amw

Mary, I feel the same way, I'm with him 24/7 and many nights just sit next to him and hold his hand and listen to him breath. He told me today leaning his head on my shoulder, "I'm just so tired." I told him I knew that and I just wanted him to rest and not worry about anything. I know that was his atempt to be close, and yet also express he knows the end is near. I worry I might fall asleep and he will slip away and I won't know it. I get what you are saying about them being here, yet not being here, too. That's mostly where we are starting since late last evening, majority of the time he sleeps since a few hours after getting all final paper work done. It's as if he was hanging one to do that and now he knows all is taken care of, and he can rest peacefully. I hope your short trip will be enjoyable for you, I know it can't be easy without Bill, and leaving your dog and home that both have so much meaning to you and the connection to Bill. We have to learn to take baby steps and you are such an inspiration to me! Please try to make the best of your trip and remember Bill is there with you, as you will always carry him in your heart, it's just not the same as having them next to us, I know. Be safe, talk to you soon I hope. amw

Mary, It's as if you speak the very words I am thinking and feeling. I know right now my heart is just breaking, but once he is gone he will have taken the very biggest piece with him. I try to just think of today, but we as caregivers are the ones carrying all the baggage of financial, medical and what we have to do to move on each day of the present and continue to have to think about the future. I don't feel like I even want to move ahead without him, and am just trying to give him the best and happiest days he can have left. He sleeps most of the time and I hate to bother him as I know how tired he is from the cancer, yet I can't help thinking in my head, please wake up and just talk to me, joke around with me the way you use to, snuggle with me, just hold me so tight never letting go. I worry about finances and how to even pay for his cremation as we live pay check to pay check so to speak. I have only been able to save a few hundred and when talked to the cremetory they said they had to have it in full. So, I am trying to sort throught stuff and have my son do a yard sale to help get the rest, I just have to have faith that it will all work out in the end. There is just so many things to have to deal with, when all I want to do is sit by him and hold his hand. Thank you for your continued support Mary! I'm so glad that you have gotten some hope back, yet life will never be the same. I pray that each day is giving you more hope and eases the pain of your loss of Bill, and that you can see little things that bring you enjoyment and some happiness each day! We both just have to remember to breath, and if need be take it as each minute comes!

We finally got the will and other legal stuff finished yesterday, one burden off my mind. We only have a cute little shutzui three years old together, we both have children from previous marriages, but there is major betrayal issues with stuff his kids did to both him and I. I hear this is not uncommon in situations like this, but it hurt him so deeply, and because it caused him pain and heart ache it caused me heart ache. I had to step in and call agencies to protect him and it was a big mess for a while. All of our children are adults, and he has six grandchildren we can't even see now, and we use to have them all the time and even take them on vacations with us. His youngest granddaughter was the closest to me, as she was just 5 years old when we got together and she spent the most time with us. She even would tell people that I was her grandma when they would ask who I was. I have no grandchildren of my own yet, but I always concidered his as my own. So it is just us and our fuzzy baby Chloe, now. He sleeps most of the time now, which is hard for me just because I want the conversations and to hear his voice, as I know it won't be long before it will be scilented due to him having to be sedated at the end, and then by his passing. I feel so selfish at times because I just want more, more time, one more vacation we can enjoy together, more conversations, more kisses, more snuggling. I see it fading each day, and I think that is one of the hardest parts of watching a loved one go from a vibrant active person to one that can't even stand up or take a step, he keeps telling me "my heart tells me I want to do these things, but my body just says no!" I see the bewilterment in his eyes and come over his face when there is something he can't do anymore.

Marty, Thank you for your kind words, but I am only doing what my heart is leading me to do for my husband. I truely believe I was brought into his life to be by his side through this rough road he must travel. Yes, hospice and the team we work with through them helps a great deal. But, this site has been a God send to say the very least. I am so greatful I found it and the wonderfully caring and supportive individuals that also are here, including you! Thank you for having such a place for us to be able to come and express ourselves and have a place to say what we can't always say to our loved one or people in our lives that don't understand for one reson or another.

Kayc, Thank you for posting and sharing our happy moment! It was a truely beautiful day and I will cherish it forever! Unfortunately Jim is having extreme weakness in his legs and can't stand or walk, so the edema is not getting better. After our stay at inpatient I understand better what is going on in his body, not that our nurse hasn't tried to explain, she just feels the way I do, that we need to know all the gory details, but Jim should just try to enjoy the days he has left and not worry about the pain and stuff to come that he has no control over and would cause him more stress and anxiety. The only thing he is worried about is suffering in the end, and I promised him I would do everything in my power to see he doesn't suffer and is comfortable and pain free. I would take all his pain and suffering on myself if I could. I just want him to enjoy everything he can until he has to be sedated at the end, which is coming soon, much sooner than I wanted... just thought we would have a little more time. We did a beautiful hand print calague at hospice with the art therapist and bearevment councelor while there last week, he placed his print on the page first, and then she asked where I wanted to place mine. It was as if someone else took my hand and placed it over his as if our fingers were interlocking and holding hands, and I said to him look honey now we will be holding hands forever! That is what she titled our prints, and we put a second set from our other hand on it then included our baby, our three year old shuizu with a couple of paw prints. There is even room that I can put a few pictures down the side, and a friend is looking through some frames she has to put our memory into for me to keep close. He finally opend up and we talked after the bearevment councelor talked with him and explaind there were just some things I needed to hear from him and that I am a strong person and could handle anything he said, even if it made me cry. He just doesn't like for me to cry, especially in front of him. But, no matter how strong we all are we still love our partners and we have to grieve over the lose of their health, ability to get out and do things with us, what we use to have, what we are losing and so on. It is just hard for them to see us go through this, plus they are going through their own stuff and coming to terms with dying and leaving us behind. I'm trying to just make his last days relaxed and as enjoyable as they can be, and take his worries and burdens away!

Mary, You have commented on some of my other posts, I so appriciate your support and understanding!I know from reading some of your post that you truely know where I'm coming from, and I keep you in my thoughts and prayers, and thank you for caring.

West, Thank you for your prayers, they do help! Thank you for suggestions, too!

KayC, Thank you for your support and advice. Hospice has hooked us up with an attorney and he is coming out today to have the legal stuff done, one less worry off my mine when it is finished. I have to rely heavily on my faith right now for the rest, that it will pull me throught. But, I to know I have this place to come and all here understand, even if it is hard to write back or know what to say at times! Thank you again!

Thank you for your kind words. I agree that people don't know what or how to say things to anyone going through this situation. On one hand they want to be happy for you and on the other just don't know what to say or are afraid to say the wrong thing. We had a beautiful wedding and we know it will never be for as long as we wanted it to be, but we have every day and it means that much more to us because we know we are on barrowed time.

My husband had two falls week before last, they finally convinced him to come to the inpatient unit to work on adjusting some of his meds, as they needed to increase his steroids due to the tumor growth and he has started retaining fluid in his abdomin and feet, mostly. This past Tuesday afternoon he was admitted. When the doctor was talking to me about his condition I asked him to be honest with me about how much time they felt he had left. I was expecting to hear him say 2 to 3 months from all the research I have done on his cancer form, but the doctor told me it would more than likely be within 2 weeks, and if the med changes helped the most we would have is 6 weeks, but he feels from his knowledge it will be closer to the 2 week mark. This has put me in panic mode, as we are still in the process of getting all final papers in place and he just seems to want to procrastinate, or is having a rough day and we can't get out to take care of it. I feel so much frustration and anxiety right now, and he also gave me details that Jim will have to be sedated at the end and may be this way for days, which will end all our communication. Never to hear him say he loves me, or anything else he might want to say. They also told me he could bleed out due to where his tumors are located they seem to be very concerned about this happening. I don't know if I am right or wrong, but I have asked them not to give him the details about time and bleeding out, because I want him not to stress out about anything and be able to just be happy each day he has left. We have talked about the sedation when it is time that they need to do that, he is okay with it, and understands he will have to pass at the inpatient unit instead of at home as he had wished, but said it that is the way he won't suffer then he will go along with it. I worry about all the financial stuff that will hit once he passes, we don't even have the money to cremate him and I don't want to tell him and get him upset, but I will have to live in our van because I won't have enough money to keep our apartment, let alone pay for food and utilities. I can't tell him how scared I am about all this stuff because he is even arguing with me paying the rent this month, and I'm not sure why unless he knows the end is close and wants to have at least that much for his cremation.

We finally did it, we got married after being together for 5 years! It is so bitter sweet, knowing we will probably never even get to have our first year wedding anniversary, let alone a 10, 25 or 50yr. The hospice we are connected to has a small chapel, they just opened their new facility about a year ago, and our chaplain that is on our hospice care team found out we were wanting to get married and offered to perform the ceremony so we called the hospice to see if they had a chapel, and asked if it would be ok to use it for our ceremony. The staff went wild, they were so happy we wanted to use the chapel to celebrate life. We said the staff and volunteers seemed to be as excited as we were, if not more so! They wanted to have a couple local papers cover it, so we said ok, but it ended up being 4 newspapers and a local news channel that covered it. They joked that we had poperattzi like Prince William and Kate Middleton. They also held a small cake and punch reception for us. One of they young ladies that worked in dietary made us a beautiful three tiered cake it tasted as good as it looked! Since the wedding Jim has gone down hill so quickly. He has edema going on and even lasix doesn't help, and he fell twice this past week once hitting the back of his head because I couldn't get around the van quick enough to catch him. His nurse thinks he could of passed out because he fell straight back. They wanted him to go to the ipu for the weekend but he refused. He has no strength in his legs, I think part of it is the edema causing numbness and some is meds causing balance and stability issues. I just can't believe how quickly he has declined in the past two weeks, do all patients take such a rapid decline. I'm not ready to loss him, and I know it's out of my control, I just want our good days to come back and continue a little longer.We were going to try to get away for a long weekend honeymoon, but he declined so fast we didn't get to. I just want as many good memories as we can have, because once he's gone they are all I will have left.

Thank you for your prayers. Please share if you feel you wnat to, sometimes things can help, and I want to have him here with me as long as I possibly can. I am also sorry for your loss, he sounds like a wonderful person to have known. amw

Jim and I have been together for 5 years, and have talked about getting married several times over the years. Some of the time it was just jokingly, while other times we were very serious. We decided to wait until I was finished with my schooling, but things have changed now, he is terminal and has chosen hospice and ended treatments, just going for comfort care and quality days. While he was in the hospial for 15 days, after he had made the choice to stop treatments that were not helping and just making him sicker and very tire. He said lets get married! It is exciting and made me happy, yet I can't shake the thought of how bitter sweet it is, and am trying to care for him and plan a nice little ceremony and reception with just a few friends and family members. I have had to do a lot by phone and internet, which is hard because you don't know what your getting without getting to see it first hand, But, am trying to make the best of it. We picked our rings out today, and he ended up having to take a nap after we got home. I'm trying to be happy and just think of the wedding and the time we have had together as well as the time we have left. But, as I said before it's bitter sweet knowing we probably won't even have a 1st anniversary, let alone 20+ years together. I guess I should just be happy and stop being selfish.

Thank you both for your support. I mentioned in an earlier post that we had planned to get married after I finished my schooling, but then after he was diagnosed he tried pushing me away, I held firm and told him I wasn't going anywhere. Now he has brought up the subject of marriage, and wants to marry me soon. It is now bitter sweet, as I know how short it will be, but I love him and we have been together for better or worse for the past five years anyway, now it will just have the paper to prove it. The hardest part for me is I don't want him to give up, I want him here with me for as long as I can have him, yet I don't want him suffering and just holding on for my sake. How do you say goodbye?

Sorry my computer messed up, and wouldn't let me finish typing. After he was diagnosed he tried several times to push me away, but I let him know I wasn't going anywhere. I told him no matter what we found out, good or bad, I would be by his side, and protect and take care of him. I think he realizes that now!

We just got home last night after spending 15 days in the hospital. They did a second biopsy to see if the area that had become agressive had transformed into another type of lymphoma on top of what he already has, and unfortunatly it has transformed. They said they could treat it agressively with chemo, but that it would only hold it off for a while, wouldn't cure it. Jim and I cried and talked it over, we decided we want him to have quality of life, even if it means giving up some quantity of life. I don't want him to suffer, I just want as much time with him as I can, five years isn't long enough! So, today the nurse is coming out to sign us up for hospice. when we were sitting in his hospital room, he said he was getting stir crazy and just wanted to get home, I told him I understood that but they needed to make sure he had everything he needed set up before they could send him home. He replied, I have everything I need, I have you! This made me feel so good to hear those words. We had planned on getting married after I finished scool later this year, but after he was

I don't think she is trying to get rid of you in the sense you are thinking or feeling, it is just that they have kind of a set way of doing things and wanting their clients to move on in life. The reason I know this is I'm going into grief counseling and have learned the way some of them work. We all are whiny from time to time, and that's okay. You suffered a great loss, and everyone grieves in their own way and in their own time! Take it easy on yourself, give yourself the time you need, but keep moving forward, and remember it's okay to feel what you are feeling! Whine if you want or need to from time to time. I'm whiny here and there too, because I'm lossing my significant other.

My segnificant other/partner was told today that the pet san they did last week shows an increase in aggressive cells in the tumors in his neck and spleen, and the other tumors throughout his body are growing slow. But right now the areas they are most concerned are his neck and spleen. He was suppose to have had his third chemo treatment today, but the dr. said it wouldn't help much for the aggressive areas and he's less concerned about the other tumors at this time. They want to do another biopsy to see what mixture of chemo meds might help the more aggressive tumor cells, but I worry that before they will be able to get him in he will have to have a trac. He was close to having to get one the day before thanksgiving, I know how much he doesn't want to have one, and when he does have to, we will no longer be able to talk. He is keeping alot of his thoughts and feelings bottled up, and I want him to be able to share them, both good and bad. That's always been one of the best areas of our relationship, we could always talk about anything and everything. But now he keeps so much from me, I can only guess that he thinks if it's not said than it's not happening I just want him to be able to talk to me and express what he is feeling and thinking about. Is he angry, scared, and what he needs and so on. He just seems to withdral more all the time, and I need thisfrom him, as much as I know he needs it from me.

Fred, I'm sorry for your loss, it will take time to get out of the "we" and into the "me". But you speak words of wisdom even if you don't think you do. Keep faith in your self and your strengths, as well as your faith. They will help to guide you as you travel down this new road in your life.

Novi, I'm sorry for what you are going through! Sometimes people don't know what to say or how to act in these situations. I experienced the same when my mother was diagnosed with stage 4 cervical cancer and stage 3 ovarian cancer. And then there are those who don't want to face the realities of life, and that we all will die someday. I agree with you, that I hope I am a better friend to someone going through something as we are going through. My partner is dying of cancer and his best friend of almost 30 years rarely even calls any more, and won't even come to see him for a visit. This breaks my heart that people act this way, I try to make every effort to not be like that. Keeping you in my thoughts and prayers.

Mary, Thank you for your kind words, they are greatly appriciated! I too am sorry for your loss. I agree with what you said about needing to have breaks away, and I am in school studying to become a social worker and ironicly a grief counselor, as I want to work in hospice. I have lost other family members to different types of cancer, and both of my parents have had cancer and other health issues that have drawn me to this field and area of study. We just found out he had the cancer in the middle of May, and it's been non stop with tests, biopsies, treatments and hospital trips and sometimes stays in the hospital. He has declined so quickly, and even with my knowledge of what's to come, I just want more time! Time for us to be able to travel, time to cuddle, time to go to movies and all the other things we use to do that we no longer can. Am I being selfish? At times I think I am, because I don't want to loss him, yet other times I wish he would quietly just fall asleep and be out of pain. It's so hard because he will be taking such a big piece of me with him when he goes, yet I promised him I would be the best social worker and grief counselor I can be to help other families and patients going through the loss. He wouldn't let me drop out of school, not even cut my hour, because he said he is proud of me and what I will be doing to help others.

I am so sorry for what you are going through, I can relate on many levels with you. My partner is terminal with cancer, and my mother is close to starting dialysis as she only has one kidney left that works and it is failing, she also has congestive heart failure, and had a stroke back in 2006o her mind is not to clear.It is hard when friends walk away when we need them most! I am doing his care all on my own as well, with no one to help, his family took what they wanted from him then tossed his away like a bag of trash. Once he is gone I will be on my own as well, it has many mixed emotions invoved with it, and will have to take time later to sort them out, to busy now as I know you know what I mean being a caregiver.

I'm lossing my partner of five years to cancer. One of hardest part for me is I want to spend as much time with him as possible, but he now sleeps much of the time. It is so hard to watch what he is going through, but I wouldn't have it any other way. I told him from the start when we found out he had cancer that I wasn't going anywhere, and to lean on me through the tough times and laugh with me in the good times. He tried several times to push me away, but I didn't back down and he finally realize I ment what I said. It is so difficult watching someone that full of life become so fraile so quickly. He said to me about a week ago when we were talking about things he still wants to do, that his heart and head tell him one thing, but his body just can't do it any more.