It's so lonely.

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

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

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

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