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How did it feel when you heard the diagnosis?...


KatieB

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How did it feel when you heard the diagnosis that you (or your loved one) has lung cancer?

How did you get from that initial shock to where you are today?

I think this may be an important thread for folks who are new and struggling.

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Good topic.

When I got the call about a mass on my mom's chest xray, I hyperventilated in my office. None of us could stop crying. I could not speak on the phone. Even at work for the months after diagnosis, I would cry. I once got gas and drove away with the pump still in the car and ripped it out! I was like out of my mind.

My parents started antidepressants. My mom immediately the week after diagnosis made us buy burial plots. I called private ambulance companies to see if they would take her to the hospital of preference in an emergency. WIERD things went through our minds.

I NEVER thought I would smile again. I wanted to PUNCH people who felt happy.

Then, in time, reading so many survival stories, and watching my mom fight, we all started to adjust to this new normal. This website also helped enormously. It made me feel less alone. And the friends I have made here, especially my "sisters".

The most important thing is to keep your sense of humor. Like one of our jokes--"my mom, the only chemo patient to not lose an ounce of weight"; "my mom, the only one who goes shopping at Nordstroms to get a valore type of sweat outfit to start chemo".

I have a wierd sense of humor, and after the initial shock, it helped to have that back.

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I know, I have to do it too...

.....I know this is way long....but here is one excerpt from my journal six days after he was dx.

September 19, 2002

I’m sitting in my big fat blue chair. All I ever wanted was a big, fat, cozy chair to set by the window in my bedroom to read in. I finally got one, designed for me at Dillards. I couldn’t wait to sit in it, sip some tea and read.

This is a stupid, ridiculous big chair taking up space in my stupid house with no other purpose than as the object of desire of a stupid woman who has a houseful of meaningless and wasteful things- things that I wasted my energy and time wanting, dreaming about, and going into debt for. I had wasted my life, until now, on meaningless material things.

While now, it all means nothing.

I dream of miracles now. I dream that I am in a dream and that none of this will be real. Sometimes, really early in the mornings, for a few seconds, I forget.

I forget that my dad may die. But it is only for a few seconds. Then, I remember every second of everyday since September 13, 2002, when our worlds changed.

I’m getting ready to fight, even if daddy isn’t. I will be armed with information and knowledge and try like hell to be strong for my dad, and not fall apart. I’m going to find out all I can, and I am going to look for help.

I’m still crying out to God. I am crying out so loudly my heart hurts and aches inside my chest wall.

Please hear me! Please give us a miracle! Please let me father live, and change, and love and go forward with his life for many more years to come! Please hear me, God! Please save him!

My dad is an ordinary man who never wavered. He never let us down. He is a reliable, honest, good hearted man who sacrificed everything for his family. So please God, please save his life.

Today I will give in to the grief- the grief of everything we knew being lost forever.

But tomorrow, we fight!

This was the beginning for me. We all learn from each other and lean on each other.

The rest you can read in my BIO in the "about" page-or the MY STORY forum.

I just want to reiterate that there is hope...

even in the beginning when things seems so raw and devestating.....

we could have settled for the 4 months- but we got 11 months and 21 wonderful days.

There are many here who are surviving years and have had success with their treatments and there are alot of new treatments and clinical trials (so many more now than when my dad was initially diagnosed!).

I was angry, and sad, and wanted to punch smiling people in the face too! It's what we all go thru I think.

I hope this helps to let you know that you are not alone and those that walked before you are here to help.

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Hi Katie,

Shock is to say the least. When the Dr. told me in

his office a few tears dripped, got my paperwork and

left. Went straight home and was very business like.

Called and made all the appts. I had to even before I

called my daughters. I never thought I would react that way. It took me a long time for it to sink in and really cry.(weeks) My father had passed from cancer in 1999 so his passing gave me the benefit to know what to do. (Thanks Dad).

It will be two yrs. in July that I was dx and when I

look back it's all so blurred. I think painkillers and shock had alot to do with that. The only thing that I would of changed is that I would of let my family in.

I tryed to be strong and not let them see me upset, but the only one I hurt was myself. By doing that they didn't know the pain(mentally and physically)the confusion, frustration and fear that I was going through. Now they think it's over and that is that.

For anyone who has just been dx, please sit and think

things through if you can, before jumping into anything.

Good luck to you all!!!

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Like someone had hit me with a big hammer. I was in the hospital, had a great doc and nursing staff, and had people to talk to about it.

At the time, I set ONE goal for myself -- not a cure, no miracles, but just ONE realistic goal. To maximize my survival.

That may mean zapping myself into the stratosphere, drinking the chemo, or whatever exotic remedy they might come up with, or it may mean at some point just saying "STOP." I won't live this way.

Whatever. I've stuck by that goal ever since, and when I get discouraged, I remember. Just make each day a good one to the best of your ability. Maximize each day. They add up.

Di

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sitting in the ER with Dave, and the doc said his sodium was very low and he had a spot on his chest xray, and some lung cancers put out a hormone that drops your sodium level, so he put the two together and said "I think you have lung cancer, we're going to get a CT scan now" and I guess I looked like I was in shock or my jaw hit the floor or something, because he looked at me and said "are you alright, ma'am"

that was a Saturday night. On Tuesday he had a surgical biopsy, on Wed. he had a port installed and had his first chemo on Thursday, all in the hospital.

that's been two years, one month. how did we get from there to here? one baby step at a time. not without alot of emotion (mostly from me, ha) and alot of determination (mostly from Dave). The bottom line is, your loved one has a choice, fight or die, and as our oncologist said, nothing is more important than a strong positive attitude and lots of support from your family. So right then and there, in the hospital room, that first week, I determined that I would be there every second, every step of the way. It's not easy, but what's the alternative? Give up on him? Give in, hope he dies? Nope, no way. But you have to do it one day, one hour, at a time, while keeping your eye on what's ahead. It's a delicate balance for sure.

Karen

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I remember the call about the first cancer (laryngeal cancer) and I felt like someone had just punched me in the stomach. I just sat on the stairs and cried. Not my dad, he was invincible, he was never sick, not him. Why not his brother the alcoholic? Why him who had kicked his addictions (smoking and drinking) over 25 years ago?

After that, I was spurred into action. I was going to find out everything and anything I could about his cancer. Treatment options, doctors, hospitals, etc. I would stay up all night on the internet, I couldn't sleep, I was on a mission!

It was the same when he was diagnosed with the second cancer (lung cancer). Not again, why him? He had been cancer free for two years, doing great, finally back to work. Now again, another punch in the stomach. Again, I was upset and then spurred into more action! I was in charge, watch out world!

Then came the second nodule after the lobectomy. You're kidding! Not again! He's been on chemotherapy! They said they got everything! Then a light bulb went off.......... Guess what, I am NOT in charge! Someone bigger than me is calling the shots and they are not the ones I want. I learned that I needed to accept the reality of the cancer, let my dad choose the options and ways that he could best handle it. I could provide information and do the research but then it was out of my hands. I've learned that my dad is an adult and in sound mind and can make his own decisions. I can be a support system but thats where my role ends. And you know what, I have been a more peaceful person. I've let go and let God. Not that I don't still get angry at Cancer and mourn my dad's loss of his voice, his old way of life, the job he loved, but I 've learned to appreciate life more and cherish every moment we have.

Wow, thanks, that was cathartic! Hope it helps others out there know that they are not alone.

Tammy

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We were on our annual girls trip to Gatlinburg. Mom had had pneumonia for a week or two prior, but felt up to going. About our 3rd night there, she was so sick, she could not sit up to get a drink of water. So, I took her to the ER in Gatlinburg, where we met a nice Dr. who came in with news like "I have a feeling it is something more than just pneumonia because pneumonia typically moves down in the lung and this white space is in the top of your lung. I really want you to follow up on this when you get home". The friend that went with us has been a nurse for years and he spoke to her when he mentioned what else it could be. We all knew what he was talking about. We went back to our chalet, where there were 14 other girls awaiting our return. We told them she was very ill and then later, I told the girls who would want to know what the Dr. had said. The mood was dampened, but we were still hopeful he was wrong. When we came home, I asked my stepdad if he would meet us with my brother so we could talk. He did and I explained what had happened in TN. I think he thought we were crazy, she was only 49 years old! The day after, we met with mom's PCP, who said he did not think this was lung cancer, but that he would send her for another CT scan the next day to be sure. I remember the moment exactly. Mom walked into my house the next day, I was on the phone with a woman who was talking to me about refinacing my house and my mom sits in a big comfy chair I have and says "I do have cancer." I think for a moment I kept talking with the banker until it sank in what mom had just said. I told the lady I had to go and I said/screamed "WHAT?" She went on to tell me that her PCP called her right back in after the CT scan to tell her. It was pure shock once again because from what her Dr. had said the day before, there was no way it was cancer. I felt fearful, ignorant to the disease, with only remembrances of my mom caregiving for her mother years ago as she struggled with the same damn disease. My grandmother chose for no chemo or anything, we think because she did not want to lose her hair. My mom's fight is much different, and we are still hoping it will end with better results. I think the other thing I have felt since her diagnosis is my own mortality. I am suire to succumb to this disease if I do not take better care of myself. Sorry this was lenghty...

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When I first went to my doctor for horseness in my voice, he did not like the x-ray. He said it could be a virus, pneumonia, scar tissue and a lot of other things. He wanted a CT. Everybody told me not to worry and all that because it prob was nothing. I knew better. I felt it was cancer. That prepared me for the dx. When I went back for results of the CT he wanted a biopsy. He said it was scary.Still everyone told me not to worry. I had the biopsy and went back about 3 days later and he called and had report faxed to him. His words...Gosh darn it, it is cancer. I stayed strong and did not bat an eye. He said he would make appt with Onc and get back to me.

I went out to the car and set there for a minute or two and lit me a cigarette while trying to figure out what to tell the others. That was my last cigarette that I smoked.(little over 2 years ago).

I went home and my wife called from work. I told her I would tell her about it when she got home.

I did feel like I was given the death sentance. I told her it was positive for cancer and that I did not want anyone to know yet. I did not want people that had not called or spoke to me in years to take pity on me cause I was dieing with cancer. I did not want special treatment or anything from them. I told her I had living to do yet and now I am going to bed and forget about it. Yep, that was me. I decided that I was going to do what it took to survive. I worked through Chemo/Radiation (3/4 of it anyway). I had surgery and did not go back to work. I feel great since I had lung removed.

How do I do it? The first thing I do is thank God everyday for the miracle. I stay positive. I try to help others when I can. I want to share my experience with others to let them know that Cancer is not a death sentence. I pray for each of you daily. Thanks for letting me share.

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Lucie fell apart and cried -- many times -- at and after the diagnosis. My reaction was very male -- let's see how we can solve this problem -- what do we need to do to control the pain and make her feel better -- what do we need to do to fight the disease. Later, I was angry that I had to give up a lot of my own life to help her get through all this -- it was and is an awesome responsiblity. I am more at peace now and so is she. This is after much counseling, support love and spiritual work. I don't believe we can do this alone, and I don't think we were meant to do it alone. We need to get the help we need. Don

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I went numb at first, then I went into a very academic fact finding mission. I looked up everything I could find. I did not know what stage I was at first so I spent the early days struggling with hope that I had early stage. When I found out that I had most likely had later stage cancer, my father died (the night of that oncology appointment) and the next week was a mixture of shock and grief.

The weeks after that were spent in battle mode, numbly getting opinions from different doctors, hoping for better statistics as I had young children and needed to hear better odds of having more time. I did find a doctor who felt that surgical removal would give me better odds and I went that route. It didn't work but I don't regret having tried.

I spent the first year giving things away and writing goodbye letters in a journal to my children. At the same time, I spent a great deal of time playing with them and volunteering at my youngest daughter's school (she was six at the time). My oldest turned away but as time went by, things normalized and aside from the Iressa and CT scans, there is a new normal. I don't believe I will ever meet NED but stable is a great word.

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I went to the doctor thinking I was going to get a muscle relaxer for the Pain. Instead he tells me I have lung cancer. I knew that pain was not an early symptom. I sobbed all the way home, I thought I had heard my death sentence.

How did I cope, with a lot of help from my husband, my friends, family, church, and a phone buddy, eventually a support group. Donna G

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My wife and I were siting in the ONC's office waiting for the results of the CAT and PET scans, trying to handle all that had been thrown at us during the past week.

When we were told it was bad, I fell apart and cried like a baby. During follow up visits the news just kept getting worse. I mangaged to keep working, but I was a useless mess...I was gonna die...it wasn;t fair...I was going to suffer horribly...how could I go on.

During the ride home from one of our ONC visits, I think following a second biopsy report, I turned to the wife and said "At least they can't give us any more bad news". We both cracked up and from that day on we have been having a ball. I started living each day to its fullest and not worrying about tomorrow. I can honestly say my life is happier post DX than before.

I have not given up and continue to fight, but the fear and horror of this disease is not controlling my life...sure I have bad days, but I have a lot more good ones.

Im a lucky man

luv

jim

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I had an area of question on a chest x-ray after a case of pneumonia so my primary care doctor sent me for a CT scan and from there, consultation with a thoracic surgeon for his take on it.

My husband and I took the pictures (X-ray and CT) to the surgeon's office and he offered us a few different explanations for what it could be and what we would be doing with each case. He briefly touched on cancer, but it was so brief it never really entered our thoughts... I was scheduled for a biopsy to see what it was (friend or foe) and he called me that evening with the diagnosis - he had fit me in as soon as he could get me in and was late leaving for a two week vacation so he could call me.

He told me the diagnosis and that I needed to get in contact with his office and a partner and have it removed within three weeks, very urgently did he stress that time frame.

I felt like the world fell out from under my feet. The punch in the gut came when I actually said the word to tell my husband what it was. Oh yeah, took the wind right out of my sails...

I looked it up online. The surgeon had told me it was Stage I, POSSIBLY Stage II, nothing to worry about, just have it removed. From my research, I knew odds were better the lower the stage and was relieved it was caught so early...

After getting home from the hospital, I was afraid to go to sleep, I thought I'd never wake up. Odd thing, fear.

Went through surgery and was scheduled to see an oncologist. The first visit to the oncologist was scheduled three days after I got out of the hospital and THAT'S when I found out how bad it was. That's when my brain and mouth stopped working together and the weight of the world dropped onto my shoulders. I listened to my husband and the doctor talking about what my options were and heard the doctor stressing clinical trials and going to MD Anderson for a second opinion. He set it all up, lined up all the tests for before I flew out and had his office get in contact for Corporate Angel Network for me. It all went like clockwork...

...and yet another visit to a doctor that could not give me answers. I was SO angry at the MD Anderson doctor when she basically told me to go home, they had nothing for me.

I had lost hope. I knew no one with lung cancer, wondered where all the survivors were...and one night, while torturing myself with more websurfing on odds and statistics, I stumbled onto the site. I've had hope ever since.

Never, NEVER lose hope.

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I called the doctor office for the results of my CT Scan and they said he wanted to see me....it was then that I knew. We went in, he told me and I almost hypervenilated, I sat on the exam table holding myself and rocking back and forth saying, oh my God. I kept looking into his eyes while my Mother and Husband asked questions. I was numb, shacky, scared, sick, lonely.

The 2nd time I was told (same doctor) that it had come back, I was alone...he was less then a foot from me when he told me. I threw the magazine I was holding to another chair and just looked deep into his eyes and didn't say anything. He kept asking me if I was OK and holding me and I kept saying I was OK. The nurse tried to stop me on the way out and the doctor yelled at her (poor thing). I made it to the parking lot, 2nd car in the row, before I lost control.

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What a great topic, Katie...I don't even know where to start.

My mom was someone who was always, always positive. She had been having shortness of breath, but blamed it on prior heart surgery. Finally she discovered a lump in her neck...which she joked about. I couldn't even begin to imagine her joking. But I didn't think that her joking would eventually teach me some life lessons.

To sum it up (and you can read more below). I have never felt so depressed, helpless, and in possession of a life out of control. I heard lung cancer and didn't know where to start...thank goodness for this website. Once I armed myself with knowledge I was able to start coming out of the darkness. It helped to think I could help my mom (and help others).

My mom was the most amazing woman...she only cried once after getting the news...she said she would fight until she could no longer fight (and she did). We would get bad news and she would say, well let's get a new plan of action. I would tell her how angry I was and she said she didn't carry anger in her heart. I always worried about her, but she showed me the power of human strength and spirit. I miss her terribly, because people like her only come around once in a million.

More of our story...

After some tests (and her annual trip to Palm Springs, which I begged her not to go on, but she did, thank goodness), we got the horrible news which I will never forget. I was sitting in the parking lot of Sears and I called my mom to see if she had heard anything. She told me the news wasn't good and that she had andecarcinoma (sp?). I didn't know what that was and she told me the dreaded words, lung cancer. I told her I would be right over. I hung up the phone and sobbed and sobbed. I couldn't stop sobbing. I felt my life was over, because how could I go on without my mom. I couldn't imagine life being more cruel in dealing my loving mom with such a blow. I couldn't come out of the dark cloud.

My mom and I had an amazing (which is an understatement) relationship, we talked about everything, saw each other everyday and talked at least 5 times a day. I would rarely show emotion in front of her, because I didn't want to cause her any undue pain. For this I am glad, because I read part of some notes she wrote during her illness and she wrote of how proud she was of me and the strength and courage I showed. I saved my breakdowns for my husband, friends and this supportive website.

Once I got over the initial shock, I found this website and started to realize having lung cancer didn't mean the end. I empowered myself with knowledge...I was there for every step with my mom. I researched and researched. As long as I had knowledge I didn't feel so helpless. My mom taught me to NEVER EVER give up hope. She was a fighter. I admire that woman more than I admire anyone else in this world. But lung cancer taught me that I could admire her more than I ever thought possible.

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Charlie's diagnosis came on a Friday. He got up that morning (I had already gone to work) and was short of breath walking through the house. He called his PCP and made an appointment. He went to the dr. and they ran some tests that gave them an indication that it could be pulmonary emboli. Workaholic that he was, he went on to work because they couldn't schedule him for a CT scan until 1:00 p.m. He finally called me just before 1:00 to tell me what was going on. The dr. called and told us to come see him at 4:30.

Charlie and I are sitting there and the dr. walks in. He says that Charlie has blood clots in his lungs and that he will need to be hospitalized. He goes on to say that the CT scan shows what appears to be cancer. At this point is when I went numb because I figured he had a heart problem or something not CANCER. He then explained that cancer causes some people's blood to thicken and clot. This seemed to be the case with Charlie.

I was comforted by the fact that his PCP was a Christian. He immediately prayed for us.

After many tests, needle biopsy, broncoscopy, etc., it was official. VERY BAD NEWS! Stage IV. He left the hospital after 11 days with a new port ready for chemo.

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Relieved to at last know what was wrong with me.

I had been sick for a long time, and I kept going to my doctors and they kept telling me that other than the Policystic Organ Disease I was okay. I wasn't okay. I had undiagnosed Lung Cancer. And undiagnosed Crohn's.

I take exception to anyone who says Lung Cancer has no symptoms in it's early stages. It does have symptoms...but a lot of time those of us who have the disease don't listen to what our bodies are telling us. And then there are the Doctors who don't listen to US when whe tell THEM something is wrong.

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When the Doctor told me my wife had Lung Cancer like so many of you i was just numb with shock. I did not want to believe it as my partner in life for 43 yr's was going to be fighting the fight of her life.

The next day we talked and made our battle plan and both agreed that no matter what we would no longer be cafeteria Christian's as we now knew GOD was giving us one more chance to serve him instead of our selve's. I had not been to Confession in 30 +_ year's and after going it was like the weight of the world had been lifted. The wife since DX and through all her treatment's has only missed Mass 2 or 3 time's and we spend our 1 hour a week in perpetual adoration and even that she has only missed maybe 3 or 4 time's.. Lung Cancer has brought us back to GOD so indeed God does work in mysterious way's..And this desease has made each day with my Wife a Speacial day. Also we have made so many new friend's along with just fantastic Nurses at the Cancer Center here that as strange as this might sound this in it's own way has become a BLessing.....

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I actually got the dx by phone!! :shock:

It was my PCP who was tracking two tiny nodules in one lung, from a CT scan. 8 months after the first CT I had the second scan and there was a new "patchy inflitrate" that seemed to indicate something sinister.

My PCP called me in then for an xray...thinking maybe pneumonia or sarcoidosis? Before I left his office that day, though, he said his best guess was lymphoma. I had to go home to tell my husband...."The good news is, he doesn't think it's lung cancer. The bad news is...he thinks it's lymphoma." Hubby held me and we both cried. To this day I'm not sure how I drove home 15 mins. from the doctor's office WITHOUT crying in the car. I think I was a bit numb.

My PCP got me an apptmt with a thoracic surgeon two days later...and the day after that, I had my biopsy. May 6, 2004. Smoked my last cigarette at noon that day and had the biopsy at about 6:30 p.m. I figured NO MATTER WHAT was going on in my lung, it was still a pretty good idea to quit smoking...so I did. :roll: The surgeon squeezed me into his schedule as he was leaving town the next day for a week.

May 10th, a Monday my PCP called with the pathology....and it was small cell.

Two days after that I saw the Onc for the first time and HE told us it was curable, if I was limited (which it turned out I was)!! That's about all it took for me to leapfrog right over my fear and angst...and dedicate myself to beating this thing.

I tend to be an upbeat, positive (some might suggest cockeyed optimistic :wink: ) person in general. I'd been on the internet, of course, gathering information and it was a STRUGGLE not to let the fear eat me alive! But I decided not everything you read applies or is even the truth!! :wink:

My cancer came back after 4 months of NED and in February I was told I had a pancreas full of it and four good sized tumors in my liver. I didn't have to ask my Onc if I was still curable this time. :roll: THIS time the fear hit me like a Mack truck!! MUCH worse than the original diagnosis. I slept a weekend away and the decided it was time for another leapfrog if I had any chance at living my life without an ulcer!

So I'm over the fear again. THIS time was the real wake up call....but after three chemo cycles, I'm beating the cancer back again...and hoping for a longer remission this time.

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I didn't cry, I'm not sure why. I think it was more a feeling of shock. It went from the original finding of a "shadow" on my xray to a CT Scan a week later, to a PET scan 2 weeks after that to another CT scan 2 months after the PET, to a Pulomonary Spec. 2 weeks after THAT, to a 2nd opinion 2 weeks after I finally won the fight with my insurance company to go to it, to the surgery 3 weeks after that. So I was constantly moving along this path that I didn't really want to be on but couldn't get off.

After the first CT, I had a few days off from work and I remember the shock of it all, how every once in a while it would just overwhelm me, how I had to force myself to actually breathe, because I would just be forgetting to breathe becasue of the fear. Not the fear of dying, but the fear of leaving my son, that was the fear that kept trying to choke me.

In the almost 5 months from original detection to surgery, not many people knew, I didn't want them to know. The ones that did know, I downplayed it. In fact, the people at work were shocked when they went to send flowers and discovered I was at the Cancer Treatment Center of America, they had no idea. I didn't downplay it because I was ashamed or anything, I have always had the tendency to close in on myself when the times get the toughest.

I have used humour ever since like others before me have stated. At work, everyone uses the one lung line now, even people visiting from the corporate offices wait for it. If I'm given an extra assignment or something, I will always pipe up with, sure, give the one lunged woman more work to do. Or if someone offers me bubble gum, I'll tell them no thanks, I gave up blowing bubbles since they come out one sided. I find that humour gets the point across, and is an everyday "soft" reminder that people can survive with lung cancer. It also helps me to remember I need to still laugh.

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I felt that I was going to lose my mom/best friend. I cried in my room for days. When she made me go back to school and let the teachers she will no longer be attending but I would, I walked around and cried when I saw the tables we sat at together, the time we learned to draw blood and I got mad at her because it hurt (I hate needles in me!), then of course people ask after a while how;s your mom? Where's your mom? You doing okay? That made it harder to deal with. Now I can go to school and just get teary eyed and it has been 6 months.

Had a blow up fight with my mom yesterday about something really stupid, and now I realize my life will never be the same. We have pushed each other away so far I still don't feel like we will ever be able to be close again.

Time has not made it easier for me, it has just made me even more angry at what has happend. I do not know how to cope or when I will be able to. Big plus for her though, she offered to go to support groups twice a month with me at the hospital, but I can't bare to do that cause all I ever do is cry.

Reading others coping techniques may help alot. Thank you

Heidi

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Shock...I never cried. I still have not had a super good cry for myself. After 2 mths...on the day of surgery... I believe I still felt it was happening to someone else. The awful "C" word... "Cancer"...that word was associated with "OTHER" people...not me. It was easy for me to disassociate my body from what was happening around me. I hated the looks I got from friends and family after they found out. I still hate those looks. I'm not sure it's true...but I think I see pity in their eyes. I wish it would stop. I feel so comfortable here. I learn something every day. Thanks for being here to lean on. thanks for letting me be myself...

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