermont_Donna, stage 3a, NED
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- February 22, 2012 at 5:09 am
Thank you, Donna. Things are getting back to normal. Could use a vacation soon, but I have got to catch up financially first. I am pleased to see that you are doing so well after Yervoy! I know everyone's case is different, but seeing so many success stories still makes me feel better about this whole mess. I mean, still what little information comes from all of this experience adds to what we know, and aides in someway another battle, right?
-DF
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- February 22, 2012 at 5:09 am
Thank you, Donna. Things are getting back to normal. Could use a vacation soon, but I have got to catch up financially first. I am pleased to see that you are doing so well after Yervoy! I know everyone's case is different, but seeing so many success stories still makes me feel better about this whole mess. I mean, still what little information comes from all of this experience adds to what we know, and aides in someway another battle, right?
-DF
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- February 22, 2012 at 5:09 am
Thank you, Donna. Things are getting back to normal. Could use a vacation soon, but I have got to catch up financially first. I am pleased to see that you are doing so well after Yervoy! I know everyone's case is different, but seeing so many success stories still makes me feel better about this whole mess. I mean, still what little information comes from all of this experience adds to what we know, and aides in someway another battle, right?
-DF
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- January 25, 2012 at 12:40 am
I am so sorry to hear of your dad passing and thank you for sharing the details. You really are a devoted daughter and how wonderful that you could bring him home! Take care of yourself and live each day…its so very painful and hard. Thank you again for sharing.
Vermont_Donna, stage 3a, NED
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- January 25, 2012 at 12:40 am
I am so sorry to hear of your dad passing and thank you for sharing the details. You really are a devoted daughter and how wonderful that you could bring him home! Take care of yourself and live each day…its so very painful and hard. Thank you again for sharing.
Vermont_Donna, stage 3a, NED
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- February 22, 2012 at 4:59 am
Carol, Thank you. I am feeling a lot better than the first couple of weeks. I know I did all I could possibly to, and it is good to know I have a lot more strength than I would have imagined. I just hope I do not need to access it for a very long time.
-DF
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- February 22, 2012 at 4:59 am
Carol, Thank you. I am feeling a lot better than the first couple of weeks. I know I did all I could possibly to, and it is good to know I have a lot more strength than I would have imagined. I just hope I do not need to access it for a very long time.
-DF
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- February 22, 2012 at 4:59 am
Carol, Thank you. I am feeling a lot better than the first couple of weeks. I know I did all I could possibly to, and it is good to know I have a lot more strength than I would have imagined. I just hope I do not need to access it for a very long time.
-DF
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- January 24, 2012 at 10:40 pm
Please allow me to echo the sentiments of others here: you are a wonderful, caring daughter that any parent would only hope to have raised and to have love them as you have shown your love for your dad. You must know that every moment spent with him was felt in his heart, his spirit. May he rest in peace, and may peace come to you in days ahead. I am so sorry for your loss.
CarolA
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- January 24, 2012 at 10:40 pm
Please allow me to echo the sentiments of others here: you are a wonderful, caring daughter that any parent would only hope to have raised and to have love them as you have shown your love for your dad. You must know that every moment spent with him was felt in his heart, his spirit. May he rest in peace, and may peace come to you in days ahead. I am so sorry for your loss.
CarolA
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- January 26, 2012 at 5:04 am
You have my deepest sympathies of the loss of your dad.
As you have mentioned, situations like this are really so surreal. I remember thinking the same thing when I lost my wife to this horrible disease in October 2009.
Take care
Frank from Australia
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- January 26, 2012 at 5:04 am
You have my deepest sympathies of the loss of your dad.
As you have mentioned, situations like this are really so surreal. I remember thinking the same thing when I lost my wife to this horrible disease in October 2009.
Take care
Frank from Australia
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- February 22, 2012 at 5:17 am
Thank you, Frank. I still find the whole thing so…. distant from reality. It's just so hard to put in words, though I know it was all very real. I think in some ways it is good to remember the experiene like a movie, so I can quote it when necessary, but not dwell.
You have offered so much insight and information to so many people during my time on this board – I can't believe I was such a late arrival! I appreciate your diligence in helping support everyone with your own experience. I don't know if I will be able to stick around to offer advice. I don't feel like I have much to offer except on an emotional level, but if I can help someone, we will connect.
Thank you again,
DF
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- February 22, 2012 at 5:17 am
Thank you, Frank. I still find the whole thing so…. distant from reality. It's just so hard to put in words, though I know it was all very real. I think in some ways it is good to remember the experiene like a movie, so I can quote it when necessary, but not dwell.
You have offered so much insight and information to so many people during my time on this board – I can't believe I was such a late arrival! I appreciate your diligence in helping support everyone with your own experience. I don't know if I will be able to stick around to offer advice. I don't feel like I have much to offer except on an emotional level, but if I can help someone, we will connect.
Thank you again,
DF
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- February 23, 2012 at 11:57 am
DF, thank you very much for your kind words.
I feel that the battle against melanoma involves many emotional issues. I encourage you to stick around, and to post whenever you feel that you might be able to help.
Take care
Frank from Australia
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- February 23, 2012 at 11:57 am
DF, thank you very much for your kind words.
I feel that the battle against melanoma involves many emotional issues. I encourage you to stick around, and to post whenever you feel that you might be able to help.
Take care
Frank from Australia
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- February 23, 2012 at 11:57 am
DF, thank you very much for your kind words.
I feel that the battle against melanoma involves many emotional issues. I encourage you to stick around, and to post whenever you feel that you might be able to help.
Take care
Frank from Australia
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- February 22, 2012 at 5:17 am
Thank you, Frank. I still find the whole thing so…. distant from reality. It's just so hard to put in words, though I know it was all very real. I think in some ways it is good to remember the experiene like a movie, so I can quote it when necessary, but not dwell.
You have offered so much insight and information to so many people during my time on this board – I can't believe I was such a late arrival! I appreciate your diligence in helping support everyone with your own experience. I don't know if I will be able to stick around to offer advice. I don't feel like I have much to offer except on an emotional level, but if I can help someone, we will connect.
Thank you again,
DF
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- January 26, 2012 at 5:04 am
You have my deepest sympathies of the loss of your dad.
As you have mentioned, situations like this are really so surreal. I remember thinking the same thing when I lost my wife to this horrible disease in October 2009.
Take care
Frank from Australia
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- January 26, 2012 at 11:40 am
I am so sorry to hear you lost your Dad, and that you ever had to deal with this situation in the first place. Taking care of a loved one at home is so difficult, and at times it almost seems you are on auto-pilot. It is so different than taking care of somebody knowing that they are going to get better. We had many of the same feelings when my younger brother Mikey passed away in December. A sense of relief first, that he was no longer suffering, and a sense of loss that we still carry as if it was yesterday.
I hope that in time it gets better for you.
Maria
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- January 26, 2012 at 11:40 am
I am so sorry to hear you lost your Dad, and that you ever had to deal with this situation in the first place. Taking care of a loved one at home is so difficult, and at times it almost seems you are on auto-pilot. It is so different than taking care of somebody knowing that they are going to get better. We had many of the same feelings when my younger brother Mikey passed away in December. A sense of relief first, that he was no longer suffering, and a sense of loss that we still carry as if it was yesterday.
I hope that in time it gets better for you.
Maria
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- February 22, 2012 at 5:37 am
Thank you, Maria, and I am sorry for the loss of your brother. The perspective does shift depending on the time. Most days I can freely talk about it and think about it without getting worked up. Other days, a song, or a piece of trash under the passenger seat, or a run-into-the-ground old joke gets me like a dagger, and gives me the anxiety aches in my chest. They are few and far between, at least.
Right now I have a weird feeling, as we are leading up to the anniversary of discovering his disease and being swept on the whole crazy journey that just would not slow down. I feel like when the middle of March arrives, and I am not getting any phone calls about suspicious spots on xrays at the ER, or having to intervene on someone's entire life (from resigning to divorce to moving in with us and becoming a total dependent, to advocating for all medical care and ultimately his transition only ten months later), I will feel a lot better.
In the meantime, I found a new dermatologist and will see her in late April. Most o fmy benign looking moles are stable, and some itch, probably form the heater being on this winter, just like every winter. My old dermatologist doesn't accept our new insurance, and the new Dermatologist is in the same system as my dad's Mel specialist. I'm maybe "a little" paranoid. ๐
-DF
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- February 22, 2012 at 5:37 am
Thank you, Maria, and I am sorry for the loss of your brother. The perspective does shift depending on the time. Most days I can freely talk about it and think about it without getting worked up. Other days, a song, or a piece of trash under the passenger seat, or a run-into-the-ground old joke gets me like a dagger, and gives me the anxiety aches in my chest. They are few and far between, at least.
Right now I have a weird feeling, as we are leading up to the anniversary of discovering his disease and being swept on the whole crazy journey that just would not slow down. I feel like when the middle of March arrives, and I am not getting any phone calls about suspicious spots on xrays at the ER, or having to intervene on someone's entire life (from resigning to divorce to moving in with us and becoming a total dependent, to advocating for all medical care and ultimately his transition only ten months later), I will feel a lot better.
In the meantime, I found a new dermatologist and will see her in late April. Most o fmy benign looking moles are stable, and some itch, probably form the heater being on this winter, just like every winter. My old dermatologist doesn't accept our new insurance, and the new Dermatologist is in the same system as my dad's Mel specialist. I'm maybe "a little" paranoid. ๐
-DF
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- February 22, 2012 at 5:37 am
Thank you, Maria, and I am sorry for the loss of your brother. The perspective does shift depending on the time. Most days I can freely talk about it and think about it without getting worked up. Other days, a song, or a piece of trash under the passenger seat, or a run-into-the-ground old joke gets me like a dagger, and gives me the anxiety aches in my chest. They are few and far between, at least.
Right now I have a weird feeling, as we are leading up to the anniversary of discovering his disease and being swept on the whole crazy journey that just would not slow down. I feel like when the middle of March arrives, and I am not getting any phone calls about suspicious spots on xrays at the ER, or having to intervene on someone's entire life (from resigning to divorce to moving in with us and becoming a total dependent, to advocating for all medical care and ultimately his transition only ten months later), I will feel a lot better.
In the meantime, I found a new dermatologist and will see her in late April. Most o fmy benign looking moles are stable, and some itch, probably form the heater being on this winter, just like every winter. My old dermatologist doesn't accept our new insurance, and the new Dermatologist is in the same system as my dad's Mel specialist. I'm maybe "a little" paranoid. ๐
-DF
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- January 26, 2012 at 11:40 am
I am so sorry to hear you lost your Dad, and that you ever had to deal with this situation in the first place. Taking care of a loved one at home is so difficult, and at times it almost seems you are on auto-pilot. It is so different than taking care of somebody knowing that they are going to get better. We had many of the same feelings when my younger brother Mikey passed away in December. A sense of relief first, that he was no longer suffering, and a sense of loss that we still carry as if it was yesterday.
I hope that in time it gets better for you.
Maria
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- January 29, 2012 at 7:05 am
I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site. It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved. To the care givers left behind more recently than I have been:
Please look after yourselves.
People often don't know how they can help you so tell them what you need.
Don't be surprised if some folks you'd thought of as friends, drift away. Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.
One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.
Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).
Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:
Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.
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- January 29, 2012 at 7:05 am
I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site. It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved. To the care givers left behind more recently than I have been:
Please look after yourselves.
People often don't know how they can help you so tell them what you need.
Don't be surprised if some folks you'd thought of as friends, drift away. Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.
One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.
Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).
Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:
Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.
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- February 22, 2012 at 5:47 am
K, my condolences for your own loss, and my thanks for your sympathy. It is a new chapter in life, this so-called getting back to normal. We can't forget what we have been through, but at least we are able to move forward with knowledge of our own strength and abilities to cope with change. Not easy, but doable. Luckily we have had some really good friends who have stuck by our sides and been very supportive, even when others did not really know what to say. They seem to have their own strengths and weaknesses, too, just like me, and in a way that's reassuring. Having a good group of family and friends who can offer different kinds of support has helped immensely. I am glad I was able to express a lot of my needs to them, and that other people, even strangers crossing my path, stepped up when I didn't know what to ask for.
There are some really nice people on the CSN message board who specifically offer a lot of caregiver and grief support.
I also looked at the app, but do not think it is thougroughly ready for use. Seems to have a lot of bugs and stuff to work out, though I like the idea of a photo body map that's easy to log and track changes.
Thanks for sharing, and I wish you peace,
DF
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- February 22, 2012 at 5:47 am
K, my condolences for your own loss, and my thanks for your sympathy. It is a new chapter in life, this so-called getting back to normal. We can't forget what we have been through, but at least we are able to move forward with knowledge of our own strength and abilities to cope with change. Not easy, but doable. Luckily we have had some really good friends who have stuck by our sides and been very supportive, even when others did not really know what to say. They seem to have their own strengths and weaknesses, too, just like me, and in a way that's reassuring. Having a good group of family and friends who can offer different kinds of support has helped immensely. I am glad I was able to express a lot of my needs to them, and that other people, even strangers crossing my path, stepped up when I didn't know what to ask for.
There are some really nice people on the CSN message board who specifically offer a lot of caregiver and grief support.
I also looked at the app, but do not think it is thougroughly ready for use. Seems to have a lot of bugs and stuff to work out, though I like the idea of a photo body map that's easy to log and track changes.
Thanks for sharing, and I wish you peace,
DF
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- February 22, 2012 at 5:47 am
K, my condolences for your own loss, and my thanks for your sympathy. It is a new chapter in life, this so-called getting back to normal. We can't forget what we have been through, but at least we are able to move forward with knowledge of our own strength and abilities to cope with change. Not easy, but doable. Luckily we have had some really good friends who have stuck by our sides and been very supportive, even when others did not really know what to say. They seem to have their own strengths and weaknesses, too, just like me, and in a way that's reassuring. Having a good group of family and friends who can offer different kinds of support has helped immensely. I am glad I was able to express a lot of my needs to them, and that other people, even strangers crossing my path, stepped up when I didn't know what to ask for.
There are some really nice people on the CSN message board who specifically offer a lot of caregiver and grief support.
I also looked at the app, but do not think it is thougroughly ready for use. Seems to have a lot of bugs and stuff to work out, though I like the idea of a photo body map that's easy to log and track changes.
Thanks for sharing, and I wish you peace,
DF
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- January 29, 2012 at 7:05 am
I lost my husband, best friend & the love of my life to this terrible disease 7 months ago & this is probably the 1st time in over 6 months that I've checked in to the site. It's a shame that as an addendum to the memorial part of the website, there is no forum for those of us left behind after our loved ones lose their battle as I, for one, can no longer face postings relating to the various treatments when even the most cutting edge trials ultimately failed to save the man I loved. To the care givers left behind more recently than I have been:
Please look after yourselves.
People often don't know how they can help you so tell them what you need.
Don't be surprised if some folks you'd thought of as friends, drift away. Your true friends will be there for you, and the ones you lose, you really won't miss — your capacity for missing someone is maxed out with missing your loved one.
One on one grief counselling and/or a grief support group (preferably one made up of people who've suffered the same loss, ie. spouse/parent/child/sibling) can be tremendously helpful – no one truly understands what you're going through unless/until they've been through it themselves.
Don't bottle things up: talk about: your loved one, your feelings; express youself creatively (art; journals; letters to your loved one).
Honor your loved one's memory in a: memory book; blog; quilt of old clothes; scrapbook; and/or taking part/creating ways that raise melanoma awareness — melanoma is an evil beast to battle once it gets its hooks in, & for all the talks of a "cure" I've chosen to focus on prevention & on educating people in the hope that the black ribbon becomes as ubiquitous as the pink until most folks will be sufficiently aware that they can defeat the beast as early as possible in stage 1 — first step: please pass on this mel app to everyone you know:
Goodnight & good luck — it's really tough to continue life's journey without your life partner alongside you.
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