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,
Are You Still Struggling With the Loneliness of Life After Cancer?
Running on Empty – Coping with Cancer Stress
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
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.
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!
This is a great topic on a
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.
I stumbled upon this tonight
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.
I stumbled upon this tonight – message to Nina
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
I felt the rage repeatedly on my 32 year journey. Thank-you for exposing the toxicity of the support groups I have attended.
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
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.
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!
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.
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!
Does it ever get Better?
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
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.
Hi Karen, How sad somebody
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.
Thank you very much, very good advice and I have written it down and then burned the “garbage.” Great, sane advice.
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.
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.
No One Understands
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.
No One Understands
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.
survivor guilt and when others stop understanding
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 2×3 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.
Cancer survivor’s guilt
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!…..
Cancer survivor guilt…
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!….
Survivor’s Guilt – Another Phase in Healing
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.
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.
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!
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,
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.
I can relate…
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!
The Layers of Survivors Guilt
I have found that survivor’s guilt comes with many layers to reconcile. It encompasses acquaintances who may not know better to those closest to us who we think should know better in the things they say to us. One my cousins closest to me (my dad’s nephew) passed away from liver cancer on Wednesday, which was very sad and will leave a big whole in my heart. Upon delivering the news to me, my mother proceeded to minimize my cancer, and the ordeal I faced over the past year stating people with my cancer live for many years when truthfully I don’t know where my cancer journey will take me. Perhaps this is her way of coping for fear of losing another family member, yet her words still stung all the same. Her words came without empathy or caring. Not only will I process the loss of a dear family member but the fact that my cancer journey is not viewed as viable as those who are no longer with us because I am here and don’t seem to be suffering. I write this to shed light that survivor’s guilt can manifest itself in many ways and we never know what someone may say to us that cause feelings to bubble up or hit us so hard it makes our head spin. What I am working through in my survivors guilt is yet another journey I am privileged to experience in order to make me a stronger person and be able to help those who may need my support, whether an acquaintance, friend or a close family member.
I stumbled across your post in trying to figure out myself “Where do I go from here”. I found myself being diagnosed twice in last four years with cervical cancer stage 0 (otherwise known as adenocarcinoma in situ). My first go round, for some reason, I didn’t think much of it. It was simply removal of the diseased tissue and I was on my way. The recurrence of it though, the diagnostic test, and ultimately ending in a total hysterectomy has left me feeling, well, guilty?
It is a point to ponder, as to why, three months after my surgery, I can go on my way, be discharged from my Drs care and be considered free of a disease that could have been much much worse, when I have friends who are at all different stages of cc, including those that palliative care is their last option.
At one point, I tried to consider it “not cancer” since the FIGO staging used for gynecological cancers doesn’t recognize “stage 0”. But then I was told that because of my diagnosis I shouldn’t participate in a cancer prevention study because, well, I had cancer. I’ve also gone through the phase that I feel like I am on top of the world, and I am going to be the voice of everyone who can’t or won’t talk to try and raise awareness. But that only works some of the time. Most of the time, I just sit and stare, and try to come to terms with, how did I get “so lucky”.
I’ve never experienced survivor one-upmanship, but I was blessed to have experienced the reverse. I participate in Relay For Life and was at a fundraiser. Someone asked me if why I Relayed and I explained about how so many people in my life were impacted, from relatives, to co-workers, to best friends. The list for me goes on and on. She then asked me if I was a survivor.
I was at a loss for words, not knowing how to answer. I was in my “not a survivor” attitude that day. I explained anyway and she looked me in the eyes and hugged me, telling me not to sell myself short. I am still carrying the experience with me this morning.
At this point, it is guilt that I carry. Guilt and lack of acceptance.
Grateful to you
Wow. Just wow. I had no idea this was normal.
As a Stage 0 DCIS who had BMX, I just got hit with pangs of guilt this week, 7 weeks out from surgery and in the beginning of reconstruction. I called it a “hangnail with benefits”, as I got off very easy in the grand scope of things, and my consolation prize will be a new pair of ever-perky breasts. It was a joke until recently- I want to slink into the shadows, never mention it again in the company of a “real” cancer patient.
Such an odd emotion, I never expected it. I am very, very appreciative of you for sharing this concept, for writing the words that describe how I am feeling. Thank you so much.
Thanks for the note back Jen.
Thanks for the note back Jen. I would like to tell you how I think (not feel) about your type of breast cancer . Having a double mastectomy for any reason takes an enormous amount of courage. Deciding to surgically remove any part of the body as a preventative measure for longer life and better quality shows me how intelligent and compassionate you are as a woman and human being. Demonstrating what is important in life in such a dramatic way gives me strength to make hard right decisions at every level of life and you definitely made a very hard right decision. Wanda Sykes and Angelina Jolie are in good company Jen. They are with you. Take the guilt and burn it along with your old bras. Your diagnosis is one that is scary in that there are two kinds of cancer waiting to attack you. Bravo Jen and a long happy healthy life is in your future because of your courage. You are indeed a cancer survivor in every way. God Bless. Maggie
Many thanks, Maggie.
Many thanks, Maggie.
I am enjoying donating all my now/soon to be ill-fitting tops, including sports bras to my Crossfit girls at the gym. And with them goes my best wishes that none of them get cancer like I did, or worse.
Thanks for the encouragement.
Wow after reading all these post I find that I am NOT alone in how I feel with the guilt and with people trying to “one up” their cancer to mine. Thank you Debbie for the link to this page. People really dont understand unless they are people that have been told they have cancer. Cancer is cancer no matter the type no matter the stage. I have had a wonderful support system but I finally feel that I have found a true support system with people that really do understand and that feel the same way as me. Our local Relay for Life is this weekend and I have been invited by several friends to walk and they are really pushing me in walking in the survivors lap. While I know this is a truly wonderful and very emotional event I am just not ready for that. I am really not sure when I will be. And because of that I once again am feeling guilty. Ugh!
Thanks for addressing my sentiments
Thank-you for addressing this topic! Let me start by saying that as a survivor of testicular cancer I almost didn’t respond, but I have struggled with both of these issues more times than I can count the 8 months since my diagnosis. Stage 1 TC is very treatable, but the chemo almost left my son fatherless, my wife a widow and my unborn son wouldn’t have ever known his daddy. That being said depending on my level of rest and state of mind I often find myself crying as I hear other people’s stories of surviving but especially when one of our warriors loses a battle and especially when one loses the war. I don’t know what it’s like to have BC, but I know what it’s like to be a cancer survivor, and I’m glad you wrote this because it is an important topic for all of us Survivors.
Thanks for sharing your feelings and telling part of your story. It is an important part to talk about. I hope you are able to find peace about being a survivor and develop ways to keep your peace at all times. We don’t have to give up our compassion for others who have not faired as well as we have in order to keep peace. We can have both. I pray you will be peaceful and accepting of your survivorship knowing others have lost the war as you put it. Your mind is a battleground at the moment and needs to heal along with your body. Blessings to you and your family Tim.
I feel so alone
After having been diagnosed with Stage 1B breast cancer (also found in my lymph nodes), I had a lumpectomy and radiation. I lost my nipple in the surgery. I didn’t even feel worthy enough to go to a support meeting.
I’m an almost 3 year survivor of a very rare cancer called Rhabdomyosarcoma. When I was first diagnosed i asked all of the Why me, and How did this even happen questions that you could imagine. But now I’m asking Why did I survive? I’m a person of faith, and I worry that I’m not worthy of this second chance that God has given me. I worry that I won’t live up to the plan that he has set for me. My biggest fear in life has always been that I won’t be good enough. I’m currently pursuing my masters to be come a child life specialist and while sitting in class today in a lecture about grief and bereavement my feeling of guilt was more powerful than it had been in a long time. I’m watching families face the death of their children some only minutes old, and some only a few months. Learning about how these families processed the situation and how they honored their child both before and after their passing brought so many questions to my mind. Why were they taken so soon? 15months is not a lifetime, it’s just not. I don’t understand how an infant, baby, toddler, or child could be taken from this world when I’m allowed to continue to live even though I have many sins in my past, and still continue to sin. I trust that God has a plan for me, I just don’t know if I’m worthy of the opportunity to try and fulfill that plan. I worry that I won’t be good enough, that God overestimated me, and that I’m not worthy of this time. I feel like when I try to explain these feelings to people who haven’t experienced a battle like this whether it be health, trauma, or anything of the sort that they think I’m being ungrateful. I’m not I know how extremely lucky and blessed I am to still be here and to be as healthy as I am. I just don’t understand why someone who has not experienced everything I’ve had the chance to, or someone who was a better person than I was taken from this world and not given this second chance.
I was diagnosed with ALL at the age of 5 in 1986. I went into remission in 1989. Although I had a tough road during treatment, since remission I’ve been fairly healthy. I trouble with this because so many of my friends and others are still suffering even after remission from late effects and side effects from their treatment. It’s not that I wish anything negative against myself, but I have a ha r d time knowing that I was able to complete college, hold down a job, and am generally okay. I see so many struggle and it makes me feel terrible.I’m finding it very difficult to deal with this, “I’m okay, why couldn’t they be too?” I just don’t understand and have such a tough time dealing with this.
When others minimize your experience
I must have a terrible case of survivor guilt going on. My lumpectomy was fairly recent (Dec 17 for IDC with sentinel lymph node involvement). There have been many people in my life who have minimized what I have gone through as well as those who have told me what to feel, how to think and what treatment options to take. I seem to be caught in this vortex of resentment and grief. I was never afraid and felt very calm throughout the whole journey but now I experiencing this tsunami of emotion. It helps to read the posts of others and I am so thankful to have found this community. I do not feel so all alone now.
Not Sure Where I Fit In
I am sitting here stunned that so many people have had the same emotions that I am going through. My GYN sent me to a GYN/oncologist after a CT scan and an MRI showed a large mass in my abdomen. I was in total denial right up until my surgery day in Aug 2013. I was convinced I had fibroids. I had a radical hysterectomy plus removal of omentum, lymph nodes, tissue samples and a grapefruit size ovarian tumor. The surgery was through a 7 inch vertical incision from my pubic bone up past my belly button. There was a whole parade of specialists, social workers, etc. through my hospital room during the 4 days I was there handing me a binder title “Your guide to the Cancer Center” and preparing me for the worst. My incision became infected and opened in two places requiring twice weekly dr visit plus my husband had to pack the wounds twice a day for almost two months. Two weeks after my surgery the pathology report showed it was a sex cord stromal tumor with annular tubules and it was malignant. It was a very rare type tumor and very little is known about them. The good news is it was stage 1A. The medical team met and discussed my case and decided that I did not need chemo which was a huge relief. But because the MRI showed cysts on my liver and spots on my lungs I was sent to a gastroenterologist and a pulmonologist. Also, my type of tumor is associated with Peutz Jeagher syndrome so I was also referred to a dermatologist in addition to the gastro. After an endoscopy and a colonoscopy it was decided I did not have Peutz Jegher. In Dec I found a lump in my breast so I had a mamogram and an ultrasound, neither of which showed anything abnormal so I was sent to a breast specialist. She did an ultrasound and couldn’t find the lump but she could feel it so I am scheduled to see her again in 3 months. I saw my GYN/oncologist in Jan for a follow up and I see her again in 6 months. I have never gotten over the feeling that my oncologist office was for “sick” people and I didn’t belong there. The oncologist, nurses and staff are stellar and have always been kind and gentle but at my last appointment I felt my oncologist brushed off my questions and fears. I know it is probably my perception but it still gave me an uneasy feeling. I am fortunate that my family understands and is very supportive but my co-workers and friends just don’t seem to understand why I have endless dr appointments if “nothing is really wrong with me”. And, I too, don’t quite know where I fit in. There is a Ovarian cancer 5K run/walk every year. I would love to participate but on the application it asks if you are a survivor and would you like to be recognized. The survivors are given Tshirts, a special lunch, etc. I don’t really know if I qualify as a survivor but I know I have been through one heck of a battle and am still feeling the after effects.
Googled survivors guilt tonight because I cried at my daughters choir concert. Well, they were singing some sad songs and I am just so darn happy to be her mom. I just had my 2 year all clear pet scan! This should, everyone tells me, make me feel great and blessed and know I am one year further from that “nasty” year of chemo, radiation, surgeries. The thing is, at least in that year I had a defined role…my job was to be brave and beat cancer. Daily now I question my purpose. I question the manners of others. I am saddened by mean behavior and cry at kindness. I struggle to be an effective (what is that?)parent because I am afraid of conflict because if I do get sick again my two almost always great kids will live with guilt for the ways they treated me. I’m spiritual but not very religious. I’m not sure where to turn. How long will I be different?
Thank you so much for
Thank you so much for starting this supportpage. I had surgery to remove a tumor found on my right ovary, they took everything including both ovaries down to the cervix and several lymph nodes as well as biopsies of the omentum. I am 50 but was not yet near menopause so now adjusting to surgically induced menopause. The cancer was stage 1, no other evidence of disease was found, yay.
My mother was diagnosed at stage 3 and passed away 5 years ago after a two year battle. My father also passed 3 years ago after a four month horrendous battle with bile duct cancer. I feel tremendous guilt even speaking about my cancer because I haven’t gone through chemo and am only being on the watch list, every three months.
My significant other likens it to having a melonoma removed, it’s all over. It doesn’t feel all over for me but I feel like I don’t have the right to feel scared or ask for reassurance, i’m being a drama queen. I haven’t even talked to him about the menopause symptoms because he might think i’m seeking attention.
Where do you turn for support when you feel you haven’t had cancer enough to join a support group, run in race, wear a survivor shirt etc…
Everyone wants you to be happy and feel lucky and I don’t, I still want to scream at them for trying to convince me that my situation is “nothing” because it is not as bad as it could have been.
Thanks for a place to read about people in similar situations,
I’m not sure what to say that
I’m not sure what to say that hasn’t already been said. Just that I have avoided cancer support groups because my stage 1A ovarian clear cell carcinoma diagnosis is so rare that I feel that no one in the groups will be able to relate to me. I fear other ovarian cancer patients won’t think I belong there. I’m still learning to think of myself as a cancer survivor.
I too am exhausted by all of the medical personel commenting on how “lucky” I am, even though, I had a total hysterectomy and debulking with a post surgery small bowel obstruction which hospitalized me with a naso-gastric tube for 10 days, a TIA stroke requiring physical thereapy and I am currently going through Chemotherapy. If a doctor or nurse tells me one more time how “lucky” or how “strong” I am, I may scream!
I have managed because I am blessed with some amazing friends. Some are retired medical, some are cancer survivors themselves and some have lost friends and loved ones to various cancers. They have all been wonderfully supportive and know better than to use the word “lucky” in the same sentance as “cancer”! I honestly don’t know what I would do with out them. In the “Cancer World”, I feel very alone.
Thank you so much!!
I found this post after searching for a book or something that helps with survivor’s guilt and your post helped me more than you will know and more than I can ever explain. I just finished my 3rd melanoma surgery and while my first left an enormous scar both visibly and emotionally the next 2 were caught early. My third (which I had surgery for less than 2 weeks ago) was caught at my 3 month follow-up visit has strangely been the hardest for 2 reasons. I hadn’t quite recovered from my 2nd diagnosis and 2 in the past 9 years I’ve done a lot of charity work and it was some if those people (exactly like your story) who have said things just like they did to you. Thank you for posting your story, thank you for opening up I cannot begin to say thank you enough! Your words hugged me, your words helped me, I am so glad I happened onto your post! The gift cancer gives me is the ability to meet amazing people I might not have ever crossed paths with, you are one of those gifts. I don’t know you but I appreciate you so much! Thank you!
Thank you for this. And
Thank you for this. And thank you Google for sending me here. I was trying to figure out not only what is wrong with me and why I feel so disconnected from myself and everyone in my life; but also why I frequently feel angry. And even more importantly, why I have been unable to express any of this or talk about how much I hurt inside over what I am living with and through. I feel like I don’t have anything to contribute to the conversation. I’m Stage One…and that according to all of my doctors and everyone else I know makes me lucky. I feel so guilty and ungrateful for not “feeling” lucky. I feel like my biggest battle with cancer has been the battle with myself.
I was diagnosed with leukemia when I was 8. I did chemotherapy for 8 months and have thankfully been in remission for roughly 13 years now. I have struggled with survivor’s guilt ever since. I made a lot of friends at the hospital…a few I consider my best friends…and they died. I didn’t. It’s something I’ve never understood how to cope with. Then in high school, one of our classmates who I’d been friends with was diagnosed with a brain tumor suddenly, slipped into a coma for a month, and died. And the guilt hit me all over again. It’s something constantly at the back of my mind. “Why am I here? Why are they not? What am I doing/going to do that’s so great?” I just don’t understand.
I’m sorry if this is out of place or super random. I just needed to get this out. I’ve never really talked to anyone about this before.
A different spin for me
I am a survivor of acute leukemia, relapse with brain involvement, two skin cancer diagnoses, allogeneic bone marrow transplant and now, severe, chronic graft-vs host disease. I have seen many fellow patients suffer greatly and die over the course of 13 years since my initial diagnosis of ALL at 32. I am considered disabled by a sclerotic skin and fascia disorder which limits my flexion, stamina and immunity. I have felt aimless and sad lately, and couldn’t put a finger on the cause. Normally, I am optimistic and up-beat, despite the traumatic illnesses I have had. My partner works in oncology, and suggested I have a form of survivor’s guilt, or remorse. I was given a 50% chance to go 5 years with systemic ALL, 5% after relapse, 25% during transplant, and now I am a rarity, one of very few to still be alive. I call myself a professional patient, and my providers say I am an inspiration to them and other patients. People say that every day must be a gift, or that God has a plan for me, I must be soooo happy to be alive, etc. truth is, every day is not a gift. Some days are terribly hard. What didn’t kill me did make me stronger in some ways, but 50 lbs underweight, weak and unable to reach over my head, squat or walk more than a mile, it has also made my life challenging. My family, friends and prepared for my possible death at least 3 times, in earnest, and once, following transplant, I was declared terminal. It was a very hard time for my woman and the huge support group I have. My illnesses put everyone I know through the wringer, emotionally, financially and physically. nobody can grasp what it is like to prepare for death over and over, and live. I also almost died a few times. Each time I awoke from a NDE, I wondered if I was really alive. Each time, a little bit of the fire in me extinguished. I would love to be the beacon of hope and courage and survival for others, as I was in the early days of cancer. However, these days, I am challenged to find meaning in my experience. I struggle to feel like I have a purpose, other than visiting docs and hospitals and clinics constantly to get poked, prodded, medicated and studied. I try to write my story, but cannot find the words to describe how bitter-sweet the victories over death were. Therapists say I am doing great. PTSD is common among survivors of multiple life-threatening illnesses. Don’t worry, Nick, you’re doing great. Friends and family tell me I am their hero, and that I am so courageous. Well, I really just got “lucky” folks. Most of my fellow transplantees are dead or suffering terrible GVHD. Mine is severe, but I still take care of myself, drive and cook meals and find time to have some fun. I am not sure if my story is appropriate for your blog, but I am feeling that strange sense of aimlessness, and wanted to vent it. Talk about one-upping patients! I try not to, but when I meet someone with cancer, they always say WOW, my issues are nothing compared to that! It is perplexing, because I see that everyone’s life, whether they have cancer or not, is challenging. It’s all relative. Finding one’s self after dancing with the specter of death is harder than I had ever imagined. Watching so many die while I lived is even harder. Feeling like a lump instead of giving back and contributing is the hardest of all.
Hi, I live across the planet from you, yet I was going through the same emotional state as you. I had second stage breast cancer, with lumpectomy and only radiation. I tried to stay very positive from day one of diagnosis and didn’t let anyone around me feel anything was wrong with me. That led to a lot of people commenting that I look very healthy, upbeat and “normal” for a cancer patient. Next was, you are lucky you didn’t get your breast removed, that’s the “real” operation, you didn’t have chemo, that is the worse part, you didn’t go through the worse part. I’m confused, was I sick? Was the operation something comparable to ,say, an appendix operation? Should I have suffered much , in order to qualify for being called a cancer survivor. Since I don’t appear to ” look” sick, did I even have cancer , or was it just small mass I got removed! I feel confused, feel like a fraud, mentioning that I had breast cancer! While searching the net to see if I’m the only one sitting here feeling guilty that I didn’t suffer and wishing I had suffered a bit, have I gone insane, or am I just an attention seeker! I came across this and it made me feel…oh so much NORMAL for how I’m feeling! I’m not ALONE! It’s normal to have feelings like this! Thank you for your write up, you don’t know how much you have helped me, sitting in another continent.
Thank you for this article. Last year, I was diagnosed with invasive and in situ ductal carcinoma in my right breast. I was one of the lucky ones. It was discovered at a very early stage, the cancer was not an aggressive form, and it was highly hormone responsive. We lost our mother to breast cancer several years ago, so the diagnosis was frightening in spite of the prognosis. I had already endured a total of six biopsies taken from both breasts over a period of eight years, each time taking a stressful toll. Because of losing my mother to cancer, and because I could not endure the thought of being called back ever again in my life for another biopsy, I decided I had had enough, and opted for a bilateral mastectomy. Due to that decision, and because no cancer was found in the sentinel node, I never had to endure radiation. I’m just on hormone suppression therapy. I have absolutely no regrets about my decision, but there is that guilt.
From the start, after my mastectomy, I started feeling like I “cheated” somehow. Was I somehow a chicken for not opting for a lumpectomy and radiation? My mother endured three years of chemo and scalding radiation. My sister’s best friend had recently passed away after a courageous battle with cancer. Another friend’s wife has battled both breast and brain cancer, and she reached out to me when I was diagnosed, but I couldn’t face her. Here I was, essentially taking the easy way out. Or so I felt.
I have been very lucky. The mastectomy surgery of course was not a walk in the park, but it wasn’t the worse thing I could have imagined. The implanted tissue expanders caused some months of discomfort. And then there was the surgery to place permanent implants, and multiple surgeries involving tissue grafting. None of this was fun; it was often painful. But I have a wonderful surgeon, who has been my good Sherpa, making the burden so much easier to bear.
So why can’t I shake these feelings?
Now that things are winding down, and I will soon have to say goodbye to wonderful surgeon, I’ve been dealing a bit with something like post-surgical depression. I can’t stop thinking about “what’s next”. As sick as it sounds, I think I will very much miss the caring attention of my doctor and nurses. I live such a boring work-a-day life, and sometimes I feel like I should be making more of my second chance. But I have no idea how or where to start. And the people around me, they don’t really understand. They look at me and see someone who looks healthy, and I should just be “over it”. But I’m not.
I’m thankful that you wrote this post. I was diagnosed with lung cancer. I was very nervous and concerned and worried. I wondered what my life was going to be like. How I was going to cope with what was coming. Then two weeks later my cousin was diagnosed with brain cancer. We reconnected because we were experiencing some of the same uncertainties. I had major surgery and a lobe of lung was removed. Fortunately I didn’t have to go through radiation or chemo. He was less fortunate and was given a terminal diagnosis. I’ve been very happy and thankful to be alive, but it seems as if my experience was just swept under the rug. When I tried to relate my feeling, I was just shut down like my experience was insignificant. So I kept it mostly to myself as I am a private person anyway. I am so happy that he had the past 2 years to spend creating memories with his family. He has passed away and once again I am dealing with guilt. I’m thankful that a friend mentioned survivors guilt and that there is a place where I can share my experience and acknowledge my feelings. A place where someone understands. Thank You!
I had triple negative breast cancer 5 years ago. Stage 3. I had a horrible experience. Every symptom with chemo, I had. I had just finished with radiation and a friend of mine told me she had exactly the same. This is a rapidly growing tumor that has a good chance of metastasizing quickly to other areas of the body. It broke my heart to think she would have to go through it, but, she sailed through. So strong and tough. A year and a half later I am still doing well, she gets the diagnosis that it has moved to her bones. She is doing chemo all over again for another year and a half and it will continue forever, then wakes up one day 4 months ago with a horrible headache and throwing up. She went to the ER and she had 8 lesions on her brain. She tried everything even the gamma knife. Nothing worked. She died yesterday and the guilt is all over me. I can’t believe she is gone and I’m still here….how do I move past this guilt?
14 years on
14 years on from Hodgkin Lymphoma and I feel like I can’t talk about it any more, it’s in the past and I’m grateful but every now and then there’s a trigger and emotions flood back and I want to talk. I did have 6 months of chemo but I’ve said ‘only stage 2 Hodgkin’ and ‘more like a cousin of cancer because they know so much about it’ so many times that I don’t feel entitled to be affected by my history any more (but I am). I think I do have survivors guilt, and the feeling I’m not doing enough with the ‘gift’ of survival. Thanks for your post, it’s nice to hear others’ experiences and know I’m not alone.
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