Looking for guidance

[Guest fight4dan]

I just wanted to give an update. My husband countinues to remain in Buffalo with his father. The days are long and my husband and MIL are at the hospital from morning until night. I guess my FIL was asleep for 3 hours today and they stayed at the hospital by his bedside. My husband stated that his mother would feel guilty if she left. My husband and MIL are currently not working. From what I have been told, my FIL is eating less everyday and is becomming only weaker. My husband wrote a letter to the doctor that hopefully he should recieve in the AM, demanding that my FIL be moved to Roswell Park Cancer Institute. I faxed all of your wonderful comments, suggestions and encouragement to my husband at the hospital today. My husband was pleased and this gave him the push to demand that his father be moved. However my husband said, "I just don't want to have false hope in all of this". I just don't know how to act anymore. Should I be preparing myself for the worst. I don't know how to feel or what to say to my husband or MIL. This is a father and a husband that may very well be dying. How should I act and how do I tell my husband that he needs to somehow move on with his life. I know that he has guilt, due to the fact that we live in san Diego and my FIL is in Buffalo. My husband wants me to go on stress leave (workers comp) so that I am acessible to the family during this time or crisis. I was trying to explain that this type of decision may be premature and he was having a hard time understanding this. I am sorry to vent to you all and ramble on, perhaps I am in the wrong message board. Tell me if I should be expressing these concerns elsewhere. Thank you all.

[richinsdakota]

Probly others here will be along to better address your concerns; but I do know you can only take it one day at a time...and can only act on the information you have to date. Try not to feel u have to solve it all right now, ur only one person, learning along with everyone else. You can only do what you do normally, be yourself and get thru the bumpy going best u can. Take care...Rich B.

[marym]

I sympathize with your situation - and truly don't know what I would do. But, you need a more difinitive diagnosis. Although they cannot cure the cancer, it doesn't mean he can't live with the cancer for some time.

You might be more needed later in the disease progression, so that is something to think about.

Mary

[MsC1210]

Although I have no answers to your questions I did want to say hello.

This is such a tough situation. I have been following your and your husbands posts since you joined us here and it is just such a sad situation for your FIl with the pain issues etc.

I am very glad that your husband is looking to have him moved to a cancer center. I think that is absolutely the best thing right now. Let them re-evaluate the situation and get the pain in control and a comprehensive treatment plan in place. Do not give up hope.

My prayers and thoughts are with you all

Chris

[Linda661]

First, I hadn't had the chance to welcome you to this community yet.....WELCOME!

As others have said already, it is very important to understand exactly what kind of LC your FIL has, small cell or non-small cell (I couldn't find, or I missed, where you mentioned that) -- treatments vary depending on what kind it is. Stage IV simply means that the LC has shown up in areas of the body outside of the lung (still treatable). Sounds like a good plan to be moving to a cancer center -- they will also know how to effectively deal with the blood clot and any other issues happening right now as a result of your FIL's condition.

Once a treatment plan can be established, it's up to your FIL to decide whether he wants to undergo treatment or accept pallative (symptom management for comfort) care. The family's "job" (or role) becomes one of support and advocacy for your FIL's decision. It's a difficult job, to be certain, but do-able -- understanding everything you can about the diagnosis, lab work, doctor qualifications, treatment plan, medications, where to get support for FIL (and you), potential hitches along the way (and what can be done about them), etc. is important and will help reduce your stress level with this as well -- at least it did with me and I was literally my mom's only family support in her journey with this. Along with emotional support, we can help you with the education part: ask lots of questions!!!!

It's very hard for your family to know what you are looking at without the understanding and even then, it's still hard. Your FIL's weakness and decrease in eating could be from the morphine or other meds....or not -- family education will help you interact with the doctors and support your FIL.

A word on false hope: this dx is a roller coaster and unpredictable. Things can look bad and then turn around.....things can look good and then a "winger" shows up. Then again, after a battle or two, things can get calm for years. None of us can predict or know tomorrow for each other for it really is an individual journey. Live for today and prepare for tomorrow, whatever tomorrow brings.

The hope I found in this was to be able to keep real doors open for my mom as long as possible; to be sure she got the best treatment she could; to be sure her needs, concerns and symptoms weren't dismissed due to her age or any other false assumption others tried to have about her; to be sure the world didn't just throw more drugs into her to "patch up an issue" when something else needed to be done to alleviate the problem -- I couldn't guarantee her future, but I could guarantee she received the best she could get along the way.

Hope this helps somehow,

Linda

[Don Wood]

Don't make any decisions on emotion -- stay practical. Your FIL isn't the only one whose life is to be considered here. If your husband and MIL are there, that's enough for now.

My wife and I have been battling her lung cancer now for almost 4 years. Our slogan is "Expect the worst, but hope for the best." It works for us. Don

[Carleen]

Welcome, I'm sorry you and your family are going through this cancer nightmare.

Although my husband didn't have SCLC, he did have Atypical Carcinoid LC with small cell features which is treated just like SCLC only it doesn't react as well to chemo.

I agree 100% with Don's comment, in fact he wrote exactly what I was going to say... Hope for the best, but prepare for the worst.

That being said, I'd like to help you all I can in your search for direction. But I caution that my view comes from someone whose husband and true love recently passed away.

To me, I disagree with others who are being so optimistic. Your FIL does have a grave illness. Athough it is one that responds well to chemo, from what I've read from your posts there are a few doctors unwilling to even try chemo because your FIL's overall condition may be too weak for it. Chemo is a great reason to hope, but it is very difficult on the body. I hope that he is able to tolerate chemo, and possibly they could consider starting with a low dose single agent chemo until his strength builds back up enough for more aggressive. My uncle did that, he was given 2 weeks to live because of his overall state, but they gave him low dose Topetecan and as his cancer shrank he was able to tolerate higher doses and now they give him to the end of the year. But then again, doctors don't really know dates and times.

What scares me about your FIL's condition is that he is not eating, and getting weaker. There can be a couple of causes for this. Usually when on chemo, a person stops eating because of nausea or bad tastes, but your FIL hasn't had treatment yet. It also could be from the medication, he is just too sleepy to eat and the medication is making him weak and drowsy. But also, loss of appetite is also one of the things that happens as the body starts to shut down during the dying process. Sleeping more can also be caused by higher doses of pain medication, but is also one of the things that happens close to the end. There is no way of knowing exactly what is going on with him for sure; no one will ever know when our time is up.

I guess if your husband and MIL wouldn't object, I'd frankly ask your FIL's oncologist what is going on with him in their opinion. Get all the information before making a decision.

I know that your job is important, especially if your husband isn't working. You need the income and have to protect your family. But that being said, the most important thing in life is the people we love. Money will always come and go, but love is eternal. It sounds like your husband really is struggling and needs/wants your support. Your FIL very well may be in the dying process. He may not. You have to ask yourself what would you regret more... Taking time off of work prematurely and having your FIL live and you have to go back and catch up work, be short on pay, and possibly have to take off again at a later date; or would you really regret more if you didn't take off and your FIL passed and you were not there to be supportive to your husband MIL and FIL.

I say this because my personal policy on life with my husband was that I never wanted to regret anything when it came to him. I may be financially ruined now that he is gone, but I regret none of it, I wouldn't have denied him anything I loved him that much. I would do it all the same, I'd never leave his side, I'd still have missed all the work I did, have bought him all the toys he loved, and put him first in every action thought and deed.

I guess only you can answer the question as to what to do. Look in your heart.

[mitzu]

I agree with Carleen 100%.

[ursol]

Me too..Agree with Carleen 100%.

Lilly