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Hi, I hope I am on the right message board


Terriod

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Hi Everyone,

I don't know if I am on the right message board or not. So if after you read this and you think that a different message board if better for me, please let me know.

Well this is my story. After about a month an a half of feeling dizzy and weak, my husband finally got a doctor to tell him what was going on. On Dec. 12th of this year we were told that he had Lung Cancer that had spread to his brain. He went downhill fast. Our daughter was getting married on Dec. 26th and he didnt' want any treatments until after the wedding. But the doctor told him that he would not make it to the wedding if he didnt' start radiation. So he did. He was barely able to make the wedding. He walked her down and that was it. He just could not handle anymore, so we went home. He had 11 radiation treatments and they have not done any good. Two doctors told us that they did not feel he was strong enough to undergo anymore treatments. We are now with Hospice. I can't believe this is happening so fast. I am still trying to come to grips with it. I guess I am just looking for support. I find it hard to go and talk to a support group, I usually will just start crying. Plus when I am on the computer my husband doesn't always know what I am doing. It has to be hard for him to see me talking about him. So I try not to do that in front of him. They have said that he has anywhere from 3 weeks to 6 months. It all depends on how fast it spreads. During the radiation it has still spread in his head. He gets confused alot, and is just now starting to experience pain. The other day he was throwing up all day and felt terrible. But then yesterday he was fine. They gave him the patch behind his ear to help with the dizziness. So far that seems to be working.

We have been married for 20 years, he is my best friend and I really don't know how to live without him. I know I have to. But it is going to be so hard. Well thanks for listening. I am looking basically for what to expect with this, how will he act, will he wake up one day and not know who I am? What can you tell me about what you have experienced. If you can talk about it. My heart goes out to each one of you, because God knows I know your pain. Thanks for any information you can give me, Terri

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Terri,

Yes, you've come to the right place. There are a lot of folks here who've walked the path you're on and I know they will be sharing their experiences with you.

I'm sorry you had to seek us out, but very glad you found us. No matter what the future holds for you and your Dad, there is a wealth of information and careing here.

Dean

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Oh Terri~

My heart just breaks for you. I welcome you to the wives club no one wants to belong to. I hope you will come here and talk and let us know how you and your husband are doing.

I was struck by your comment of not wanting to talk in front of your husband. I remember those days so well. The shock of the diagnosis. Thank God for cell phones, I would go to the car and call people and just sob. Sometimes I couldn't even get it out, scared the hell out of people, I'd be on the phone crying as soon as I heard their voice. But I digress, back to you. Hospice will help you immensely. They are people that have gone through what you are dealing with and they will help you afterwards also.

I know it's hard. We're here when you need us.

Rochelle

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Terri,

Am so sorry for the state your husband's life is in right now but try and think positive. There are times when one does get better when in hospice. My husband is at a very low point right now and his last hope before he enters into hospice is a medicine named Iressa. I don't think this would work for your spouse beings he has mets to the brain and they cannot address that issue with whole head radiation because I do not believe Iressa addresses anything in the brain.

My husband to is very sick, sounds just like yours but right now I am choosing to try and keep him out of hospice only because I want to see if the Iressa can stop his cancer in the liver and the colon.

Some of us on here talked on January 1 regarding End Of Life Issues and if that is what you are asking in your post then go under the section Family Members/Caregivers and find the post by Sammy titled End of Life Issues. If that is not what you are asking then I would suggest you don't go there at this time.

Didn't hospice give you a booklet regarding cancer and hospice. Did that not help. I know actually, nothing helps, this is very hard going through and very hard watching. It takes your insides and turns them upside down. Just know that I am with you for from what you say, our loved ones are going down that same road right now. My husband is very weak, nauseated, can't eat, loosing weight everyday, sleeps a lot during the day and now keeping somewhat antsy at night when I try and catch a little sleep. Sometimes I look in on his while he is sleeping to see if he is still with me. If you like at anytime you can PM me for I will be only to happy to help you through these times.

This is a great sight to help us get through this.

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Terri,

You have definately come to the right place. I am so sorry that this is happening to you and your family. Treasure every day you have with your husband. Talk about everything you have always wanted to talk about with him, he may want to talk more than you realize. Dont be afraid to talk about things he may feel the need to. I've been there with my dad so I know the devaststion and helplessness your family is feeling.. Just know we are here to offer support it will help you knowing that there are people that know what you are going through. God Bless you and your family.....

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Terri:

Welcome to our group. I am sorry you have the need to be here, but you are in the right place. As you see we are over 800 strong. Our long term goal is to gain much needed recognition for lung cancer, for better treatment progams and early detection.

As you see, in my signature, I am now a 2-1/2 year survivor. I started at stage I and am now Stage IV because of recurrence and metasteses to my lymphatic system and liver. I am now in my 4th battle with lung cancer. You now may be asking the question, "Why has Dave lived so long and my husband is in the battle for his life?" This is a question I have dealt with many times in the last 2-1/2 years. It seems unfair, but there is nothing fair with lung cancer. I unfortunately, do not have an answer to the question.

Please feel free to keep us updated. Several key people have answered your post. These people are very inspirational. Even though Ry says that she has many crying spells, she has a good sense of humor. Ry is very compassionate and really cares for all of us who are fighting lung cancer. Norme is a jewel. With all the problems her husband is having, she still finds the time to contribute to this message board. Cathy lost her father to lung cancer a few months ago. Cathy is very courageous about getting on here and offering support, when she may well need the support herself.

Terri, you may use this board to rant and rave, if you wish. We understand because we have all been there. By all means ask questions, because many of us have experienced what your husband is going through. I haven't had brain mets, yet. One of my best friends from our support group at the University of Wisconsin, was just diagnosed with brain mets. It is the first time, in the last 2 years that we have known each other, that he has shown any pessimissum towards his lung cancer. He is at the top of my prayer list, which is a very long list.

Again welcome to our group and our family.

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Terri, yes, you are at the right place, and welcome. Sorry you and your spouse are having to go through this. I, like you, don't know how I could live without my spouse, but may have to. My prayers are with you. Keep posting and sharing, and we will be here to support you. Don

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I just want to thank you guys for making me feel so welcome. I was brought to tears with the warmth from you guys. This is by far the hardest thing I have every had to face.

Jim (my husband), is in good spirits most of the time. He only gets teary eyed when he thinks of me. He is always telling people to take care of me. He has always put me first above anything or anyone. This is no exception. He tries to empty the portapotti while walking with his walker just to help me. :lol: NOW, if I could only make him understand that THAT is NOT helping me. :lol: He is such a sweet loveable, cranky man. That is what our whole family calls him. For the most part he is very alert and understands everything, just gets confused with times. He forgets stuff and repeats himself alot. He doesn't like to sleep nights. We have been averaging 2 hours a night. He has admitted to being scared to sleep. He is afraid he will not wake up. I can only imagine what he must be feeling. In so many ways I think he has been stronger than me.

I am so sorry to hear your stories, this is so unfair. Why do people have to suffer like this. I was told because it teaches you compassion. Well this group sure seems compasionate enough. I think we all deserve a break.

Thank you again, I look forward to getting to know you. Terri

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Hi Terri,

I'm chimming in here a little late, but wanted to welcome you to the group. I'm sorry you have to be here. You're right, it isn't fair, and the road ahead is full of twists and turns and ups and downs, sometimes, it feels like, too much for us to bear. We understand how you feel, and when you need us- we will all be here for you. Stay, we'd like to get to know you too! And keep us posted and your family, your husband, will be in my prayers.

God Bless.

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Hi Terri,

Sorry I can't answer any of your questions but YES you are in the right place. There are a lot of caring people here and whatever your question or problem is you will find someone who has "been there, done that." Come here just to talk or vent your frustration or just to ask questions. we are here for you. I will keep ypou and the family in my prayers.

Bruce[/b]

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Hi Terri,

Sorry you have to be here, but you have found the right place to be. It is so hard to have this disease and it is even harder on a caregiver. Whether it is a wife, husband, mother or father, etc.. We are sll survivors and so is your husband,. Just stay positive, never give up and believe the Lord has healed us. I will add you and your husband to my prayers and also praying for a cure for this disease. Please come here often, you will find a tremendous amount of support here...

Warm hugs and God Bless

Karen

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You have had so much to deal with so quickly. I am sure it is overwhelming. I'm glad you are found this site... no one should try to face all of this alone. I suppose it sounds weak to congratulate you on your daughter's wedding - but congratulations on the recent happy event in your life. It is difficult to focus on non-cancer issues when surrounded by this beast -- but try to take care of yourself and keep your own energy and health up during this difficult time. Remember that we are here.

Lisa

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Terri, sorry to be greeting you a bit late, but welcome to the family. I agree with all of mi amigos have said in their posts. But what Cathy said really struck a chord with me. Your husband may want to talk more than you think.

My dad passed on Dec. 24th and the thing that was of such a comfort to my mom is that they talked ALOT. About what his wishes were, about what he wanted us to do-about what his beliefs were.

I am grateful to have had a couple of those chats with Daddy, myself. You see, he had such a strong faith in God, and he really felt that he would be alright, and sharing his beliefs with us ended up being a HUGE HELP as we try to 'get on' with life.

At first, both of my parents wanted to talk about the 'if he dies' question, but neither would bring it up, in fear of upsetting the other. Then one day, they just started to talk about it. And they were both so glad that they could open the lines of communication. But let me tell you that, until the moment he died, my father had hope. Hope that a clinical trial would accept him and that it just might be the answer for him-even if it just got him more time. So, hope is very important.

So, come here whenever you need to. As the wise DaveG said, rant, cry, ask questions, pound your keyboard-we can take it. We're here for you, and you and your husband Jim are in my thoughts and prayers. Take care, Deb

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Terri,

I've been reading lately that I am not the only person afraid to go to sleep for fear of not waking up. This feeling was strongest right after surgery, but I still have some relapses to it. During the "bad times", I reach over to my night stand and take out two little bottles, one of Ambien, one of Xanax (no, no alcohol hidden in there).. I take one of each, take a few deep breaths (because the Xanax helps loosen up that tight feeling in my chest) and can FINALLY 'relax' and sleep.

Have your father talk to his doctor about some anxiety medication (and talk to YOUR doctor, as well - you need to take care of yourself, too!).

Welcome to the family, we're pretty functional for the extreme dysfunction that has brought us all together. Drop in for support, cheerleaders, back patters, pep talks, an occassional pity party, whatever you need, it's pretty much a 24/7 deal!

Take care,

Becky

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Terri:

Glad you found this site -- has been a godsend to me! My family is very fortunate in the sense that we have openly talked about everything. My dad wants to know what he has facing him and is battling as much as he can. I like to describe his illness as a rollercoaster ride. We started on the "down" side and have had many ups and downs since then. My parents also have a very close relationship. My mother could never work outside the home because of his military career. We travelled all the time and that made them so very close because they only had each other -- they have been married 46 years! I am enjoying each day with my dad and some are better than others. Very recently his cancer has spread to his brain but he's not having any problems with that yet. I remember being so scared and not knowing where to turn until I found this site. These are truly wonderful, brave people. Prayers to you and your family.

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Dear Terri,

I didn't reply when I first read your post, I couldn't, I was just too overcome. This is such a hellish thing we are all going through isn't it! You must in total shock and terrified as it has happened so quickly.

My husband and I have been so close for so many years and the thought of losing him simply kills me, so I know how you must be feeling about your husband. Please know my thoughts and prayers are on their way to you both.

Paddy

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  • 1 month later...

Terri

I am also replying late to your message. I am sorry for that, but I was just not able to do it when I first read it. I am the patient and not the caregiver in my situation. I was dxed about a 6 weeks ago.

Someone advised you to talk with your husband. I second that. I want to talk to mine, and he doesn't really want to do it. I think it scares him and hurts him.

However, your husband may want to talk and just be afraid, for your sake to bring up some things that he needs or wants to talk about. I don't know, but maybe he does want to talk.

ALso, pls know in your heart, mind and soul that your husband doens't want you to be going through any of this. I am sure he hurts, not only from the horrible disease but from the pain he knows he may be causing you and your daughter. Just love him; that's all he wants and needs is your love and acceptance.

Elaine

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Terri

I also read your other post about your husband and daughter. It is understandable that you are angry with your daughter right now who seems to have run away and is not helping you with the care of her father.

She is probably so frightened right now. ANy problems she may have had in the past could rear again with the news of what her father faces. She is vulnerable and human. We humans don't always do what we know we should do.

When my father was ill the first time when I was about 17, I couldn't face it and didn't help my step mom like I should have. It was not that I didn't love him or care for him. I was just too frightened at the thought of losing him. Luckily he recovered and lived another 20 plus years and in the end I was able to care for him, not full time like I wish, but I lived three hours away, but I was able to be with him as much as possible.

Your daugher is probably afraid and stressed, too. Just as you are. I hope you can talk to your husband's social worker and they can find someone to help you, your daughter and your husband in the very near future.

I know for me it is so hard to ask for help, but you owe it to all of you to ask for help now.

I am keeping you all in my thoughts

Elaine

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