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Survivor Guilt

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I remember someone on here talking about how some of the members on here got better and were NED and haven't been on since. I thought 'good for them'. But it would still be nice to hear about their stories. I've been in this battle for coming up on two years. My brother was diagnosed with esophageal cancer five months after I was and passed away on Easter Sunday so 11 months after diagnosis. Besides the grief of losing my brother I felt some survivor guilt over that. As I was getting better and better after my blood clot he was in the last stages of his battle. I feel guilty when I talk to my sister-in-law now.

Then, a couple of weeks ago an internet friend passed from uterine cancer. She went very quickly. A couple of months from diagnosis. The same people that knew about my battle knew her as well. They've been very supportive to both of us through all of this but when this lady passed I felt guilty. I no longer want to give updates because of it.

Now it sounds like the spots on my liver are not going to turn out to be mets. My surgeon says he'd be really surprised if it was as it's rare to get mets in the lungs without the liver getting them first. Okay, but now my doctor just got my last blood test results back and he says with my levels in everything including my CEA, which is 1.0, he's never seen anyone with such excellent results have mets. He said if it were him he wouldn't worry about the CT scan coming up that will show if the spots have grown. Pretty optimistic statement from a doctor who isn't the blow wind up my skirt type.

So I'm cautiously optimistic. And I wanted to come on here and on the facebook page I go on to share my good news and tell everyone how happy I am. Although I'm still cautious until the next CT on November 16. And then I realized that I didn't really want to go on a public place where there are people who have battled this curse and are battling right now and who are having such a tough time and tell them that I might be NED. It seems kind of cruel. Like I got good news and they didn't.

Yet when someone else comes on and says it I don't think it's cruel. It gives me hope. I guess it's survivor guilt again. I'm so happy that maybe I'm NED but it just makes me want it more for everyone else. Why can't we all be NED? I see pics of kids with cancer and wonder why me and not them? Same with surviving the blood clot against all expectations and being told I'd received a miracle. I'm so glad but also feel so bad because so many other people don't survive what I went through. It's a miracle because the survival is so rare. So why me? I'm nobody special. Why did I deserve this gift? I've done nothing with it and don't see an opportunity to make a difference or help people. The only good thing that I've been told came out of it is that when I was in the ICU my horse came to visit me and it went out on the internet and I was told that lots of people were given hope or had a better day because of seeing the article.

I don't want to sound ungrateful but I want all of us to have the gift of life. If there was some way I could share this I would. What's wrong with my thing that I can't just enjoy this?

Jan 

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

a big heart. You can't fully enjoy good news because you know others are suffering. I get that. I would say the best way you can help those fighting is by telling them your good news and giving them hope. I love it when others get a clear scan or good test result. You're not denying them health because you have it, everyone's in their own fight. You said it earlier in your post that you wish survivors would keep posting to encourage the newbies. Well, you're a survivor now and you get to encourage others, congratulations! I say enjoy your second chance and make the most of it. I'm not judging anyone who posts good news, I'm just happy for them!

Easyflip/Richard

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Richard. It's odd how I feel. I never feel envy for the people who are NED, I'm just thrilled for them and happy that they've shrared it because it gives us all hope. So why do I feel so guilty? And I might be jumping the gun anyway. I might find out I have bad news when I get the results from the CT scan.

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

i think we all understand how you are feeling, because we have all been there. Just don't let it get the best of you, and take away your own joy at you good situation (Which I pray will be confirmed soon)

When I posted my NED news earlier this year, it was the week we lost Craig. I debated what to do, but then felt that maybe, during such a sad time for all of us who knew and loved Craig, some good news might lift our spirits or at least let us see that hope still survives.

Sue - Trubrit

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Sue.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   I only have two months till I reach the end of year seventeen and start year eighteen of survival. I cringe everytime I think of all those I have known who are no longer with us. On the subject of guilt , if none of us survive there is no guilt. If none of us survive there is no hope. If just one person is given hope by our survival then there is no reason to feel guilty. I choose to believe that over the years I have been able to give hope to many survivors. Not all of them survived but again I feel it is better to live and die with hope than without it,Hugs Ron.

JanJan63's picture
JanJan63
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Joined: Sep 2014

Thanks Ron.

impactzone's picture
impactzone
Posts: 542
Joined: Aug 2006

9 years here Stage 4. The randomness and unfairness of cancer are so frustrating. I have many of the same feelings. Some who have been here a long time read and occasionally comment but there is an element of fatigue that hits me, at least. Kinda that 1000 yd stare.We do care, we do hurt and we do find a way to survive. Living in the world of cancer is tiring and terrifying, I know the long term survivors gave me hope and that was so powerful early. I wish I was more inspirational or knowledgeable. I just bought the ticket and am on the train.

All my best

Chip

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Chip, you're the kind of survivor that gives me so much hope, thank you.

vtspa6
Posts: 172
Joined: Aug 2015

Please try not to feel guilty.  It really does help with those that have just heard those words "you have cancer".  When my husband was dxed and I join this board I truly thought this was the end and it scared me so much!  When I read someone say I am NED it does give me hope and I tell my husband everytime I read this.  In fact, I was a total basket case at the beginning and reading these stories truly has calmed my nerves. Try to enbrace this good news and and your friends will rejoice with you.

Vicky

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks Vicky. In a couple of weeks I hope that I'll be one of those who has a story of hope. I've told this story on here before but things get lost and bogged down so I'll give a quick rundown again.

My grandmother had colon cancer in the 1950's when she was in her fifties. Chemo was in it's infancy so she did not get that, only surgery and a colostomy. She passed away in her early eighties, 84 if I remember correctly. She'd been healthy right up until her kidney's failed. She had no cancer and she was so healthy they told her she was a candidate for a kidney transplant, which she refused. She'd just come back from a two month trip to Australia when she went into the hospital for her kidneys. If that doesn't give someone hope I don't know what would.

And, for the record, I'm adopted so I didn't inherit it from her.

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Naturally we feel the pain of those that are still carrying this disease, because we have been there too. I am a 2 year NED and I have nevet felt survivor guilt. A good friend just past away from the same cancer I have. I tried to support him to the last minute without guilt even when he pulled away from me for whatever reason. 

I feel lIke I have to tell and show people healthy or sick that you can heal, recover and hopefully prevent cancer. I'm not shy of telling anyone that I had/have cancer, because regardless I want to be the best me I can be. I want to express: look here, despite all this terrible thing I look and feel great and still contribute to this world. 

This site and the world need good examples to move forward And stay positive as much as possible. 

Laz

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you Laz. I'm so happy to hear the good news stories but for me it feels like leaving a soldier behind.

I wonder of your friend pulled away because of this reason, you made it and they weren't going to. A very close friend told me this past weekend that she's being tested for colon cancer. They haven't done a colonoscopy yet but have given her a bunch of information on it and have her lined up to go talk to someone about it. She said she'll refuse treatment because of seeing what I went through. My heart is broken to think that instead of seeing that a person can fight this, the message she got was that it's too hard. I had additional issues that most people don't get, anyway, so it shouldn't have been as hard as it has.

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Each of us is given a finite number of days on this earth.  It is what you do with those days that counts.

Sadness over our losses is understandable.  Each person we care for leaves too soon, regardless of the cause.  That is life.

This time of year I often think of the old movie "It's a Wonderful Life", which emphasizes that we do not see that even the smallest things we do can have major impact on the lives of others.

Sharing our stories, the good and the bad, are a tribute to all who have gone before us.  If we withdraw because of their passig, we deny those yet to come of our experiences and those passed on to us from others.

No one is left behind, as long as they remain in our hearts and memories.

It is not unreasonable to wish health for all.  Just don't let the fact that it is not possible YET keep you from enjoying each day you have. 

Marie who loves kitties

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you Marie.

jen2012
Posts: 1607
Joined: Aug 2012

Yes I agree with Marie.  And while some get upset seeing old posts from friends who have passed on, I like it. I think it makes them live on.  I still find it so hard to believe that Craig is gone.  But we still have his stories and I will be happy to see them pop up time and time again.

Try to let go of the guilt and worry and enjoy life.  It's not like you surviving, takes away life from someone else.  Non related.  Life is strange, hard to understand why things happen.

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

 

A very nice sentiment; words to live by. 

Thank you,

Cyn

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

at the age of 43, six years before I found out I had it, also at the age of 43 oddly enough.  She died one horrible year after dx, leaving behind her son and husband, while here I still am, chugging along four years NED.

There's no rhyme or reason to it, as far as I can tell.  Mostly just a lot of blind luck.  And I do feel very guilty that I have survived, when she didn't get that chance.  And I can't even really think about all the children who don't make it (including a friend's only child who spent her senior year in our local Children's Hospital and died before graduation).

People around me have learned not to express the idea that there is a plan in any of this.  

I'm very sorry about your brother.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you. It makes no sense at all. I think that's why it's so hard to find a treatment. It's never the same for each person., no matter how similar their situations.

I agree about the 'plan'. Nobody wants to hear trite things like 'God wanted another angel' or 'the good ones die young' or 'she's out of pain' or foolishness like that. There's no plan, it's just bad luck.

beaumontdave's picture
beaumontdave
Posts: 1166
Joined: Aug 2013

It's been six months now since I watched my wife pass from a brain tumor in a bed in our livingroom. I'm just now beginning to feel like myself again, or at least a reasonable fascimile. I don't know that I'll ever feel whole again, or lose the guilt entirely. She was the force that made this house, home; that made all the connections to friends and family. The one who gave holidays meaning, and gave me the sense of purpose for work, play, fixing things, most of the things I did. I'm trying to fill that role in my own fashion, but damn it's hard. The survivor guilt comes from knowing how well suited she was to survive my end, compared to the other way around. I have a tough time celebrating any clear scans or good tests for any length of time, because after being my rock for the first year and a half after my dx, and leaning on each other for the five years after her dx, then being her caregiver for that last year and a half, I survived and she didn't.  I know I'll get better with time , and I will share my story here, however it goes, but I very much understand the guilt. Like others have said, every bit of good news is a boost to me, I want to hear people getting better and stronger and embracing life no matter what it throws at them. I need to hear that..........Dave

Trubrit's picture
Trubrit
Posts: 5487
Joined: Jan 2013

My heart aches for you and for the loss that no time will ever erase.

I hope you are being good to yourself. We don't need to rush past that grief stage just as much as we don't need to wallow in it for years on end. Their is a happy balance, and I pray as time passes, that you will find that happy medium, where life goes on while aching for the loss of your wife. 

We all know that Cancer doesn't have favourites. It picks and choses as it will. 

Sue - Trubrit

 

 

 

jalusa's picture
jalusa
Posts: 21
Joined: Mar 2015

I am willing to risk feeling guilty if I survive.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Jalusa, you're absolutely right. It's just me. I can't seem to enjoy anything positive in my life without feeling like there's someone else out there who doesn't get to feel it and it takes away from it a bit. I like being an empathetic person but maybe it's at my own expense and that's not smart. And I realize that my feeling guilty doesn't take away from anyone else.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh Dave I'm so very sorry. I have no words. Sending hugs to you.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I don't have survivors guilt.  I am happy to be NED.  I feel damn lucky to be NED.  I appreciate it and live well because of it.  I am making better choices, I am appreciating life more, I am being nicer.  NED could go away as fast as it started and I know that.   I have a question of more why one person survives and another one doesn't.  We all fight so hard.  I think it's just pure dumb luck.  You did this treatment, this moment on this day and it got the necessary cell.  While someone else did it half an hour too late or a day too early and missed a cell.  I often wonder if I had gone to Sloan from day one, would I even have this ostomy. I'm convinced my first surgeon screwed up.  Life sure is odd.  I don't come on anymore much.  Not because I'm moving on but because it's very painful emotionally. So many posts in a row of people who didn't make it.  I never got to meet these people but they got me through the hardest point in my life.  And now they're not here anymore.

Your horse coming to visit you is hysterical!!!!!!  Can you please send me a link?  I'll try to google it.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Helen, I agree about it being a total crap shoot. I still think that it's something like a flu or bacteria that someone gets exposed to and others don't. I recently heard that people who have infections after the surgery are less likely to have a recurrence. I had two abcesses and an infection in the incision site. Maybe that's what's helped me. Maybe it's nothing to do with chemo or radiation or eating properly or taking supplements.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

survived long enough yet to feel guilty, but  like jalusa, I'm willing to take the risk. Please don't feel guilty.  Those of us who  have seen the statisics on survival rates often need to be reminded that people are not statistics; those of you who bounce back and survive despite setbacks and remain NED for long periods  help us to see that. And that gives us hope.

Grace

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Grace, I pray that we'll all be part of the NED club and die in our beds at an old age without any suffering beforehand.

NewHere's picture
NewHere
Posts: 1340
Joined: Feb 2015

 I am Stage IIIC with 11 lymph nodes involved.  Had the surgery and chemo, yet when I read what others have gone through, it almost feels like I pretending in having cancer.  (My wife realizes more than I do in terms of how it affected me going through all the treatments, I just on doing the best I could, but she saw how it affected me physically more than I have I think.)  The stories from people here with their issues with chemo, radiation, inordinate numbers of surgery and the amazing bravery and strength.  Maybe guilt is not the right word for me. 

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

yes, I'm guilty being four almost five years NED. Do I feel guilty? it must be, because I'm a lurker. Not saying much, because I feel I have so little to offer on the board . I refused the chemo and radiation and was told I would die in five months. But I'm here, alive. Even being NED I still live the remnants of my cancer every day. Ask me for a bathroom and I can tell you everyone within. 5 mile radius in the town I live in. having dinner before going to a show or see a movie is nerve racking. Where is the bathroom and do I make it in time. People sitting next to me have asked me if I'm "OK" the noises from the working of my colon sounds like the start of an earthquake or the passing  of a freight train. When I do have to go it is immediate , no waiting possible , explosive at times. Sorry to be so grafic  but I know you all understand. 

Do I feel guilty to be alive? NO, only when I come on this board and read all the suffering I did not go through. Indeed why me? Is it because my daughter needs me because she has a horrible painful decease? Trigiminial neuralgia it is called. Is it because I refused Chemo and Radiation? Who knows ? Is it because I changed all my eating habits, use herbs instead of man made medication ? There is no answer.

I made friends here and I invited friends on my friends list. They are all gone now . That's what makes me feel guilty , all the names on my friend list are memories. That's the reason I have not taken on more friends, I'm afraid to loose them. 

i know it is silly, but that is me feeling quilty.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thingy, yes, there will always be remnants. Some of them I wonder how long will last or if they'll ever go away. I have pain in my bones all the time but it's my new normal. It only bothers me if I have a bad day with it. I still have neuropathy in my feet but didn't after fnishing chemo so it's probably from the blood clot, not the chemo. I still get tired easily and my memory is pretty pathetic. A good day for me now would have been a bad day pre cancer. But it's not terrible and I can certainly live with it. As long as I live I'm happy.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I know what you mean New Here. Mine has been pretty simple and I read about so many things other people go through that I haven't and I feel so bad for them. And then I think about how my port insertion was a mess and over a year later it started to come out through my skin. I think about the two abcesses I had after the cancer surgery that put me back in the hopsital twice and were horrible. Having the drains put in was incredibly painful. And then the infection in my incision which required being packed every day and was terribly painful. And then to top it all off I had the blood clot and amost lost my life to that and have had to come back from complete paralysis because of it and the stroke that came with it. Yet I think I've had it easy. And, if I survive this for another ten to fifteen years I'll think it was all worth it.

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