I need tough advice

[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!

[tnmynatt]

It's a tough spot to be in. I don't know enough about his situation to really be able to help you.

My husband decided he wanted to live as long as possible for our girls. He continued chemo when I believe I would have stopped.

Your husband may very well know more than you think. He needs to decide what he wants to do...continue trying to live every day possible or go for some "quality."

It's an awful position to be in...I understand your dilemma. I will be praying for you to receive guidance and to have peace and focus during this difficult time. I still believe in miracles and will pray for a miracle for your husband. Take care.

[Ry]

I am not sure why the oncologist has not told him directly what is going on? For me, the doctors told us both together what the situation was (and it was not good - he was told to get his affairs in order etc.)- so I was never in a position of knowing more than he did. I guess I am saying that you should never have been put in the position you are in and the doctor should tell him what the prognosis is-- he needs all the information so he can decide what he wants to do. Several members here have gotten to the point where they have just had enough and elected to live as long as they could without treatment. He needs to know, either from the onc or from you.

[Bev'sSister]

I do not think you should tell him that there is no cure. My sister has smlc-ext.also. She is not having the problems your husband is having, but I firmly believe in miracles. I have known people who find out that they are going to die or the Dr. tells them they have only so long to live, and sure enough they die almost within a month. I wonder if the mind plays a big part in this. If he wants to fight it then don't take away his hope. I know that I am sounding insensitive and I don't mean to, because only you can make this decision. My sister is doing quite well and she doesn't want to hear anything negative. Anyway, I am praying that you will be able to get through this, no matter what you decide. It has to be tremendously hard on you. Keep us posted.

[Flowergirlie]

It is not about telling him that he is going to die within a year or with the intention of being negative but to give him the opportunity to make an educated decision of his own as to whether the suffering is worth it or not based upon the possible benefits. I have told him that I think he can beat this and he continues to go on with the treatment but the truth of the matter is, is it at some point irresponsible for him to not have the knowledge when he is suffering DEEPLY and not sure if he can even survive another round of chemo? His tumors have shrunk and we have one more shot to reduce a mass that is 10x13 cm. I want him to live and grow old with me and beat cancer but I do not want him to be so miserable and continue doing rounds and rounds of treatment if it is only to keep him around and he has no quality of life.

[EastCoastLadi]

Melinda,

My husband knows, but he's sick and tired of people ( meaning me ) who keep on reminding him. So what we've tried to do is look at this as a chronic and ongoing illness, that he will have to always be in some form of treatment, whether it be chemo, or radiation of some sort.

I also think what really helps is that my husbands' oncologist is a no BS type of person, he tells it to him straight and my husband respects him for it. He doesn't hide things and in fact even told my husband the last time he saw him, that he honestly thought he wouldn't be alive right now with what he has. ( hey, told you he was a no BS guy). Even though my husband may not want to understand it, he knows, it doesn't mean that he has to think like a terminally ill person.

Hey, my husband talks to me about buying another house, moving from where we are at. Planning on going to Europe in a couple of years. Planning next Christmas. How when he gets back to work. When I hear him talk like this, what can I say or not say? I just listen to him, he has a great attitude, I think it's what has kept him going.

Does it tear me apart, yes, I know the envitable, like his dr. and I know he knows, but he doesn't want to think about that, but rather, think about living. I can't fault him for that.

He hates all the treatment he has to go thru, he hates the fact that he can't take a break, I think he's going to have a nervous breakdown. He's the consumate entertainer around everyone, but me, of course, I tell him, he doesn't need to entertain everyone and make them feel happy, when he himself feels so lousy.

The way I would like to see and believe that the goal is to prolong his life, with some quality, without pain and suffering. We don't use the word "cure", we never have since knowing about ext sclc, it isn't an option.

Oh Melinda, you know I know, I too hate having to be the strong one, the realist, and yes the pestimistic one. I hate having to do everything, I hate that my once "marriage" with my husband has now become, how do I define it...."caregiver" - buddy.....nag...almost like 2 very old crabby people.

I hope you can have at least a somewhat peaceful and not so chaotic holiday. I'm here if you need me...

Grace

[yellowbow]

I know where you are at. Today when John went down in shower. He told me it just wasn't worth it. I can't do anything. But I don't want to let go! We had high hopes but ,now it is all falling apart. I'm praying. Best to you and DH

[Welthy]

Flowergirlie,

Grace has just said the same thing I'd say, but being a motor mouth I'll toss in a few words too.

Our oncologist was also very up front with us and told Tony first off that there would be no cure for him. Tony holds the reins in this process and we all follow his lead. He wants to fight and that is that.

I can tell you love your husband very much because you are so clearly torn up over this. You are in a really hard place, but you too must follow his lead and go with his flow. I'm hoping that your Doctors have given him enough cues during his testing, diagnosis, and treatment that this has a poor prognosis. I don't want you to become the "bad guy" by telling him outright. Geez -- this is a bear of a situation to be in and I'm so sorry for you, but I can't help but think he probably knows the score.

At this point I'm guessing that my husband will fight to the end and never give up the hope of a "magic bullet" coming down the pipeline to save him. He also talks about next Christmas and other "long-term" talk. That's fine by me. He also knows he will be on chemo the rest of his life, but that it's his decision to take the chemo or not.

I think it really depends on your Hubby's state of mind. I know he has had ups and downs with the treatment, but is he willing to continue? Maybe you can gently approach it from that angle. I'm sure that he will still have some good time ahead if he pushes through the treatments. I thought Tony was leaving me last May and he's doing pretty well right now, albeit riddled with cancer. It seems to be a trade-off, either you are feeling crappy while fighting and on chemo or it's growing and you feel good. There are few happy endings with the late-stage lung cancers, but there can still be good times together.

I hope you can find some peace over this issue. We are here for you and really understand.

Welthy

[Muriel]

I'm afraid that I'm going to sound really harsh and I don't mean to do that. To me, I think your husband has the right to know what his condition is and, thus, to be able to make an informed decision re: treatment. And, I think that he deserves to know that the end may be sooner rather than later. Not that it will be, but his time is somewhat limited.

Muriel

[beat it]

Flowergirlie,

Your compasion and wisdom in this last post just shouts from the tree tops how strong you are. Your husband is very blessed to have you.

Honesty is the best policy. Honesty never fails. It can hurt at times and it can be hard to hear. I would want my husband if I were in the reverse situation to honor the vows we took and be honest about it. I wouldnt want to keep anything from him either.

Remember Doctors are humans, they cant predict the future any more that you can. Many have been told here on this site they would be gone but arent. What you may have been told about longevity is nothing more than an educated guess either way, short term or long.

Be honest with him, dont regret not telling him later on and having him find out as well. Honesty and trust build they dont tear down.

Beat it!!

[RandyW]

Ya got me so sad but that is ok I can deal with it right now. Been sad for a while. Ican not any words a=of asdvice but can say prayers for you folks.

My own experience is pretty well documented in the posts here back in Jan of this year. Deb and I had the when does it end talk. We did not know exactly how bad it was until it was too late. Coulda shoulda woulda is not woirking for me. No regrets. One nite while sitting oin the living room about 3 weeks befofre she passed we talked about what would happen. She said I am tired of all this but I will not give up on it. I will not look for the light but if I see it I will go to it. I will not turn around to look. It has to be in front of me for me to go forward to the light. Little did I realize under the cover of darkness, she would see the light.

You are right about the cure. there is none right now. Doctors are working with what they can to get to a chronic stage, Like diabetes. You live with it, don't die from it. This is a discussion that only you guys can have and make time for. You ahve to tell him the facts I think in order to let him have some say and maintain some dignity in his care and life. I also admire how you are handling this. It takes a lot of courage to go down this road and make these decisions.

Many prayers and suport for your family during this difficult time.

[Don Wood]

I believe your husband should know the facts, so he can decide what he wants to do. That decision is ultimately the patient's to make. No one can set a definite time line for an individual, not even the onc. But I go with looking at it as a chronic disease and go from there. I believe in making whatever time there is a quality time, as best as one can. Don

[Suzie Q]

I think you already know in your heart the answer to this dilemma.

Do consult with his oncologist about this. Perhaps the two of you can give him the full scope of his disease together.

I agree, he has a right to know that a cure is truly unlikely, and at this point, he may be on chemo for the remaining days. Therefore, he has to decide how he wishes to spend those days. Of course, if he has previously stated that he does NOT want to know, then you respect his wishes.

Keeping you in my prayers, Flowergirlie.

Karen

[Frank Lamb]

I am pretty much in the same boat now however I CHOOSE NOT TO torture my remaining time with chemo.

Honesty is the best policy.

[J.C.]

Flowergirlie,

I will put the question in reverse.

If you would be the sick one,

would you like to know the real situation?

Your husband has a right and a will to

be respected, he can make his own decisions

as far as more treatment is concerned.

You could see a stronger fight when he

knows.

Jackie

[Chris Norfolk]

Hi

If it helps, even though he didnt always like what he heard, my Dad wanted to know it all - he wanted to at least be in control of that.

My thoughts are with you

Chris

[marym]

Hi,

I believe that your husband knows the truth. It is not curable, but I do believe in miracles. But having said that, I think the real discussion is that you both can accept whatever decison he makes regarding his care. He may be doing this for you. He needs tofeel it is okay to do what is best for him.

I'm really sorry that the treatment he is receiving is so difficult for him. I have had several differnt chemos and am, no on Tarceva and have not had anything like what you describe. I haven't spent more than maybe 2 days in bed feeling ill in the 18 months since I was diagnosed. Can't the doctors finde anything to alleviate his pain?

In spite of the difficult time you are both being chaallenged with, I do wish you peace and contentment for the Holidays.

Mary

[cindi o'h]

Thankfully, I was in charge of hearing it all straight from the horse's mouth. Doctor said we could do another round and it may or may not make a difference in survival. It was up to me to decide. But, he said, don't come back to me if the cancer returns and say, "Gee, *what if* we would have done that last round..."

I was so wiped out, that physically and all other ways I knew that if I had anymore chemo that they would have to bury me. That is how I *felt*. The doctor could not feel how I was feeling. Only I had that most intimate awareness. I was the one who had to decide. I decided that No, I had enough. That was almost 4 years ago.

Nobody else could have made that decision for me. It had to be mine, I think.

good luck.

Cindi o'h

[Barbara Lea]

Flowergirlie,

I feel that I could almost have written your post. I am in the same position as you as a caregiver. My husband is not quite as ill as yours at the moment. He had 2 bottles of fluid removed from a peluraal effusion last week. I called the dr. office for results of the biopsy, which they faxed to my office. Unfortunately the fluid has tested positive for malignancy. I am crushed because Jim has already let me and the dr. know that he will not endure anymore treament. I have kept this news to myself for a few days, as his next visit isn't until 1/3. I would really like to keep quiet until at least after Christmas. He had a lobectomy last year on 12/19, so that Christmas was a downer, would really like this one to be better, especially if..... Plus, his sister who is 45 and has been a widow for 20 years got engaged the other day and I really don't want to rain on her parade right now. Are we being selfish or strong??? I don't know. I do know that once he knows and makes his final decision I will cherish every day like a gift. Take care of yourself and stay strong. Barbara Lea

[ma's kid]

Flowergirlie..

My heart just breaks for you two..I, too, believe in miracles but at the same time...there should be discussion about quality versus quantity..

Blessings,

Libby

[Tracey Huguley]

You are an angel....for being there for your husband and family and wanting the best for him....

Remember that....

You are in my prayers and thoughts....

Love and hugs,

Tracey Huguley

[kreed70]

Flowergirlie~

I am so sorry for ALL of this!

My 2 cents is that patients should be told their situation BUT I also think that sometimes it can hurt if the "give up" when they think there is no hope.

You are in my prayers!

Kelly

[Maryanne]

My heart goes out to you also. I look at your avitar and see what a lovely couple you both are.

Your last post seems like you may have made up your mind and that he should be told. Then he will decide if he wants to continue the treatments or just stop them and spend all the quality time he has left together with you, his love.

Whatever decision you make we here will support you. You are not alone as we are always here to help you through this.

I am so sorry for all this uncertainty. That is the part that is eating you up. Perhaps if you get it out in the open you will feel a ton of weight being lifted off those strong shoulders of yours. Carrying something like that around is not good for your health either. Your mental and physically being is so full of tention. Your stomachE is constantly in knots. You do have to make a decision and soon. I worry about you also.

He may decide to keep on with the treatments or may not but it will be his decision.

I also hope you are on some kind of medicine to help you cope. There is medication out there that can help you.

I am sending heartfelt prayers to you for peace of mind.

Remember whatever you decide we are always here, 24/7

Bless you, you are an angel to him.

Maryanne

[ernrol]

Flowergirl,

I was told that there was no cure for my cancer. I was told that I had 16 to 18 months. Next month will be my 18th month and I am going to try and run a half marathon. No doctor or anyone else should tell a patient how long he thinks he will live, because it is just that his thoughts or opinion.

There are many people that have beaten their doctor’s predictions. I do think your husband should know exactly what his cancer is so that he can make his own plans to fight it. There is new treatment every day. There may or may not be a cure on the horizon. There is no cure for some type of diabetes, but people live long lives with it. I don’t know how you ended up in the position of knowing things that he does not. I would make sure he knows everything he can just look on this web site to find people with his type of cancer that are having a longer life than some doctors would forecast. It’s important to have a doctor that thinks he can treat you with some success. My oncologist is that kind of doctor. The one that gave me the 18 months is my pulmonary doctor who I would have dropped except my oncologist said that he was very good and I don’t see him that often. I do think that he has changed his mind about the 18 month.

I think if your husband knows the whole story and is showed that there are people out here surviving he may start fighting harder to beat it It’s never too late for a second opinion.

Let's pray for some improvement. Keep us posted.

Stay positive,

Ernie

[Judy-OK]

If your husband is truly feeling as bad as your posts have indicated then I can not help but think that he DOES have a good idea about what is happening to him. People handle the overload of information in different ways. My neighbor wanted to know everything about her cancer and her treatment. I, on the other hand, told my doctors I wanted the truth and in as few words as possible. What I needed was to know that they were going to do all that they could. Don't get me wrong, my head is not buried in the sand and I do know what is going on. Stay by his side and try to abide by his wishes. Bless you and all the caregivers of the world. Have a good holiday season.