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Cancer Survivor's Guilt & Its Ugly Cousin

Someone finally said it out loud. I’ve been thinking it since my diagnosis and, finally, someone actually said it. She was an older woman, who was obviously upset and angry about her battle with ovarian cancer. We came together while I was manning a table in the lobby of the cancer center with Sarah Mandel. We were there to talk about breast and ovarian cancer awareness.

She walked up to the table, perused the offerings and thumped an ovarian cancer handout, stating, “That’s me.” We sympathized and talked with her about her journey. At one point, however, she said, “I have stage 3; my friend has stage 1 – which is like having a pimple.”  I turned my face away from her, I couldn’t look at her straight on anymore, but I said nothing. I felt her pain and anger at her disease, but what she said caused me pain too. 

I am sure she never would have expressed that opinion directly to her friend. But what she didn’t consider was that there was someone sitting right in front of her who was diagnosed with Stage 0 and I did hear what she said. With that one pronouncement, she made it very clear to me what she thought of my cancer experience. And, my experience didn’t even rise to the level of a “pimple.” 

Now I can’t say her opinion surprised me, because I’ve been plagued with such thoughts myself.  Without a tumor and with a Stage 0 cancer diagnosis, I started this journey not even sure I was qualified to call myself a cancer patient.   (And that was despite the fact that I heard those three words everyone else has heard, “You have cancer.”) I didn’t know what to call myself. I didn’t know where I fit in. I didn’t seek out help because I wasn’t sure I was entitled to it. I kept thinking I should just be glad I wasn’t given a death sentence and get over it.

Part of my confusion was from the use of the word “lucky” by my medical team. When I received the initial diagnosis from a physician's assistant, she used the term profusely. She also told me I would probably need a lumpectomy and radiation. Later, when my doctor advised a mastectomy – removal of a body part and reconstruction – I had to ask – if this is so small and I’m so lucky, why do I have to go through the same operation as women who have “real” cancer?  I truly didn’t get it.

I know now that I was in fact lucky – I didn’t have to worry about death, I didn’t go through radiation, I didn’t suffer through chemotherapy, I didn’t lose my hair. But, did submitting to major surgery, which caused complications, a long period of disability, debilitating body image issues, major scars, emotional pain and suffering, and a second reconstructive surgery, only to be told that, oh by the way, you have LCIS too, which means your healthy breast is now at risk, was that nothing but a “pimple?”

Okay, I realize as I’m writing this that I’m defensively justifying myself.  The truth is that cancer is not a competition and, just as I am enough, so is my cancer.  I certainly did go through less than some one else might have gone through.  Thank God for that.  For that I should be grateful, not made to feel, by myself or anyone else, that I am guilty of not suffering enough to qualify in the cancer games. 

Speaking of guilt, I know that by feeling bad about not suffering enough, I am experiencing “survivor’s guilt.” The question of why I am here and healthy, when others are not so fortunate, is painful to ponder. But I have to say, and this might not be popular: Survivor’s guilt has an ugly cousin. When I experience survivor’s guilt I am doing it to myself. When others inflict their judgment upon me that I have not suffered enough, that's survivor’s one-upmanship.   

I thought when I created WhereWeGoNow.com that the biggest sticking point for me would be revealing myself so publicly. It turns out I was wrong. The issue that has bothered me the most is whether I am qualified to talk about cancer when I didn’t go through chemotherapy, didn’t lose my hair, didn’t have radiation, and didn’t ever face the prospect of dying. As I sat there in silence, Sarah immediately responded to the woman’s comment with a gentle reminder that all cancer survivors go through a lot and everyone’s experience is significant and painful to them. I don’t think the woman heard a word she said, but I did and I was immediately grateful again for the advocacy of my wonderful breast nurse navigator. She helped set me straight and reminded me that most of the many, many cancer survivors I have met during this journey certainly don't have this opinion. 

It turns out my “problem” is also my good fortune. When I say it that way, I realize how wrong it is to let yourself, or anyone else, berate you for not suffering enough from cancer. I feel for that woman’s pain and I know she never meant to cause me any suffering. The point is that cancer has caused us all pain and its only remedy is banding together to support our mutual healing. 

I can’t be the only one. Have you experienced cancer one-upmanship? How has it made you feel and how do you battle your cancer survivor’s guilt?

Survival > Existence,

Related Posts:

Coping with Cancer Anger

Are You Still Struggling With the Loneliness of Life After Cancer?

Running on Empty - Coping with Cancer Stress

Love & the Vastness of Cancer


Comments

Maggie's picture

I found many people want to be more sick than you are no matter what it takes!!!! I could never understand it but I have survivor's guilt and so few understand that. I spent four months at MD Anderson and people constantly exchanged information about what made them the most sick. I couldn't deal with any of it and always went to the other end of the waiting (wheeled myself in the chair to get away from them) room until I was called in for therapy. My mother who was my care giver thought I was a bit rude to distance myself from the rest of the group until she sat with them one day and got an ear full of the "contest" atmosphere of the discussion. I just didn't want to compete for "Most sick" and certainly not at a place like MD Anderson where really sick people lived and visited. There may be some kind of emotional issue that drives people to think and discuss those issues in that form so I hope they get better by doing it. It was just not for me. I have suffered with survivor's guilt and isolated bouts of depression pretty much alone. I guess we are all different

Debbie's picture

Maggie:

I've found that survivor one-upmanship is not something people want to talk about, but those of us who have been hurt by it certainly know it exists. Maybe you're right and it benefits the people doing it.  Like you, I wish them well. I hope I conveyed in my post that I understood how upset the woman was and that she had every right to be given her illness.

I wrote this post simply to state how it affected me. I suffered from survivor's guilt long before I ran into her. Ironically, as I stated in the post, she said something I had thought many times about myself: that my cancer was no big deal because others were suffering with much worse health issues. At that moment, we were both in pain, but she had no idea that she added to mine by saying what she did.

I have been really lucky not to run into this situation a lot and can't imagine how you must have felt hearing it so many times at MD Anderson. I've joined and left a few support groups before I found the one or two where I really felt comfortable. I hope you are able to find people who support you, so that you don't have to deal with your survivor's guilt and depression alone.

I'm so glad you're here at WWGN and thank you for your heart-felt comment.  Come back again, sign up for email alerts and become a member. You're not alone anymore!

Survival > Existence,

Debbie

 

Wendy's picture

Thank you so much for this article. I was diagnosed with DCIS and underwent a lumpectomy and radiation. One month prior my friend of over 38 years was duagnosed with invasive lobular carcinoma. The whole time I kept thinking is mine even considered cancer. Can I call myself a survivor? Why do I feel so bad? The questions kept churning over and over in my mind. I even compared my cancer to removing a wart because I did not have to undergo chemo. But in the back of my mind I felt bad and I didnt know why. My friends never visited me but flock to my other friends side. Yes she had a bi-lateral masectomy, chemo and now radiation but how come I feel bad? I just want to alienate myself and move on. Last week was the last radiation session. I never once cried but here I sit a week later crying my eyes out. The feeelings are real and it hurts when people make cmments that my cancer wasnt that bad. How can any cancer not be bad? It was still barbaricly cut out of me. 10% of my left breast is gone and I have scars and peeling skin. To me it was real and what I went thru was real.

Debbie's picture

Wendy:

It certainly is real and you have every right to be upset about it. A lumpectomy and radiation are no small things and neither are the emotions that come with them. If the people you're talking to can't understand that, I hope you find others who will validate your feelings, because they've been there too. Please make sure to keep reaching out and talking. I've found that the emotional road back after cancer can take much longer than the physical road. Make sure you travel it with real friends who honor your pain. Take care and I wish you all the best.

Debbie

 

 

Lori Marx-Rubiner's picture

Wow, Debbie...what a great topic. In my 10 years in the breast cancer community I've seen a lot of both sides of this issue. And I have to admit that now, dealing with a Stage IV diagnosis, my perspective has changed a bit. My heart breas for every survivor, and her loved ones, who face a cancer diagnosis with it's implicit fears, and decisions, and unknowns, and to imply in any way that another's experience doesn't "rate" makes no sense to me. However, there is tremendous difference, for me, when I face the daily reality that I will never be cured, that I will never end treatment, and that I am now squarely in that "90%" of patients who die from my disease. I suppose it stems, on some level, from a place of jealousy, and is only overcome by living each moment fully, and celebrating life (including the victories of those who overcome their cancer battles!).

Your post, however, touches on another matter I've spent quite some time thinking about. More and more I see that many survivors have developed an inner sense that there is a "right way" and a "wrong way" -- not only with respect to treatment, or the politics of breast cancer, but also right down to the language we use when we talk amongst ourselves. I have been told not to use the word "survivor" or "thriver" or "warrior" -- I should say "a person with breast cancer." (Never mind we're moving to 140 character or fewer communication styles.) I have heard outright anger in online groups that I would consider otherwise enlightened, when someone uses a "warrior" analogy -- "We need to stop talking about this as a war" (and that not even from 'a person with breast cancer'.) But what if, for me, it IS a battle? Shall I find another place for myself? Am I not welcome? Do I need to be shut down immediately, or worse - judged - by someone who doen't even know me, but HE simply doesn't like the language? I've seen tension over whether this disease can be considered a "blessing" - as if there is only one way to see this, and whatever my way is "right" and should apply universally. What if I have found a silver-lining or two? Does that mean I'm not a worthy breast cancer opponent?

In the same way that you keenly observe that there is "survivor guilt" there is also "survivor judgement." When will we learn that we each need to embrace our own experience on our own terms, and find some respect and acceptance for those who don't see it "our" way.

Debbie, I'm sorry if this became a rant! It's been on my mind quiet a bit!

Barb's picture

This is a great topic on a very sensitive subject. Debbie, I am wondering why you would say you did not have a 'tumor' just because you were diagnosed at stage 0. I too was stage 0, but grade 3/3 so it is fortunate my cancer was caught while it was still small. Being diagnosed with DCIS stage 0 is not 'lucky'. Recently a lady in my breast cancer group stated she had DCIS, stage 0 and underwent a simple mastectomy followed by breast reconstruction that failed. That is not lucky even though she did not have radiation or chemotherapy. For my DCIS stage 0 I had removal of two sentinel nodes/partial mastectomy and 6 weeks of radiation. As far as feeling guilty because our cancer was caught early is that not why we are urged to have regular mammograms? Yet some of the cancer literature describes DCIS (ductal cancer in situ)as pre-cancer? Calling DCIS 'pre-cancer' because the cancer has not yet spread beyond the duct is just nuts!
I think we need to protect ourselves from the unthinking comments of others. I like thinking of myself as a survivor now instead of having to wait several years before using the term. I have not been exposed to terms like warrior or thriver. One term I am not crazy about is 'journey'. If I was going on a journey it would be a whole lot more fun than stuff like biopsy, surgery, radiation, pain, fatigue, lymphedema, compression garments, etc.!! Rather, it would be some new exciting place with new adventures. I am guessing some of these words come from those who have not experience any state or type of cancer.
The one upmanship reminds me of elderly folks comparing how many prescriptions they have. Oh, you only have five. My doctor has me on 12! Yes, I have heard of such behaviors and it is wise to seek those who are more positive.
Thanks for letting me vent. One final thought - regarding support groups - it is helpful if the leader is a cancer survivor.

Debbie's picture

Barb:

Isn't venting why we're here at WWGN? When I was diagnosed, I was very confused by the fact that I didn't have a lump and wasn't even sure I qualified as a cancer patient. I've also seen DCIS referred to as pre-cancer, which only compounded that confusion. The topper was the word "lucky" which I certainly didn't feel given that I was losing a body part. I now understand how lucky I was, but that doesn't take anything away from everything I suffered. We've gone through a lot and are entitled to call ourselves whatever makes us feel empowered and positive. I'm glad you shared your thoughts with me and hope to see you here again at WWGN.

Survival > Existence,

Debbie

Debbie's picture

Lori:

I have a survivor friend who teaches rehabilitative exercises to breast cancer survivors. She always tells her students, “You didn’t do cancer wrong.”  For me, I struggle with my gifts and losses list, because I know not everyone feels cancer has a silver lining. But, as much as I am afraid to insult or denigrate anyone else’s feelings, I hope I will be given the same consideration.

I think you said it all when you asked for respect and acceptance. Whatever you want to call yourself, and however you’re feeling about your cancer today, I’m with you. It’s all legitimate and that should be enough for anyone.

I don’t think you’re ranting. Thank you for sending out a clear message that needs to be heard.

Survival > Existence,

Debbie

Nina's picture

I stumbled upon this tonight while I was searching for survivors guilt and cancer. Mostly it's just been a question rattling around inside my head, a big 'if' for me as I go down this road, but something that I needed to think about a little bit more. I'm 24 years old and I was diagnosed with Stage IV liver cancer( a very specific variety that only strikes young people) almost exactly a year ago. Through heroic efforts on the part of my doctors, surgeons and oncologists alike, I am still alive.

I am that person. I have had multiple surgeries, multiple rounds of chemotherapies, and radiation too. I'm following along with all the scary parts of the cancer play book, my torso looks like something The Joker(from Batman) might sign his name to, but here's the trick: I can handle it. I could handle the surgery that almost no one survives. I can tolerate Chemotherapy and it's nasty sidekicks(side effects). Radiation didn't even really keep me down. Doctors look at me like I'm a freak, friends and family don't really know what to do with me - I look pretty ok with my clothes, and I'm still the same person.

So here's what I get: people I don't know that well tell me about anyone they know who has had or has cancer. People tell me about all the medical challenges they or people close to them have faced. Sometimes it feels like they're trying to be competitive, listing all their woes, and then saying: "Look at you! You're fine. You're going to be fine." Misguided empathy maybe. Or an ill conceived attempt at playing the one upsmanship game with someone who is difficult to one up - More than that, someone who doesn't want to play. People in their 50s,60s,70s etc are trying to relate to me about something that while being similar is very very different. And here's the trick: I can't say anything in response because it would be inappropriate. It would be disrespectful of me, a 24 year old, to tell someone who was so significantly older that they didn't understand. That I didnt want to talk about it. There's a strange power and respect dynamic at play here, which makes the whole thing infinitely more complicated.

All of this is tied up in why I was searching survivors guilt tonight. 200 people a year(in the world) are diagnosed with this cancer, there aren't very many survivors. Of the maybe 20 people I know of who have it presently, six have died in the last two months, and two of those passed today. I dont know why I've tolerated my treatments so well. I don't know why I was operated on, when I was in far worse shape than many people who weren't even given the option of surgery. I don't have answers for those. There is no reason, but I'm stuck being scared of both. I'm scared of dying and I'm scared of surviving. Surviving, which I never really spent that much time thinking about, can be all wrapped up in the people didn't survive and the answers to my questions. The how's and they why's can be just as plaguing as the cancer itself. That, for me, is one of the hardest realities.

I'm glad I've tolerated everything so well. I still have hope, even when this stuff has been spreading around inside of me. I just struggle with all of the other stuff too.

Debbie's picture

Nina:

First, let me say how sorry I am for the loss of your fellow survivors. What you have gone through physically and been exposed to emotionally is something I cannot imagine and I am twice your age. I also don't understand why some people want to think of themselves as "sicker" than others. I can only hope that most of them are trying to make you feel better about your situation and completely missing the mark with their "misguided empathy."

I am so glad that you found my post and took the time to write such an insightful comment. I was surprised too by how much more difficult the emotional struggle was for me than was the physical component. What helped me cope was one-on-one oncology therapy weekly for a year. There is so much more to dealing with cancer than anyone tells you. As each new issue came up, I had the weekly guidance and support of someone who got it (and who would listen without judgment.) Whatever works for you, I hope you have the support you deserve.

Please know that you are not alone in the struggle. Join us at WWGN anytime and look into other communities expressly for young cancer survivors, such as I'm Too Young For This! Cancer Foundation, if you haven't already done so.

Survivor's guilt isn't easy to cope with and I can't imagine how much more acute it must be given the rarity of your cancer and your tolerance of it. I'm with you in spirit and would love to hear from you again to know how you are doing.

Survival > Existence,

Debbie

 

 

 

 

Julie P's picture

Nina, it's now March 26 2013. Your post did as much to help me as any of the healthcare professionals I've been privileged to be involved with during the course of my treatment. I've found that in terms of physical treatment they're amazing, but not so hot in understanding how traumas such violent and unexpected life threatening surgery, enforced menopause, and toxic chemo therapies can totally screw you up if you have the nerve to get through them. The hatred you have for yourself if the treatment stops (though you know it's only a matter of time before it starts again) and you can't forget everything and be "full of the joys of spring" or make the most of every day even though you know you should and want to. I travelled through hell, I was told I should be dead 8 months ago (that was sensitive of the consultant) I know it will catch up with me soon but still beat myself up for not being able to cope with this on my own. I smiled and was brave when I was going through treatment but felt lost and desperate afterwards. I eventually asked for help but got nothing. I think "why did I get this far to feel like this now?" I still don't know, but reading what you wrote made me feel normal. I hope, hope, hope you are still well. You have helped a total stranger. Thank you, more than I can say. Xxx

Debbie's picture

Dear Julie P: 

Blessings to you as you go through this anguish. You've brought tears to my eyes because of your struggles, humanity, gratitude and finally, because I am so happy that Nina brought you such a profound level of comfort. Good luck to you and please keep reaching out to others. It's the best healing therapy I know of and you are completely deserving of it.

Survival > Existence,

Debbie

Kathy Wilson's picture

I felt the rage repeatedly on my 32 year journey. Thank-you for exposing the toxicity of the support groups I have attended.
http://www.yelp.com/biz/national-institutes-of-health-bethesda#hrid:68-a...
I am the product of NIH's many successes. As a long term champion, 30 years survivor-ship or let's call it thrivership, 5 cancers and several relapses, and bone marrow transplant, miracles happen here.
How would you like to be treated by 12 of the best Oncologists in the world? What would you think of being afforded the privilege of being the 13 member of your own team of renowned specialist's the brightest and the best. Meaning you get to cite research or contribute to the current protocol with insights, suggestions and contribute to humanity
for free?
How would you feel when they fly in a specialist from Italy, for a second opinion on your biopsy's of a relapsed cancer? Well Friday March 20th 2009, I will be celebrating my 48th birthday. At 18 years old
I was a goner, huge cancerous mass in my chest, cancer in my neck,
and the lymph glands under both arms. I was dying. I had the cancers B symptoms night sweats,wieghtloss, itching,and finally a massive tumor around my heart crushing both lungs. I was wheezing, and could barely breath. Dr. Feller's of Georgetown ( he was Nancy Regan's doctor for breast cancer) refer ed me to NIH in 1979, because I had no health insurance. A rarity at the time.
If I had had health insurance I would be dead. At the time they had no successful protocol for my cancer. I know God holds me in the palm of his hand.
Every nurse, doctor, technician, specialist's treats you better then your own family. A very " Rogerian emotional hugs abound."
People work here because they want to improve the quality of life of every individual they can. 12 institutes address every malady of man.
People do not work here for the money; they make about 1/2 to 1/3 of what they would make in the private sector. They work here for the mission. Because we are in a high COLA area; it really stands out that these people and their families staff, researcher's and Doctor's
sacrifice time, money, and effort for the common good. Frequently the Doc's and researchers are on call 24/7 but are paid for what is a pittance of the lowest pay for a doctor whom is working 40 hours not 60 to 80+ hours a week. The Doctors have pleasant personalitys with smaller Egos must screen out the meanies. So the give the best doctor in the world with acculades like worlds leading authority on Ovarian Cancer a small closet for an office.
Now that I have multiple certificates in Management, let me
give you the 411 on administration as , the Doctor's who come to work at NIH are called a" fellow "Doctor, you are your own secretary, transcriptions, project manager, job coach, full time student among other things.
The sad thing about this ;in case studies; when mid management lost their Secretaries in the private sector, they lost something greater 70% of their productivity. Actually ,administration is bare bones skeletal; serving a 100,000 patients annually. Many top level executives know your only as good as your secretary or now administration assistant.
It's a left brain, right brain thing. That's why most doctor's have awful handwriting; all their strengths are in the analytical department, not the oddly labeled executive functioning area. Writing, typing, filing etc. It is akin to asking me to paint the Celestine chapel like Michael Angelo, or asking Michael Angelo to do manual labor. These researchers, Doctor's have a Sisyphean task, where the man spends the day rolling a huge boulder up a mountain, to have it roll over him on the completion of his day.

Nancy's picture

Wow,Debbie I cannot tell you how wonderful it was to find your blog on survivor's guilt online tonight. 6 months ago I was diagnosed with lung cancer following a PET scan and was booked for surgery to have the tumour removed. The pathology report indicated that I had carcinoid cancer, which grows very slowly and has a low incidence of recurrence, relative to other types of cancer. I too have struggled with calling myself a cancer survivor as so many I know have had to endure so much more. In fact my sister-in-law and I argued over whether my condition was really cancer and she told me that it wasn't "true" cancer. So now, I sometimes joke with my friends about when I had "fake" cancer. I feel lucky and appreciate that I didn't have to go through what most do, however I feel guilty that I didn't either. Most people have to have chemo or radiation and so people are often confused when I didn't have either. I sometimes feel that more than my sister-in-law view me as not even having had cancer. Even though I struggle with my emotions following surviving cancer, I don't feel I have the right to feel bad. I can't join a support group for fear of experiencing what you did. It's like going to a weight loss group with only 5 pounds to lose and having everyone look at you like you don't really understand the struggle, and that you really don't have a problem. Reading what you read at least alleviated my feeling of being all alone and not "fitting in". God bless you. I hope you are well!

Debbie's picture

Nancy:

I'm so glad you found WWGN. Welcome and rest assured that you are definitely not alone! I completely know what you are going through. My oncologly therapist assured me that what I was feeling was normal. She also assured me that anyone told "You have cancer" is going to struggle with that news. You have a right to all of your emotions and the right to be supported. 

Please don't avoid getting the support you need because of your survivor's guilt. I met with my therapist and joined more than one support group. While every once in a while I would run into someone who wanted to practice cancer one-upmanship, that was very rare. Almost 100% of the women I spoke to (I had breast cancer) were supportive. I've found over the years that treatment isn't always the focus. It's the emotional, social, relationship, etc. issues that take the longest to heal. We can all relate to that.

Oh, and unless your sister-in-law is an oncologist, I wouldn't give her opinion another thought. She has no right to tell you that you don't have "true" cancer, whatever the heck that is. Shame on her.

I'm glad you're here with us and please stop by often. Good health to you!

Survival > Existence,

Debbie

 

Nancy's picture

My daughter sent this site to me. I just finished our local Relay for Life. I raised $776 in donations. I sat in the stands listening to the speakers feeling like a phoney! I was diaganosed and had surgery and treatment in 2009. I'm almost three years cancer free. The problem????? From the beginning, after hearing the words "you have cancer" everyone including doctors told me "if you have to have cancer this is the best one to have." My cancer was a malignant thyroid. Reading these posts is helping me to finally inderstand that YES I had cancer, YES I and my family suffered! The degree of the disease does not diminish what we went through and I deserve the term "cancer survivor" and the right to celebrate this miraccle. Thank you so much for this site.

Debbie's picture

Nancy:

Wow, I so understand your "problem." I felt the same way after being diagnosed with Stage 0 breast cancer. I can't tell you how many times I was told by my doctors, the physician's assistant, nurses and technicians that I was "lucky." I didn't feel "lucky" and just felt diminished and guilty for not appreciating how "lucky" I was. I know now that I was lucky not to have suffered a more invasive cancer. But I also know that I am entitled to the suffering I and my family went through. We're not frauds, we're cancer survivors like every one else. Our experiences were (and are) real and they matter. 

I'm so glad you found WWGN and please stop by often. Thank you so much for sharing your thoughts with me.

Survival > Existence,

Debbie

Nancy 's picture

Does it ever get better? Going for my second check-up to make sure cancer has not recurred. Feeling very anxious and wondering if it ever gets better over time, as I'm only 7 months post-surgery. Does the fear and panic wane with every clear check-up or can I expect this to be the norm? Just wondering . . . and praying!

Maggie's picture

I think it depends upon so many things including what your diagnosis was and what your prognosis is for the short term and long term. But try and remember this....Your Thoughts Are Not Facts. You can't fortune tell or try and read minds of the Doctors before the appointment. You will make yourself crazy and it won't do anybody any good and maybe do harm. There are some techniques you can use and I highly recommend the book The Cancer Survivor's Companion by Lucy Atkins and Frances Goodhart. You can purchase it on Amazon. It is no nonsense and practical and doesn't give a lot happy feel good stuff that you don't need right now. Just the facts and showcases real people, their stories and how they coped.
You should over time get better but learning what sets you off before going in and what works to help sooth those moments will get you to an emotionally healthy place. We have all been there. I still go in after 8 years post bone marrow transplant and some of the old feelings try and rear their ugly heads. But in a heartbeat they are gone and I am grateful for being here and not only surviving cancer but all the junk that goes along with survival. Keep at it but get some help. We all need it.
Best Wishes and God Speed, Maggie

Debbie's picture

Maggie:

Beautifully said. Thank you so much for sharing your 8-year experience with Nancy and us all. As I have always said, it's the support of others who truly understand which made the most difference in my healing. Thank you again for adding your voice to our community. 

Survival > Existence,

Debbie

 

Debbie's picture

Nancy:

The truth is that I don't know if it ever gets easier. I'm three years out and I have my scary days too. I think I'm a little less on edge now, but the fear is still there. I met with a wonderful oncology therapist who said something I will never forget: "Whatever happens, you will never go through it the way you did the first time, when you had no support. Now you know where to go to get help, you have friends who have gone through it too and professionals who are there for you." I try to hold on to that when I get really nervous.

Keep praying and keep sharing! Good luck at the check-up!

Survival > Existence,

Debbie

Karen's picture

3 women who were all peers of mine at work were extremely supportive and helpful to me as I went through two separate battles with Hodgkins Disease, they sent cards while I received a bone marrow transplant, drove to to my chemo treatments, went to wig fittings with me and were there for me every step of the way. Eventually, after I recovered, these three women, at different times all came to work for me. And eventually each one of them got cancer and died, all while they were working for me. The last one died about 3 years ago. I currently have an opening for a position on my team and I asked a qualified applicant if she would like to apply. She stated "I will never work for you, every female that works for you gets cancer and dies, you are jinxed!" I know the statement is not true, and I know she wishes she could take it back, but for me it unloaded a flood of emotion. I realized later that it wasn't because I thought what she said was true, but how deeply I grieved my friends, and how guilty I feel for outlasting them all. I have asked God if he has a rationale, but no epiphany so far. I am interested in the steps others took to let go of the guilt.

Maggie's picture

Hi Karen, How sad somebody would say something like to you. She may be a nice woman and even compassionate but the comment she made clearly shows her fear was the overriding emotion when she spoke to you. If somebody gets cancer then somebody or something must be at fault. People want to find ways that "cancer" will never happen to them and so there are irrational statements and moments that leave us gasping for air. That woman also projected junk onto you that you decided to pick up and put in your backpack. You need to take that weight out of your backpack and get rid of it. It is not yours to carry around and deal with. It doesn't belong to you. That woman is used to dumping her rocks onto somebody and having another person pick up her heavy junk and carry it for her. FIGURATIVELY throw it back at her. You do not have to take that on. She is the one with the problem, not you. Survivors have enough of our own issues and baggage to carry around, we need not pick up the weight others. We are trying to be emotionally healthy not just physically healthy. Don't carry her garbage around. Drop it. Throw it in the next available trash can. Go get an empty bag and stuff things in it and symbolize what those things are to you. Other peoples stupid statements. other peoples fear. other peoples careless attitudes. Fill that baby up and then go throw it away. It really is a good exercise . Be emotional about it too. Get it all out and then throw it away. Remember you can only change you not that woman.

Debbie's picture

Maggie:

What a great exercise and a wonderfully empathetic comment. Thank you so much for supporting Karen. That's what I love about this community!

Survival > Existence,

Debbie

Karen's picture

Thank you very much, very good advice and I have written it down and then burned the "garbage." Great, sane advice.

Debbie's picture

Karen:

I am so sorry for the loss of your three friends. I can't imagine how hard it must have been, and still is, to have gone through all that you have. While what that applicant said is entirely untrue, perhaps unleashing your emotional reaction was a good thing. For you to realize how deeply you grieve your friends and how guilty you feel about outliving them is the beginning of dealing with your survivor's guilt. For me, although I still grapple with survivor's guilt at times, talking out my feelings with an oncology therapist helped me get through the worst of it. It's a process and I think the more honest and open you are about how you feel, the better you can deal with it and find supportive people who will help you.

Survival > Existence,

Debbie

 

Karen's picture

Thank you.

patriciad's picture

Wow, great subjects and comments. I saw the "ugly cousin"of cancer competition and avoided it. I needed to work on healing. I missed the survivors guilt. However, now that life is finally returning to normal, meaning back to the rat race of life, I sometimes think "was this all worth it". I was slipping away and so ready to die and now that I am "back" i sometimes think dying would have been better. This crazy life we american's lead is so pointless.

Debbie's picture

patriciad:

The fact that this thread keeps growing with more and more passionate comments just proves how difficult it is to process the cancer experience. Cancer has such an immense effect on our bodies, minds, and souls and it takes a very long time to sort it all out. I'm not surprised you are struggling after going through what you experienced in facing death and I'm sure you're not the only cancer survivor who has wondered whether it was all worth it. Keep talking and getting support from wherever you can find it. I don't know you, but I just can't believe that you survived what you did to live a life that is "pointless." I'm with you and wish you all the best.

Survival > Existence,

Debbie

Maggie's picture

Interesting comments about your experience. But the questions you ask are more thought provoking and of course only you can answer whether it was worth it to survive. I have wondered myself but not for the same reasons. I am not sure how you define "rat race" My family fell apart and is not back together and it is doubtful it ever will be. Maybe different but not the way it was before cancer. My daughter became a prescription drug addict when I was so ill and dying. I could handle my illness and fight for life and my daughter could have handled it had she been given the opportunity. It is her cowardly father who could not handle it so instead of facing the hand that was dealt he took her to Doctors who tried to medicate the pain away. Finally after 7 years of this craziness my daughter got into rehab and she has been sober for over a year and is back in college. Her father is not one bit better and tries to control her at every level to make sure she is okay the way "he defines okay". She cannot be successful over time until she is strong enough to say no to him. So having fought for my life and survived I have a drug addicted daughter, I am getting divorced and have spent years and years of my life using all of my energy to keep my daughter alive and her father from doing her more harm. There are days I thought how lovely to be dead and buried and not dealing with all of this heartache. I get it. But I have turned the corner and believe now my best days are ahead of me and not behind me. I hope the same for you. Sitting in the front seat of a bus and looking out the big window to see what is ahead is so much better than sitting in the back of the bus inhaling fumes and looking back to see where you have already been. I wish you well but it sounds like you might have to do some work on yourself. Your thinking seems a bit distorted which is fine as long it doesn't become a way of life. Distorted turns into twisted and twisted begins to hurt.

Debbie's picture

Maggie:

I so appreciate your honest and heartfelt response to patriciad's comment. I keep saying how important it is to share with others who "get it" for all of us struggling to heal beyond cancer. By sharing your family's stuggles and your moment of "turning the corner" you've delivered hope to so many others. Bravo to you and your daughter for walking through the fire and getting to a better place. And, I strongly agree with you that it also takes work on ourselves to heal. I've written many times about my year of oncology therapy and how difficult it was, but also so essential, to my healing after cancer. Much love and luck to you and your daughter.

Survival > Existence,

Debbie 

 

Molly Emerson's picture

As I am going into my second year of remission of ovarian cancer I still continue to ask myself, "Why not me?" But in order to understand part of it, you must know that seven months before my diagnoses of Stage One C , my best friend was killed in a car accident. I was still going through grief for her when it happened. My doctors kept inferring that I was lucky, that I was only at Stage One and not Stage Four, especially as a 14 year old at the time. The whole ordeal happned over the summer and I never saw my friends, never had support from them that I ahould have had. Of course, I had plently from the outside, but not from some of the people I thought I would. Now, if you think I asked "Why not me? " in the case of Cheyenne as healthy kid, but then picture me as a sick kid. Everyday I would cry and ask God why I was so special and deserved to live after my best friend died and there were hundredsmof other kids, or babies, that were so much more deserving of life than me. I still ask that, probably a lot morevoften than I should and people never know what I am talking about.

Maggie's picture

Molly, it is apparent you still are in a great deal of pain, and for that I am so sorry. I know the vast majority of people with cancer ask themselves, "Why Me??" and then the "Why Not Me?". I doubt if there are enough answers in the world to satisfy everybody who asks that question. For me I had 50 people ask me if I had asked myself those questions and I honestly can say I never once asked myself "why" or "why not". Having said that there was a time in my life I would have indeed asked those questions and asked 50 times a day. Call it age, call it maturing, call it seeing the world through a different lens, call it faith but I call it growing as a person who knows and loves God. I had to change to grow emotionally and become a healthy person and not just in my body. It is hard not to see God as a "performance base" kind of guy. If you do things up to my expectations then this wont' happen to you. Or if you don't meet my standards then something bad is going to happen to you. For me, the God I know is all about love, mercy and grace. He is not some Super Hero who sits on a cloud waving a wand and striking people randomly with the "good" wand or the "bad" wand. And I would go so far as to say God didn't have much to do with your cancer or your friend's death. If life and death is all about who is deserving and who is not , wow we are all in trouble!!!! And who gets to decide? More trouble. But more important, there are no real answers . You may never know the why but in order to be healthy emotionally and move on from guilt and a lot of pain you need to learn to be "okay" without knowing. My grandmother was my best friend and she always said to me "don't waste your pain". Get over it and help somebody." As I began to reach out to people I began to heal myself. This life exercise is not limited to cancer. My life has not turned out the way I had hoped many years ago but I have learned not only to be Okay with my life but embrace my life and all of the ups and downs and live life to the fullest. There is no magic recipe for the this. For me it was trusting God and a working towards a deep understanding that He knows more than I do and wants the best for me whether I can understand it or not. This doesn't happen over night. It takes a lot of work and time. If this is not something you can embrace I hope you find peace and enjoy your life as best you can.

Best,

Maggie

Debbie's picture

Maggie:

Thank you for sharing your experiences with us and Molly. Your grandmother is a wise woman. I learned the truth of what she told you after my diagnosis and treatment. Giving back to others was and still is a huge part of my healing. I wrote about the first time I experienced the power of helping others in an earlier post. Healing is a process and support, giving back and time are pivotal for getting through it. 

Survival > Existence,

Debbie

Debbie's picture

Molly:

I'm so sorry about the loss of your friend. I can't imagine dealing with that and cancer at the same time. Survivor's guilt is a very heavy emotion, but those of us who have experienced it too know what you are talking about. Keep talking to us and sharing your feelings. You deserve support while you work through your emotions.

Survival > Existence,

Debbie

Becky's picture

I too am a stage 0 breast cancer survivor as well as a malignant melanoma survivor. I used to feel guilt when people asked what stage my cancer was, or when they asked how I found my melanoma. My melanoma was a fast growing cancer that started out as a mole. To some people that doesn't sound very serious and they say, "oh, I've had moles removed too." Well I started out having the mole removed and ended up having a 2x3 inch chunk of my shoulder scooped out like a melon.
At the time of my breast cancer diagnosis, there were 5 others in my church dealing with cancer, hate that word dealing, going through, etc... haven't found the term that really describes it. Since then 2 of the ladies have died, that's where my survivors guilt attempted to railroad me. I felt guilt for surviving and for not wanting to die the agonizing deaths that they did. But I have since been able to take that guilt off and give it to God, it's NOT mine to carry or live with.
What kind of bothers me is when someone says, Oh you must be fine because you didn't have to have chemo. I have learned to remind myself that they are talking out of ignorance and I don't have the energy or desire to try to explain what I have gone through and am still going through with the anti-estrogen drugs.
Anyway, on a positive note, I call myself a survivor and I declare that I became a survivor the day they found my cancer.
Thanks for your writings and caring.
Becky

Debbie's picture

Becky:

Thank you so much for sharing. It's really hard for those of us who don't automatically "qualify" in other people's minds as cancer patients. Unfortunately, we also buy into that stereotype and make ourselves feel guilty that somehow we haven't suffered as much (or in the same way) as others have. Good for you for standing up for yourself and proclaiming that you are a survivor and that you don't have to explain yourself to anyone. Thank you for writing and please keep in touch.

Survival > Existence,

Debbie

Ella Synder's picture

I can't believe this post....having Stage One and no chemo or radiation compared to Stage Three or Four is like Heaven and Hell!...You people have some nerve compalaining about nothing..you should shut your mouths and thank God you have such a treatable and curable case!..so, if someone says you are lucky and that your cancer is minimal say yes, I am lucky that I don't suffer for two years being sick ever day and have fatigue so bad I can't lift my head off the pillow!...Say YES! I am damn lucky!.....

Ella Synder's picture

Debbie, YOU DON'T QUALIFY!..that simple...when YOU have had stage three cancer and suffered every day for two years then you open up that big mouth of yours!..disgusting!....

Debbie's picture

Ella:

I am very, very sorry for your pain and suffering. I created WWGN as a place for cancer survivors to come together to share and support each other. I'm sorry that sharing my story caused you any additional pain.

I wish you all the best.

Debbie

 

Jenny's picture

Survivor’s guilt, 11 months ago, I never imagined I would be experiencing such a thing!! I thought I would be rejoicing the end of successful treatment and resume my life before diagnosis. I was diagnosed with Leukemia and Lymphoma June 2013. I understand how hurtful the reaction to the pimple comment must have been. When a few people I knew found out what I was going through, it was as if I had a cold, “Oh my dad has that and he has lived for 15 years” or you are lucky that this is not a “bad cancer”. What people don’t realize is that cancer is cancer; it takes an emotional toll on us regardless of stage, type and prognosis. My survivors guilt includes the fact that outwardly my appearance did not change during treatment, I was fortunate I did not lose my hair during chemo. I felt bad for taking the doctor’s time and asking questions when I knew he had patients that were in more need than I was…is this the reverse pimple effect, did I have the pimple since outwardly I looked so healthy and I was told I had the “good cancer”? When I successfully sailed through 6 months of chemo without missing a beat at work and then took six weeks off to recover from the side effects of radio immunotherapy, my boss requested I explain why I felt I suddenly needed exercise FMLA. Again, the guilt kicked in, there were days I felt great during my leave, but then wasn’t I doing what I needed to do, nurture myself, ensure that I staved off potential infections due to a low to non-existent white blood count as well as the side effects of low red blood counts and platelets. How many of us experience survivor’s guilt because we not only had to process the diagnosis and treatment but how do we return to a “normal” life after treatment with our friends, family and employers. The expectation seems to be the cancer journey does not have an effect on us once the doctor gives us the news we all anxiously wait to hear, “You are in remission”; little do people know this is when the second phase of our cancer diagnosis and recovery begins.

Debbie's picture

Jenny:

I can relate to everything you said. I didn't lose hair because I didn't have chemo. I did have a pre-existing short hair cut though (which I've had for years and years) so everyone assumed I had chemo. I always felt guilty when I had to explain that my short hair was a choice, especially as so many of the women I talked to disliked their short (or non-existent) hair. Also, I was told by two people (a survivor and a doctor) that it would all be behind me in a year. When the year ended and I was in the thick of it emotionally, I was darn angry. I just wasn't prepared for the emotional fall-out that hits after treatment is finished. Add that to my survivor's guilt, and it took at least two years to work through it all and feel somewhat normal. I'm glad we can share like this so we know we aren't alone. Good luck and stay well.

Survival > Existence,

Debbie

Amy's picture

I was diagnosed with stage 1 B uterine cancer May 16, 2012. I was 41 at the time and was very blessed to need not radiation or chemo treatments. I have been struggling a lot with feeling guilty about being so blessed. There are two other people where I work that gave since been diagnosed with cancer and have had to have both radiation and chemo. A lot of why me was I the one that didn't have to go through extra treatments? Mind you total hysterectomy was very difficult for me on many levels and made me re-evaluate my dreams in life. This past weekend I got an invitation to a cancer survivors ice cream social from the cancer center I had a follow up oncologist appointment at last July. It wasn't one upman-ship, but I had someone say, "It was nice of them to include you since you didn't have any treatments". I may not have had treatments, but I did suffer effects of cancer and I am a survivor. I am a survivor. Those are really hard words for me to say . You are right, I didn't have treatments, but I still have emotional scars that people who have never had to hear the words "You have cancer" will never know. I have scars from never being being called mommy from a child of my own. I have scars from people saying things like "You are lucky it wasn't worse". Cancer has interrupted my life too. Cancer has caused me to think about things I never wanted to think about and experience emotions that I will never be able to explain to someone who hasn't been there. Cancer has hurt me too. With or without additional treatments, I had cancer and I am surviving it. Thanks for letting me know I am not alone with these feelings.

Debbie's picture

Amy:

I actually gasped when I read what that person said to you. Who said you have to have chemo and radiation treatments to "qualify" as a cancer survivor? That statement was made out of ignorance and, even if it wasn't meant to, caused pain and hurt. It's a shame that people (especially other cancer survivors) can't be more understanding that we're all fighting a hard battle. You are definitely a survivor and I'm glad to hear you stand up for yourself and proclaim it. You are very welcome and you are definitely not alone. Best wishes and good health to you!

Survival > Existence,

Debbie

Barb's picture

Amy - your story is so amazing for the total ignorance of the other cancer center survivors! What the heck do they consider undergoing a total hysterectomy? There is just no explaning the comments of some! I hope you stood up for yourself and set that person straight! But you may not have had the energy to deal with such a stupid unthinking remark. Blessings!

Debbie's picture

Barb:

I'm with you - I can't believe someone could say that to another survivor. My wish is that we come together to understand and support each other. The effects of cancer may not always look the same, but each of us has been affected and it is even more devasting when what we've lost and suffered is belittled. A little understanding, empathy and education goes a long way.

Survival > Existence,

Debbie

Maggie's picture

Hello Amy,

There is no end to the hurtful, absurd and utterly ignorant comments of others. But when those comments are made by a fellow cancer survivor it is particularly disturbing. Cancer does and can change a person, but not necessarily for the better. Cancer can also bring out the worst of a individual's characteristics. Generally speaking if a person was self centered and unaware of other's feelings before cancer, those people are more likely to say more ignorant hurtful things when they experience cancer. On the flip side I find people who are extraordinarily sensitive and show their concern for others openly, tend to demonstrate an ability to engage in meaningful and honest discussions with other survivors or people who hope to survive. Having said all of this Amy, is it possible the woman sincerely was happy you were invited because other groups do not invite people who have not experienced treatment? Is it possible she knows of women who had not been invited to those kind of activities because of lack of treatment? Is it possible she recognized this and was genuinely happy to have you there? Only you know the answer and could hear the tone of her voice and the expression on her face. Is it possible you are so sensitive and so raw from what you have experienced you have projected this onto this woman?

Whatever the case may be Amy, you can only make things okay for you. You can learn to be okay with stupid hurtful comments knowing they are said out of ignorance and often times fear. I hope you attend a function like this again and you go in with enough courage to start the conversation on your terms. For example you could start a conversation with something like this: I am so grateful not to have experienced the trauma of traditional treatment but the trauma of adjusting to not being able to have children has taken a toll and I am working very hard to overcome the treatment/surgery I had to beat cancer. I am so happy to be among survivors who know and understand no two people are the same nor experience the same treatment or outcomes. Etc. You can put your own personal thoughts and words to this but not only will you succeed in shutting down a person who is insensitive, you could very well educate some who will then take your thoughts and words and incorporate them into their understanding and help the next person instead of hurting. Never waste your pain Amy. Go help somebody...Blessings to you Amy,

Maggie

Roberta Jones's picture

I'm new to this group. I am a breast cancer "survivor". It doesn't matter what my details were. Anytime anyone hears that ugly "C" word it is the worst possible thing that could happen to them. I think the only people that really "get it" are those of us that have had the diagnosis. I'm writing because a friend died last night of cancer. I used to work with her and I remember the day I told her, and others in the room about my diagnosis. She didn't know about her cancer at the time. She was very healthy, watched what she ate, exercised and did yoga. I wasn't living my life that way. Now I'm here and she isn't. I was ignorant to the feelings that came up for me. I feel so bad for her and her family. I spent most of my day today in tears....

Debbie's picture

Roberta:

I am very, very sorry about the death of your friend. While it's horrible that you have to struggle with survivor's guilt in addition to mourning her loss, it is entirely normal that you would do so. As you can see from the many comments to my post, you are certainly not alone in experiencing these feelings. Cancer has handed you many losses, including this latest loss of your friend, and you have every right to spend the day (and probably many more days) in tears. I feel for you and send you all my best. Please keep sharing and talking. It's the only way I've found to get through the emotional hardships of cancer.

Survival > Existence,

Debbie

Amy's picture

Roberta,
I can relate to your feelings of survival guilt. I have been struggling with that myself when I had a friend diagnosed with breast cancer earlier this spring. The why them and not me questions come flooding in. Try to remember that everyone's journey with cancer is different. It isn't "your fault" that you are surviving your cancer. Allow yourself time to grieve the loss of your friend and the fact that you had/have cancer in your own life as well. I have a feeling this emotional roller coaster we are on as we learn to deal with surviving cancer while others don't will be a life long process. Yesterday I celebrated my "Happy Diagnosis Day" while my friend was in the hospital recovering from her mastectomy. Kind of ironic, but I know my friend would want me to be celebrating the life I am living now. I would like to think your friend would like you the same for you. Again, allow yourself to grieve but don't get "stuck" in the grief. Blessings to you!

Amy

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