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What if a person isn't doing everything to be as healthy as possible, isn't feeling committed to staying alive at any price, isn't feeling proud of how they're coping with having cancer?

I'm not the strong, brave, heroic, inspirational, gracious cancer patient we all hear about.  I'm 64 and a two-year lung cancer survivor.   My cancer experience has been disheartening to me.  I know I'm supposed to feel "lucky to be alive". Instead, I wonder what my life has been about and whether I will choose to live the rest of my life with purpose and dignity or will merely fritter my time away.  I'd like to think I would use my time well, but I don't have a plan or a focus or a will to set goals I can be proud of.  I'm ashamed that I'm squandering a life that other cancer patients are praying for. 

 

Since I probably wouldn't verbalize these thoughts to most people I know, I'd like to use this support forum to explore my real feelings. Maybe readers can be patient with me and at least not feel insulted or disrespected by the reactions I'm describing about my own cancer experience.  Maybe some might be willing to share their similar feelings of shame and disappointment.  I feel very alone in my thoughts; I can't verbalize them without sounding ungrateful to my current support system.  If you feel like criticizing me, go ahead.  I do plenty of that myself, but I'd like to be remembered some day for having handled my cancer as well as so many brave souls.  I want so badly to face up to my challenges in better ways than I’ve managed so far.  Maybe you can help me.

 

My thoughts are with ALL of US.

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I think your feelings are perfectly natural. I've also realized that I can't do many of the things I could in the past. I also have to understand that it doesn't make us bad people because of it. It is hard to just be thankful for being alive after our war with the dreaded disease. We have to do what we can do and not expect too much of ourselves. I often wonder why the good Lord had chosen to keep me here when so many have not made it. I am sure he has a reason. That reason will reveal itself in time. Sites like this one are a great help because we can talk to people who know what we are going through,  have gone through what we have gone through and what to expect in the future.  Good luck, God bless and keep the faith...

David

 

Thank you, David.  Your post was very accepting and rang true with many of your comments.  I'm aware that I feel survival guilt.  Yes, I was a smoker for about 50 years and actually quit only about 3 weeks before my ca diagnosis. I had a lobe removed and was found with one lymph node involvement, so went from a 1B to a 3A stage right away.  Had 3 months of chemo with few side effects; nausea was no more than like a slight car sickness. I've always liked different foods, so I could always find something to eat even if not on the cancer nutritional recommendations.  My worst side effect was a horrific tiredness, but that was managable since I'm retired, as is my husband, so it wasn't hard to just sleep as needed.  (I'll talk another time about what that inactivity created.)  As for the cancer, I'm being screened every six months; my oncologist says I've done better than he expected and that with each screenig test, it looks better and better for a "cure" after 5 years. 

 

My survivor guilt comes from feeling like I've had it too easy compared to other people.  I go for cath flushes each month and continue to see people who look ravaged by their disease.  Why have I been spared the same horrors?  I certainly can't whine, but I can feel miserable about not trying to make the best of what I have.

 

You're right; I already find comfort in being able to express myself here.   Cancer can be a very lonely experience.  People are all around when you're first diagnosed; but, as time goes by, most go on about their own business and you're left alone with your day to day personal dramas.  I was a hospice administrator and social worker for more than 20 years and had learned alot about what most people go through.  Still, sometimes it's as if I have no background to draw from.  And as much as I could see various coping styles, I used that learning to make me a better hospice clinician and did not use them to make me more prepared for a life-threatening illness myself.  I should have known about building support systems, assuming control of one's situation, or allowing myself to openly grieve the future I had anticipated.  I'm expecting to survive but there's got to be more of a reason I'm being spared so far.  As of now, I don't feel I deserve the space I'm taking up, and especially not when I see folks who may not survive their treatments but have such rich lives.

 

Gotta go; I'm boring myself with my self-centered yammering.  Take care all.

Tori

Hi there, I'm not a patient, I'm a caregiver to my mom, who's been battling LC for over 5 years. She felt much the same way after a year or two- she wouldn't do physical therapy, wouldn't eat right, and generally acted like she didn't care. She felt like "it's my life and I'll spend the rest of it how I want, and I don't want to do physical therapy." It used to frustrate all of us. But now I look at just how much she's literally endured- surgeries, chemo, gamma knifes, radiation, etc. And I think she's a survivor no matter her attitude. I know we are lucky to have her survive this long, and there are many others who aren't as lucky, but cancer is each individual's and each family's own path to walk as you choose. So don't beat yourself up. If anyone has the right to feel disheartened, it's a cancer patient. Be easy on yourself. There are many who probably wouldn't be doing as well as you are. So, give yourself a break, that's what I say!

For years I've said that noone can define "quality of life" for another person. And, each person redefines their own notion of "quality" as time goes on and as life circumstances change.  I believe we kinda have a contract with ourselves:  "I'll want to go on struggling to live (as long as I can still do ????").  But as things change and get harder or less predictable, we look it all over and say to ourselves: "Well, can't do what I thought was my bottom line and I still want to live, even the life I have now and even if it's not what I'd hoped it would be".   We flail and, maybe act out, and then we finally renegotiate a new contract with ourselves.  And we continue to do that over and over again throughout our lives.  We never know what would give us satisfaction until we get there and check it out.  It may be 'okey" or even "pleasurable/gratifying".  My dad, a work-and-play aholic, was expected to grieve himself to death or be a miserably grouchy patient after his 2nd heart attack.  He didn't; instead, he seemed to find enjoyment in his much reduced lifestyle, and was even gracious about it all, to everyone's surprise.

 

I keep hoping I'm merely in contract renegotiations for myself, and that I'll get it all settled in my mind and then

proceed to live my adjusted life.  No, I'm not expecting to be a martyr but I would hope find some kind of peace with how I've dealt with my changing life conditions. Believe it or not, the cancer and heart attack have not been the hardest things I've had to adapt to.  The cancer was found in Feb, 09 with surgery and chemo following.  Then,  just as I was getting stronger, I had a heart attack in Feb. 10.  Wasn't a major heart attack, but with a stent, cardiac rehab, and ongoing cardiac life-long program, I was supposed to keep getting better and better.  But I couldn't find the will power to exercise and diet as recommended.  Severe sleep apnea was also diagnosed, and I was told the apnea probably helped to cause the heartattack.  But I had a lot of trouble with the apnea mask and my nostrils became infected. In addition, when the cancer treatment started, I was having major dental work.  Noone has confirmed it for sure, but I think the chemo effected my immune system, caused increased oral infection resulting in bone and tissue loss ultimately resulting in loss of all teeth and failure of dental implants which were to aid in adjustment to full dentures.  Certainly not the horrific pain and loss that many cancer patients experience, but cumulatively a lot to deal with and a lot that has ramifications that will continue to impact my new "normal" life.

 

I'm getting too tired to go on, but when I get a little steam, I'll try to describe how I feel about all this.  It's certainly not the worst it could be by any means, and I do feel grateful for it not being worse.  But that doesn't mean I've been able to rally myself and the right resouces to turn it around to something I can feel better about.  Any advice that might be different than the usual placating, infantilizing comments that most people make would be helpful.  I don't deal well when people kinda write my feelings off with statements like: "Just don't think about it; just get up and get yourself busy and you'll forget your troubles."   Or "All you have to do, is_______, and you'll get better." Or "You should feel grateful that you're still alive, that your cancer was caught early; the other things are minor compared to what you could be dealing with."

Be sure to tune in again to hear more of my woes---no, I'm sorry I said that like that.  I do really believe that all our feelings have merit even if our circumstances are significantly different.  'It is what it is" for me and I need to quit beating myself up for feeling what I feel.  Maybe if I can quit the negative speak, I would find more energy to redirect myself.  I apologize if my comments are hurtful or deminishing of your own angst or adjustment issues.

 

As Oprah would say, "I do know this."  We'll all get through it one way or the other, won't we?

Tori

 

Wow - I totally related to what you said.  I too am wondering whether I can have some purpose to the rest of my life - and I feel so guilty when stay in bed all day, sometimes I am too tired (depressed?) to get out of bed - but the guilt is the worst on beautiful days - what a waste.  How to take advantage of the time I have left with appreciation.  That's a hard one.  Is there an answer?  I'm searching....

Best wishes to us all

 

Hi everybody, let me start by saying I've battled depression for over 20 yrs and I am a 11yr 3a nsclc survivor. You guys are so talking my story. A lot of us survivors are justthat survivors. I have chosen to come to a couple of support sites and try to give some help., comfort, solace as it were  to people who need it. I know I wanted to do something so that all the Freud and pain that I've felt would hopefully keep someone to be in a better place . I wish when was diagnosed there was some kind of support but i never found one. It can be very lonely with this f ing disease. No one knows what these feelings are unless you have experienced it. I could not have imagined how my life changed. I have been able to gain some very important friendships here in cyberspace. We here usually call this our second family. We all have a special relationship. There's nojudgements unless you ask for one. I know you both have a story that could help hundreds of people. Share it and keep sharing it. It gets easier as time goes on and the response you'll receive is amazing. People newly diagnosed need to know that there are survivors. Remember when you were first diagnosed and how scared, lonely, lost you felt. You weren't alone at least you are not now. Why not share your feelings? It is very cathartic to let it out. Misery loves company too you know. Ok enough from me let's hear a little more from you guys. You know you want to! Haha
God bless, John  

Every night I finally go to bed (always have been a nightowl) saying to myself, "I'm gonna do better tomorrow; enough of this.  I'm well enough (have few symptoms) that I should be able to control how I handle myself."

Occasionally, I get up at a decent hour and get into normal things,  My husband is so non-demanding. I don't know when he's going to revolt.  I would have a long time ago had the tables been turned.  I verbally fuss at myself but I don't especially invite him to fuss at me too, even though he would be justified.  I don't want to feel like I pull myself together just because someone else coaxed me to; I want to be able to motivate myself and have the self-discipline and will power to fix myself.  But I ain't been finding it, and I am absolutely humiliated

 

I have a therapist who is good with me, am on meds for depression and anxiety, have my own professional background in social work and by all rights I have a pretty thorough understanding of my behaviors and feelings.  But I can't hold on to my plans to improve my coping skills for longer than a few hours, one day at a max. 

 

The most helpful things are reading about cancer and seeing over and over again that people can have a life, if they want it bad enough.  But I still haven't figured out the keys for me.  If I concentrate on my reactions in order to better understand myself, am I only putting off getting down to the work of putting my life back together?  If I don't think about my process, am I being naive, in denial and just putting off facing the realities of life-threatening diseases?

 

Still working on all this,  Right now, when the weather is good and I can do a bit of gardening I feel better and I can almost believe I can have a normal life.  The problem is, my illnesses and all that came with them, have pointed out that my pre-cancer life had many problems, many of which have been made more obvious with my diagnoses and treatments. Cancer nor heart disease, didn't cause all my problems, but they did bring a sense of urgency to getting things straightened out for myself.  Maybe now, I won't have forever to get around to doing what I've known all along I should be doing. And, maybe I won't recover fully and have the strength, energy or concentration or stick-to-it-tiveness to make a dent in what I need to do.  And maybe, I won't have time to learn to accept myself or even forgive myself.

 

Many of the self-esteem/self-worth issues, spirituality issues, meaning of life, quality of relationships issues would have been pretty all-consuming even without the cancer or the heart attack.  When I was working, I worked whole-heartedly, rarely giving myself time to go beyond acknowledging and processing my issues.  I didn't give enough time or attention to developing action plans and following up on evaluating their effectiveness. 

 

Now I have this big job in front of me and it is absolutely frightening and paralizingly overwhelming.  How on earth do I learn about healthy lifestyle issues; organizing nutrititional meal plans, exercise plans, record-keeping methods; learn new sleep patterns; go for millions of doctor visits; take millions of medications for anything and everything I even mention to my doctors; figure out how to style my thin hair and lose weight; make new friends in this new hometown, figure out how to adjust our finances with all our new expenses, how to research what I need to know about my illnesses, make time and energy for gardening and other pleasurable activities, learn how to cope with others' reactions to my illnesses, do a little housework and cooking, watch American Idol, HGTV, and all the Housewives of _____ reality shows; maintain family and friend relationships; make future plans or only make current plans, etc, etc, etc, ad nauseum!!!!!

 

The contrast between how negatively I describe my situation and feelings and what many other cancer patients say about their reactions is really embarrassing for me.   I don't know what my prognosis is; and I may not have nearly enough time to self-correct many of my issues.  However, I would at least hope to get some things worked out so that, when I'm gone, people I have loved and respected can say about me: "She was a trooper; she inspired me; she taught me and I was glad she was in my life." 

 

Have you ever thought about what you'd like to be said about you?  And do you think you can adjust your ways so that those things you hope for can indeed be said?  Is that at least one motivation or one way to pull out of the depression, confusion and feelings of being overwhelmed?  Any thoughts, or suggestions?

 

Goodnight to new friends and comrades.

Tori

 

I have seen cancer from both sides - both of my parents died of other cancers (melanoma and pancreatic cancer), and I saw each deal with their "fight" and how each dealt with the cancer after it was obvious that they would lose the battle. My father handled it with dignity - he told each of us that the only regret he had in his life was that he never panned for gold (I think that was his way of telling us he had no substancial regrets, and none that dealt with his children). My mother was in shock and a bit more selfish. She did not comfort others and pushed people who loved her away. Of course, I choose to remember the good times before she had cancer.

 

I am newly diagnosed - and a non-smoker to boot. My thoracic surgeon has decided to remove the mass, and I hope to have a surgery date in the next day or two. My wife is divorcing me, and a few weeks ago, I did not even know I was sick. I am in the middle of negotiations with a new company, and i think I have to put my new job on hold for the moment. An inconvenient cancer, that sounds like the title for my life right now. I am normally a very purposeful, focussed person, but right now, my head is swimming.

 

As for me, I allow myself to feel sorry for myself the first hour of the day. And then I "fake it until I feel it." I make my words positive and make my voice sound positive, and sooner or later, I feel better. I may be deceiving myself, but I do that every day. I feel tired by bedtime, but I have had a good day. Sometimes at night I start to cry or have dark thoughts. But I do the best I can. And as long as I am doing by best, I don't beat myself up.

Did you get a reply from me yesterday (Feb 27)?  I wrote a long note about depression and grief.  But I haven't been able to find it anywhere.  I'm new to this website so I don't know how to retrieve something that I don't think I totally erased before closing my response time.  Any ideas; I emailed the Alliance number, hoping to get technical advice.

 

Thanks,

Tori

Hi Tori, not to good on the technical side myself but I'm sure someone can answer. I've done the same thing . Posted it but for some reason and Im sure it is me, it doesn't get to where I wanted it. Hang in there you've been doing well so far.

John

Hi Tori,

I've been following your discussion the past few days, and as John mentioned in reference to a few more of us here to comment, "Come on, you know you want to", so I'll throw in my 2cents worth.  I certainly admire your explicit use of the English language in your discriptions and explanations of what you are dealing with....it's very refreshing.  I am 59 years old and coming up on one year as a stage IV NSCL cancer survivor.  It's been quite a year as I look back, and inasmuch as I'm still here, I can tell you first hand I have experienced many of the same feelings and thoughts as you have.  It seems I have endless questions to ask and so often I've gotten the answers right here, others I have to answer myself as time goes by since we all experience this dreaded disease differently.

 

One of your comments of how lonely this disease is, rings so true.  In the beginning, giving family and friends the diagnosis, seemed to be the "Big Talk" at the time.  Now a year later, the phone calls are fewer and fewer, visits seldom occur, and it almost seems everyone's forgotten what "They" made as the "Big Talk"  So often, all I want is someone to talk to...and not all about "Me"!  My kids are grown with families and my wife works everyday, so I'm stuck here day in and day out by myself.  Some may say, "Art get out there and do something especially while you can", but many days it's much simplier just to leave the shades pulled and stay inside and do absolutely nothing.  What a waste of valuable life and time this seems, and I'm on a six week break from all treatments and doctors, plus I live in southern AZ where the sun shines all the time.  What so many would trade for that?  Yes I share the guilt feelings too.

 

My doctors have told me I'm doing very well considering I'm IV stage, my overall health and age are beneficial to me, but we always get back to the bottom line..."There is no cure for cancer".  Like David commented, "Why has the Lord chosen to keep me here, when so many others have not made it?"  The true reason will in fact reveal itself, not only for me, but also for you.  I'm surely not qualified to answer your questions, but I can assure you, you are not the only patient that feels and experiences the things you do.  Is it depression (the true definition of depression), is it part of the whole survival process?  I really don't know.  All I know is that it's "Real".  It seemed so much easier to live a positive attitude in the beginning as it is now, yet I know I have to be the one to turn things around from time to time.  Sounds like good advise, but so often that is much easier said than done.

 

I wish you the very best, Tori, and keep the dialog going.  There may be many more of us here that have the same feelings, thoughts and questions as you have brought to the discussion.  God Bless!

 

Art 

 

Being there, felt that!  I tell you, in May will be my fourth year of surviving this stinking cancer.  My 2nd year of survival was the hardest year for me and my family.  I went through so many emotions from mad, to I don't give a care, to why is my family and friends so annonying.  I just don't get why I am still going after 4 years when so many others have not being that lucky.  It is amazing as a cancer patient how many emotions one goes through and then tried to analyze the heck out of each one because there has to be a reason...right!  I still don't get it but thankful I can be here with my friends and family even though they don't get it or the feelings.  Every time I tell my sister that my next scan is showing that things are stable she tells me, "That isn't good news, that is great news".  I can't tell you how many times I want to scream back at her, "Great news would be that I don't have this stinking cancer".  I don't though and just move on to another subject as I know she means well but she is one of those, everything has a reason and you have to be happy!  Well dammit I am sorry if some days I am not happy with life or don't get the meaning of life because we are all here for a reason!  So I have found a way, doesn't always work, to just let my family have their say and I just stay quiet and try not to explain anymore of how I feel.  I am blessed to have a good friend who I can scream and shout if I want and she is okay with it.  I know sometimes I just want to give up because I am so tired of my life revolving around doctor appointments but then the next day I tell myself to pull on the big girl pants and grab the boot straps and deal with it because other people with lung cancer are cheering me on to be a long time survivor as I am cheering on all of you.  We need to be the generation that lives with lung cancer instead of dying from it.  We need to give hope to the ones newly diagnosed and scared.  Does this line of thinking help everyday, well of course not, but for the majority of the time it does.  There are days when I want to say to hell with cancer and have a bottle of wine with cigarettes but then I know I would hate myself the next day so I don't.  It is a constant battle of the mind which I have to think most of us go through during this journey.  I am so mad at cancer that I went this past Monday and shaved my head for St. Baldrick's.  If you don't know about it is a non-profit organization for Pediactric Cancer.  I thought hell, I have been bald once because of stinking chemo why not do it this time for a great cause and for a kid I know that has been through more hell in his past 2 years than I will probably ever see.  If this kid can get up everyday and keep putting one foot in front of the other and live why can't I.  I think (don't know for sure as I never got to ask my brother before he passed) that kids don't look at cancer and analyze it like we do, or maybe they do but handle it at a kids level and not like we do. 

I hate cancer and hate what it has done to my family in having to deal with the loss of my brother, my mother and then I get cancer, then my dad gets prostate cancer (he is fine), then of course my dog had to get into the act and got cancer last month and passed and now my dad's only sibling was just diagnosed with lung cancer that has gone to the liver and bone.  So am I mad, of course, especially when my dad has been put through hell and now he has to deal with not only holding his breathe for me but now watching his baby sister and only sibling having to deal with this cancer.  We never had a history of cancer in our family so this is all shocking to us and plus my dad's sibling eats the right things, drinks only water, and as a lung cancer patient I can't believe I am saying this because it so anonys me, but she never smoked or was around anyone that smoked.  So I have to tell you I feel guilty that my lung cancer is at a good stage in that I am stable.   I just think it is the beast of cancer that makes us all this way and question everything.  I wish I had answers or hows on how to manage it all but all I know is that I look around and see the faces that would be very hurt if I left them.  We all have to go through hurt but today I don't want to be the reason my family is hurting or sad.   Sorry I just started babbling, I just know we all go through so much.  I am just glad I have this great place to come to and talk to people who understand all the ups and downs and are a great support.  So don't think you are squandering your life away as I know there are times I just live my life as I always have.  I made up my mind 2 years ago that I wasn't changing who I am because of the cancer.  I still eat what I want though I know I need to lose weight and do work on it but I sure am not going to pass up a piece of birthday cake!  So the best advice I can give is to live your life how you want to, that makes you happy, not what other people think a cancer patient should be.  I have yet to skip through a garden sniffing all the roses!  ha ha ha, but I do appreciate a day where the sun is out and it is warm!   Life is not all happy and go lucky, it is still life just cancer is in the mix of it.  It took me a year to figure out how to deal with everything and luckily my family and friends stood by me, did they understand, well no, in fact my one sister was ready to disown me because I wasn't behaving how she thought I should.  I don't have as close of a relationship with her as I once did but we still get along as I understand she will never understand how I am feeling even after trying to explain it to her.

 

Okay, I am done blabbing now!  Take care of yourself and if things get you down talk to a friend, or someone that will let you just talk even if it is a social worker.  Heck my best friend is Lexapro and at times Ativan! 

 

Hang in there and know we are here for you and you aren't alone even though I am sure some days it may feel like it.

Hugs,

Maribeth

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