thrashej

I am so, so sorry you are going through this. My heart breaks for you and your family. I have no additional suggestions. The only thing I will say is tell your father what he means to you. Don't hold anything back. You don't want any regrets. Even if it is akward for you, DO IT. You will always be glad you did. Peace be with you in such a difficult time.

Lisa, I am so sorry about the passing of your father. My father, too, died of SCLC only 6 months after diagnosis.You post is truly such a great tribute to your Dad. I made peace the way you did and like you am "OK" with it. I think it is a real testament to a person's character when they can see a loved one in such a horrible, distressing state and push through that grief and say what needs to be said. I was afraid of doing exactly that until one night the hospice RN said to me, "Honey, he knows he is dying". I was so scared to remind him of that. Everything in me wanted to curl up in a ball and cry. But I, like you, did what needed to be done. Thank God too, because my Dad will always know how I truly felt. Know that you are a wonderful daughter and your Dad is looking over you smiling. Smile back. Everyday.

I am so sorry. When a family member enters hospice care it makes everything "real". One thing hospice did very well for my father was pain management....and nausea. They deliver the meds right to your door. When you are facing terminal, chronic pain, that is priceless. Pain management should be #1. I am sorry you are losing your father. It was hard to watch my Dad...who always joked and said he would die before he would wear "briefs", become incontinent in the end. Some part of me was thankful he wasn't 100% mentally there in the end due to his brain mets. But who knows how much they really know. It is hard to even think about. Try to stay strong. When my father was in hospice and I had to watch his condition deteriorate everyday it was the most helpless, powerless, I have ever felt in my life. Cancer is running the show. I am so angry about that. There will be days, towards the end, that you will feel like you just can't see the devastation anymore. It is very surreal, actually. You need to be strong for your Dad. He needs you now more than ever. I will be thinking of and praying for you and your father.

Many hugs. So sorry about your situation. I know how devastating the diagnosis of brain mets can be. My father had four lesions at the time of diagnosis. Back then, before the dreaded cancer, I didn't know anything about cancer treatment other than sometimes they get chemo and/or radiation. Never knew anything about brain mets or gamma knifes or anything! My father got WBR, but that was it, and they told us that would just prolong his life by a few months. Nothing was ever mentioned about gamma knife. I was upset about that after my Dad died. My understanding however, is that if you have 4+ mets they do not do Gamma knife. I wonder why???? Anyone know?? If you can remove three, why can't you remove 4? Too much trauma to the brain? Hmmm. You are in my prayers. I hope you get good news. Seek out all the info you can. Get second opinions, multiple tests. BE SURE. You can only do the best you can do, but in retrospect, I wish I had been more proactive and educated about my Dad's condition. He died so suddenly though that I never got the opportunity to research all that much. Stay strong, I know it is hard.

Topotecan is a second line treatment, as I understand. They use it when the first line of chemo was unsuccessful. My father had it after the first round shrunk most of his tumors but did not touch a tumor in his lungs. It kept growing despite. He died a few months later. One thing this website has done for me though is it has shown me how people with this disease DO survive...even those with extensive stage SCLC. Don't give up hope!!! My father gave up hope way too soon. The disease has a poor prognosis, but THERE ARE survivors! Hoping and praying for the best!!

Wow, I so much know how you feel. We went thru the same thing with my Dad. I even posted about "hospice doping my Dad". He was doing the same things your mom is now doing.....even falling asleep STANDING UP!! That said, I will say now that in some ways I am glad they did. It was the Ativan + Oxycontin combo that really did it. Made him a zombie. But if we hadn't he would have been a dying, uncomfortable, anxious mess. Sometimes it is actually better to keep them "out of it". We were glad it went the way it did considering how quickly he died after that. We thought he had all this time left and were angry that they were doping him up but he ended up only having about two weeks from that point. If you do decrease the meds, you run the risk of your Mom having more anxiety and uncontrolled pain. Just a different perspective. I am so sorry you are going through this. It is a horrible thing to watch. I wish you strength! You are doing right by your Mom and are a wonderful daughter! Janice

Lori, I haven't been around in a while...too painful...but I remember you and your mother. I am so sorry. My heart goes out to your entire family. You have done your best and your mother knows that. May God be with you at this time. Janice

I wanted to add that I think they never did lung radiation because the tumor was not in his lung but on the outside of his lung. They did do WBR and those tumors did shrink. But after one round of chemo, another "super tumor" grew in his other lung and I think after he got so sick (needed a blood transfusion) after 2nd round chemo that they thought he wasn't in good enough condition to continue. Plus, the tumor grew even larger after 2nd round chemo. So, it was chemo resistant. Lung radiation would not have baught him too much time I don't think and maybe they wanted him to be as comfortable as possible in his last few weeks/months. Oh well. I can't guess at what should have been done. I know I have to get the rest of my family to quit smoking and I know now that if anyone else I love gets dx with any type of cancer, that I will seek a second opinion. My Dad wouldn't have ran around to a million docs anyway. Plus, he didn't have much financially. Thank goodness for insurance! Thanks all!

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

Updating to say that Dad died yesterday. I guess it happened pretty quick overall, since he could still get up on Tuesday. They put a Foley catheter in on Wed, by Sunday he was gone. I am so glad it happened like that because they told us the cancer had mets to his spine and right leg. When we would reposition him he could cry out if not medicated. He is at peace now. May he fly with the angels. I will never forget the help and sympathy I got here. I wish you all strength in your battle with cancer. You all are wonderful people. Janice

I told my father everything I had to say today. I stepped out of my comfort zone and just took the bull by the horns and said it. He, while not altogether "there", seemed truly pleased with what I said, even though I bawled the whole time. I can now say that I will have no regrets. I told him how much I would miss him when he goes but that I know I will be able to talk to him everyday and that he will be in a better place. I told him how proud I was of him for fighting so hard. I told him I knew how tired he was and that it was OK to stop fighting. I told him I (and my siblings) would be OK. We would miss him terribly every day but we would go on. We will take care of my brother, help him if he needs help, no matter what. I told him we all love his so, so much. I told him that he will always be my Daddy and I hugged him and cried. He said very little but what he did say meant a lot. I hope even though he is not really in reality that he knew what I was saying. Ever since that conversation he has barely awoken at all. There is talk now about inserting a Foley because he likely will not move from the bed now. I hope so much that he goes quick from here. Please let him go quick from here. Please let him peacefully depart from this world now to a better place..... I am at his bedside again tomorrow...

I told my father everything I had to say today. I stepped out of my comfort zone and just took the bull by the horns and said it. He, while not altogether "there", seemed truly pleased with what I said, even though I bawled the whole time. I can now say that I will have no regrets. I told him how much I would miss him when he goes but that I know I will be able to talk to him everyday and that he will be in a better place. I told him how proud I was of him for fighting so hard. I told him I knew how tired he was and that it was OK to stop fighting. I told him I (and my siblings) would be OK. We would miss him terribly every day but we would go on. We will take care of my brother, help him if he needs help, no matter what. I told him we all love his so, so much. I told him that he will always be my Daddy and I hugged him and cried. He said very little but what he did say meant a lot. I hope even though he is not really in reality that he knew what I was saying. Ever since that conversation he has barely awoken at all. There is talk now about inserting a Foley because he likely will not move from the bed now. I hope so much that he goes quick from here. Please let him go quick from here. Please let him peacefully depart from this world now to a better place..... I am at his bedside again tomorrow...

My deepest condolences to you and your family. Your Dad no longer is in pain, that is the important thing. Take care of yourself.

You know, I don't really know what happened with my Dad then. He was dx...sclc with mets to pancreas and brain (4 lesions). Dr said options were chemo and WBR to shrink tumors only. Chemo worked on all other tumors but this "super" tumor began growing in the opposite lung despite the chemo. We tried a different chemo...it continued to grow. After that, and the brain radiation, the Dr's told him that there was nothing more they could do and released him to hospice care. Why do you think he wasn't told to "go under the knife" (gammaknife for brain?) I wonder.?? Any ideas???

Eni, My Dad went thru WBR. It really did not give him too many negative side effects. It seemed much less brutal than the chemo. His hearing is almost gone though in one ear and his head discolored from it. But he was only given months to live so all that paled in comparison to just getting a bit more time. If he had not done chemo/radiation he was only given two weeks. HOWEVER, remember that WBR will shrink the tumors but not get rid of them. Are they agreeing that this treatment for you Mom will be palliative and not prophylactic? Meaning, at this point, they are not saying the cancer could go into remission, right? The only hope with my Dad was that the chemo would shrink the tumors in his body and the WBR would shrink the tumors in his brain. Just remember that if your mom gets the radiation, that one day she will likely get to this point again. That is not for sure, because of the dexa, but could be. That is what saddens me about my Dad. Yes, we got about 7 more months out of his chemo/radiation tx but those 7 months were hard and full of struggle for my father. To only end up at the same end result. I wonder if it would have been better to just have let the CA run its course. ?? I think having the time was better for him though, to resolve some things. And that is what counts. Anyway, rambling now. Please know that you will be in my prayers and thoughts. This time is so hard, I know. You are doing all you can, you are a good daughter.

Wow, I can't imagine how hard watching your mom like that must be. I am experiencing similar..my father has brain mets with sclc and is dying right now. He is "out of it" but not angry and fighting....yet. I am praying for you and your family!!

Well, now they are not releasing Dad from the hospice. They now think he is shutting down. I was in school today but I guess he was not doing very good. I cancelled work this weekend and plan to go be by his side after school tomorrow. I wish I could cancel school but I can't without being dropped...I just wish he did not have to die in that facility. Truth is, though, I don't know if there is anyplace he could die that he would be truly happy and at peace. I am just an emotional wreck. It sounds bad to say but I was wondering how I was going to take him being with me. My husband was stressed, I was stressed, before he even got here! I can barely even talk with him without breaking down in tears...and that is just at the hospice! Very hard to be "real and raw" because I will just bawl. I just don't want to lose him. I am suddenly 5 years old and losing my daddy. It is like someone is ripping me up inside with a knife. I was listening to Eric Clapton's "River of Tears" today just bawling. I hope I can hold it all together. I hope he will be at peace and know that we love him. I hope he won't think we just left him there.. Please, please, please say a prayer for my Dad and that he will find peace. I am so afraid he will die terrified. Thank you all Janice

Well, now they are not releasing Dad from the hospice. They now think he is shutting down. I was in school today but I guess he was not doing very good. I cancelled work this weekend and plan to go be by his side after school tomorrow. I wish I could cancel school but I can't without being dropped...I just wish he did not have to die in that facility. Truth is, though, I don't know if there is anyplace he could die that he would be truly happy and at peace. I am just an emotional wreck. It sounds bad to say but I was wondering how I was going to take him being with me. My husband was stressed, I was stressed, before he even got here! I can barely even talk with him without breaking down in tears...and that is just at the hospice! Very hard to be "real and raw" because I will just bawl. I just don't want to lose him. I am suddenly 5 years old and losing my daddy. It is like someone is ripping me up inside with a knife. I was listening to Eric Clapton's "River of Tears" today just bawling. I hope I can hold it all together. I hope he will be at peace and know that we love him. I hope he won't think we just left him there.. Please, please, please say a prayer for my Dad and that he will find peace. I am so afraid he will die terrified. Thank you all Janice

Thank you all for the advice, I appreciate it. Well, hospice feels that Dad is getting close to not being able to make decisions for himself (due to brain mets). We asked him whether he wanted to stay at hospice or come live with me and he can't reply to it. He says he needs to "think about it" and looks very confused. When we approach him again with it we get the same answer. We asked him if he liked being at hospice and he looked at us, confusingly, and said "NO". So.....hospice told us that we very well might have to decide what we think he would want. We talked about it and have decided that he would most likely want to be at my house, around family. The aids at the hospice told us that he won't even let them hold onto his arm when he is walking. That he won't let them touch him. So.....since we CAN touch him, albeit not enough, my house might be better. I am trying to deal with all this. I have school and work on top of it. Trying to figure out which one to eliminate. We will need to hire a nurse for part of the evenings I think, atleast if I stay in school (it is nursing school and important). I have a lot to figure out right now. Time for a heart to heart with hubby. He said it was OK for Dad to come live here but when I told him the reality he did not seemed to thrilled. I mean, what can I do? I know no one LIKES it, but I don't want to put my 60 year old Dad in a long term care facility. I have seen those places and I know he wouldn't feel comfortable there. Hospice really is only short term and if not, would cost $150 per day. Next couple of days they are delivering to me a hospital bed, bedside commode, the works. I have to clear out a room and start cleaning to make it feel as "homey" as possible. Lotsa work and school on Friday and Saturday. I am exhausted already and I haven't even started... Everyone keeps asking me if I am prepared to do this. Well, excuse me, but how do I know??? I mean, how can you really know? All I know is I want my father to be comfortable in the last phase of his life and that I love him. THAT IS ALL. Anyone have any advice for me???

Thank you all for the advice, I appreciate it. Well, hospice feels that Dad is getting close to not being able to make decisions for himself (due to brain mets). We asked him whether he wanted to stay at hospice or come live with me and he can't reply to it. He says he needs to "think about it" and looks very confused. When we approach him again with it we get the same answer. We asked him if he liked being at hospice and he looked at us, confusingly, and said "NO". So.....hospice told us that we very well might have to decide what we think he would want. We talked about it and have decided that he would most likely want to be at my house, around family. The aids at the hospice told us that he won't even let them hold onto his arm when he is walking. That he won't let them touch him. So.....since we CAN touch him, albeit not enough, my house might be better. I am trying to deal with all this. I have school and work on top of it. Trying to figure out which one to eliminate. We will need to hire a nurse for part of the evenings I think, atleast if I stay in school (it is nursing school and important). I have a lot to figure out right now. Time for a heart to heart with hubby. He said it was OK for Dad to come live here but when I told him the reality he did not seemed to thrilled. I mean, what can I do? I know no one LIKES it, but I don't want to put my 60 year old Dad in a long term care facility. I have seen those places and I know he wouldn't feel comfortable there. Hospice really is only short term and if not, would cost $150 per day. Next couple of days they are delivering to me a hospital bed, bedside commode, the works. I have to clear out a room and start cleaning to make it feel as "homey" as possible. Lotsa housework and school on Friday and Saturday. I am exhausted already and I haven't even started... Don't know what I am going to do about work. I work PRN but am required to work so many hours a month..in the ER. It is a job I don't particularly like, it was a foot in the door of a hospital when I started nursing school but now it just seems like STRESS upon more stress. But it is a paycheck. I am supposed to work 12 hrs sunday too. Might have to give my notice on that. How will I even be able to do that? If I were to give anything priority it would seem to be school since that will give me a career in the end. I just did not want to have to tap out my savings. Everyone keeps asking me if I am prepared to do this. Well, excuse me, but how do I know??? I mean, how can you really know? All I know is I want my father to be comfortable in the last phase of his life and that I love him. THAT IS ALL. Anyone have any advice for me???

Thank you all for the advice, I appreciate it. Well, hospice feels that Dad is getting close to not being able to make decisions for himself (due to brain mets). We asked him whether he wanted to stay at hospice or come live with me and he can't reply to it. He says he needs to "think about it" and looks very confused. When we approach him again with it we get the same answer. We asked him if he liked being at hospice and he looked at us, confusingly, and said "NO". So.....hospice told us that we very well might have to decide what we think he would want. We talked about it and have decided that he would most likely want to be at my house, around family. The aids at the hospice told us that he won't even let them hold onto his arm when he is walking. That he won't let them touch him. So.....since we CAN touch him, albeit not enough, my house might be better. I am trying to deal with all this. I have school and work on top of it. Trying to figure out which one to eliminate. We will need to hire a nurse for part of the evenings I think, atleast if I stay in school (it is nursing school and important). I have a lot to figure out right now. Time for a heart to heart with hubby. He said it was OK for Dad to come live here but when I told him the reality he did not seemed to thrilled. I mean, what can I do? I know no one LIKES it, but I don't want to put my 60 year old Dad in a long term care facility. I have seen those places and I know he wouldn't feel comfortable there. Hospice really is only short term and if not, would cost $150 per day. Next couple of days they are delivering to me a hospital bed, bedside commode, the works. I have to clear out a room and start cleaning to make it feel as "homey" as possible. Lotsa work and school on Friday and Saturday. I am exhausted already and I haven't even started... Everyone keeps asking me if I am prepared to do this. Well, excuse me, but how do I know??? I mean, how can you really know? All I know is I want my father to be comfortable in the last phase of his life and that I love him. THAT IS ALL. Anyone have any advice for me???

It is nice in Arizona right now. Not too hot yet. You will get a good tan!! Kidding aside, I think you are doing the right thing. Ultimately, you have to do what you are comfortable with or you will never be able to live with yourself. Take care and our prayers are with you and your family.

Wow, I am so sorry for your loss. Thank you for that. Knowing somewhat what to expect helps. It is distinguishing end of life signs from adverse medication effects that is tricky!!

To those of you who have already lost someone to cancer..... At the end, can you tell me what happened with them cognitively and pysiologically? I went to see my Dad in hospice yesterday and he seemed very agitated in the AM (up, down, stand, sit, up..he is also on Ativan). He is very quiet and mostly looks around like he "doesn't get it". He will make a comment every now and then when you ask him but there is no feeling behind it. His eyes look different too. Then, in the afternoon, he laid down in his bed and just started staring at nothing. His breathing has become erratic and can stop for a bit. This happened when he first laid down. We actually thought he died right then. I was about ready to lose it. but he didn't. He stared off for a while, like he was watching TV but he wasn't. But he was not asleep either. Then, out of the blue, he asked me if I liked boats. ????? The TV had nothing about boats on it, we were not talking about boats. Very weird. He does have brain mets but how do you know if what is happening is from brain mets, death imminent, or the switch from oxycontin to methadone?? he ate a bit, just some fruit and is still drinking liquids (not much). Has anyone experienced this? How long before they actually die do they have "the look of death".?? Yesterday was a VERY scary day for me...