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I'm new and a complete mess


louise

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:shock: My special significant other person after 2 bouts of pneumonia and reasurrances that it was nothing, was diagnosed with a huge small cell tumor on may 1st 2003. I don't remember the next two weeks much other than being pretty hysterical and missing work. The remainder of the time i've just been doing my best to put one foot in front of the other and plug along trying to get thru this. They saw some cancer on his liver from the cat scan of his chest and did full body scans of bone and body, then brain. He told them he didn't want to know the results good or bad since he is feeling real good it didn't matter to him where the cancer was. His oncologist said if it was bad news he treatment would be the same. I am down to crying about 7 or 8 times a day ... which is much less. I'm a lot better when i am at work.. it starts when i leave the building to go home. I also have to be okay when I am around him, as he is doing so

WELL with this. He tells me don't be afraid, he has good feelings about this, he's going to be fine. And he is fine from all signs so far. He hasn't had a bit of nausea, no sore mouth, very little as far as fatigue, no weight loss, actually weight gain, a really great appetite. All signs say his tumor is shrinking because his breathing has improved very greatly. He just finished his third round of vp16 and platinol. They are going to scan again and then do 3 more rounds of the same chemo. He is jet skiing, mowing the grass, doing things within reason, but claims he feels better now than he did a year ago. Which could very well be. I'm trying to appreciate every single minute i'm with him. It's hard not to try and smother him. It's hard not to try and think of that stupid aerosmith song... i don't wanna fall asleep cuz i don't want to miss a thing... I"m having such an awful time with this. I keep thinking to myself he has to be that one statistic that makes it, there's no other thing i'll accept or I won't survive either.

He retired this year and got sick right afterwards. I am soooooooooo angry. How on earth could this have happened? I"m a nurse and have been for 20 years. I wish i didn't know a thing. I'm tired of crying. It is better than it was May 1. But it sure is the most miserable hateful experience.

I have such morbid thoughts. The other day I had to reef the wheel of my 4 wheel drive, it's one of those tippy varieties.. and i could feel it rocking back an forth... and quickly a thought went thru my head that i hoped i rolled it ... to avoid having to go thru losing him if that's what it ended up being. Then i was mad at myself because he thinks everybody has him already dead. I can't deal with this.

am i nuts?

Louise

tears streaming down my face while typing

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Hey Louise.

You found a great message board for the kind of support it looks like you REALLY need.

No, you are not nuts Louise, but it sounds like you ARE one of those who has your significant other with one foot in the grave already. Calm down, and take some cues from him; he sounds like he has a very positive attitude, along with a strong will to beat this cursed disease. And it is beatable. With new treatments and clinical studies arriving almost daily, the odds of success, and even complete remission have never been better. Before you do go nuts, however, take some time (and it will take time) to read through the whole message board - even the archived stuff, to see how many truely wonderful success stories of survival are out there. You will find a great deal of them. The "Good News" forum, and the "Inspiration" forum" contain a lot of good reading. There are survival stories of a few months, to 13 years, to 26 years (that's me). There are stories of people surviving two and even three surgeries, and even more people, like Tiny, who are reporting "empty headed" CT scan results.

Louise, you NEED to be strong in order to support the one you love. It sounds like you have a bit of time before he will be needing your strength, so pull yourself together, roll up your sleeves, pull up your socks, batten down the hatches girl and get yourself ready. We'll help you. Take care,

David P.

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I am new at this situation myself and I can relate to all your feelings. I am just going through lung cancer surgery with my husband now. He had no symptoms and his tumor was found after I scheduled him for his yearly physicals. The feelings of frustration, anger, sadness all consume us, I think the fella that gave you the advice about not having your partner's one foot in the grave was good advice. I read it and thought he is right.

I will tell you, you have found a good source of people that are living with this and when you want to vent, cry, scream, and can type all at the same time, this is where you can do it. I pray that you stay strong and take it one day at a time. Love, like there is no tommorrow, and I know it will be a struggle cause my husband has his moments. I just leave the room and count until I am calmed down, and remember how much I love him, then return to him. We will all get through this together.

((((((((hugs))))))))

As Ever,

Cynthia

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You've come to a great place. There is a lot of support here. It helps! I felt much the same as you when my husband was diagnosed. I was sure he would be gone from me before the year was over. He is feeling really well right now and I have learned from this board that this can be beat. I don't go anywhere else online anymore. I have given up surfing and looking for statisitics. I come here and I listen to what his doctors tell us. I have never asked how long Hugh has to live because I don't think there is a statistic in the world that can tell me how long my husband will live. He is an individual, he has a great attitude and that's important. I don't remember much of December either. Christmas was a nightmare. I have gotten myself more together now. I still have bad days but the advice I have gotten from here has helped so much.

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Oh Louise, I feel so bad for you. It is so hard in the beginning, such shock, devastation and the feeling that your whole world fell apart. I thought I'd never stop crying. Little by little it will get better, the shock will give way to determination. You are fortuate that he is feeling well and has a good attitude, that will take you far.

We're here for you.

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"am i nuts?"

No, you're grieving. Remember "anticipatory grieving" from nursing school? Allow yourself the same time to grieve, the same permission to stop/slow down functioning, that you would give one of your patients.

When my Dad died after 4 months of hospice care, I had this fantasy that things would be different for me because I'm a nurse and I understand the grieving process. WRONG!!! Silly me, I'm human, too, just as you are.

You will do well for him. Just be as kind to yourself as you are to him.

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Guest DaveG

Louise:

For those of us who are survivors, sometimes it is difficult for us to put on the "shoes of a caregiver/familymember/friend" as the shoes you walk in are far different than ours. We know what is going on with our bodies, and it sounds as if your special friend knows what is going on with his body. My clinical research assistant, the one medical person I have grown close to, still has problems dealing with the fact that I golf almost everyday, most of the time 18 holes.

Let your friend dictate what happens, as he is the one in control. Sometimes my wife would like to reverse that role of control, as she thinks I try too hard and do far too many things, much more than I should. I look at it his way, God has given me a specific amount of time, and none of us know what that time is, so I don't want to miss out on anything. Your friend sounds very much the same, he wants to give 110% in everything he does. That's fine, he will let his body dictate to him what he can and can not do. Just be aware that he may hit that proverbial "wall" at some point. Just be there when he does, but be there with support, not with "I told you so".

I am fairly new to chemo myself, as I was restaged from Stage I to Stage IV NSCLC in April. I was "riding" along enjoying thet fact that I was Stage I and had a great prognosis. This just demonstrates how quickly this disease can turn, but it can reverse course, as quickly as it turns. The chemo is working with me, as I have up to 50% resolution of the tumors and the prognosis gets better as each day goes by.

The biggest thing you can do for your friend is just be there with a nice soft shoulder for him to rest on when the time should come.

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HI Louise,

welcome to a place were everyone knows how you feel. My advice is really take one day at a time. Enjoy your time with your loved one. What helps me is hope, I hope and pray every day that my dad has a good day. Every now and then I pray to God to make his lc disappear and if thats not his plan then please let him have a good day! Hope is the only thing that helps me get through it, and these boards of course. Welcome to a wonderful place!!

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((((((((((HUGS)))))))))))) Louise,

First off, you are NOT nuts!!! I think we have all been the same place as you are. In fact, I think I wrote this exact same message on this site a few times. There are still days now, after 3 months of this wild ride, that I feel I revert back to that place of devastation and grieving.

Your love and my husband sound like they have many things in common. My husband too was diagnosed with LC after a bout of pneumonia, where they X-rayed his chest and failed to see a problem, and only one excellent doctor had the guts to question a follow up x-ray during a yearly physical two months later. The first rounds of chemo were well tolerated. He had a bit of nausea, but it didn't slow him down a bit. In fact, I remember him coming home from treatment and then painting our living room the same evening. He's not tolerating the new chemo as well, but I'm trying to think positively that it is because the drugs are really beating the crap out of the cancer. My husband also has the best attitude about this. I can only admire him, and hope to be able to project one tenth of his courage. He tells me that this is only a bump in the road of his life. He's going to beat this. Your man sounds like he's got the same view. It's for the best, as it's hard enough to fight this battle without giving up before it starts.

Now, you need to take after him, and follow his example. Stay positive. Believe he can beat this, because he isn't a statistic, and he CAN win. Take each day one day at a time. Know that you do have this time together today.

I will be praying for you both!

Carleen

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Dear Louise,

Just cry as much as you want because we can't stop it anyway. I cried so much for the first three months that I couldn't figure where the water for the tears was coming from. Like you, I cried behind my husband's back most of the time. Sometimes at the drs office I couldn't talk to the dr and my husband had to tell me to take a deep breath, then speak. He knows I cry easy and always have. He also knows that I am strong and can handle the future whatever it may be. Before this happened to my husband, I had gone through it many times with family and friends and I think I was crying for myself. Feeling sorry because how was I going to go on. I am strong but without him what did I have. You see, i too had him buried.

Being on this board has really helped me to see that there is no time limit on anyone. Not even on you or me. There is a day out there that we all will face but no one, no one, knows that day. The only thing we must do is live our life each day and don't wonder about tomorrow for today is doing okay and that is all that counts right now for the time being. GOD BLESS

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It's been 10 months for our family and while it has gotten easier with time and the more we learn about treatments / effects and what to expect - it is still so extremely hard. The uncertainty is what fuels it all. My dad retired one year before his dx. He and my mom were planning a huge move out of the country to a tropical area of their dreams where his retirement checks would stretch much farther and they could live worry-free. Now we all worry about treatments and tests and whether or not this is working. My mom and I had my dad in the grave the minute he was diagnosed. We wouldn't eat, sleep or stop crying. Then I found out that there ARE survivors out there - I'd share my stories with my family and the hope began to grow. I realized that I was wasting my time "mourning" my dad while he was still here to LIVE and give and just be.

Sure all of us still worry like crazy and we still get upset and testing times are the worst to wait thru, but we don't know what will happen or when - I could be hit by a car crossing the street - so we've decided (my family) to enjoy life 100% life never before and pray like heck for that miracle.

God bless you and your sweetie as you begin this journey. We are all here for you.

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Guest pepperpike

Dear Louise,

Please believe you are not nuts. Grieve, vent here as much as you need, but remember to take care of yourself. Today's news is how caregivers' health can be affected negatively. You wouldn't want your mate to beat this and then you get sick.

I'm not a caregiver, but I used alot of positive tapes and books to keep me up during the last 8 months. A great little book is "There's No Place Like HOPE" by Vickie Girard. I also have a set of Bernie Seigel's tapes that I play from time to time to remind me how to be an Exceptional Cancer Patient.....one who beats the stats. Anything upbeat and positive would be great.

I think it's wonderful to have energy during treatment. I lost my energy in February and am just now beginning to get it back. I completed 2 hours of yoga and 1 hour of weight training this week. I'm 6 weeks post

treatment.

Please keep us updated. Looking forward to hearing from you soon.

You'll both be in my prayers.

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Loise----Please take the time to read thru the posts on these pages. All of us, patients or caregivers felt the same at the beginning. WHAT ME? Then it changes. All of us then deal with cancer differently. Emotionally and physically. Just try and take your cues from him and each day WILL come easier. Come here whenever you need to talk.

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naturally i cried through each post. :oops: Thank you for all your help. My very first patient when i got out of nursing school had small cell lung cancer and didn't last more than two weeks and it was an inhumane awful few weeks. I had tried to look up statistics but knew before i got too far i had no business looking as things weren't helping me out there either because they don't say good things about prognosis in the medical places. I have found in here there are good things happening to people with lung cancer now that didn't happen before. My friend who has cancer says... look at the hockey statistics.. shots on goal mean nothing... it's the one that makes it into the net... I'm hoping that how good he feels and how well this chemo is going, and his attitude is going to go far in getting him through this. He keeps telling me not to be scared. I keep trying not to be. But when one loves someone so much how can I not be? I will say we have said more things to each other that we probably would have never said... and talked about more things that we ever have in the last 8 weeks. And suddenly so many things that used to be important are sooooooooo very minor. I just keep thinking he HAS to be one of the people that survives this. I won't accept it any other way.

But the tears still fall. Because everybody wants their family member to survive this and they can't all can they?

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Dear Louise,

My heart really goes out to you. It's been almost 2 years since I was diagnosed and I remember how awful the first few months were. We felt like we had stepped into hell.

Once I got on a treatment plan and realized I wasn't going to die tomorrow and after getting on a very good anti-depressant (Celexa) I started to think more in terms of "living with cancer" as opposed to dying from cancer.

You said in your post:

"everybody wants their family member to survive this and they can't all can they?

The answer to your question is "No, not everyone can survive this."

That's why it's very important to figure out how you are going to live with the knowledge that someone you love has lung cancer. Get him on a good treatment program ASAP and try not to waste time with anger or fear or crying because you two have a lot of living and loving to do yet. Believe it or not, even in this hell called Cancer, there are good days ahead.

I am thinking of you,

Ada

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Louise....you have come to the greatest support resource in the world..let yourself feel the grief then come to terms with it and move forward. If there is one thing I have learned through this nightmare it is that hope springs eternal on this roller coaster ride. As the oncologist told my Dad..there is not set time remaining...it is strength, will and treatment that wil determine that (personally I think she left out the most important part....faith and God) Be grateful for the good days and live them to their fullest and take the poor days as they come one by one. I have grown even closer to my Dad and little things no longer interfere with our love or our time together. It has made me realize what is important in life and I am inspired by his strength as well as the strength of the people on this board..welcome and you are in my prayers!

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louise,

With Small Cell Cancer, the chemo generally works well with shrinking the tumors. Please hang in there as he is still alive. My wife and I had the same greiving process as though my father-in-law was already gone, then one day we realized he is still here and we need to make it a best as possible and forget the misery and enjoy the moments.

We have actually done more and seen more since his dx than we did prior.

It sound positive since there is no nasea and no weight loss..

Hang in there and we are here for you!!

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Guest canuckwebgrrl

Louise,

Your story is unfortunately very familiar. My step-dad (Steve) was diagnosed the very same way you described. The pneumonia that wouldn't go away, and the eventual diagnosis of SCLC w/ mets to liver & nodes. Steve is also a fighter who didn't want any prognosis info because he feels great! The chemo really kicked the crap out of his cancer, and he was breathing and feeling better than he had in months after the first treatment.

The emotions you described are also unfortunately familiar. Not that I would ever compare your relationship with your partner to mine with my step-dad. But Steve's been my step-dad for over 20 years (I'm 28), he's only 52 (53 this weekend!), and I have had a lucky life so far and have never lost anyone close to me. My point is, don't beat yourself up for having those feelings. I thought in the first few weeks that I might be going crazy too. Obsessive thinking and wrestling with the idea that something is happening to someone you love and have no control over whatsoever is not a good feeling.

You'll find such comfort here, we're all in this together.

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My heart really goes out to you! My significant other was diagnosed with nsclc May 7, 2003. They caught his lung cancer due to day and nights sweats and fever that never quit. He had to take 800mg of ibruprohen every 8 hours and then alternate with 650 mg of tylenol in between that just to make it so he could half way fuction. The fever made him tired and sick feeling. I too cried almost non stop the first few weeks! I am a school bus driver and I would just start crying and couldn't stop, one day I yelled at the kids for things that normally wouldn't have bothered me, then I started crying(the kids on the bus probably thought I was losing it, which I was) and I called my boss and he had me come and talk to him! He was a live saver at that momment. I told him I thought I was losing it! That I didn't think I could handle it!! Thank God for understanding people. My boyfriend was really angry at first. He yelled at everybody especially me. I think I'm his escape goat. He actually seemed to handle it as well as anyone can. Then he had his surgery May 20, 2003 and they removed his rt. upper lobe. His nodes were clear and doesn't appear to be any sign of mets, but they did find a 7mm size spot on his liver. Which they "think" is just a cyst but will watch it they claim. He seemed to be recovering pretty good up until about 10-11 days ago and his fever has returned along with the day and night sweats. The oncologist we had seened we called and talked to a Nurse, she made us feel like we were stupid and over reacting saying that fever isn't a sign of cancer, but I don't see how they can say that when this was his only symptom!!Now he feels tired and sick all the time again. So we called his family doctor and he ordered a pet scan for him. Which is scheduled for July 10. He does nothing but lay and sleep all the time. I worry myself sick about him. The doctor today give him a script of prozac to help with his depression. I'm so glad your s/o has such a possitive attitude. and feels good. Be thankful for that!! I'm hoping the prozac will help my s/o! I wish you the best! Just hang in there! It helps reading other post on here, it gives you hope!! After the shock wore off if it ever does, I was able to get myself together more, I realized I had to be the strong one now and that it was up to me to try and help keep his spirits up, which is hard to do sometimes. Especially when you have bad days too!! I'll say a prayer for you!!

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Louise,

Sorry it took me so long to see your post but last week was a roller coaster ride of emotions for me with my husband's latest problems. I know that you will find much support here. Come here often just to read the encouraging posts and when you need help please ask for it.

I don't remember much of November/December either. I'm a teacher and just going in each day and trying to teach and planning for subs when I needed to take Bill to the doctor was a nightmare. Gradually I learned how to handle more and more and this board and prayer helped me (and continue to help me!) alot. My husband is on his 3rd treatment now and we pray it works since nothing else has stopped this terrible disease from spreading.

Your man's great attitude will be a big benefit in kicking the out of this disease. Hang in there and keep us posted. God can and does work wonders!!!

Blessings to you,

Peg

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