I'm just lost...

[Guest Betty]

My name is Betty & my boyfriend has nsclc stage !V, inoperable 5x4 inches top left lobe bottom lobe has fluid. Mets to brain x 2 in cerebellum extending into brain stem. Has had 20 rads to both, chemo x 3 of Taxel & carbo. Dxed May 13th 2003. Last chest ex-ray showed not much change..

Due to get a CT & MRI Aug. 23rd to check on any changes.......

Has had both plus , biopsy needle asperation & many other tests in May.

Guess all you ever meet here are people woth problems....well...excuse me for that, I'm not myself.

[Don Wood]

Hi, Betty, and welcome to the board. Sorry about your boyfriend. Yes, we are all tied together here by lung cancer, either as the survivor or as family and/or caregiver. Much info and support here. Stay in touch and let us know how your boyfriend and yourself are doing. Blessings. Don

[bobmc]

Hi Betty and welcome! It's OK not to be yourself! Lung cancer changes many things in our lives. It's just the way it is. Iv'e found that I do not have to go through this terrible disease alone and that it's comforting to be here and feels good to be able to help others.You will find many wonderful, knowledgable and caring people here. But, most importantly you will find SURVIVORS. Glad you decided to join us. You and your boyfriend will be in my prayers.

God bless and be well

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[kimblanchard]

Hi Betty,

Welcome to our family. I am glad you found us because we can offer you support and HOPE!!! Keep posting so we know how we can help you.

Blessings to you,

Peg

[Guest Betty]

Thanks for the welcome Don and much luck to your wife Licie. Congrats on your surviving your cancer!!

Tonight he is "slow" is the only word I can think of. I'm scared of seeing that "foggy" look again....I wish I knew what to expect...it would be easier on me.

[Guest Betty]

Thanks for the welcome Bob...and for understanding that I don't know how I am...just kinda slaps ya in the face and walks away and suddenly your drownding, grabing for anything to stay a float.

He dosen't like it when I cry...what am I to do??

Thanks again..

[norme]

HI BETTY,

WE ARE ALL LOST FOR HOW TO COPE WITH IT EACH DAY, HOW TO HELP WITH OUR LOVED ONES EACH DAY BUT NOT LOST ON HOW TO LOVE THEM EACH DAY.

I AM HOPING FOR YOU THAT THINGS START TO TURN AROUND IN A FEW DAYS OR WEEKS. MY HUSBAND WAS REALLY DOWN FOR A PERIOD OF TIME AND I HAD HIM IN HIS GRAVE. HE STARTED GETTING BETTER AND I SAW THE SUN COME OUT. HE IS AGAIN HAVING SOME TROUBLE BUT AS YOU PROBABLY HAVE READ ON HERE, IT IS LIKENED TO A ROLLER COASTER RIDE. UPS AND DOWNS. JUST CARRY LOTS OF TISSUE. IT IS BETTER TO GET IT OUT THEN KEEP IT ALL BUNDLED UP INSIDE. THAT IS MY THOUGHTS ON IT. I CAN CRY AT THE DROP OF A PIN. I CRY FOR HAPPENESS AND SADNESS. I CRY IF A COMMERCIAL IS SAD ON THE TV BUT THAT IS JUST ME. I SHOULD HAVE BEEN AN ACTRESS CAUSE I COULD REALLY DO THE CRYING PARTS..

HOPE THIS HELPS YOU SOME. HANG IN AND HOPE FOR THE BEST FOR YOUR LOVED ONE.

[renee]

Welcome to our huge family here. I wish that it wasn't because of such horrible reasons that we are together, but I tell you this. There isn't a better bunch of people in the world that I would want to go through this with.

Yes the emotions are hard and strong and fast. One minute you are hopefull and you can hear the birds sing and the next a huge cloud comes over you and the world sux.

Please fill us in and let us know how we can help. We are always here, we don't sleep much either.

God bless you,

Renee

[luvmydog2]

Hi Betty,

Welcome to the board. As you already know there is so much love and understanding in this message board. I joined only a few days ago. Here you will find people that has almost the same situation as you. No 2 cases are the same but some have their simularities.

Come as often as you like and share with us or cry and let us cry with you. Either way you will learn about this killer disease and find comfort at the same time.

Bruce

[Jenny G.]

Welcome Betty,

There are many here who can relate to what you are going through. That in itself is some comfort. You can speak your mind, vent, ask for information, share information, get support, and offer support to others. Know that you are not alone in this.

Jenny

[Guest Betty]

Norme,

I hate this cancer place and all it stands for ...today, tomorrow and forever!!!!

I watched him fall asleep twelve times today fearing one of those he would not waken and hopeing he just drifted off if it had to be...roller coaster emotions are wearing me out.

Had an amergency run to the hospital today..infection is setting in the fluid in the bottom of his lung. To top that off he's egtting that foggy eyed look again and we are not due to see the doc til the 21st of next month.

I love him so much I'd die for him but that is also something that probably has been said here..*heavy sigh.

Thanks for listening...

[mscyn4u]

Hi Betty

I haven't been a part of this group long but I believe it is all "fate" that we have a place to come together for support. Believe me we all have our good and bad days dealing with our loved ones who are battling this dreadful disease. I don't get to post much because my husband had a lobectomy and is breaking records with his hospital stay, it is now day 25 not counting the one day he was discharged 7/17/03, but I had to bring him back to ER the next day due to breathing problems and fluid build up in his legs and feet.

But when I do get a few minutes home from the hospital I try to check in and post if I need to do an update and/or read others stories for some help on how to deal with it all.

You will be added to many prayers, stay strong and believe and steal time for you when possible, is the best advice I can give.

As Ever,

Cynthia

[norme]

BETTY, WHY DIDN'T THEY KEEP YOUR BOYFRIEND IN THE HOSPITAL WITH HIM HAVING AN INFECTION?

HAVE YOU TALKED TO HIS DR NOW. WHAT IS HE SAYING ABOUT HIS CONDITION AT THE PRESENT TIME? WHEN BUDDY WAS REAL BAD I TO LOOKED AT HIM DURING THE SLEEPING TIMES AND THOUGHT THE SAME BUT HE GOT TURNED AROUND AND AS OF TODAY, I WAIT FOR HIM TO AWAKE TO TALK TO ME AND ENJOY HIS BEING HERE....

bUDDY'S DRS ALWAYS SAY THAT EVEN THOUGH WE DON'T SEE YOU CONSTANTLY, YOU KNOW YOU CAN COME IN TO THE OFFICE IF YOU ARE HAVING PROBLEMS. THAT IS ALWAYS CONFORTING AND I WOULD TAKE HIM THERE IF THERE WERE PROBLEMS LIKE YOU ARE HAVING WITH YOURS.

BEFORE I CAME TO THIS BOARD, I THOUGHT I WAS GOING THROUGH THIS ALL BY MYSELF AGAIN. WE HAVE A SON, BUT I TRY NOT TO BURDEN HIM WITH ANY OF THIS. HE HAS A FAMILY AND I KNOW HE WOULD BE HERE MORE OFTEN IF HE THOUGHT I NEEDED HIM BUT I HAVE THIS GREAT BOARDTO HELP ME THROUGH EACH DAY, WITH YOU INCLUDED, SO HANG TIGHT AND PREPARE YOURSELF FOR WHATEVER COMES ALONG EACH DAY.

WE ARE ALL HERE TO HELP ONE ANOTHER TO SURVIVE....

[Guest]

They didn't keep him at the hospital beacause we were 100 miles from home and at that time he wouldn't stay. We don't have insurance--if that answers any questions any better. He kept saying "it would get better over time"..it didn't. I finally called our "home doc" and he slapped his butt in, gave him a transfusion and took a litter off the lung. We just got home from a vosit with our "home doc" and things are much better......I cryed & he said "now you know what I said about that" I told him I loved him more then he would ever know and to just shut up!! I cryed from so much worry taken off it was such a relief..he understands now I hope. Awww...something else we discussed...."hope".... I was lookibg at the long time picture & not at today. It's still hard for me to hope because I know he has only a year & doubt weather they will find any chance for him. This is not easy to say the least & hard times are on the way. I hope for strenght to get through this and beyond, peace for him........let me know when this sounds like crap. ....but thank you and all for being here to help keep me sane. Bless you!

[Guest Betty]

"steal time for me when possable"...I make an excuse to run down to the post office for 15 min. and yes I feel quilty for that that. I realize I shouldn't but he's the one with the cancer...I think I suffer more emotionaly. Another roller coaster day.

Thanks and my blessings on your day.

Hi Betty

Cynthia

[Margaret]

Betty,

I am glad you found this site, because you need to express your feelings (all of which are valid). You two have been through a great deal of upheaval in a very short period of time, but then, also, a great deal has been accomplished. In the beginning everything seems insurmountable, but I found that as I began treatment, learned more about everything, I felt like I was getting a little control back in my life.

I am very new to posting on this list, but I hope my concern will help support you and your boyfriend in this battle. I include everyone on this list in my prayers.

Peace,

Margaret

[Connie B]

Dear Betty,

Well, I have to add my 5 cents to all that is going on with you and your boyfriend.

First off, why isn't he on some kind of Medical Assts program? I would think he should qualify? Your family doctor or his office can help you with that, or so could the Social Worker at any Hospital.

And WHY is the Onc. Doc waiting soooooo long to see him again? Why are they waiting until the End of August? That is just CRAZINESS to me!! I'm sorry my dear, but this really sounds crazy to me what they are doing to your boyfriend. And of course it carries over onto you!! (((((((BETTY))))))

I am guessing they are no longer doing any kind of treatments on him?? And WHY NOT?

And one more thing my dear that I really need to share with you. You had mentioned in one of your posts that you "wished you knew what to expect so you could be prepared?" Well Betty, I have lost 3 close family members to this monster of a disease and I have lost MANY friends and other family membrs as well, and having gone through all that, knowing all I knew about what to expect and what to look for and thinking I was prepared, I WASN'T!! It hurts like HELL no matter WHAT! And Everyone is different in the end or even near the end. So Sweetie, try real hard to clear your brain with those thoughts, because your wasting a lot of time thinking about that stuff, when you could be enjoying each precious moment with your boyfriend.

I sure hope you will look into getting him on some kind of Medical Assitance program. SOMETHING HAS TO BE OUT THERE FOR HIM!

Take care my dear, and know your in the right place here. And yes, most of us do have problems, but some of us don't have to many that we can't lend a helping hand to some of those that have more then others.

Warm and Gentle Hugs,

[okiegrl]

Hello Betty and let me say I feel for you. I lost my husband of 23 years this past March 21st, 2003 to lc after 2 1/2 years of battle and I know your pain sweetie....it hurts like hell you get mad, you wonder if doctors are doing all they can one minute you think all is going to be fine, then wam.......it throws you a curve with a capital C. Take each day to its fullest do not only see the sky but see the blue smell the air see the leaf fall. Enjoy each other even in the pain the sickness. Keep holding to each other every day. Never miss saying I love you. And know always you did everything you could do and keep holding to your faith cause faith love and the folks out here do help you keep on keeping on.......peace and we are here anytime sweetie any time.

Cancer is so limited...

It cannot cripple love

It cannot shatter hope

It cannot corrode faith

It cannot destroy peace

It cannot kill friendship

It cannot suppress memories

It cannot silence courage

It cannot invade the soul

It cannot steal eternal life

It cannot conquer the spirit.

[norme]

Hi Betty,

It's me again. Connie is right, did you or your boyfriend try for assistance.

There are programs at your local Social Security office that he may qualify for. one is called Supplemental Security Income otherwise known as SSI. It is a needs based program based on income and resourses. If he qualifies, he may be eligible not only for monthly income but a Medical Card which is like gold to help pay drs and hospitals when going through times like these. Should his income or resourses be more than the allowed amount for his State then there is also Social Security Disability benefits. That is a program where a person works and pays into Social Security and then they are securing their future for disability, retirement and survivors benefits. Sometimes a person qualifies for both. SSI if awarded starts the medical card and payment from the moment of filing and Social Security disability starts after a full five month waiting period from the time a person's

disability is established. He can do this all by phone, does not need to go to any office.

you all can also check out more regarding these benefits on the website www.ssa.gov however, they can get confusing so I would call the above 800 number..Don't delay....

I don't know how old your boyfriend is or how long he has worked and possibly paid into social security but if i were him, i would call 1-800-772-1213 and talk to the representative. It never hurts to file a claim and see where it goes from there...

Hang in there and cry all you want. It sure helps me at times....