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LC Survivors, Complain, Whine, or Vent


Connie B

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Frank gave me a thought for another thread here. He made mention on his last UPDATE post that he was sorry he was complaining! :roll::wink:

I know that many of the caregivers need a place to vent, or complain, or some of them even say they whine. I say it's human, but what do I know? :roll::wink:

If you go to the Caregiver Fourm you will see how so many of them have the need to vent. I think we ALL need to do that now and again dealing with all the ups and downs of lung cancer issues.

What I haven't seen much on the Survivors Forum or any other forum for that matter is any real Complaining, Venting, or Whining from the Survivors.

So as a Lung Cancer Survivor, who, when and where do you go to Vent, Complain, or Whine?? And what do you Vent, Complain, or Whine about?

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Well Connie, since you asked, My whinings in no particular order of priority are as follows:

1.SOB

2.Fatigue

3.Retirement years filled with planning around treatments

4.Cost of treatment cutting into my gas budget

5.2 ugly surgeries and one less lung

6.“How are you feeling?”

7.Needles

8.Staring at doctor’s office walls in examining rooms…waiting

9.Incompetent radiologists

These things don't consume me ,however. Right now, I rather enjoy my life.

Don M

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OH good... an invitation to whineeeeeeeeee!!! And I'm not apologizing for it either.....

Where to start, where to start...

Well, when I need to vent or whine, I come here, therefore, quite a few of my posts have 'whines' in them. I learned a long time ago that "regular" people don't want to hear it - or maybe it's not that they don't want to hear it - they just are uncomfortable with hearing it. My daughter doesn't say anything, but I can tell she is thinking that I'm a hypochondriac, and in some ways, I am. But like my doctor once said, with this disease, I need to be a hypochondriac. I talk to my sister somewhat, but just surface stuff about my worries, nothing too deep. I even hate to whine in here sometimes because I feel like there are so many people who have had months of chemo, radiation, all types of challenges and here I am whining about not being able to wear a bra comfortably. I mean, I imagine people saying, suck it up for chrissakes!!!That's why when I create a post, most of the time it is in Early Stage.

As far as friends, co-workers, etc - I was talking recently about how I was going to Dallas to meet my online LC buddies to a bunch of people at work who asked what I was doing over my vacation. I was excited about the trip so forgot the unspoken lung cancer rule of only saying so much to civilians :wink: . Within minutes, people started avoiding my eyes, shuffling paperwork, etc - they do not want to HEAR the word lung cancer. I think they want me to keep it my dirty little secret- and most times I do. Far be it for me to make their lives uncomfortable, its okay if I joke about myself at work having one lung, etc- that is okay, they love my jokes. But I can't speak seriously about it. I can almost hear them thinking "Get over it"- to them my cancer is something in the past. To me, it now is part of who I am.

Since you asked :twisted: -I guess one of my beefs is when people talk to the cancer patient as if they have suddenly turned into a drooling idiot because they have cancer. I know when I went up for surgery, my daughter kept insisting that I go to her house to recover and couldn't understand why I didn't want to. I could tell she was almost resentful because I was putting her a bit out of the way by her having to drive me 4 hours home and then she having to drive back 3 hours. Well, you know what? I love my daughter and all, but tough shi_. I ran her around her entire teenage years -stack up those rides to the damn mall and the movies - too bad I was being 'stubborn' and wanting to recuperate in my own damn house. My daughter lives in a small house that at the time overflowed with THREE kids under 6 and she was due with the fourth one. Sorry I didn't want to recover in a day care for crying out loud. They kept saying how it would be so much easier for me, but in reality, it would have been easier for them. I love my grandkids to death, and my daughter, and even my freakin son-in-law but my surgery was MY time, to do what I wanted. YES, it was all about MEEEEEEE!!! Sorry KIDSSSSS!!!!!

:shock: I have never really mentioned that time, and how I apologized all the way home from the hospital because she had to drive me back from Tulsa. And don't get me wrong, my daughter acted fine, but I could tell they were upset that I wasn't willing to stay up by them. But I needed my comfort, I needed my home, my things. IT was important for me to know everything around me was still the same. I'm the 'crawl under the porch when sick' type of person and I need MY porch. I don't think they still understand- they sort of shake their heads over mom's 'stubborness' to come home. Mom the moron. :wink:

Another complaint, the standard - the question, "Did you smoke?" , asked primarily by strangers but could be anyone. I mean the implication is so out there, like "So did you deserve it?". I keep trying to get the cohonas to say "why do you ask" as a reply like someone once suggested here. But for some reason, that dormant guilt or whatever it is, maybe it is just good manners, prevents me from making the person feel uncomfortable. So I answer the question with yes, and feel somehow smaller.

Another whine - my constant - leaving my job, leaving my life insurance behind, leaving really what is one of the only stabilities in my life, even though it is not a good place to be. I've stayed there the last 3 years in case the lung cancer came back, I have bought up extra disability there, extra life insurance. When I leave, I walk from those. I hate having to think of that every day.

I know I have alot more whines in me, but this is way too long already. I'll come back and add if I think of any pressing ones. Good post Connie!!!!

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Connie,this is a good thread.I agree with Debi,most normal civilians don't want to hear about it or are uncomfortable hearing it.

I very seldom do vent or whine about anything at all,but what I do to shake off whatever is bothering me is to get active at something.The more angry I am,the harder and more physical the project is.If something is really got my mind in a tizzy then I pick a project that requires lots of mental focus and concentration.This may sound silly to many of you but it really does work for me.

The last people on earth I want to whine or vent at are my wife (caregiver) and children.They have enough on their plates,they don't need my problems to boot.

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Ok I do not have lung cancer, I do not have any disease worth talking about. I did lose the love of my life to lung cancer. But it could have been to any disease, it did not make it any difference.

Ok, it drives me crazy that people can't talk about their fears, be it disease or phobias or whatever.

I chose not ever to treat people's problems as an 'Oh by the way'. I stay her because in some way I can feel the fear, love, shame, all the emotions that this damn disease evokes. While, my dear Earl did smoke, I have become an obnoxious spokesperson for "Don't ask if they smoked, many did not" advocate. Thank you Snowflake and Hebbie for opening my eyes.

I hope that I am a vulnerable human being, open to others, willing to share with others. I find that here. Albeit, a site that has a definitive subject, it is a site filled with love, fear, reaching out and searching.

Thank you Katie and Rick and all the members for a home filled with love and understanding.

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My best friend since I was in the 8th grade

had the guts to ask me if I still smoke when

I told her I had cancer :( It made me feel

awful that she of all people would say that.

I hate it that people think I should be over it

by now. I'm early stage, the 16th of this month will be two years since my surgery but since I am

NED, even my family seems to feel I should be beyond

this by now, or more likely they are tired of hearing about it..

Because I belong to this support group I have been told that I am dwelling on it and am actually going to "will" it back into my body. I should have moved on by now and when I am due for scans, no one seems to give it a 2nd thought but me. They don't want to have to worry about me any more.

I think most people still have this naive notion that once NED, always NED.

Like Debi, I wanted to recover at my own home, but didn't get the courtesy. Instead of anyone staying here, I had to go to them. I think that was wrong, I was the sick one, I was the one who needed the comfort of my own bed.

I don't even want to think of what is going to happen in 18 months when I have to TRY to get my own medical insurance. Right now I am on Cobra so I am still covered, but what insurance company will take me with a history of lung cancer and arthritis? I have to wear a pain patch for the arthritis which is very expensive. I shudder to think of my premiums IF I am able to find coverage. I don't qualify for Social Security.

I'm single, what if I want to get married some day, who in their right mind would want someone with a history of lung cancer? HA! I'd think twice before taking on someone like me.

I hate living every day of my life asking myself all of these questions, they are all valid and in addition to them and many many more, I worry every day that this stuff will come back... :evil:

I'm tired of being tired, I'm tired of being SOB, I'm tired of the look in people's eyes if I happen to mention this disease because THEY are tired of my mentioning it. I'm just plain tired of this disease.

I am not working right now but chemo did something to my body, I know that when I go back to work, which needs to be soon, I will not have the strength to work full time. I'll be lucky to manage part time.

Oh Sheesh, I could vent a books worth

kathy

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Great thread,

I've only been dealing with this for a month and a half and I already have complaints.

-I feel trapped to my job forever because I had my only life insurance through my company

-Tired of hearing "how do you feel".

-Tired of people (relatives) insisting on taking my children off my hands every weekend. That's when I need to be with them. What if I do die soon, I want to spend time with my kids.

-tired of my research nurse already (she shows up at every dr.'s apt)

-angry that my rising career has been halted and now I feel that I am no longer worthy of the money they pay me.

-fear of losing my job as I will then have no health insurance and no means of paying for health insurance and tired of people telling me not to worry about things like that at this juncture. I want to yell "why not, are you going to support my family of five"

-I wish my mom wouldn't ask me the second I leave every Dr.'s apt. "what did they say". It's getting old real fast.

-The look in everyone's eyes when they find out I have lung cancer_the look as though they knew it would happen because of how much I smoked.

Ok, that's enough venting for one evening. To make myself feel better, I decided to start a blog on blogger.com and it felt good..I can vent everyday.

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Connie , as usual you have great support ideas.

At first when I read this I thought " Boy, I'm alive, I don't need to complain!" If I am totally honest I have to admit I do have those thoughts pop up!

I was at Curves last week and one lady was talking about loosing a relative to lung cancer. I spoke up and said I had had lung cancer. Guess what the first question was! "Do you smoke?"

I was at church this weekend and I watched a women in the choir in 4 inch spike heels who is at least 10 years older than I am just stoop right down to the floor and pick up a piece of paper and rise right back up without grabing or holding onto anything. I have nerve damage particularly in my legs, neuropathy , they are weird and weak I tend to grab onto something just to stand up!

I am not in pain or worry about it all the time but when I do certain things my right chest where I have been cut open for the thorocotomy still hurts! AS now where I am trying to get myself in "shape" and I get onto the floor to do some tummy exercises BOY do I have to "settle" down for a couple of minutes before I get started for my right back really does not like lying on the floor.

Well those things just happened this week.

On the whole though my cap given to me by Gary that says "It is another great day to be alive" still holds true.

Donna G

O yes, I don't like the fact if I have a piece of sand in my shoe it feels like a piece of sharp glass

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oh boy Connie...I know you started this thread for me...ha..#1 whiner...but only to my husband and myself...and you guys

I think I mentioned this before...my family and friends think I am fine physically and emotionally....and I let them think that....but I am not...emotionally that is...aside from "old age' aches and pains...physically I am doing OK..I guess....Just recently had my Pap test...colonoscopy and mamogram...held my breath till I thought I would bust and thankfully all were clear...I hope to take this as a good sign...I am almost 2 yrs out from surgery (2 more months) but the fear will just NOT go away.

I am tired of waking up in the morning with it on my mind and tired of going to bed with it on my mind...and the &^^%$ invading my mind many times during the day...

Why can't I just get over it...I can't!!!!...there is NO history of any kind of cancer in my family from way way way back...Not that we know of anyway...I never questioned than "why me"...and if it had to start somewhere..I am not complaining that it was me...I would have rather it happened to me than any one of my family...

I had it...I took it...I suffered with it...I lost part of my lung...I cried ...I cursed it...I talk to myself about it...but just can't bury the freaking thing for good...

Yes ..I do have my good day's and I do like Debi feel bad sometime for my whining when so many on here are going thru so much and I shed many tears for them...and pray and pray and pray...My heart is breaking right now for Carleen and pray for her and Frank ..meant to post to you the other day and of course got side track...I am praying for you too and all of us for that matter that things shape up for you real soon

I was alway's the outgoing..fun loving ..smart a$$ person...(that's why my friends gave me the name of 'pistoltart) but my life as changed drastically...I hate this... feeling...just hate it!!..I want to be the person that I was...sigh

With the help of God...I am slowing getting thru this and if it wasn't for HIM...I would be in 'spring grove'....a nut case hospital in Md.....I am so grateful and thankful for the wonderful people on this board..I can't begin to tell you...

When I first found this board..I said to myself...'oh no..i don't want to go there...tooo much going on and to much of a reminder"...but now I find myself coming here to read almost every day...and sorry if I don't post as often..but believe me...I care...

About the 'fear's...well that is about the same as everyone else I guess..alway's worrying about recurance...and every little ache and pain...'what is THAT now'...like right now as we speak...my neck is cracking when I turn it for some reason...WELL Pam...it might be just from the way you slept...but NOOOO not me...right away thinking something is wrong....Oh God...I am really mental sometime...ha

Guess that's enough whining for today....got to get my but moving but first have to clear my head..(see what I mean)...OK zanax here I come...I will be taking those freaking pills for the rest of my life...and ya know something...I don't care...It does take the edge off

Ok kids...have a wonderful day ...sorry for the whining but feels good...thank you Connie

Stay well my friends and God Bless each and every one of us...hugs to all ..PamS.

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OK, so I don't have lung cancer, and don't get the "Do you smoke?" questions, but I often hear "Were you getting regular Pap tests?" or "I"ve heard cervical cancer is caused by HPV..." Yes, most cerical cancers are caused by HPV, an STD, so it's like they're accusing me of sleeping around (which I DON'T!). I'm glad people can dicuss the causes of cancer, whether it be smoking or HPV or whatever, but why the tone that people deserve disease????

Another thing that bothers me is when people, out of the blue, want to start talking about cancer when I wasn't even thinking about it. I do have moments when I'm not thinking about it and life seems very much "normal," and then they bring it all up! I know I can't expect people not to talk about it, or know when I don't want to talk about it, but still it bothers me.

I probably complain about the neuropathy too much as well. Because people can't "see" the nerve damage, I think some people think I might be making it all up or exaggerating it. It's hard to describe the pain, too, so that makes it worse. But it's very much real and does affect my daily activities.

Also, when I was totally bald from the chemo, and wearing my "doo rags," strangers would openly stare at me with looks of pity. I hated that! The only good thing about it was that other cancer survivors who saw my bald head and knew what what I was going through would come up and talk and encourage me. Once, while in a restaurant, a man about 40 (also bald and wearing a bandana) came up to our table, sat down and said 'So, what kind do you have?" We sat talked forever and it was GREAT! It was like we belonged to an exclusive clud and had known each other forever.

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Meredith,

I can assure you that being a lung cancer patient, people don't come up to us and want to talk about our cancer with us. :shock::shock: No No NO, not in this world anyway!!

Having lung cancer as a dx.s isn't at all the same as having cervical cancer as you have. I wish sometimes I did have some other kind of cancer. Having lung cancer people treat you as if we DESERVE what we HAVE!

I have walked up to a lot of cancer patients when I notice there hair-do & I always say to them, I had lung cancer, and you??? :wink:

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My gripe- Stigmas..

It is sad that there are stigmas in regards to disease and illness.

Most lay-people think that smoking is the only cause of LC. (I sure did 5 years ago) I firmly believe that is a major reason why public figures don't get involved in this cause and there is a lack of funding for finding a cure....

I had a very early stage cervical cancer diagnosed when I was in my early 20s and the first thing I was told that cervical cancer was caused by HPV = too many sexual partners / promiscuous behaviors.

Of course non of that was true in my case (met Rick at 17, and been with him ever since, married 15 years now) But that didn't matter because there was that stigma. I didn't tell anyone about it then except for my family.... and that's just sad.

I think the survivors here who openly discuss their lung cancer and educate people on the facts will end that line of thinking for some- that LC is a cancer that people deserve.

It does take education and awareness efforts to get people to open their eyes...

There will always be people out there looking to lay blame no matter what the cancer or illness. I think it is easier for some people to accept that line of thinking than to accept the scary reality that it can happen to ANYONE of us.

I hate stigmas...

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Stigmas. Back and forth on the damn pink ribbons and how THEY get much more attention than WE get. Cervical cancer vs. lung cancer - ya know, had pre-cancerous cells myself a few years ago. I don't know if I'd be so open with others were I to be fighting cervical cancer. I'm a lung cancer survivor and I never smoked and I'm DAMN LUCKY I'm a survivor.

All the money going to those pink ribbons? Doesn't really matter if you're the person that just can't get rid of the cancer.

I just said goodbye to a dear friend this evening. She set me up with the oncologist I see, sent me off to a wonderful cancer counselor who spoke to me for HOURS when I was first diagnosed and after the disappointment of my second opinion. She died of breast cancer, all those damn pink ribbons and she STILL died at 45 and left two kids, a girl of 18 and a boy of 21, parentless. "THEY get more money than US" Well, guess what, THEY still die, TOO!

I know the common thread here is lung cancer. I know that the words "lung cancer survivor" brought most of us to this site - but we are NOT some elite group of cancer survivors. ALL cancers need to be eradicated.

Last week I spent time at another funeral home with my best friend from high school. Her mother had just died of melanoma - SKIN CANCER.

Yes, more money is needed for lung cancer RESEARCH and NOT smoking cessation programs. I do NOT agree with the ACS paying a portion of the price of "the Patch" as their contribution toward ridding the world of lung cancer. I think passage of more laws outlawing smoking in public are what is needed. I'm DAMN tired of smokers' rights outweighing MY right to life, or that of my child or other loved ones.

We're all in this together, no matter the color of the ribbons we sport.

It's not been a good week.

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No, it isn't the same. Smoking is the 'Big Bad Guy' today for sure. Both diseases have their stigmas though.

I can certainly see why you say you'd want a different diagnosis other than lung cancer. I often wish I had gotten some other kind of cancer, too, one that isn't related to HPV (and one that isn't so aggressive!)

And I know it might seem weird that I, a cervical cancer patient, would be here on these boards! But I joined because I have so few options--you can hardly find anyone with small cell cervical cancer. This cancer behaves like small cell and it treated as such (because of its rarity, they don't know how else to treat it), so I feel I have more in common with sclc patients than with cervical cancer patients who have the common type of cervical cancer. Often times, the kind of cancer I have isn't even classed as "cervical cancer," but rather "Extrapulmonary Small Cell carcimona."

Sorry, you probably didn't want to read all of that, but I just felt like I had to explain myself and why I needed to come here. I have learned a great deal of invaluable information here, particularly regarding treatments.

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Whine, who me? Not a chance....

I have been struggling emotionally since day 1 because I spend so much time and energy trying to convince others think I was "fine". Silently struggling in my own mind that I was falling apart.

Whine:

+Pain

Lung removal nerves, throat pain when talking or eating, pain in spine, pain sitting for long periods, bowel confusion, neuropathy in hands/feet, mouth ulcers/dryness, rash on scalp/face, Dry skin, breast pain, numbness both physically and emotionally

+Change in lifestyle

Loss of job, control, predictability, friends, confidence, finances, relationship changes

+Stigmas on LC

+Fear in the eyes of friends & family

+Listing every ache and pain for the doc's

+Admitting that I am vulnerable and need others

+Different perspective than those around me

At times, I cannot help but judge others that are whining/complaining about something trivial. People whining about turning 50/60/70+++, complaints about how lousy they feel because they have a little cold, fears about imagined health crisises that are unfounded, world ending because they are having a bad hair day, they didn't dust this week, etc......

Hey, that felt pretty good. I am sure I can find many more things to whine about BUT I will stop now.

I have to say, while I have alot to whine about, I am so thankful for the friends I have made along the way and the opportunity to realize just how precious life is. ConnieB - You have been a true friend!

Wendy

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Not a lung cancer survivor myself, but wanted to jump in a bit......

Snowflake, I am sorry you had such a bad week :( I do agree with you 100% on the issue of ribbons. All cancers need funding. Lung is definately underfunded, but when it is your loved one who dies of a different beast, that is what you support. I personally just purchased some breast cancer bracelets for two friends whose moms got diagnosed this week and last. I couldn't see giving them a lung cancer bracelet ;)

And as for stigmas, I don't always get offended when one asks if my mom smoked b/c 2 1/2 years ago, I would have asked the same question. Just like if someone dies from a heart attack, I wonder if they were chubby kind of thing.

And as for gripes from a LC Survivor, my mom hates now when people sweat the small stuff b/c the small stuff does not matter. It is a pet peeve now.

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Okay, I know I already posted my gripes but Wendy and Andrea have reminded me of my latest which is people complaining on and on about nothing.

I have daily contact with someone who is convinced that the world is out to get them. IF they call to rent a house and it was already rented- they have no luck, here it goes again, they can never get a break, etc etc etc. This holds true for EVERYTHING that goes "wrong" in their life, they continually whine like its the worse thing in the world- meanwhile the things going "wrong" are pathetically trivial. (Like look its raining, it figures, now the grass will grow and I'll have to mow the lawn. It's just my luck, I just mowed the grass, it would only happen to me) On and ON and ON.. I mean... seriously....

Sometimes, just so the words won't come out of my mouth that are threatening to, I just visualize choking them till they stop whining. This seems to help. :lol:8)

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I think it is human nature to whine. It just seems like it is part of the package of life. But it isn't nice to listen to it. Somewhere along the line I was taught to suck it up! Period! Too damn bad if you got handed a bad card. You DEAL WITH IT.

Somewhere along the line, this lesson sunk in with me. Yeah, I still TRY to whine, but no one really listens. Oh well, anyway in MY life, that's the way it is. Oh, by the way, I love my life.

Someone always has it worse than you. Thank God for what you've got.

Joanie

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Ha ha ha = Always being told I look great! I used to get angry when someone said that.

Now I take it in like a sponge and say to myself - I do look good!! I love myself. Today is a great day. I can choose to believe it (if only for a little while).

Wendy

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Complain, whine or vent. I feel like I do that internally every single day. I wish I did not have to think about it. I wish I did not worry about it coming back or is it all gone. I had two lymph nodes to light up on the PET before surgery. I had 6 weeks of chemo and radiation then surgery followed by adjuvant surgery. I had 20 lymph nodes removed during surgery, plus one rib bone, all tested negative for cancer. So does that mean the chemo/radiation killed the cancer in my lymph nodes or there was no cancer there to begin with? I asked this question in our EXPERTS Forum a while back and the answer I was given was that it does not matter, it is gone and that is good. I know that the tumor shrunk to almost nothing and what was left was removed in surgery. I just want to know more about what is or was in my body that has the potential to kill me. Now I feel guilty for even talking about it because I am a year out of surgery and have had clear ct scans and xrays. I feel real good about that and then I get sooooo scared when I see that someone on the board has had a recurrence, especially if there stage is lower than mine which was 3A. I have gained 30 pounds and that is unreal for me, because I was always the skinny girl that could eat any and everything and never get fat. I at first blamed the weight on the steroids. That may have had something to do with it, but now I blame myself. During chemo they had me to sit in this nice comfy LazyBoy type recliner. I said to myself that if I live through this that I was going to buy me one of those recliners. I lived through it, I bought the recliner. I got the top of the line one with the heater and massager, the works. Well eating and getting into that wonderful chair. Watching tv and snacking while watching tv packed it onto this booty. Now I am not getting rid of the chair but I am more active now, working in the yard, housework, gardening, exercising. I will get rid of the weight. That chair is now my reward after I have done all of the things that I am supposed to do. The chair was so comforting when I was physically limited after my surgery, but now I have moved on. My biggest fear is recurrence, that is my biggest fear. I eat right, take vitamins and supplements, exercise, and that one cell from hell can still control or end your life. I get so mad when my friends tell me to stay off the internet. They have no idea how much I need to be here to be around people who know have been there done that.

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