Survivors Fears

[Connie B]

I have been reading many of the posts from the Caregivers, and by doing so, I noticed how all these wonderful people share with all of us, there fears, anger, frustrations, sadness, and happiness of what there loved one is going through and what they themselves are going through during there journey of being a caregiver.

By doing this, they offer support and information to other Caregivers that are going through the same things.

What I also have noticed, (sadly) is very few of the LC Survivors here at LCSC share there fears, anger, frustrations, sadness and happiness of what the Survivor is going through during this very difficult time of our lives, those of us that are living with lung cancer.

I'm going to throw out here that maybe we Survivors can share with one another some of our Fears during our journey of what it's like to be the person that is living with lung cancer.

Maybe we can start several threads on these issues that would lend support to other LC Survivor.

I have to go back 11 years from when I was first dx.d with LC, but I know that I have had and still do have, many, many fearful moments from day one with this journey that I can share with all of you. I just need to give it some thought first.

I hope other LC survivors will join me in sharing with one another some of our fears of what it's like to be living with Lung Cancer.

[Don M]

I rather think he is thinking about the birds.

Anyway, I am on my third cancer. I sometimes think I kind of hold my cancer at arm's length. Although I have had it 3 times, it has not completely invaded my body. It is just kind of chipping away at me.

I tell anyone who asks that I am not afraid to die, I just don't want to do it now.

I had some apprehension about taking alimta, because of the problems others have had , but so far it is ok. I am 3 days out from my first infusion.

Sometimes I get a lttle angry and sad that my pulmonary capacicty has been diminshed to the point that I am at now. But I still have an enjoyable life and consider my lifestyle good and worth conserving.

I suppose my greatest fear is that I will have another recurrence, but I still remain hopeful that it will stay gone longer than a year this time.

After my third recurrence, I accepted the possibility that the cancer could eventually kill me, but I did not dwell on it. I just went on to my next round of treatment.

I think I may have more angst than in the past when my scan times roll around until I am at least a year out from my last recurrence. If I can just make it past a year...

don M

[Connie B]

I remember when they told me I had LC all I thought was, (I'm going to die). This fear was like nothing I had ever experienced in my life. I was obsessed in my world of thinking I am going to die shortly. Nothing else went through my mind other then I am going to die, I am going to die.

I thought that way because my dad, mom, and sister and some of our friends all died from lung cancer, so I KNEW I WAS GOING TO DIE! This wasn't a disease you lived with.

Like Don, I don't think I am afraid to die, but then again, I haven't come to that part of the journey just yet. I know I say I'm not afraid to die, but I think in some ways, maybe I am. Like anything, I see the good and the not so good in dying.

Living in fear after I was dx.d with my lung cancer had become a way of life for me for about 2 years after I was dx.d. Every little ache and pain I had, that FEAR would flare up and I always felt like I was taking 10 steps backwards, and it felt like I couldn't move ahead. When am I going to stop being afraid? I hated living in fear day in and day out.

How will I know I am near the end? How will my family deal with all this? How can I spare my family all this pain and suffering that comes with being a lung cancer caregiver? How is my husband going to do things without me here? How are my kids going to go on with life when I die? How is my husband going to take care of the house, bills, pets, wash cloths, and work his job without me here?

Then the otherside of this is, I don't want to leave my husband, and I don't want to leave my kids. I want to see my kids get married and have children. I want to be here to help them when they need me. I'm really not ready to die.

Every time I had a checkup, I was so scared of what my Onc doc was going to tell me. I would get all worked up two weeks before the checkup time, and make myself sick, and sad, and so scared. I was short with my family and friends. The fear was overwhelming.

Oh Good God I am giong to die! I remember saying that over and over and saying that out loud to see if it sounded different to me either way. It didn't, it scared the hell out of me know matter how I said it or how many times I said it. I was only 43 years old and I didn't want to die. My sister was 43 years old when she died. I was so scared.

I remember my husband walked around for the first few weeks after we learned I had a mass on my lung, and how he kept saying "this can't be happening to us, what am I going to do without you?" So even HE thought I was going to die. WE didn't know any better back then other then when a person gets lung cancer, they die in a short amount of time.

My fear wasn't being a lung cancer survivor, my fear was I was dying and this was the end.

When my mom was dx.d she use to get kind of spaced out and just stared out in space. I never knew what she was thinking at that time, but NOW I know what was going through her mind. She was scared and didn't want to die, and she said that to me only one time. She never said it again but that one time. I've said it a million times, and no matter how many times a person says it, it still feels the same and the fear never goes away.

I don't have that overwhelming fear today like I did several years ago. Maybe because I am older, or maybe because I have looked that overwhelming fear right in the face and when I did that, I made my mind up right then in there, that it was no longer going to run my life for me. But I'm still not ready to die just yet!

I'll share more later. Sorry this got so long.

[kiams]

Hey Gang,

I have not posted in a long time, but I've been lurking in the shadows. The topic of fear struck a chord. I've been having a particularly tough time dealing with it lately. I to am starting my third battle with this beast. Last month I had my follow up scan. The was a shadow on my right lung that my surgeon was concerned about. He had me do a PET scan. It came back negative. He was concerned that I might be having some blockage due to scar tissue, so he did a bronchial scope. He said I had some inflamation, but he did not see anything that caused him concern. Nonetheless, he took a couple of tissue samples while he was in there just to make sure. Unfortunately, they came back positive for cancer. I met with my surgeon and oncologist. They both agreed that because there was no evidence of other spread that I had a localized recurrence. My surgeon recommended taking out the rest of my right lung. It said it would be a risky surgery because he had already been there two times, and I had radiation to the area. He was confident, however, that he could pull it off. I have tremendous confidence in my surgeon and have developed a very close relationship. I was willing to put my future in his hands.

Then things took a new turn. The Friday before my surgery I went it for my pre-op appointment. My surgeon told me that at the weekly lung cancer tumor board meeting he had revied my case and the radiologist had noticed a small nodule on my back right below the incision from my first two surgeries. My surgeon did not think it was anything, but he told me he wanted to check it out before going into my chest. He said if it was cancer, he would close me up and not remove the lung. On the day of my surgery I woke up in the recovery room at 10:00am, not late in the afternoon as I had expected. I knew it was bad as soon as I saw the clock. The nodule on my back tested positive for cancer. I was devastated. Was the fight finally over?

The next day I met with my oncologist and surgeon. They told me they were convinced that the tumor in my back was a "drop met," resulting from dropped cancer cells from one of my previous surgeries, not a normal metastasis. Given its location, an inch below my incision, and the fact that the nodule was small, encapsulated, and the surounding margins were clear, they were both convinced that it would be too strange for my cancer to spread to that spot and not any where else. They told me they wanted to wait two months, re-scan me. If it all looked the same, then we would do the surgery. In the meantime, they were going to put me on Tarceva and see what that did.

I left the Cancer Center in much better spirits. My wife and I had a nice lunch and planned a trip to Disneyland with our ten year old son. I was back in the fight and still feeling like I would beat this thing.

For the most part I have remained positive throughout this experience, but the last two weeks have been particularly difficult. We had a great three days in Disneyland, but since then I have been having periods of intense grief. I would think about my son growing up without a father, and my wife without a husband. I've been having a difficult time keeping it together at work. I'm a lawyer who is supposed to be a tough, thick skinned litigator. My work use to help me keep distracted, now I'm finding it increasingly difficult to focus.

I'm still confident I'm going to beat this menace, but it is getting more and more difficult each day to stay strong. These next couple of months will be long ones.

[dcorey33]

Reading all of your posts, really hits me. I am 4 weeks out of surgery (right lower lobe removed). I am feeling all of what you are explaining (as far as fears go). I have been doing a pretty good job at keeping it under control. I have a young daughter and my husband and I have really tried to play it down for her sake. However, sometimes I look at her and I have to leave the room. I am really good at keeping things locked up tight. I am some what of a control freak. I guess what I am trying to say (very poorly at that ) is I can not explain my fears in a coherent way, and I know it is driving my poor husband crazy. I am at a loss...

dani

[ursol]

My fears are much like Connie's. It's only been about five weeks for me but the fears have been so intense.

The first week, I was convinced I would die...everyone dies from lung cancer (that is what I believed), no one can live with this type of cancer. I didn't realize my own cousin in Venezuela has stage IV NSCLC and is on year six. He called me immediately when he found out and told me I was not going to die and to get that out of my head.

So I go on each day, get up, wash the leftover dishes, get the kids up, get ready for work, work all day, come home, clean, cook, do laundry and try real hard in between Dr. apt.'s to pretend like I'm fine. But what I don't talk about with my husband is my real fears. Why I don't want to die:

-How will my husband afford the lifestyle the kids are used to and will he just sell the house and move the kids to the city after I worked hard to always stay in the suburbs.

-Will they learn the value of going to college if I'm not here to guide them, since no children in my husband's family have ever gone to college.

-Will he be frustrated and move them out of the country to his homeland where their opportunities have limits and women are still treated as second class citizens.

-Will he marry some crazy woman so my children will be living with the stepmom from hell. But at the same time, I don't want him to grow old alone.

-will anyone tell the baby about me and how much i loved her.

-Will someone throw away all my personal belongings and then when my children are older and are looking for them, there is nothing for them.

-how much influence will my inlaws have on my children's lives.

I think of all these things and think that I am being foolish but many nights these are the things that bother me. I begin to write things down..."journal", "notes within book jackets", "messages behind picture frames", "inventory lists of belongings", "instructions for my husband such as the appropriate way to handle "senior Prom" type things" But then I stop because it will take too much precious time and energy to do all this, work, clean, cook and go through treatments.

So then I tell myself "nope, I shall not die, it's not in my plan so it can't happen". I absolutely need 18 more years and that's what I'm begging God for.

lilly

-

[Snowflake]

I've found that each day quiets some of the fears and brings new ones. When I was first diagnosed, I wasn't all that educated on lung cancer - after all, I NEVER thought it was a possibility since I was a non-smoker! I guess when I was told the diagnosis, I kinda went into "brain shock" and it all became a dream of sorts where I was numb and just going through the motions.

I was afraid of the surgery - couldn't convince me that someone could live with less than a pair of lungs...and then I talked to someone at work who had a whole lung removed when he was 14 for some reason or another and he runs marathons! Hmmm...

Had the surgery, have never felt so much pain in my entire life, putting child birth to shame. I was in the hospital nine days and was afraid to go home! I felt the care I was receiving was keeping me going. I also was having other issues that had me worried about what else was going on in my body.

I went home. Didn't want to go to sleep, I was afraid I wouldn't wake up. THAT fear didn't go away for quite some time. I stayed awake at night until I just dropped off, exhausted. I was sleeping on the couch, anyway (recliner) and no one really knew about it, just attributed my sleepiness to the pain medication I was taking.

Eventually, I tried sleeping in bed and had to have about ten pillows to not "gurgle". Any position hurt and I was afraid the pain would always be a part of my life.

I went for a second opinion that knocked me on my butt with a recommendation of no treatment. My first oncologist had plans of radiation and maybe a trial...welcome to the hell of Iressa. One thing about a new drug, the long-term side effects are not known. If I live 100 years, I will probably still be feeling some of the after effects BUT, I will be alive. Also, Iressa led me to start investigating on the web and I found this wonderful board of SURVIVORS, not just statistics.

For the first two years, I was sure the cancer would recur and I would die instantly (and THAT is NOT logical, is it?). I still have those moments when doing longterm planning - like what college my son will attend.

There are many personal fears where my son is involved, one being how HE would cope. I feel my husband would be fine, but my son would end up with his father through legal channels. Total lifestyle change...

...and I don't want to die.

The more long-term Stage IV survivors I see on this board, the more my fears are lessened. Frank and Lucie are my heroes and give me hope that even if it recurs, it's not an instant sentence. Of course, I'm still a nut case at scan time...

It's still always in the back of my mind, but the monsters don't get out to terrorize me as much as they used to.

One BIG TIP I'll share is the need for counseling. I'm a person who holds everything in, but cancer is just too big to hold in and cap off. It continues to bubble and boil and explode all over you emotionally. Find a good counselor and go regularly to talk through all the emotions you don't want to share with your loved ones (like being scared). Even tough people get scared, it's learning how to deal with the fear that gets you through.

Thanks, Connie, for the prod.

xxoo,

Becky

[Debi]

Connie,

Good idea for a post, and I can relate to all the answers..

I have so many fears, and I have never been quiet about them. My primary fears are connected to my son, and leaving my little guy at 7 years old (he was 3 when I first found out!). Like Snow so gracefully put it, if something happened to me, my son would have a total lifestyle change. I'm afraid that he wouldn't grow up the best way, and end up being less of a man than he could be. That fear is with me daily. Every year that I live is a bonus, I hope that I will last longer in his memory, and even if I'm not here, he'll remember a piece of me and who I was.

I know this sounds silly maybe but another real life fear is finally finding another job and losing my life insurance which is through my employer. It's a fairly substantial amount that I have had since pre-cancer, and I imagine leaving my job and a week later being diagnosed with a recurrence. I need to have it for my children, with me not here it is the only security I can provide for them, and it's important to me. My daughter could buy her house, my son would have it to start life with when he's older. I want to know that even if I am not here, they are 'set'. So I guess my fear is that I am trapped in this job by one more thing, and my fear is that if I do walk away from it, I will have made the wrong decision.

And of course, the fear that the cancer is back. I posted once before that I think of my cancer as a serial killer that leaves you for dead, broken and destroyed, in the middle of nowhere. I spend many of my days, holding my breath, listening for the car engine, the tires creeping along the dirt, some quiet killer looking for me, coming back to make sure I am dead. That's the level of fear I feel at any given time if I let myself. That is my cancer. Ted Bundy making a u-turn in a Volkswagon with no inside door handles.

The other fears I have are various boogeymen. Every holiday I put away the seasonal decorations with care, thinking that maybe I won't be aroudn next year. I also worry, like Ursol, that my daughter won't get what she needs to get from the house, that my son's father will end up having a giant garage sale with all my belongings.

I worry about who will take care of me if it comes back, and who will take care of my son during it. My daughter has 5 children, all under 8, and lives in a tiny house. And I want to die at my house, not as a houseguest somewhere, I want to die surrounded by my stuff (the pre-garage sale stuff ). I think of buying a gun, so that I don't have to worry about who will take care of me, when and if the time comes. But, of course, my insurance has a suicide clause.

I have a collection of possible scenarios as far as a recurrence. I remember folks from here, and the various ways that they ended up leaving us. Sometimes, when I have to cough and cover my mouth, I have a second where I'm afraid to look at my hand, afraid that something happened somewhere, and its filled with blood. If I get heartburn, I wonder if its actually a tumour, silently eating away at my esophagus. A headache is instantly a brain met. I remember Bobmc, who went in an instant from a smiling survivor on that damn rope bridge in Costa Rica to a dying man. I will always have that picture of him on the bridge in my head, its somehow imprinted on my eyelids. I remember all the others, some friends, some acquaintances, I remember them and smile mostly, but on dark days, remember the way they left and sometimes, the absolute suddenness of it.

All that said, the fears really have gotten better, I don't want to leave the impression that my every day is spent with all of the above. The fears are there, they just lay dormant most of the time, until they find a reason to come out (like this damn post! ). I am lucky that, at least for now, these are fears of something that could happen. And about the birds - yeah, sometimes you have to rest your brain and marveling at life is a good way to do it. Sometimes, watching something as simple as a bird, makes you feel that there are more important things in life than yourself, and that there still is beauty in this place. I know myself, that there are days that I find wonder in simple things that I have seen my whole life. It's not something you talk about, it just happens.

Anyway, sorry for the length Connie, but you asked!

[nonni]

First of all...Connie ...great thread....thank you

Ok..so let me stick my 2 cents in here...Oh God...how do I start....Fear??...Who me???...Nah!!!!...yeah right...I am the biggest 'chicken face' in here...

You all know I am a Christian woman but by all means certainly not a 'holy roller'..been there ...done that ...heard that and the whole nine yards....but I positively felt like God was with me ever step of the way...

I like to think that I HAD LC not HAVE it...Before my cancer ..if I even hear the word I would be balistic...I just knew I could never ever handle it...but God showed me differently....First off not one doctor said for sure it was cancer only suspicious...so I really didn't know it was LC until after the operation....by that time it was done and over with...(I hope and pray)

I realize now...that the surgery althou not a piece of cake...was the easy part....The anxiety and the fear that came after was devasating...I am 22 months out from surgery and it is getting better but by no means leaves my mind for not even a day...wake up with it in the morning and go to bed with it at night...sigh

You all have 'written' for me...I have most of the same fears ...fears about leaving my family..my husband..my son...my grandson...what would they do with out me...Of course life would go on...but just thinking about it brings tears...I know death is inevitable and not just 'us' but everyone has the same chance of 'dying' as we have...who is to say...but the 'Man upstair's"..but still so scary..

I fear this beast coming back and it drives me wacko especially at scan time...Someday's I say to myself ..."the hell with it..what will be will be and I can't change it"...Other's day's out comes the 'zanax'...

I love and admire the people in this group...you are all so brave and courageous...and so man times that you all don't know of that I come here for support and feel so bad when I read posts with some of you dealing with so much more than I and then comes the 'guilt trip'

I will be forever greatful for my outcome and the fact that I am still here...I believe God has a plan for all of us...and I have to hold on to that...HE will only gives us as much as we can handle...

Another thing I hate about this whole thing is hate for people feeling sorry for me...when they look at me...I am wondering what are they thinking...I know they are thinking..."oh this poor girl...how long does she have'...I know before my C ..when I looked at someone who had cancer I looked at them diffently...thinking..."how brave they must have been to go thru that...I could never do that"...Well I did!!!!..thank you Jesus....

I know I am just rambling here..but you know what?...it feels good to get my thoughts in writing...never ever told my family my fears...I want them to think I am fine..physically and emotionally...You are the greatest cyber friends that I have ever met...I love you all and pray for us all every single day and night...

Ok..I said I would put my 2 cents in here and it looks more like 4 cents...sorry for the long post..but thanks for listening...hugs to all...PamS/

[Darrell]

Do you get frustrated at the person who drives slow while you are in a hurry?

Since I've been NED, I'm that person who drives slow. I'm soaking in everything.

A friend of mine told me last week that I'm like a kid seeing things for the first time.

I'm new to NED so I have no worries or fears. I wonder how long this will last? I hope it lasts a lifetime. I never want to lose this feeling. I've never been happier in my life.

Darrell

[Michael Lewis]

Thanks for a wonderful topic. I have not posted here for some time, but I do drop in and scan messages.

My fears & anxieties are pretty similar to others; leaving my wife of 39 years, not seeing my youngest ( 18 ) go to college, find a good job, get married, have children. There are financial concerns for my wife, but our other two kids are doing well and I know she will always be taken care of.

I guess the one emotion this misses is anger. (Have been told that anger and fear are really the same emotion). I want to see my grandchildren when they are born, want to walk on the beach with my beloved (as we always planned). I want to be able to start projects and do some planning for the future. As an architect, I was paid for my vision, for planning the future of things unseen outside my mind. I do believe that I learned to live there in the future, rather than the present. Today, I have learned to live in the present, hard as it is, sometimes.

Because I remain without symptoms other than tiredness and SOB, others take it for granted that I will live a long time. That's not a bad problem when you think about it, but how far ahead can I plan, with reasonable expectations of completing anything?

I know that the cancer is lurking there and have no idea when/how it will come to hit me. I know I will die from this disease, but meanwhile, have the best of medical care, a fine doctor and a wonderful family.

The way I am handling this today, is setting short term goals which, up to now, have been successful. We just returned from a ten day trip to California for a family reunion celebrating my MIL's 80th birthday. While in our home town, we renewed our wedding vows, a truly joyous event, with my young son as my best man. The ring he held for me will go on his hand when I pass.

Our trip back to Washington was up the coast of California and Oregon, two of the most beautiful of God's creations.

This coming Sunday, my daughter is being married and I will walk her down the aisle. So, the plate is pretty full, but I wonder, after these short term goals are past, what next...?

Fortunately, I'm obsessive and will come up with some project or event to keep the "willies" away.

I'm a recovering alcoholic with seventeen years of sobriety and also a diabetic. Not long ago, I was visiting with my oncology nurse and she commented,

"Michael, the bad news is that you have three fatal diseases....The good news is that you can do something about two of the three." So, I do have some choices...

Each morning I wake up and think, "I have cancer", but somehow I get another day, hour, minute, which I treasure and appreciate. Having cancer has made me a better father, a kinder man, an appreciative and loving husband and has allowed me to fearlessly open doors that needed opening and close doors which needed closing. I think that, had I prepared for the life after, sooner in my life before cancer it would have been an even more extraordinary life.

A reasonable faith in a higher power seems to help many, be it God, or another of the many choices. In the fellowship of Alcoholics Anonymous, we are taught to choose a higher power, a God "of our understanding". I'm glad I chose who I did, because the God I choose to live with is absolutely who I die with.

Michael

..for all those who suffer..there WILL be a cure...

[dadstimeon]

Don't know if I would say I fear lung cancer, I'm the type that fears the unknown. As long as I know I can deal with things. When first told did not think for one minute lung cancer was going to kill me, still don't. I took it the same way when told like any of my other health issues. Did not know anything about lung cancer and when I did research then came the shock.

I try to turn the coin around. I’m a positive person over all, negativity breed’s negativity. Not dieing of lung cancer, living with it. Focus on what I can do, not what I can't do. I've learned to adjust as I go along. What might take a healthy person a day to do will take me a week to do but I still can get it done. I would say I’m mostly independent as far as needing help, but when I do need it my wife, daughter and best friend are there for me. I try to put things into perspective, what is really important and what’s not. To me everyday routine tests, procedures etc are not the end of the world. What goes on in everyday life is not the end of the world. Never felt sorry for myself, said why me or took it out on anyone. To me that's a bunch of BS and I waste of time and energy. I'm still the same person I always was. My emotions, my frustrations, my feelings, my fears come from everyday life, not lung cancer.

Like everyone else I too worry about my family and if something did happen to me how will they go on. We are as prepared as we can be, because we talk about it and yes we laugh about it. Now is the time for everyone to say or do something. Well like anyone else who has lost a love one, life goes on and people as a whole are survivors. My father died when I was 9, he was 40. My mother had to raise 3 kids, we had to move to a project and she had to get a job at the time when there were not a lot of women in the work place. We all survived, we grew up to have kids, who have kids. To me life is for the living, death is for the celebrating of ones life, to keep them in one’s memory and never forget them. I would hope that no matter what happened to me that all my family, friends would spent about 15 minutes pissing, moaning, groaning, let the party begin and then get on with life.

I can’t control everything that happens in life but I can control how I decide to do things and try to live life the best possible way I know how to. No one can do it for me. Its all perception and how one looks at things. Like my parents taught me, no one is guaranteed anything in life, it’s what one make’s of it and what one is going to do with it.

[Shar]

When I was told I had lung cancer almost 2 years ago I was just shattered. I went through all the emotions and one that has never gone is fear.

I have had so much success with Tarceva and yet I worry when it will stop working for me. I go to each scan terrified, thinking is this the end for me and this so simple treatment. Having already failed with my first chemo treatment I don't want to face that again. I am so grateful for what Tarceva has done for me and I know that it has given me longer to enjoy life than I normally would have had. However, that nagging fear never leaves me.

I am scared of leaving my family, I try and picture myself at my kid's weddings. I would settle for knowing what career they end up doing, I try and focus on milestones that I believe are attainable. My son is almost 15 and my daughter is 12 and I cannot imagine not seeing them grow.

With this diagnosis has come so much stress on my personal relationship. We feel cheated that chances are we won't grow old together and that I am the one who has changed forever. I have different goals in life now. Gone is the free spirit I once was. My partner now has a totally different person to live with and I am to blame for that.

My fear never leaves me and I doubt it ever will. I am scared of what the end will bring and how the people around me will cope. For now I try and block it out and get on with my life, but it is there always.

Sharon

[terriep]

Oh, wow. Here it comes. I thank you, Connie for this thread as well. I just said to my hubby the other day - perhaps I need to talk to someone. I guess you guys can be "it" right now. I know it will be 4 years since my diagnosis, but it seems like yesterday. You know, I have to admit when I started a little coughing yesterday, I was frightened to death that I would cough up blood. It was just a tickle - when does that fear leave?

I have fears as well with the scans, and Drs. Had to work through those last year with my mom and her NSCLC diagnosis and surgery. When my neighbor approached me yesterday for help and direction, now possibly facing these fears - WHAM - back again!

Also, though, I still harbor a lot of anger with my doctors - and yes, there were multiple - who never listened when I complained of symtoms, just handed me more meds. My husband, well I don't know if he has let that go as well. On the practical side, we spent thousands of dollars on medication/treatments. My kids always knew mom wasn't feeling well - I mean for many, many YEARS - couldn't ride with a car window down or open a window in my house - was being told it was in my head. That leads me to the GUILT I feel. I know, as my hubby tells me, that I assume a lot of guilt. Maybe I could have prevented this. My kids never had a mom who wasn't "sick" from something. Endless colds/bronchitis, reactions to antibiotics, back to the doctors again. Maybe two, three doctors weren't enough. I was so convinced it should be, busy with my young family, we struggled so to make ends meet.

It has effected us financially, and I know my husband feels trapped on his job because we will be paying off debts for years. Plus the health insurance factor for myself and the kids.

Don't get me wrong - there is not a day that goes by that I don't thank God for the miracle that is my life. I was blessed by friends and family - strangers were at my door to help us out. But, if we are being really honest here, right now, my grief for what I have lost and my guilt seem to be weighing heavily on me.

You know, I started to write this yesterday, and then stopped, and started again and stopped. It is so hard for me to put this out there, so thanks for listening sorry for rambling on and my how the tears do flow as I share this.

[TracyD]

Wow, where to begin. I was surprised to come across this post just this morning because all of these issues just came to a head for me over the holiday weekend. My husband and I just spent a night without the kids for the first time since my diagnosis three months ago, and instead of a nice romantice evening it turned in to me crying my eyes out over so many of the things I see being written about here.

First comes the guilt. I feel that my families life is changed forever. We can't go back to those carefree days of thinking that Charlie and I are going to grow old together and watch our children graduate from school, get married, have families of their own. Our children know that we have this "thing" hanging over our heads and nothing at home is the same. What is hard is that we haven't even told them just how bad it is, I know the older ones would be sick with worry. I don't tell them that mommy's tired, or mommy's side hurts, I don't want them to be thinking about my cancer all the time, like I do. All of this is my fault and I feel just so damn guilty.

I am angry at people for asking how I am but not really wanting to hear the truth. I can see their eyes glazing over as soon as I mention my fear about a new ache or pain, or about the stupid rash I have to deal with on a daily basis. No one wants to hear that I'm afraid of dying, so I just say I'm doing pretty well, thanks. I have friends who think I should somehow just get over it and "deal with it". I think I'm doing really well, but pardon me if I sometimes get down and don't want to be cheered up. Just because I don't want to go to a party doesn't mean I'm running away from life, it means I don't feel up for going to a party.

When I say that I'm afraid of dying I think that's not quite true. I'm afraid of leaving my family, of missing all of their milestones. I don't want to cause them any pain and I know that if I die it will cause them so much pain and grief I just can't bare it. My 11 year old daughter was upset one night recently when I was putting her to bed. When I asked her why she told me that she is worried that if I die and daddy gets remarried, what happens if she doesn't like her new mom. WOW. I hadn't even gone there yet. No child should have to worry about this, and it's all my fault.

Today is a new day and I'm feeling better. Most of the time my attitude is great, I do plan on being around for a very long time and I'm enjoying life to the fullest right now. But sometimes the fear gets a hold and it's hard to shake. Oh yeah, I'm angry that it seems that for the rest of my life this is what my family has to deal with. It's so not fair.

It's good to know there's a place to come to where people will listen to how I'm feeling.

Thanks for sharing.

Tracy

[Frank Lamb]

Connie this is a great idea.I think we all have many fears.Mine believe it or not are almost daily.Every day something brings fear into the picture.I combat that with appreciation and gratitude of all the good things.No matter how bad a given day is,there are also many things to enjoy and make the most of.

Like most of us I tend to keep bothersome things couped up inside so as not to worry or trouble the others close to me.I guess that is the old be tough and strong Marine Corps training and set a good example for others.Well for those that watch TV movies a lot here is a secret.Marines get scared too just like everyone else.I have always found the best remedy for this is facing fear head on.Usually it seems much less intimidating when you do this.

In addition to taking notice and finding joy in so many of lifes treasures (often taken for granted ) and making the most of each and every day,I also feel there are times when bringing bad thoughts,fears,etc.out in the open are a good thing to do.This is where the role of caregivers and friends and loved ones is so important.You don't always need to have an answer to the patients concerns.Just listen and care.This will help the patient to overcome a lot of what is bothering,scaring,or troubling them.

As I have said many times in posts,I really wish I had not gotten lung cancer,but if it had to strike in my household or family I would rather it be me than my wife or children.

I for one tip my hat to all the caregivers,family members,and loved ones who fight this disease along side us.

I also feel that even tho a cure may not be in the immediate future,lung cancer becoming a treatable disease is getting much closer.Lets all hang in there until that happens.

[Kasey]

I have come back to this thread many times since Connie first posted it. Initially I felt I would not respond, but after reading all these brave responses.....well.....here I am too!

No fear or anger. Deep depression, immense disappointment, and overwhelming guilt.

Guilt ~ Fred's first wife died of cancer when he was a young man of 36 leaving him with 3 young children. Here we are all these years later and because of ME he must deal with it all over again. So many women after him and he picked ME. All I could think was......he SHOULD have picked someone else and be spared the agony of cancer once again. The children.......wow.......having another woman.....one they have come to love so much..... leaving them again. Well, the guilt just overtook me.

Depression ~ Doctors here gave me no hope beyond just a few months to live. In my mind I felt I had LOTS yet to do. I was never in denial, but somehow felt this was something that OTHER people heard......not ME. I sank into a deep dark hole in which I would stay for several months. Never felt fear ~ just the desire so much to continue living and I felt there was no hope of that happening.

Disappointment ~ Like so many I think, some friends........one CLOSEST friend who I thought would BE THERE for me was not! She couldn't understand why I didn't feel like attending the theater since I had season tickets, or the breakfasts we had each week, or the movies, or anything. She just didn't GET it and neither did a few others. It was one of those things.........let me know what I can do. Well, I did on two occasions and she just couldn't come through. Deny me once shame on you. Deny me twice, shame on ME. I never asked again.

Now, I no longer agonize over how long I will be here. I am here much longer than many have been. Sometimes that adds to the guilt factor. I worry about leaving Fred.........having that happen to him once again. Only this time he is no longer a young dad with 3 kids. He is retired and wanting to enjoy life with the second love of his life.....watching me love his children and grandchildren. So today I feel like a lucky woman. Do I get depressed still? You bet! Am I disappointed? Not any more. Those few friends are my 'fun' friends now. As long as we don't talk about cancer or scans they are around. I have so many others who have been there and continue to be. What about guilt? Oh YES!!!! BIG time. I am NED at the present time. And I feel an immense amount of guilt about that since my niece, Tracy, is in the early months of dealing with this insidious disease. If bargaining with God were appropriate....well.........bargain I would that she be granted many more years than even I have been given so far to see all the things a mother should see.

As some of you know, it is due to this site that I am here today. So on top of EVERYTHING else I am full of gratitude for each day LCSC has afforded me.

Each day I pray for a cure and for all who find themselves here.

Love,

Kasey

[Geri]

I have read and re-read this thread and tried to put my feelings into words.

When I was dx it didn't occur to me that I wasn't going to make it and not once through it all did I think I was going to die.

However, that being said, the further I got from dx the more I worried about scans and tests. During my tx they were just something done to check on my cancer. As time went on, my tx were finished and the tumor was gone and I started to get nervous about tests.

I could only imagine that some little bugger had been hidden away and had escaped and was growing. Again it didn't occur to me that I wouldn't make it if something was found, I guess I was just sick of being sick.

What cancer has done to me and my family is take away our peace of mind, my husband can no longer take it for granted that he will spend his retirement years with me, I can no longer be sure that I will see my grandchildren. These were things that we didn't think of before, back then there was no guarantee of a long life either but now we no longer assume anything......we take it all as it comes and make our plans and hope for the best.

This is not my most articulate writing to date, somethings I can't just find the words for.

Geri

[blaze100]

It's been almost 6 years since I was dx'd but I still have fear although not as bad.

I start to get scared every evening when the shadows outside begin to grow dark. I hate twilight time.

I used to have a recurring dream that my hand was on fire and flames were slowly spreading up my arm. I was standing inside a circle formed by friends, family and doctors but none of them could help me put out the fire. I begged them for help but they just stood and watched in horror...my Mom, my Dad, my husband...nobody could help, and it hurt like hell as the flames slowly inched up my arm. I knew it was just matter of time before the fire totally consumed me.

Well that's one of my tamer nightmares. I'll never forget them, but enough is enough. It is too painful. Barb

[rvillella]

I've been back to this post so many times now I believe I know most of the replies by heart. Mine now is fear. Fear that it will come back, fear that I'll never be off the oxygen, fear that the next bout of pneumonia will do me in. Fear that the next pain is the one that will mean it's back. All the other emotions have come and gone various times since this started but Fear is still the biggest one following me.

[myrnalu]

When I was first diagnosed I was more than scared.paranoid was more like it.I have always been afraid of Drs.Hospitals,etc.I just knew I was going to die and was afraid of dying too.Still am.I have grown children and Grandchildren but they still need me and I need them.

I was scared to death of all the tests too,broncoscopy,pet and cat scans,didnt know what to expect.

I still get scared at scan time,have a pet scan next week.May be getting surgery and am scared of that,but yet scared not to.

Its constant fear but thanks to all of the people on this board it does get easier.Special Thanks to JimBen who gives me a cyber kick when I need it and tells me I can do this.

[ursol]

Someone mentioned dreams and it reminded me of a fear I have had recently..everyone around me is going to church including my husband who has never ever gone to church with the exception of weddings and baptisms. My brother in law lit a candle for me in Fatima, Portugal. I have numerous blessed articles/candles from a famous brazilian church, My aunt brought me blessed articles from a church in rome and my best friend is bringing me holy water from the Church in Italy where Padre Pio was from.

My fear is that everyone is going to church on my behalf except for me. I'm now scared to death that God will be angry with me and I told my brother to get me the schedule at my church for confessions because I thought I should go to confession first. Have not done that since my Wedding 14 years ago.

It is soo stressing me out that two nights ago, I dreamed that I was at the Vatican and could not find any English speaking priests available in the confessional booths. I do pray all the time, I just don't go to church. This fear will send me there, I don't think I can keep ignoring it, I will have to find the time to attend Mass.

Lilly

[purplelady47]

I've never posted in this part of the group because I didn't feel like a survivor. But recently I realized that I am a survivor - it's now seven months since I was diagnosed and I've gone from thinking "I am going to die of lung cancer" to "I am going to live with lung cancer". I have to admit, that without this board, I would still be thinking my initial thoughts.

I have the typical fears that everyone has expressed here - I worry about the unknown, which I never worried about before my diagnosis. I worry about my children and how they are coping with my illness and how they would cope if things don't go well. I worry about how our lives have changed and how they might change. Of course, I have major concerns about progression - who doesn't? I often wonder how I would handle this, especially after seeing the strength and courage of so many of the members of our group.

Right now, at the 7 month mark, I am dealing with my grief regarding the changes in my life - I am in "mourning" for the loss of my life as it was and I feel I am in the process of living and celebrating the "new normal" life. A few weeks ago I looked up the stages of grief and reviewed them - they are denial, anger, bargaining, depression and acceptance. I couldn't pinpoint where I was at and I did some further reading. I found a good definition of grief "the total response to the process of change" and the stages of this definition of grief are:

T - to accept the reality of the loss

E - experience the pain of the loss

A - adjust to the new environment of the loss

R - reinvest in the new reality

I feel that I still working on accepting the reality of the loss of my old life and I am adjusting to the new life. There are some days that I am a bucket full of angry because of my lung cancer. This surprises me, because I've not been an angry person prior to my diagnosis. In fact, I was quite the opposite. So there are days when the anger flares and I cycle into it. These days are quite debilitating and I really hate them. Although I hate them, I know that I must deal with this emotion - it has taken me many years to realize that I must feel my feelings and not ignore them. If I ignore them, I know they will come back and bite me in the butt later on down the road.

I am trying to look at my anger as a very healthy sign while reinvesting in my new reality. I am learning to like my new reality - this too is a process that takes some time. I've stopped comparing the old normal to the new normal and I've found some of the inner peace in my life that was so lacking since the day of my diagnosis.

I've never been one for making long range plans. Since my diagnosis, I have had difficulties making short range plans. At first, my short range plans were in three week increments - they revolved around my chemo schedule. Now I am in the 3 month short range planning stage, which is my follow-up schedule. This is working better for me than my 3 week short range planning schedule.

I see my oncologist in 2 weeks and I am going to ask for a prescription to help with the emotional issues I have been experiencing. I don't want to get bogged down in all this grief and I know that I need some help.

I am not the same person I was December 8th (the day before my diagnosis). Even with all the emotional stuff, I still like the "new" Pam. She's learned alot since that day and is slowly becoming the woman she longs to be.

I have lots of living left to do. Cancer didn't change that.

Pam in FL

[icbn]

My greatest fear is for those I leave behind not being cared for financially. I spend my time trying to insure their future provisions.

My personal fear is that my pulmonary capacicty will not get any better than now. I keep pushing myself to do more and more. I can't cut my yard (push mower) without stopping a couple of times gasping and struggling to breathe. My yard is not that big either.

As one exercises the body responds and becomes stronger. Then the exercise gets easier and easier. But, like with the grass cutting, everything is getting harder with more SOB. To me this means I'm working against my body.

Does this change?

[Connie B]

Does this change? Sometimes it does and sometime it doesn't. But, I'm thinking your still healing from radiation and your treatments. And it took me a good year after treatments before I noticed the SOB was a little better. Then the next year it got better yet, and so on and so on.

It REALLY TAKES TIME!