Flowergirlie

Sarah, I am so sorry about your mother and all you are feeling and going through. It is a horrible disease and I wish there was more to say or do to make the disease go away or the pain the disease causes go away. You are in my thoughts. Flowergirlie

OK, I do not want to sound like a schmuck but I feel as though I have made a decision on behalf of my husband that may not have been the best and I would like some input, please. As time has passed, I have acquired more information from the oncologist and triage nurse than my husband has and I have reserved some of the information from my husband in order to "protect" him but feel like he needs to, at this point, know the full extent of this disease he is plagued with. The reason I feel it has changed from before is that he is experiencing just about every complication from chemo and cancer and has questioned if he is able to continue with the chemo because it has been so horrible and his quality of life is so poor now but wants to go on solely because maybe he will be cured. But, there is no cure for this disease, but only the ability to prolong life, right? I think he needs to know all the information so that he can make a more educated decision in wanting to continue treatment. He is fairly bed ridden (poor baby ) and it crushes me when he doesn't know if he can make it through another treatment but goes ahead anyway because he wants to be cured. I am not trying to be negative or defeatist but at some point I have to be real in everyone's best interest. No one else can be strong for us so it is up to me to deal with all of the issues. Thanks again to all of you who are so supportive and wonderful! Wishing all of you the happiest of holidays possible!

Well, we are in the 5th round of chemo and my husband is doing so very poorly. We had the CT last week and the results were that all tumors showed shrinkage (YEAH! ), one small new lesion and pleural effusion. He is feeling so bad so the doctor wanted to postpone a day and have a brain MRI. MRI came back clean (YEAH! ) so chemo started on Wednesday. Husband has been vomiting blood for a couple days now and has started to lose weight quickly (10 pounds in 3 days). Doctor said we have to keep going with chemo because we do not have much more to go and we are seeing results. I have had about 5 hours of sleep this week and am exhausted! I am trying to just keep going and also to be as strong as possible but it is so hard to see my husband suffer so deeply every single day. He will be having a blood transfusion tomorrow morning. It seems like he has every complication imaginable and it makes me so sad. Is all of this normal? I am so scared of what is going to happen when he is at the end of the 6 chemo treatments and we are just wondering and waiting.

I don't know anything about it but I am sorry she is having a hard time and hope it all works out soon. Good Luck!

Maybe magazines or a book or headphones and music so that she can keep occupied. My husband most enjoys listening to his headphones and being able to nod off during chemo. Also, I got a heating pad for my husband which was very comforting to him while he rests at home. I try to rub his neck and back as much as I have time because sometimes that is the best he feels all day.

I don't know if it will help, but my husband couldn't eat much of anything but he could eat omelettes with American Cheese and M&M's for desert. It is not a healthy diet really but it put ALL of the weight back on and then a little extra (and my husband had lost 35 pounds!). His oncologist said it is better to have the weight no matter how he puts it on (some may not agree???). Good Luck!

Welcome! I am sorry you have to be here but very glad you found this site for support and answers since you do have to be here. I think it is the greatest gift to anyone who is going through this horrible disease! The one thing that was of the utmost importance in our experience was that I read EVERYTHING there was to know about my husband's specific diagnosis, so that no matter what the doctor said, I would understand and be able to reciprocate with any unanswered questions I might have had. When your father is not feeling OK, it is OK for you to take him to the ER or call the doctor/oncologist and make an appointment or talk to them and ask them questions, because you are concerned and do not know if it is normal. At the start of treatment for my husband, I thought everything was a normal side effect until some of the symptoms got so bad that I had to rush him in to the ER only to find out he would have died if I had not taken him in (they were not side effects of chemo), so it is very important to watch any unusual activity. The beginning is so hard because your family is in shock and it is so hard to swallow a cancer diagnosis and treatment is very intense and suddenly life as you know it has changed. But, hang in there, we are all here for you whenever you need! I wish you and your father the best!

The cancer center called and said they want to adopt our family for the holidays! I am so touched by this and think it is the nicest gesture. I can't help but think maybe there is another family that needs it more. On one hand, we are going through this very devastating adjustment in our lives and it is wonderful to be thought of and on the other, I want families that do not have to have and would not want to take away from someone who could benefit. I actually wanted to try and organize adopting a family myself, even though I do not have the money to do it by myself but together with some others we could pull it off, so that a family in need would have a little help and then I received the call saying someone wanted to adopt us. Do you think it is wrong that I accepted? I am a giver. I like to help others and am not used to others helping us.

This has been a problem too. Senna Plus, GenSen, any Senna seemed to be the only thing that worked. It is taken every day, without any interruption or the whole process has to start all over, in our case anyway, so you may want to see what works and what doesn't. Good Luck!

I agree! You have enough on your plates and do not need the family stepping in and making demands, you need support if anything, not extra stress. It is OK to say No. Cancer certainly has proven not to accommodate our schedules and also isn't convenient but unfortunately is a part of our lives, so everyone has to adapt to how things are now. Holidays are to at least try and enjoy so remind everyone of that and then go on with your schedule and the way all of you want to spend your special day and if your family would like to join, then it will have to be on your terms. Happy Holidays!

I don't mean to only post when things are not going well. I think I forgot to do the (knock, knock, knock) earlier today when I told someone things were going OK and jinxed myself or something. I intended this morning to write on here with good things to say.

Just a quick update for anyone who is interested: I had started this as a happy update because we have been enjoying each other so much since he has been out of the hosptial and feeling better but he is back at his unpleasantness this afternoon so, never mind! Next Monday we have a restaging CT scan and then chemo starts again. It is amazing how a couple wonderful days can so quickly be erased when the screaming starts. Hopefully we can make the best out of the holidays which seem to be less than joyous right this second! We had a friend of a friend diagnosed with another type of the evil cancer recently and I have been trying to help her get situated too. Often I wonder why the saying "You do not get more than you can take" is too often used when it is so obviously untrue...???

Outstanding news!!!!!!

SS decides if he is qualified or not. The paperwork is requested from the doctor by SS once you have applied to SS. If SS has additional questions about the condition, they will do an examination themselves. You can always appeal a denial from SS anyway and from what I understand, most people are turned down the first one to three times. I think it is usually a little easier to get approved for it when you have a cancer diagnosis though as opposed to a mental health issue or something. YOu are supposed to be considered disabled for 1 year + 1 day to qualify for disability and it is also predicated on how much has been paid in over the lifetime. My husband was just approved and the letter did say that you have to be disabled for 5 months before you can receive benefits, in which they conveniently established time of disability at 5 months ago. So, I am not sure exactly if that is state by state or federal determination but your dad should qualify. There are also many programs available that offer support. Check on your state website because some of them will go right down the line and tell you what all is available. Good Luck!

My husband also has no insurance and what I have learned (from other peoples experiences) is that everyone pretty much gets turned down for everything the first time. If your father has worked in his lifetime and paid into SS then he should be eligible for SSI or diability, based upon his diagnosis. SSI has income guidelines so one is not allowed to make over a certain amount and I believe disability requires you are going to be disabled for at least 1 year + 1 day. Where was your father diagnosed, at the hospital? They will have records of the diagnosis, or whoever diagnosed him will. You can talk to a social worker at the state or hospital and tell them that you NEED help and some direction so that your father can get the care he needs in order to treat his cancer. Anyone with any sense should be compassionate enough to help you. I do not have a lot of time right this minute, but if you can not get some assistance to get you on the right track to getting the needed care, please pm me and I will do whatever I can to help you. Good Luck!

Super fantastic news! I will keep my fingers crossed that this does not ever come back!!! I am so excited with you!!!

I am so sorry for the loss of your sister! My thoughts are with you! Flowergirlie

Well, we had to make a trip to the emergency room yesterday for profuse vomiting, nausea and lethargy with a twist of extreme anxiety. What a weekend this has been...It turns out his sodium level is dangerously low and it takes a long time to raise the levels because it could kill him...??? Also, the on-call doctor mentioned that in the PET results, they saw lesions in his back area (possible bone??? and our oncologist never mentioned this???) and ordered an x-ray for a second look. The x-ray showed nothing and my husband did the, "see, I told ya nothing's there routine." A new oncologist came to see him in the hospital and wanted to order an MRI and my husband refused it. He said his doctor is going to cure him and he doesn't need anyone else's "thoughts". : I feel frustrated because I think that since he (new oncologist) is there, it would behoove him (husband) to be open minded to what other opinion's are, given his prognosis. I am not sure if it matters if there are mets to other places if chemo is his only option anyway. Any thoughts on any of this??? I came home to rest for a little bit so rest I better do. More time off work and more pay I will not be getting and I do not know how I am supposed to keep everything afloat anymore.

I am sorry for your loss, Don! Thank you for sharing such precious thoughts and thank you for being such a supportive contribution to this community! FLowergirlie

I am so sorry for your loss! I think we grieve the loss some before it is even the time and are a *little* more prepared. My thoughts are with you! Flowergirlie

Congratulations on your new job and good news for your family! Thanks for sharing it so we have this chance to be happy with you! Flowergirlie

You are all AWESOME! I have received many suggestions that I wouldn't have thought of (and I am pretty clever!!! ) The support is also very appreciated! This morning I have realized that my poor husband is just in so much pain that he is having trouble seeing past the pain and remembering what the benefit is to fight it if he is going to keep feeling like this. And at the same time, he does not want to just roll over and let this take him. He asks me if this is how it is always going to be from now on, and I just don't know. I try to say yes, but fear that my yes's are not very convincing, even though I really want to mean them. I told him this morning, as he was telling me that I ruin everything and nothing I ever try to do goes right, that he has to stop saying and doing things that make me feel bad because ALL I want for him is to feel as good as he can. It didn't help much but I could tell he at least made a note of it in his mind. I am going to talk to the doctor about the brain scan because that is what I read the very most, that sclc moves to the brain quickly. The good thing is that I DO have places to go with the kids should this situation arise and I also have the resources to take care of myself, and the kids, should I need to. My in-laws are also amazing, we have a terrific relationship, they are supportive, caring and VERY understanding of what I am dealing with (since they have seen it firsthand), they are just far away. My mom and a few of my friends have also been amazing. I am smart and strong, independent and a firecracker when need be, so even as helpless as my cries out here are, with a little effort, I can power on through just about anything. I just really want my old hubby back and it is not that easy. And my old hubby just wants to be back and it makes him angry and scared that it isn't that easy and maybe not possible. And really, isn't that what everyone wants? All of you have said different things that have permanently affected me and triggered some thought about an approach or perspective or whatever that I hadn't thought of, and it is invaluable. Thank you to all! Flower

That worked for 3 weeks. It was actually an improved 3 weeks. He agreed that he needed the anti-depressants when I first finally had to tell him to keep taking them and why and then he concluded that his doctor didn't really want him taking anything (that's funny, the doctor prescribed them).

He is not usually like this. I am going to talk to his doctor about doing another brain scan. We had about 3 days this week that were fantastic and then a VERY dramatic change again. He will not take the anti-depressants or anti-anxiety anymore, because "he doesn't need them." I can send my kids to some friends of mine's house for a diversion but I hate to send them off because they already feel insecure. We are starting family counseling next week, minus my husband (because he doesn't need it) to see if that will offer any relief too.

I do not have help in town. His folks came up to help out and they left within 5 days because he was so mean and they couldn't take it. I try so hard to be strong for the whole family but I have feelings too! I know he is angry about cancer, we are all angry about his cancer, and scared! He is facing the fight of his life and we all stand by his side through the emotions and weakness and all the different elements that come along. We had plans of growing old together and travelling and living in the mountains someday. Once in a while he remembers how well we have always gotten along and the rest of the time he treats me like I am worthless. There are no guarantees in life FOR ANYONE. If we could all understand that every day is a day to be thankful for and make the most out of because we do not know what tomorrow will bring, I think everyone would be a little happier. My husband does not see that.