› Forums › Cutaneous Melanoma Community › Need Some Help/Advice from Caregivers
- This topic has 30 replies, 7 voices, and was last updated 12 years, 4 months ago by
MariaH.
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- May 24, 2011 at 11:10 am
My husband Dave is 2 1/2 years out from a Stage III melanoma diagnosis after interferon. Last week my 30 year old brother (after severe abdominal pain and weight loss) was diagnosed with Stage IV inoperable singet cell cancer (still running pathology to determine where it originated). He was transferred to Roswell (the room right next to where my husband did his LND recovery) where they said there was nothing they could do, and he will be coming home soon.
My husband Dave is 2 1/2 years out from a Stage III melanoma diagnosis after interferon. Last week my 30 year old brother (after severe abdominal pain and weight loss) was diagnosed with Stage IV inoperable singet cell cancer (still running pathology to determine where it originated). He was transferred to Roswell (the room right next to where my husband did his LND recovery) where they said there was nothing they could do, and he will be coming home soon.
My problem is this – after 2 1/2 of years of positive attitude, my husband is paranoid that his will come back now. He is taking this VERY hard (and trust me, he's a tough guy). When my brother was explaining his symptoms, my husband admitted that he has had several of the same. He goes back for his 6 month check up on June 10, and is now asking to have scans done. I don't know what to do to help him – he is scared that he will be in Mike's shoes someday, and so am I.
Also, if there are some websites for us to help with my brother's prognosis (care networks or such) that you have used to help you through "end of life" issues, I would appreciate it. It is very hard to stay positive for my husband and let my emotions out with my brother (who is borderline mentally retarded and lives with my parents). I feel lost, overwhelmed, angry at the docs, scared that Dave's will come back – I'm a mess. And I just need to vent. I'm sorry, I know this may not be the board to post this on, but it was so supportive when Dave was first diagnosed, and I haven't found another with the support and love this one has.
Maria
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- May 24, 2011 at 12:29 pm
Very sorry to read of your brother's diagnosis. I wonder if he would be eligible for any
clinical trials?I think that one possible way to ease Dave's concerns is for him to have CT and/or PET
scan(s) done, just in case. Perhaps his symptoms could be due to some undiagnosed
condition that might have nothing to do with cancer. Any competent doctor will be able to
give you their advice on this.I have seen a couple of websites regarding end of life issues, but I didn't find them very
helpful. This is probably because I lost my late wife suddenly due to liver failure. At
the back of mind was the attitude that one should be prepared for the worst while hoping
for the best.Please try to stay positive. Remember we are here to help, so if there is anything that
concerns you don't hesitate to ask.Best wishes
Frank from Australia
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- May 24, 2011 at 12:29 pm
Very sorry to read of your brother's diagnosis. I wonder if he would be eligible for any
clinical trials?I think that one possible way to ease Dave's concerns is for him to have CT and/or PET
scan(s) done, just in case. Perhaps his symptoms could be due to some undiagnosed
condition that might have nothing to do with cancer. Any competent doctor will be able to
give you their advice on this.I have seen a couple of websites regarding end of life issues, but I didn't find them very
helpful. This is probably because I lost my late wife suddenly due to liver failure. At
the back of mind was the attitude that one should be prepared for the worst while hoping
for the best.Please try to stay positive. Remember we are here to help, so if there is anything that
concerns you don't hesitate to ask.Best wishes
Frank from Australia
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- May 24, 2011 at 1:52 pm
I'm so sorry Maria, this is a lot for any one person to hold up under so please give yourself whatever support that you need. It might be time to see a counselor with experience in working with caregivers to get the help *you* need to manage all of this and be there for your brother and husband both.
Does your brother have someone besides you who can be an advocate for him the way you have been for your husband? I think that if I had to do the kind of research and information gathering I have done about melanoma for a different cancer I would be totally overwhelmed too.
I agree that your husband should have full body scans to set both of your minds at ease. There are many cancer symptoms, like night sweats, that can be caused by a number of other things. Medications for one and also blood sugar imbalances so talking the symptoms your husband is worried about over with his doctor may also give you both some peace.
I'm glad that you came back for support.
Carmon in NM – Stage IIIB 9/2008, Stage IV 6/2010 with brain and adrenal mets. NED since 4/13/2011.
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- May 24, 2011 at 1:52 pm
I'm so sorry Maria, this is a lot for any one person to hold up under so please give yourself whatever support that you need. It might be time to see a counselor with experience in working with caregivers to get the help *you* need to manage all of this and be there for your brother and husband both.
Does your brother have someone besides you who can be an advocate for him the way you have been for your husband? I think that if I had to do the kind of research and information gathering I have done about melanoma for a different cancer I would be totally overwhelmed too.
I agree that your husband should have full body scans to set both of your minds at ease. There are many cancer symptoms, like night sweats, that can be caused by a number of other things. Medications for one and also blood sugar imbalances so talking the symptoms your husband is worried about over with his doctor may also give you both some peace.
I'm glad that you came back for support.
Carmon in NM – Stage IIIB 9/2008, Stage IV 6/2010 with brain and adrenal mets. NED since 4/13/2011.
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- May 24, 2011 at 2:40 pm
Maria, I’m sorry that you are going through this compounded situation. Is it possible to have your brother referred to Hospice? A good hospice organization can provide much needed assistance to both your loved one and the family. They should have many resources that include counseling by social workers and spiritual counselors. They should be the best resource for end of live issues and will do as much or as little as your brother wants or needs. They also provide counseling for the family and might be able to help you and Dave.Maybe Dave could visit his oncologist to discuss his symptoms and see if further testing can be done. Best Wishes.
Jule-
- May 25, 2011 at 2:23 am
Thank you all for the kind words and advice. Dave and I both visited my brother today, and he was having a much better day since they switched him over to methadone for his pain. I think that seeing him in pain really bothered Dave, and seeing that they can manage it helped. Dave has contacted his onc and is scheduling scans with his June appt. As for me, I am handing the reins over to my mother – when my brother was diagnosed, they all looked to me as if to say: "well, you handled it with Dave, what do we do?". I guess the old saying "teach a man to fish" is coming into play here, and with the exception of looking for clinical trials, they will be doing the bulk of the caregiving. We are a close family, and the with the grace of God, we will get through this.
Thanks for letting me vent –
Maria
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- May 25, 2011 at 2:23 am
Thank you all for the kind words and advice. Dave and I both visited my brother today, and he was having a much better day since they switched him over to methadone for his pain. I think that seeing him in pain really bothered Dave, and seeing that they can manage it helped. Dave has contacted his onc and is scheduling scans with his June appt. As for me, I am handing the reins over to my mother – when my brother was diagnosed, they all looked to me as if to say: "well, you handled it with Dave, what do we do?". I guess the old saying "teach a man to fish" is coming into play here, and with the exception of looking for clinical trials, they will be doing the bulk of the caregiving. We are a close family, and the with the grace of God, we will get through this.
Thanks for letting me vent –
Maria
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- May 24, 2011 at 2:40 pm
Maria, I’m sorry that you are going through this compounded situation. Is it possible to have your brother referred to Hospice? A good hospice organization can provide much needed assistance to both your loved one and the family. They should have many resources that include counseling by social workers and spiritual counselors. They should be the best resource for end of live issues and will do as much or as little as your brother wants or needs. They also provide counseling for the family and might be able to help you and Dave.Maybe Dave could visit his oncologist to discuss his symptoms and see if further testing can be done. Best Wishes.
Jule -
- May 26, 2011 at 5:25 pm
Certainly this is the place to vent and post worries and concerns and anything else that you need to get out. This is cancer related, that makes it valid to be here. I you want to get ttally of the cancer topic, you are welcome to drop over to the off-topic board for non-cancer stuff.
Here is a couple of books that I would recommend to your family.
1. “The Power of Two” surviving Seriius Illness with an Attitude & an Advocate. by Brian & Gerri Monaghan (A road Mp for the Journey Ahead.)2.”Anti-Cancer” A New Way Of Life by David Servan-Schreiber, MD, PhD
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- May 26, 2011 at 5:25 pm
Certainly this is the place to vent and post worries and concerns and anything else that you need to get out. This is cancer related, that makes it valid to be here. I you want to get ttally of the cancer topic, you are welcome to drop over to the off-topic board for non-cancer stuff.
Here is a couple of books that I would recommend to your family.
1. “The Power of Two” surviving Seriius Illness with an Attitude & an Advocate. by Brian & Gerri Monaghan (A road Mp for the Journey Ahead.)2.”Anti-Cancer” A New Way Of Life by David Servan-Schreiber, MD, PhD
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- December 14, 2011 at 12:06 pm
By brother Mikey passed away peacefully on Saturday, December 10, at home.
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- December 14, 2011 at 12:43 pm
Maria, you have my deepest sympathies on the death of your brother. My thoughts are with you and your family.
Take care
Frank from Australia
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- December 14, 2011 at 12:43 pm
Maria, you have my deepest sympathies on the death of your brother. My thoughts are with you and your family.
Take care
Frank from Australia
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- December 14, 2011 at 12:43 pm
Maria, you have my deepest sympathies on the death of your brother. My thoughts are with you and your family.
Take care
Frank from Australia
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- December 15, 2011 at 12:53 am
Maria,
i am very sorry to hear of your brothers death. I am glad to hear that he had a peaceful passing. The pain is what we all fear having to suffer, this is why many of us believe that pain control is a major point early on and in the later days can well be THE major item. It is understood that you have a irreplaceable hole in your life that only time can help ease the intensity of your family's lose.
Hope you and Dave are holding up under this extra load. We know what it is for another another on the board to pass on, It is even worse when that one is extremey close to us. We ar pulling for you both.
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- December 15, 2011 at 12:53 am
Maria,
i am very sorry to hear of your brothers death. I am glad to hear that he had a peaceful passing. The pain is what we all fear having to suffer, this is why many of us believe that pain control is a major point early on and in the later days can well be THE major item. It is understood that you have a irreplaceable hole in your life that only time can help ease the intensity of your family's lose.
Hope you and Dave are holding up under this extra load. We know what it is for another another on the board to pass on, It is even worse when that one is extremey close to us. We ar pulling for you both.
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- December 15, 2011 at 12:53 am
Maria,
i am very sorry to hear of your brothers death. I am glad to hear that he had a peaceful passing. The pain is what we all fear having to suffer, this is why many of us believe that pain control is a major point early on and in the later days can well be THE major item. It is understood that you have a irreplaceable hole in your life that only time can help ease the intensity of your family's lose.
Hope you and Dave are holding up under this extra load. We know what it is for another another on the board to pass on, It is even worse when that one is extremey close to us. We ar pulling for you both.
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- December 16, 2011 at 2:20 am
So sorry to hear about Mikey. I am glad that it was a peaceful passing, at least. My heart goes out to you and your family, Maria.
Michelle
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- December 16, 2011 at 2:34 am
Thank you so much for the kind words. Mike meant so much to all those who met him,. I can't even begin to explain how many lives he had touched in his 31 years. May God bless him…. and I know that when my number is called, he will be there… with a smile. 🙂
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- December 16, 2011 at 2:34 am
Thank you so much for the kind words. Mike meant so much to all those who met him,. I can't even begin to explain how many lives he had touched in his 31 years. May God bless him…. and I know that when my number is called, he will be there… with a smile. 🙂
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- December 16, 2011 at 2:34 am
Thank you so much for the kind words. Mike meant so much to all those who met him,. I can't even begin to explain how many lives he had touched in his 31 years. May God bless him…. and I know that when my number is called, he will be there… with a smile. 🙂
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- December 16, 2011 at 2:20 am
So sorry to hear about Mikey. I am glad that it was a peaceful passing, at least. My heart goes out to you and your family, Maria.
Michelle
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- December 16, 2011 at 2:20 am
So sorry to hear about Mikey. I am glad that it was a peaceful passing, at least. My heart goes out to you and your family, Maria.
Michelle
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