It's so lonely.

glasus

Man this is getting harder, I'm glad she's doing ok.My inner strength 5%,holidays coming, more work.For those of you who can get help take all you can. God bless and prayers to you all.

zinniemay

hard
It is hard, I know it is. I have no answers for youonly let you know you are not alone.

kimmygarland

zinniemay said:

hard
It is hard, I know it is. I have no answers for youonly let you know you are not alone.

You Are Not Alone
This is my second holiday season going through this mess, and last year I tried to make everyone understand that I am doing all I can and frankly, don't have the time or money to do a lot of holiday buying, baking or frankly, even celebrating. Some of my family thought that was a mistake - at least the celebrating part. But it's so hard to be at family gatherings and act like all is well when all you can think about is CANCER and everything that needs to be done.

Last year my husband could eat and was recovering from chemo/rads. This year he is recovering from surgery and can't swallow. He is already saying we will participate in all the holiday functions and don't worry about him - it won't bother him. Well, I don't believe a word of it but will try and abide by his wishes. Ugh. I'm not looking forward to it.

So as you see, you are not alone. Hang in there and vent to us, we understand.

And P.S. - have you met Little Debby? she's a favorite around here... lol (the snack cakes)

mswijiknyc

like a vacuum
this stuff sucks. no way around it. but we are here to listen and help in anyway we can. My husband has decided he wants no further treatment after only having surgery. So I understand how lonely it can be.

Little miss Debbie is good, but I prefer the company of all my uncles- Ben and Jerry, Jack D., and Jim B, I don't invite Jack and Jim over often, but darn it it's nice to know they are around on occasion.

luz del lago

Yes, it is hard
Since April 28th of this year, the day my hubby was diagnosed with extensive sclc, life has been harder. Even the "good" days that are sprinkled throughout, are difficult when I think," how long will we have to love each other?".
Coming to this circle of love, comfort and sharing has been a life-line for me. I have shared some very difficult feelings here, and have always been given very wise and caring support.
For the last few weeks I haven't written much as first I was quite busy and exhausted since my love was receiving whole brain radiation. He was very blessed to not have experienced much side-effects, except for severe fatigue which even lead to some pretty bad depression for him. This was a very tough time for both of us. I took care of all of the home issues, drove everywhere, yard work, cooking, monitoring his meds and care, sitting for my grandbaby, planning a party for our beautiful daughter, a visit from out of town friends, all while watching him sink lower and lower into depression! I have always handled all of these things, but watching my love feel so badly was the toughest.
I am so blessed to have a wonderful family and when it comes to the holidays approaching, my lovely sister has said that she will host the get togethers. If I wish, if I am able, I can bring some of my holiday specialties. No pressure at all. In fact, since the diagnosis, all events have been held at my families homes. They just want to spend time with us, but understand that even the hour before, we may have to cancel should my hubby feel ill. All of our friends are and feel the same, "come, no need to bring anything, just yourselves, and we will understand if you can't make it". We are truly blessed! I was also honest with them all from the beginning, I let them know that things were going to be a bit different, at least for awhile. For you see, we were the party givers, event planners in the past. I loved to entertain, host, cook and have family and friends over quite often. It makes me sad that we haven't been able to do any of this since April. I am praying that all will be calm and that we may have a small,cozy Christmas with our family at our home this year. My sissy says she will cook and come help decorate. See, what did I tell you? She's wonderful! My hubby wants us to have Christmas at our home this year and I will do what I can to make his wish happen.
Talk to family and friends. Let them know that it is difficult to commit to many plans and events at this time. Tell them that if you both can make it to an occasion they are hosting, that you will. You may not be able to bring a dish or dessert. They will understand and want your presence only, even if it is only for a short while. We have found that it does the heart good to get out occasionally.
Sending prayers and good wishes your way.

Lucy

3Mana

luz del lago said:

Yes, it is hard
Since April 28th of this year, the day my hubby was diagnosed with extensive sclc, life has been harder. Even the "good" days that are sprinkled throughout, are difficult when I think," how long will we have to love each other?".
Coming to this circle of love, comfort and sharing has been a life-line for me. I have shared some very difficult feelings here, and have always been given very wise and caring support.
For the last few weeks I haven't written much as first I was quite busy and exhausted since my love was receiving whole brain radiation. He was very blessed to not have experienced much side-effects, except for severe fatigue which even lead to some pretty bad depression for him. This was a very tough time for both of us. I took care of all of the home issues, drove everywhere, yard work, cooking, monitoring his meds and care, sitting for my grandbaby, planning a party for our beautiful daughter, a visit from out of town friends, all while watching him sink lower and lower into depression! I have always handled all of these things, but watching my love feel so badly was the toughest.
I am so blessed to have a wonderful family and when it comes to the holidays approaching, my lovely sister has said that she will host the get togethers. If I wish, if I am able, I can bring some of my holiday specialties. No pressure at all. In fact, since the diagnosis, all events have been held at my families homes. They just want to spend time with us, but understand that even the hour before, we may have to cancel should my hubby feel ill. All of our friends are and feel the same, "come, no need to bring anything, just yourselves, and we will understand if you can't make it". We are truly blessed! I was also honest with them all from the beginning, I let them know that things were going to be a bit different, at least for awhile. For you see, we were the party givers, event planners in the past. I loved to entertain, host, cook and have family and friends over quite often. It makes me sad that we haven't been able to do any of this since April. I am praying that all will be calm and that we may have a small,cozy Christmas with our family at our home this year. My sissy says she will cook and come help decorate. See, what did I tell you? She's wonderful! My hubby wants us to have Christmas at our home this year and I will do what I can to make his wish happen.
Talk to family and friends. Let them know that it is difficult to commit to many plans and events at this time. Tell them that if you both can make it to an occasion they are hosting, that you will. You may not be able to bring a dish or dessert. They will understand and want your presence only, even if it is only for a short while. We have found that it does the heart good to get out occasionally.
Sending prayers and good wishes your way.

Lucy

Just take care of him
Lucy,
You are taking such good care of your husband and remind me of how me & my husband were. I just wish we would have realized how soon he would die so we could have talked about my future without him. I never realized how lonely I would be and how this would change my life forever. With the holidays coming, I wish I could go to sleep the day before thanksgiving and wake up the day after New Years. I always had Christmas at our house, but just can't do it this year. Hopefully one of our kids will step in and have it. You've been going through so much I think it would be too stressful for you to have it too. If someone else has said they'd have it, let them. I'll say a prayer for you both & hope you can have a good holiday season. "Carole"

luz del lago

3Mana said:

Just take care of him
Lucy,
You are taking such good care of your husband and remind me of how me & my husband were. I just wish we would have realized how soon he would die so we could have talked about my future without him. I never realized how lonely I would be and how this would change my life forever. With the holidays coming, I wish I could go to sleep the day before thanksgiving and wake up the day after New Years. I always had Christmas at our house, but just can't do it this year. Hopefully one of our kids will step in and have it. You've been going through so much I think it would be too stressful for you to have it too. If someone else has said they'd have it, let them. I'll say a prayer for you both & hope you can have a good holiday season. "Carole"

Hi Carole
Thank you for your words of care and encouragement. Reading them took me back to the night that my hubby was diagnosed. After gathering our children and close family and telling them the news, I remember both of us being so exhausted. It had been almost 2 weeks of testing and emotional roller coasters. That night I don't even think my dearest was quite aware of all that had happened as he had the biopsy that late afternoon and I really think he was still under the affects of the anesthesia. We went to bed and I remember sobbing into his arms and saying " don't leave me" over and over. Thanks to Celexa, lorazipan for the wave of fear that would grip me, and therapy I have come to accept that he does not belong to me, he belongs to the Lord. And whatever and whenever something happens it will be the Lord's will. In the past two months I have come to hold God and ask Him not to leave me, to always be with me and to help me through this journey. I believe that one of the first things He did for me was guide me to this site. It is a haven for me. Here I can share my feelings, good or bad, and to date, always receive kindness, information, and prayers.
My heart cries with and for you. There are times that I stand on our back porch and think, who will admire the stars with me? How many cups of coffee will I make? And even though my hubby is here with me, this trauma has changed him. Physically, he doesn't have the strength to do any of the things we enjoyed doing together. Building decks and ponds and sharing the yard work, and my favorite part, sitting back together and admiring our hard work. The chemo and now the brain radiation have taken some of him too. But I still give thanks and rejoice every morning that I wake and he is still here. I am adapting to all of this. I can be stubborn so it is not an easy thing for me.
At the beginning, we did not discuss the " what will it be like for me if he passes" issue. With all the appointments and treatments, there was no time left in a day. Also, I felt guilty to bring it up, as my hubby was determined that he would beat this and life would resume as normal. I felt that bringing it up would send the message to him that I did not have hope, that I did not believe he could beat it. One day we were talking and he made a comment like, " you should rejoice for me, for when I die I will see the face of God". I said to him, of course I will rejoice for you on that day, but have you thought about what will it be for me on that day? From that day on, he has at least understood some of my sadness when it comes.
So I can't even begin to imagine what it must feel like for you, but I have begun to think of how it will be like for me and how I will manage to get through a day without him. One thing I know for sure, I will come to this haven and soak up the kindness and comfort that is found here.
Carole, I pray that your children and grandchildren give you reasons to smile, to feel joy once again. I pray that your husband's love and his memory fill you with warmth throughout the holidays. I pray that God holds you in His arms and one day you will not feel so alone. God bless you always.

Lucy

nyogus1

luz del lago said:

Hi Carole
Thank you for your words of care and encouragement. Reading them took me back to the night that my hubby was diagnosed. After gathering our children and close family and telling them the news, I remember both of us being so exhausted. It had been almost 2 weeks of testing and emotional roller coasters. That night I don't even think my dearest was quite aware of all that had happened as he had the biopsy that late afternoon and I really think he was still under the affects of the anesthesia. We went to bed and I remember sobbing into his arms and saying " don't leave me" over and over. Thanks to Celexa, lorazipan for the wave of fear that would grip me, and therapy I have come to accept that he does not belong to me, he belongs to the Lord. And whatever and whenever something happens it will be the Lord's will. In the past two months I have come to hold God and ask Him not to leave me, to always be with me and to help me through this journey. I believe that one of the first things He did for me was guide me to this site. It is a haven for me. Here I can share my feelings, good or bad, and to date, always receive kindness, information, and prayers.
My heart cries with and for you. There are times that I stand on our back porch and think, who will admire the stars with me? How many cups of coffee will I make? And even though my hubby is here with me, this trauma has changed him. Physically, he doesn't have the strength to do any of the things we enjoyed doing together. Building decks and ponds and sharing the yard work, and my favorite part, sitting back together and admiring our hard work. The chemo and now the brain radiation have taken some of him too. But I still give thanks and rejoice every morning that I wake and he is still here. I am adapting to all of this. I can be stubborn so it is not an easy thing for me.
At the beginning, we did not discuss the " what will it be like for me if he passes" issue. With all the appointments and treatments, there was no time left in a day. Also, I felt guilty to bring it up, as my hubby was determined that he would beat this and life would resume as normal. I felt that bringing it up would send the message to him that I did not have hope, that I did not believe he could beat it. One day we were talking and he made a comment like, " you should rejoice for me, for when I die I will see the face of God". I said to him, of course I will rejoice for you on that day, but have you thought about what will it be for me on that day? From that day on, he has at least understood some of my sadness when it comes.
So I can't even begin to imagine what it must feel like for you, but I have begun to think of how it will be like for me and how I will manage to get through a day without him. One thing I know for sure, I will come to this haven and soak up the kindness and comfort that is found here.
Carole, I pray that your children and grandchildren give you reasons to smile, to feel joy once again. I pray that your husband's love and his memory fill you with warmth throughout the holidays. I pray that God holds you in His arms and one day you will not feel so alone. God bless you always.

Lucy

I understand
Our diagnosis was 4/13/10. nsclc, mets to bone & lymph. We are fortunate that his treatment has put him in partical remission. The fear is how long will it last?

I understand the sadness, worry, depression, sleepless nights, anger that I will be alone someday, the many prayers to God for strength. Owning all the chores, and the small panic when everything doesn't get done, then the letting go......who cares what's not done! Missing the things you used to do together, but don't do anymore (he's too tired, too much pain, or doesn't want people to "see him like this").

A friend asked me why I put myself through looking at this site. Some posts are really sad and desparate. I have to read the sad and desparate posts, as they make me feel like I'm not alone and prepare me for the potential tough times ahead. I read all the wonderful advice and encouragement. It gives me hope that I can really do this. I'm strong enough. I will perserve and I will be the best Caregiver I can. I will also accept my moments that are not so beautiful, as I am human.

Lucy, I have grown from your post, along with everyone elses.

Thanks to all who post.
Nancy

Tina Blondek

nyogus1 said:

I understand
Our diagnosis was 4/13/10. nsclc, mets to bone & lymph. We are fortunate that his treatment has put him in partical remission. The fear is how long will it last?

I understand the sadness, worry, depression, sleepless nights, anger that I will be alone someday, the many prayers to God for strength. Owning all the chores, and the small panic when everything doesn't get done, then the letting go......who cares what's not done! Missing the things you used to do together, but don't do anymore (he's too tired, too much pain, or doesn't want people to "see him like this").

A friend asked me why I put myself through looking at this site. Some posts are really sad and desparate. I have to read the sad and desparate posts, as they make me feel like I'm not alone and prepare me for the potential tough times ahead. I read all the wonderful advice and encouragement. It gives me hope that I can really do this. I'm strong enough. I will perserve and I will be the best Caregiver I can. I will also accept my moments that are not so beautiful, as I am human.

Lucy, I have grown from your post, along with everyone elses.

Thanks to all who post.
Nancy

Hang In There
Hello Nancy
You are doing a great job caring for your husband. Now that he is in partial remission, rejoice in this moment. Celebrate each minute. This site is absolutely wonderful. My dad passed March 10, 2010 from ec with mets to the liver. I faithfully come here daily to meet and help people like yourself. Please keep in touch.
Tina in Va

wifflefrog

Tina Blondek said:

Hang In There
Hello Nancy
You are doing a great job caring for your husband. Now that he is in partial remission, rejoice in this moment. Celebrate each minute. This site is absolutely wonderful. My dad passed March 10, 2010 from ec with mets to the liver. I faithfully come here daily to meet and help people like yourself. Please keep in touch.
Tina in Va

Do what you can
I say do what you can, if celebrating makes it worse let them worry.
I actually love the holidays its my favorite of the year and this year it will be my son's first everything as he was born 12/30/09. Yet I have no idea how I will enjoy everything with my hubby going through chemotherapy & being exhausted. I know I need to be with him, but I also want to be around family. Its going to be so hectic. I have not even starting thinking about it really though cause I am not sure if he will even be there.
So being lonely even when surrounded with help is never easy either.

Carrie King

Lonely
I agree, it sure is getting harder. I get so sick of people wanting to know "what are you doing for the holidays". Even at the Neurosurgeons today as we scheduled ANOTHER surgery, this time to replace bone flap. All I can think of is another surgery, another possiblity of infection again.

Even going to the store and hearing music about being in love and with the one you love is driving me nuts. Makes me wonder what my life is going to be like next week, let alone at the holidays.

Even with a strong group of friends, family and church, it still is lonely.

Carrie King

Lonely
I agree, it sure is getting harder. I get so sick of people wanting to know "what are you doing for the holidays". Even at the Neurosurgeons today as we scheduled ANOTHER surgery, this time to replace bone flap. All I can think of is another surgery, another possiblity of infection again.

Even going to the store and hearing music about being in love and with the one you love is driving me nuts. Makes me wonder what my life is going to be like next week, let alone at the holidays.

Even with a strong group of friends, family and church, it still is lonely.

lovingwifedeb

It's So Lonely - The Holidays Are Coming Ready Or Not...
Funny, my husband and I were just touching on the subject of the holidays coming up yesterday. With the decision of a "green diet" in our house eating and cooking has been revamped in our home so the holidays will be a challenge this year, my will power for one! My husband is doing great so far with his and it's his life that we are changing our eating life style for. With all the cakes, cookies, and holiday treats coming it will be hard on everyone.

In December my husband will be facing his first round of re-testing since his first diagnosis on Father's Day of this year... so Christmas will be a very anxious time of waiting for test results again, hoping and praying the melanoma has not moved to other places. Like a monster it lives with us and hides in waiting, our choice of treatment at this time is limited so therefore building up his immune system is my husband's challenge.

Good luck to all of you, please remember to eat well during your holidays. Remember that Cancer is attracted to sugar.

Love to all and no matter where you are during Thanksgiving and Christmas like I am be ever so grateful our loved ones are still with us.

Deb
lovingwife to Bob, stage 3c melanoma

RAE RAE

luz del lago said:

Hi Carole
Thank you for your words of care and encouragement. Reading them took me back to the night that my hubby was diagnosed. After gathering our children and close family and telling them the news, I remember both of us being so exhausted. It had been almost 2 weeks of testing and emotional roller coasters. That night I don't even think my dearest was quite aware of all that had happened as he had the biopsy that late afternoon and I really think he was still under the affects of the anesthesia. We went to bed and I remember sobbing into his arms and saying " don't leave me" over and over. Thanks to Celexa, lorazipan for the wave of fear that would grip me, and therapy I have come to accept that he does not belong to me, he belongs to the Lord. And whatever and whenever something happens it will be the Lord's will. In the past two months I have come to hold God and ask Him not to leave me, to always be with me and to help me through this journey. I believe that one of the first things He did for me was guide me to this site. It is a haven for me. Here I can share my feelings, good or bad, and to date, always receive kindness, information, and prayers.
My heart cries with and for you. There are times that I stand on our back porch and think, who will admire the stars with me? How many cups of coffee will I make? And even though my hubby is here with me, this trauma has changed him. Physically, he doesn't have the strength to do any of the things we enjoyed doing together. Building decks and ponds and sharing the yard work, and my favorite part, sitting back together and admiring our hard work. The chemo and now the brain radiation have taken some of him too. But I still give thanks and rejoice every morning that I wake and he is still here. I am adapting to all of this. I can be stubborn so it is not an easy thing for me.
At the beginning, we did not discuss the " what will it be like for me if he passes" issue. With all the appointments and treatments, there was no time left in a day. Also, I felt guilty to bring it up, as my hubby was determined that he would beat this and life would resume as normal. I felt that bringing it up would send the message to him that I did not have hope, that I did not believe he could beat it. One day we were talking and he made a comment like, " you should rejoice for me, for when I die I will see the face of God". I said to him, of course I will rejoice for you on that day, but have you thought about what will it be for me on that day? From that day on, he has at least understood some of my sadness when it comes.
So I can't even begin to imagine what it must feel like for you, but I have begun to think of how it will be like for me and how I will manage to get through a day without him. One thing I know for sure, I will come to this haven and soak up the kindness and comfort that is found here.
Carole, I pray that your children and grandchildren give you reasons to smile, to feel joy once again. I pray that your husband's love and his memory fill you with warmth throughout the holidays. I pray that God holds you in His arms and one day you will not feel so alone. God bless you always.

Lucy

While this response was not
While this response was not intended for me I feel the need to thank-you Lucy that I came upon it. This is my first day on this web-site. I cannot beleive how similar our stories are. It was as though I could have written this. The only difference is that my husband has not found that peace and has not talked about the future. I am so scared that he is too scared. I just want him to find that inner peace. I only hope I can deal with the end as beautifully as you are. Thank-you.

Robin