My mom and dad drove to Chicago for an impromptu Labor Day weekend visit. My mom sat by my computer this morning as I checked my email. We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”
Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.” Her reply: “I’d rather be weak.” I love my mom’s line of thinking here. It is so her: bold, tactful, and humble.
I think and write a lot about ‘What is strength?’ ‘What is weakness?’ It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill. I’ve surmounted these challenges not because I’m strong, but because the alternative means dying. It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.
In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient. She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had. That should not be my moment of fame.”
I agree with her. I’m not saying don’t celebrate the fact that I’m still alive. And I think it is great to honor cancer patients and recognize the challenges we face. But don’t call me strong when I have no other choice. It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body. I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my cancer is that it has helped me befriend weakness. I no longer think of weakness as a negative term. In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable. After all, cancer is scary business.
What is your response when someone says “What does not kill you makes you stronger?” What do you most want to be celebrated for? If you have a different illness, is there a lot of “strength talk” about your disease?
September 6th, 2009 at 10:14 AM
Seriously, do you have a view into my head? I just blogged about this last week. I hate the concept of “What doesn’t kill you makes you stronger.” With what my family and I have been dealing with over the past 18 months (cancer dx, husband’s loss of job, him having to move to NY to find work and being gone since April, recent death of a good friend), I would MUCH rather be weak, healthy, and together as a family than to have gone through this. But, it is what it is, and there’s no turning back or changing it. I’m not strong, I’m not a hero, and I’m certainly not someone that I want people to look up to - I’m simply a woman, wife, mother, daughter, and sister doing the only viable option for me - living. I do what needs to be done and I do it in a way that I can handle. If you think that makes me strong, fine. But, please don’t tell me that you wouldn’t be able to get through the same thing - you would. If you had to. And, please don’t try to justify my struggles by telling me this will make me stronger….this is just your way of making YOU feel better. It makes me feel like sh*t - why wasn’t I good enough before, and what is coming down the pike that I need to be “stronger” for?
Wow - sorry. Rant there. But, it’s so true. I like you mom’s sentiment - I too would rather be weak. And, the moment of weakness - those are the ones that I blog about honestly, openly, with cursing and crying, because those are the ones that people don’t like to see or accept - strength often requires acknowledgment of weakness and humility. I like to think that I have all of those - this is what makes me who I am….
September 6th, 2009 at 12:39 PM
I have been called brave and been told that I handled the whole cancer thing with “grace,” none of which are close to true, and while hearing “you are so strong…” for the nine dozenth time still makes me a little defensive and cranky, I have to keep reminding myself that people feel the need to say *something* but don’t know what else to say.
That said, it would be nice to be an inspiration to someone someday for something other than coming down with a bad case of cancer and surviving the treatment for it, you know? ;)
September 6th, 2009 at 5:32 PM
I know that (most) people feel like they have to say *something* but — honestly — compassionate silence would be preferable to being told, one more time, that ‘you’re so strong.’ Maybe the only thing that makes more uncomfortable is being told ‘you give me hope.’ Here I sit, scars running from the top of my ribs down to my navel and then under the navel all the way down to the rectum I no longer have, colostomy bag on my left, wearing Depends because I have urinary incontinence. I fall asleep at 8pm on Thursday night if Mon-Tues-Wed are too intense, and I have to spend at least one day of every weekend sleeping. When people tell me that I give them hope, I want to remind them that the source of hope lives inside of them, and all they need to see it is a mirror.
I’m not strong — I’m just putting one foot in front of the other (when I can stand up.)
September 7th, 2009 at 2:32 PM
It is interesting that we all note peoples’ desires to say *something*, and while they are usually full of good intentions, what comes out is the last thing we need to say. I’m really big on creating “elevator lines” - one liners that we can keep in our back pocket to say in response to these kinds so situations. Something that gets to the heart of what we feel and isn’t a slap in the face (though I understand the desire to do so!) I’m curious if any of you have had positive experiences of explaining to people in the moment why being described as strong does not fit what you are going through?
September 7th, 2009 at 5:01 PM
I agree with you, Kairol. It’s like having your head pushed under water. Are we strong to emerge, gasping for air? It’s what we do to survive.
I’ve had luck with the response, when people have said, similarly, “You look so good”, which is supposed to be a compliment but makes me feel misunderstood or doubted.
“Thanks. I may look good but I can’t tell you how surreal this all feels.” If I trust the person, I may follow with, “I’m terrified/freaked out/furious/depressed. I just want to feel like people are at least trying to understand.”
As for how to respond to “You’re so strong” - which I heard over and over as a teen when my parents had a horrific divorce and I acted so maturely (in public, anyway) — maybe something like, “Thanks, but I’m just putting one foot in front of the other and trying to maintain…”
Lori
http://www.lorihope.com
September 8th, 2009 at 10:13 AM
Something I really hadn’t thought about so thank you Kairol once again….And here is what I think…
When I was widowed at 25 I heard alot of “you’re so strong…” “god doesn’t give you more than you can handle…” Well, honestly I was just trying to survive. Just trying each day to find a reason to get out of bed. Put one foot in front of the other to carry out my simple daily tasks like showering and work when all i wanted to do was lay in bed and cry the rest of my life away. I do believe that having gone through the experience itself gave me strength to face what was ahead.
That was a cancer diagnosis at 31 years old. And then I heard “wow, if it wasn’t for bad luck you would have no luck at all…” Nice huh?! And again…the praise for my strength once again. But really…as before I was just trying to live, move forward and make it through.
I remember when I was widowed some people saying to me “if this happened to me I would never get through it…you are doing so well.” and my response always was “You really don’t know what you are capable of until you are put to the test. I hope you never have to know what this is like but somehow you would find a way as I am…”
I have always felt that what I have survived has been what has given me strength and not that I was strong at first and that is how I made it through if that makes any sense…
September 8th, 2009 at 4:33 PM
I don’t have cancer, but I was diagnosed with a rare auto-immune disease called Wegener’s Granulomatosis about 2 years ago, when I was 27. It took about 2 months for someone to figure out what was wrong with me, and by then I was in renal failure. I was on chemo for 5 months, and my recovery has been very difficult at times, but I’ve managed to stay in remission for about 20 months now.
People like to tell me how strong I am, having gone through what I did. I certainly don’t feel strong. I think you are exactly right when you said that you have no choice. I don’t see where there is any choice at all. I just do what I have to do every day to survive, and at least once a month I get so overcome with anxiety that I puke my guts out.
September 10th, 2009 at 9:45 AM
Speaking for my wife, who was not a cancer survivor despite 11 months of wanting to be, such comments as those noted simply tired her out.
“Why do they waste their breath saying such stupid things when they could be asking if I need something from the store, or, a back rub - and then doing it? Stupid people… Just trying to make themselves feel better!”
Cancer killed her after she lost faith in most her “friends,” and, sadly, “family” being of any help at all beyond lip service.
In our marriage, I was the cancer survivor, by the way, because what killed her didn’t kill me. And I know full well I was strong before the entire event began so talk of “gaining” strength is bull. You can only run the race you trained for.
Interestingly, those same people tell me the same stupid things they used to tell her (Oh, she died? (Uh, yes.) Well, God doesn’t give you more than…”) and I feel about the same way about this “support” as she did about hers.
I’m not bitter or angry, just wiser. And, happier, now that I know not to waste time and/or energy with anyone who says such things. I much prefer the people who say, “Hey, that sucks! Is there anything we can do about it?”
September 10th, 2009 at 11:09 AM
My dear friend and I just had this discussion, or tried to, the other day. We had to rely on phone calls during her long period of breast cancer treatments and I often hung up the phone thinking I had said something really stupid. It happens. But now, this friend’s brother is looking at inoperable lung cancer and he has turned to her because she was “so strong” during her own treatments (something she doesn’t feel is appropriate or true). I tried to reiterate that okay, maybe it wasn’t strength, but she displayed an attitude that made us want to be there for her. I think that’s partly it - if the person with the illness is putting up a good front in the face of mortality, than the rest of us learn from that. It’s not her / his duty to do that, I know, but it made me want to do whatever I could for her - much more so than if I had this “woe is me” friend (which would be understandable, but more difficult to support).
I write this as I pack to go to go to the funeral of a man who lived his last year under hospice care seizing every opportunity to do the things he loved - hunting, snowmobiling, cooking for family. He didn’t do those to be a teacher to the rest of us, but, of course, that’s exactly what he was.
September 10th, 2009 at 12:21 PM
please read (although pay per view):
Cary Vera-Garcia is now with us in spirit alone. Her contribution was published in the January 2005 issue of the Journal of Gynecologic Oncology, as per link below and pdf file attached. This is extraordinarily significant for our ovarian cancer community and many cancer patients: to have a patient’s view published in this highly respected and important medical journal.
This article allows us to understand the patient’s perspective regarding the term ‘chronic’. Please also feel free to circulate the information.
Sandi
http://tinyurl.com/6t2jy
September 10th, 2009 at 12:33 PM
I don’t mind people’s comments, as long as I know they mean well and aren’t avoiding me or the subject. (Some people stand back like they’re afraid of cancer cooties.) I think what they see is strength is the absence of whining. When they ask how you’re doing, they want reassurance, not a play-by-play of your nausea or whatever. Give them a break, just be kind.
September 10th, 2009 at 2:19 PM
I feel all that been said above. It is comforting to hear others who get tired of putting on a good face.
I’ve had a life threatening non cancerous tumor removed, and two unrelated cancers and other problems, surgery, radiation, and chemotherapy. I am tired of being sick. I’m tired of when I complain about the side effects, they respond “well it’s better than dying”. Yeah, idiot, I already know that. Even doctors do this. But don’t I have a right to feel bad about the damage it has done to my body (and mind)? I may be in remission, hopefully cured, but the side effects of the diseases and the treatments remain.
I have no foresight or wisdom, or strength, that I didn’t have before, maybe less, because there will always be these shadows following me around. None of the bubbly “the first day of the rest of my life”. No, what I felt with each treatment was fear of it not working, hoping it would work. I felt yes, it’s the first day of my life losing some more of my body’s functioning not just from the disease but from the treatment. I felt sadness for my wife and son. The time it has stolen from us, the ruined financials even with a so called gold plated insurance policy. I use to feel confidence about the future. Now I have to envision that future with great uncertainty.
Some days you just feel too tired. Tired of the dozens of pills, tried of the needles, tired of being intimately handled by dozens of stangers, tired of worrying did they wash their hands, “How can this be sanitary when their smock is dirty?”
I stayed at an on site residency for about six weeks with other cancer patients. It was so good to not have to put on the good face, to talk with others like me.
Yes, I’m bitter.
September 10th, 2009 at 2:54 PM
When my husband was diagnosed with testicular cancer in December 2007, we were home for the holidays from my graduate studies abroad. In the blink of an eye - the cliche really fits here- my entire life was turned inside out. I never finished my degree - we couldn’t go back to Poland in the midst of treatment, and as we had no insurance for the ordeal since we’d been living abroad, the cancer itself made pursuing the degree a financial impossibility. Afterwards, my husband got a job, thankfully, but his insurance wouldn’t cover any treatment for a whole year- which meant that for an additional year we’ve had to live with my in-laws.
We’ve been lucky that we didn’t get too many comments about “being strong” - but that’s only because we have a handful of friends who have already suffered a great deal, so they knew better. One topic I’d like to include in this discussion is the difficulty that both my husband and I now have in relating to people whose lives have gone as expected. I find them trivial - not that I resent them so much as that there is no depth. I think these friends have had a hard time understanding us as well - how nearly two years later, we’ve hardly put our lives back together at all. That’s the side of the story that non-cancer family and friends can’t appreciate: just how LONG it takes to start to move forward. After all, we want much more than to merely survive.
September 10th, 2009 at 3:21 PM
“You’re so strong”…Yes, I heard it a lot and in all languages!! But the reason it is so infuriating, is that it makes me often think of those people who didn’t “survive”, who didn’t even have a chance at “surviving”…or just a few weeks, a few months. SOooo, what are you going to say about them, folks? That they were “so weak”…?? Absurd and judgmental at best. Even if “You’re strong” sounds like a compliment…in my opinion it’s only indecent…because it’s only saying those who died were not strong enough to deserve to live.
September 10th, 2009 at 10:01 PM
I like being told I must be strong because I did pull forth some fortitude to get through treatments. Also my body was strong and I withstood treatment pretty well compared to others.
On the other hand I do often point out that the speaker would have done the same things…doesn’t take anything special to do as you’re told.
The battle metaphor irks me most. It was not a battle so much as a surrender to treatment!
C
September 11th, 2009 at 3:20 PM
Just finished 6 rounds of chemotherapy and I didn’t mind the “strong” and “brave” comments at all - they gave me strength! Listen, cancer is tough and I want all the encouragement I can get.
But, just because someone didn’t survive doesn’t mean they weren’t strong. It takes strength to get through each day when you fight cancer. It’s a fight and I want a coach in my corner cheering me on!
http://theway.posterous.com
September 11th, 2009 at 4:01 PM
Thanks for all of your comments. There have been a few references to whining and I want to write a bit about that: I personally cannot think of a better reason to whine than facing death while you are puking your guts up. I know that a happy cancer face may make for a nice invitation to friends and family to pitch in and help, but isn’t giving and helping really about compassion regardless of the patient package it comes in? People in need are sometimes dejected, ugly, gruesome, scared, and pessimistic. They need our love and attention just as much as anyone else. I have talked to many patients who feel emotionally strangled by putting on a happy face for others when what they want to do is break down like a baby and have a pity party for themselves and have that be okay. I think it is okay. The Housewives of (pick your geographic location) can whine over a broken fingernail on reality TV and we call it entertainment; a cancer patient whines over physical pain and mental anguish and we call it weakness. Cancer is sometimes just putting one foot in front of the other and it is not always going to sound or look dignified. Keep your comments coming, and have a great weekend. Best,
Kairol
September 11th, 2009 at 11:44 PM
Thanks for the topic. I really do want to share. My one liner today is “Thank you”. While I haven’t always felt this way … I am now thinking about how ackward it is for them, to know what to say. What ever is said is most always intended to be compassionate and that is how I try to receive it.
Blessings to all!
September 12th, 2009 at 6:57 PM
What a great line…don’t call me strong when I have no other choice. What would most people do if faced with a diagnosis of cancer? Strength comes from many sources and many have it deep inside to keep moving forward. Thanks for your writing
September 16th, 2009 at 10:23 PM
Thank you for having the nerve to say what so many cancer survivors think and feel but don’t say because we know they people gushing at us will just think we’re ungrateful, horrible people (who probably got our cancer as punishment for our nasty attitudes). I read the NYT article and practically shouted an AMEN, and then proceeded to email it and tweet it to the world.
I’ve been through this. My response to the NYT article below (hasn’t appeared in their comments yet, and I needed to correct the bit about blowing my brains out. There was an important word-”not”-missing from that sentence). Seriously, thank you:
I so appreciate this post and have emailed it to fellow survivors. This is really one of the things that we don’t understand til we go through cancer. I was guilty of it myself before having cancer. I recently read an article by the former editor of Mamm, and she did the whole “cancer survivors are so strong” thing, and I was thinking, Boy, if she doesn’t even get it, it’s no wonder someone outside of the cancer world doesn’t get it.
I’ve been told endlessly how strong, brave, inspiring, yada, yada, yada I am. I’ve been told how it’s my mission to inspire others now. Well, guess what? I didn’t sign up for the role of cheerleader. I didn’t want this cancer job, and I refuse to carry some banner out of a sense of duty or guilt. Haven’t I been through enough?
But… I understand that people don’t know what to say and that they get all farklempt by the romantic idea of me, survivor, battling. Triumphant breast cancer survivor! That’s me. Yep. I wish you could have seen me in my room at night, when I was alone and going through some serious what-am-I-gonna-do fear the like of which was anything but a picture of fortitude or bravery.
Like the author has so eloquently expressed, there’s not a whole lot I did other than deciding to [not] blow my brains out or live in denial. Basically, I said, “oh crap. I have cancer. Well, I guess chemo is what I’m supposed to do, so let’s do that so I hopefully don’t die.” And I did it. Surgery, chemo, radiation. Am I brave? Yeah, I guess, but no more brave than you are for the stuff you’ve done in your life.
I don’t say anything about this except to other survivors because, you see, they’re the only ones who understand where I’m coming from. I do understand the nonsurvivors awkwardness, the desire to fill the empty space with some kind of language. I do get it. You think it’s a compliment.
In my opinion, the worse thing you can do is suggest a cancer survivor/patient caused their own cancer, and an astonishing number of people have done just that. I had breast cancer at 39, so they want to believe that I did something wrong or didn’t do something right. They’ll wax on about their opinions that all illness originates with thinking, their views on wearing deodorant, underwire bras, breast feeding, chiropractic, dairy, detoxifying, etc., when I’ve never asked for their opinion or advice. That, to me, is the most classless, rude thing a person can say to a person with cancer.
September 17th, 2009 at 11:25 AM
Great post… I’ve all but given up mentioning much of anything about my cancer besides the necessities (“going in for routine tests - yes, thank you, all is well”) - it’s a weird feeling that I get from people; it’s as if after 20 yrs they can’t believe I’m neither CURED nor DYING…[just stable & relatively functional; another hard-working productive member of society!]
I deflect all the strong & brave compliments also: overall I was just damned LUCKY to be young & strong & healthy [relatively speaking, heh heh, other than having an incurable form of thyroid cancer!] - so I got through my surgery & radiation treatments w/a minimum of disability…
September 17th, 2009 at 5:08 PM
[...] hear more from Ms. Rosenthal, read her book and blog, “Everything Changes.” And then join the discussion below. If you’ve experienced cancer, how do you feel about being [...]
September 18th, 2009 at 2:33 PM
I wish I had found this ages ago. I always felt silly hearing people describe me as strong. I shared many feelings that all of you have. When people told me that I was strong, or gave me the ‘whatever doesn’t kill you line’ I always wanted to ask what I needed to be so strong for. Is there really something that scary in my future that I have to be stronger than everyone else? I knew they all meant well, but it made me feel horrible none-the-less.
September 21st, 2009 at 11:10 AM
I do agree with the old saying of what doesn’t kill you makes you stronger because as a survivor of two battles of cancer (stage IV), I do a feel a sense of accomplishment and strength that I beat this invisible monster. It makes me feel that the trivial things of the past don’t matter and there is better and more important things in life. In that respect, I do feel stronger. However, I do have to agree that I would rather have learned this lesson without cancer.
September 24th, 2009 at 9:06 AM
Well i haven’t had cancer, but in my family (especially after my mom died in a car crash and a few years later my father was diagnosed with Lou Gherig’s) everyone keeps telling me how strong and composed I am.. well, what is the alternative? losing it, when I’m the only one my father can rely on? it would have been so much better if someone said “You can cry if you want to”. When my boyfriend told me that he had testicular cancer as a young man, i told him “you must have been through hell”. He said that was true, but there was nothing else to do, he just had to go through with it. and he also said that when he saw other cancer patients, in a much worse state than he was in, that helped him not feel too sorry for himself. All in all, sometimes a gesture is better than a word.
September 28th, 2009 at 12:28 AM
Hey, I stumbled upon your site a little while ago and have read all the info quietly. I decided might post my firstpost. Unsure of what to say but here goes. Informative site. Will visit in a bit to hear more of what you have to tell me.
October 12th, 2009 at 5:48 PM
A moment in time maybe I was that Nietzschean Ubermensch word puppet. Comfortlessly word swaddled by the imagined safer limits of the unrealistic ideal.
When I was doing my first ca treatment I stayed at the local Ronald McDonald House. If not for cancer I would have been an Army Officer in a few months. I might have been swell at it.
I got to be friends with a teen age girl with brain cancer. Maybe I started thinking she was the stronger solider. I don’t know but I wrote about it shortly after cuz maybe words for what little things they are was all that I had left once they were too late to be given.
Strength … make stronger … are just words … just a need to put into words what can’t adequately be felt through just words.
How does a person ever be just words?
I never knew what strength was
until I held Her hand
I swaggered into Her room
just like a real man should
My compassion was unbounded
She was to sick to survive
She asked me to be a pallbearer
in between She laughed and joked
I knew my strength would help Her
i found i was a lie
Her compassion was unbounded
i was too weak to cry
I swaggered into Her life
or perhaps it was i crawled
I never knew what fucking helplessness was
until i could only hold Her hand
October 17th, 2009 at 9:39 PM
I kind of felt that people who told me I was strong were just ackward and uncomfortable with the idea of cancer. Although it is true for me that I had to channel some inner strenght to cope with the big “C” for the second time, but honestly, I don’t think there is any choice. We do what we have to do when we have to do it, just as when there is a fire in your house. I don’t think brave or strong really applies to me to be honest, and I still cry a lot despite being well almost a full year.
Plus when I was in rehab, they played 1980′s music, and if I hear Belinda Carlyle singing “ohh, heaven is place on earth,” I swear I am going to strnagle her. Is strangulation a sign of strength?
December 7th, 2009 at 11:56 PM
I don’t have cancer but suffered a head injury. The elevator line I always got was, “but you look so well!” and of course that’s not always true. Despite the life altering, life changing situation I was told to “make lemonade out of lemons”-to which I wanted to say back “but lemons really suck!” I heard that I was strong, and that I dealt with it so well, and all such things. People are of course well-intentioned but I think there is also just a discomfort, not knowing what to say or how to interact. We’ve been taught to compliment or to make lemonade but sometimes life deals you lemons and you just want someone to acknowledge that lemons are lemons, not lemonade.
http://yogainthesky.wordpress.com/news/
February 24th, 2010 at 1:14 PM
I’d rather be weak and have the life people covet. I’d rather learn how to be strong on my own without cancer and disease forcing it on me at 3 years old. I’d love to have a life that others want. I’m tired of being what people fear.
March 6th, 2010 at 8:09 PM
This argument is the ESSENCE of my YouTube video, “Cancer is No Joke.” 9http://www.youtube.com/watch?v=5WO3FF8rpSE&feature=youtube_gdata) People forget that the moment that you seem “so brave” in the face of cancer might be the only moment that day you don’t want to kill yourself!
March 10th, 2010 at 7:01 PM
I relate to how lonely it can be when someone tells me “I’m so strong” or “that God only gives you what you can handle” but I don’t resent it as much when people say “You are brave”… Even though I didn’t have much of a choice, I could have made things much more “difficult” for myself throughout my cancer treatment. I chose to take it day by day, let people help me, find humor where I could and try to learn from it. I tried not to let the fear overtake me and that is where I give myself credit. I certainly had my moments but yeah, I was and am brave.
March 15th, 2010 at 10:22 PM
This is a great blog topic, Kairol. I think I have mixed feelings about this. When people said to me that I’ve been “brave” or “strong” or “great bouce-back,” I did appreciate their comments and took it as a compliment. And I really do feel like “brave” is a fair way to describe it, like Anne commented above too. Because I could so easily have taken the cowardly way out, and almost did… by not going forward with the biopsy… by not going forward with surgery. At the end of the day, no doctor can force you to take treatment, which is difficult no matter which way you slice it (no pun intended). That all being said, I also think such comments certainly have no basis in any true understanding of what it’s like to be the cancer patient. Just like what a lot of people here have said, if they only knew the real truth, the many quiet tears that I’ve cried, alone and afraid, vulnerable to the utmost core. The weakness and pain and self-pity that I felt immediately post-op, alone and dizzy and queasy in my hospital bed. These are things that I just don’t bother to share with most people who think I’m so “strong.” I don’t think they’ll really get it.
June 3rd, 2010 at 5:32 PM
I was just dx with cancer, it was aggressive in its growth, but surgically all removed. I have a lot of follow up still. Because the time from my dx to treatment was so short, it still seems very surreal, as one writer above stated. I still get sad about it, and I have received many odd comments. I see the comments as a way of the other person coping, b/c they want to be reassured that it will all be OK. It is like when they ask you about Your Symptoms. They want to know that it can be Found. But I did not have any symptoms, it was a routine exam discovery. That makes people scared. That makes them feel like life is treacherous. Well, you know what? It is. And that’s OK. I did get the God comments, but again see that as their need for reassurance. I believe God walked me through this, I did not become stronger, it just brought out the strength already there in reserve. I did not have any epiphany afterward, no life-affirming goals, nothing. Just got up one more time. Sometimes I feel guilty for not having this huge rush of WOW I”M ALIVE, but, it’s just a quietness inside. I am still unsure.
June 4th, 2010 at 1:13 AM
Anonymous 6/3
I’m really sorry to hear about your recent dx and aggressive tumors. Please let me know if there is anyway I can assist you in navigating the cancer world.
I too never had the ‘wow I’m alive’ rush from cancer. I actually had that a lot in my life before cancer so I feel like I didn’t need adversity to teach me that lesson. I don’t think things happen for a reason or in order to teach us something. As you stated, I think they happen because life can unfortunately be full of treachery.
One thing I have become better acquainted with as a result of going through this cancer is the ability to experience that sense of quietness inside. Is it because of cancer, or because I’m at an age where I might naturally be maturing and changing in that direction anyway? I don’t know.
I hope you don’t feel too guilty for not having the WOW rush. And it sounds to me that you are pretty sure about how you feel right now. My experience with cancer is that it has never been one steady thing for me, I have never come to a final resting point with it, instead my relationship to my diseases transforms every so often. Everything changes, hence the name of my book.
All my best to you,
Kairol
June 18th, 2010 at 10:54 PM
I have been a “victim” of the “God & burden” remarks. As if God has a given tonnage of bricks that must be allocated to the entire Human Race, and He noticed I looked stronger than those around me, so I get to carry a few more in my pack than most others. At worst I’d like to think God is an equal opportunity deity and everyone gets to carry around the same number of bricks. At Best I’d like to believe God doesn’t go around handing out any loads of bricks; we humans are adept enough at creating our own.
I’ve also had the “warrior” jargon thrown at me, on countless occasions. It bothered me from the get-go on several levels. I am a warrior, a real one, albeit retired now after 20-years of doing it for real. It’s as if a cancer patient mounts up and rides out to meet the enemy, and decisively engages The Big C on “Death Ground” to win or die. Male bovine feces. Real warriors don’t willingly choose “Death Ground” for their battles. It’s a surefire way to eventually have a Very Bad Day. Real warriors know there’s no glory in war, not one iota. For most, it is hours (sometimes days or weeks) of boredom punctuated by moments of sheer terror, and the violence wrought by conventional weapons is horrific.
There’s no glory in coping with cancer and the medical treatments for it either. Most cancer treatment (surgery plus chemo and/or radiation) is arduous, emotionally draining, physically exhausting and it spans months. It’s been two months since (six weeks of) head/neck radiation ended and I still do not have the pre-radiation energy level. Many folks think one should be running at 100% within a few days to a week after it ends. Although it continues to improve every week, there are some non-trivial radiation side-effects that will never recover. Even though the radiation regimen was designed to minimize it, there was unavoidable collateral damage.
Did it make me stronger? Hell no. I was already mentally tough (thank you Uncle Sam), had an excellent immune system and was physically resilient without any other major medical conditions, all an advantage. There was a choice of rising to the occasion, or curling up into a fetal position and kissing my ass goodbye. I chose the former. Cancer is a “come as you are” party and the existing mental and physical strength is all one gets for the duration (of surgery/treatment) plus at least a couple months. Get strong(er)? Just the opposite. Both take a thorough thrashing. What it does do is leave cancer survivors with an enormously huge mental, physical and emotional pain scale. Things that are a Big Deal to others suddenly seem very trivial compared to cancer, many of the cancer surgeries performed, and the chemo/radiation treatments used. Already had the benefit of a very wide scale (thanks again, Uncle Sam), and it’s gotten wider now.
To improve physical strength and aerobic conditioning that was lacking when diagnosed, I recently took up cycling again after a 35-year hiatus. The goal is building endurance for long-distance randonneuring. That will make me stronger. What cancer did do was change my perspective on many things in life. It made me different.
July 17th, 2010 at 8:13 PM
“Don’t call me strong when I have no other choice.” I love this line. Thank you.
I wanted to break down in despair every sing;e day through my chemotherapy and radiation when I had to make a one-hour commute and work all day at the same time. I was puking into a bucket on the passenger seat and trying not to crash my car on the way there and back. I would get to work and have to sit in the car shaking and crying for half an hour before I could face the short walk into the building. I’d get to my desk and people would say, “You’re so strong! I can’t believe you’re at work!”
It was the most offensive thing I could imagine. Do you really think I WANT to be at work? Do you think I’m doing this because I’m so dedicated I just can’t bear to miss the additional pain and misery and utter exhaustion of trying to work a 40 hour week while I have more chemicals sloshing through my body than the Toxic Avenger?
Has it occurred to you that maybe, just maybe, losing my job would mean losing my insurance and being utterly screwed, and that a cancer diagnosis doesn’t mean you get an automatic one-year paid holiday? Boy, do I wish it did.
August 5th, 2010 at 5:57 AM
I am several months out of treatment, and I keep thinking that the whole cancer experience just makes me feel so weak. I am trying to get back to the normal life, catch up with a degree, job applications, figure out what to do with my future, how to fit in check-ups and what to do about insurance… And I am completely overwhelmed. I feel like before cancer, I was able to cope better, now, I just get so easily anxious, I lost my confidence in myself, in plans, in decisions, in my choices… I am at the same place where I was two years ago in terms of my career, relationships (or lack thereof), degree, back then I was scared of how to deal with everything, but now I feel paralyzed. Now, I just feel so terribly weak emotionally, uninspired, and overwhelmed…
And then I think - I should be stronger, I should be able to learn, I should turn cancer into this “life changing experience” people talk about, I should have become a “better person” - what did I do wrong??! So when someone says I am strong, all it does is to remind me of how I cried myself to sleep last night, and that yes, I am expected to be strong. And inspiring. Like all those other cancer survivors on TV. So in the end, It brings down my self confidence even more…
August 5th, 2010 at 7:49 PM
P.:
You have to do nothing at all to make cancer into a life changing experience for yourself. It has already happened: Your plans are delayed, your finances compromised, your relationship life halted.
I don’t like applying to cancer the adage of “When life gives you lemons make lemonade.” Cancer is not an opportunity, it is a disease. Sure, there might be some positive things that people find in the ugly experience of it, but it is a crappy experience that can turn your life inside out.
Crying yourself to sleep makes perfect sense to me. I hope you won’t have to do it every night, I hope you have great medical care, find a good job, and have great romance in your life too. But until that happens, look yourself in the mirror - a good, long hard look and tell yourself that self-confidence is born from being real about who you are and what is going on in your life. It sounds like you are doing a superb job of that. It isn’t glamorous and that’s why we don’t see it on TV. But as I say in my book - my heroes are not cancer patients who can run marathons or climb mountains but those who can manage to put their head on their pillow each night and face their thoughts.
September 27th, 2010 at 1:31 PM
I just wanted to say thank you to everyone who made a post here! Currently, my fiance’ has Stage III Pancreatic Cancer (currently inoperable, hoping that changes very soon)… This web-site and Kairol’s indcredible writing have really helped me as we struggle to get through this disease.
Strong, what is strong…. Not crying every second of every day, well then I guess we’re strong. I don’t think people really understand that when you leave your home you have to leave certain emotions behind for a while, otherwise you’d never get through a day. This doesn’t mean that when you are home or in a private setting that you don’t lose it. I am an emotional person, my fiance’, not so much… It’s a good balance. When he has lost it on the rare occasion, I’m able to step up for him because I know he does it for me. And because he let’s me cry and carry on without making me feel small or stupid, I have a much easier time stepping up when I have to for him.
Also, thanks to the people who commented about “You look so good”….. UGH on that one. Ed, my fiance, just lost his mother to cancer last week - two long days of hearing that over & over again. But we just smile and say “thank-you”, because really, people just don’t know what to say.
MK & Ed
October 6th, 2010 at 1:02 PM
MK & ED, I’m sorry to hear about what you are going through…
I agree completely about the whole “you look so good” comment. I have people tell me that all the time. I’m post treatment and my hair has grown back so it makes more sense now but when I was bald, pale, bloated and full of acne hearing that “phrase” made me cringe. But the biggest reason it made me cringe and why it still does, is because of how I felt/feel “inside”. Everyone seems to think cancer is done when treatment is done but I am really starting to feel like the real battle is now…It is a mental and emotional battle. People think I am “back to normal” and I feel very different, like I can’t relate and that I am alone. I’m scared for reoccurence, of death and I’m scared that I’ll never have a child. (I’m 31.) These are the things that people don’t talk about. The things that make this disease so horrible in my opinion. The things that make sayings like “you are so strong” or “you look so good” or “cancer sucks” seem so off-putting and trite…
October 7th, 2010 at 11:23 PM
Anne,
When I traveled around the country interviewing young adult patients for Everything Changes, I heard over and over again that life after treatment was the hardest part. I’m really sorry to hear that you too are struggling with post treatment.
From the outside, many people assume when treatment is over that your cancer experience ends. If only it were that easy. For me, post-treatment was the first opportunity diagnosis that I was able to take in what all was going on in my life. And of course it was the first time that I had to think about the future of cancer. It was no longer how do I get through treatment but what if my cancer comes back? Or, what long-term side effects might I have to deal with?
Over time, I learned ways to educate people around me so they would get what was going on with me. I’d say simple things like “Yes, I’m really glad that treatment is over too, but this is actually the hardest time for me because I still don’t feel well and there are a lot of things about my future I’m having to mull over and it is really hard.” I’d always say it politely. People heard me. I don’t know that they all fully understood, but they started to realize, no, my life is not all one big celebration after treatment. There’s still a lot to go through.
Hang in there as you ride the waves.
All my best.
Kairol
November 18th, 2010 at 10:58 AM
I just stumbled upon this site and am so glad I did. I too always get the “you look so good” comment. I was diagnosed with NHL 3 years ago. After Chop-R I was told I’d be in remission for 7-9 years. When cancer recurred a year later, it was harder to take than the first time. Caught very off guard. My oncologist stated he hadn’t ever had a patient relapse that soon. So the past year and a half, I’ve been going thru Rituxan. Tuesday will be my last treatment. I am struggling this past two weeks with a lot of fatigue. And instead of being excited about the treatments ending, I find myself being sad that at least I have been in remission during treatments and worried about how soon it will return. I think my hubby doesn’t quite get it.
My circle of friends has gotten small. I hear all the time that I look good. I am overweight and I guess they expect that I should look like a skeleton. I love the Lord and believe God has been my strength thru this all, but I would have loved a friend who would have cried with me, called frequently to see how I am and invited me out to lunch. Instead, this past year, my mother in law has dementia and we have spent much time dealing with that. 3 friends have died of cancer. I was with one of them the night she died in hospice. I was told how special I was for doing that. No, she had no husband, no kids. Her parents were passed away and she had no close relatives. During this time myself and another gal who has survived cancer told her we would not leave her alone. It was hard. My brother died unexpectedly a month ago. It has been a hard long road and it is not over.
It would be nice to respond truthfully when someone asks how you are, but I have even had a few that when I told them, they quickly lost interest halfway thru and started talking to someone else. My counselor says most people are afraid of talking about it because they don’t want to face the fact that it could happen to them. Enough of my babbling and thanks for having this site.
November 18th, 2010 at 12:33 PM
Anonymous,
My heart aches for what you have gone through, not just with your own care but with all of the illness and death that you’ve had to deal with recently. I can’t begin to image what you are going through.
I wanted to let you know that you are not alone in being afraid to end treatment. In speaking to hundreds of cancer patients, I have heard often that patients are afraid of ending treatment because it is often the only pro-active option they have for keeping cancer in remission. I assume this must be even more so true for you given your quick and quite unexpected relapse. The people around you might not think this is normal, but I certainly get it, and so do others on this site.
When people say dumb things to me, I like to have a polite, rehearsed comeback to tell them that will help educate them about what I’m going through. If someone says to you “That is so great that your treatment has ended!” maybe you could try saying to them: “Thanks so much for your excitement. Yep, I’ll be glad to not have to deal with the side effects of treatment. But, I’m actually more scared right now than I am happy. Treatment’s the one thing we know that’s been able to keep me in remission, so it’s totally scary for me to go off of it and just wait to see what happens, especially since the results the last time my cancer came back so soon. God, it’s sooooo stressful.”
Sometimes these kinds of polite and educational comebacks are remarkably effective. Other times, no matter what you say the person you are talking to is just not going to get it or does not want to hear.
I’m glad you have a counselor who understands. And I hope that you can surround yourself with others who do too - even if they are only online…
All my best and big wishes to you for a successful transition off of treatment.
Kairol
December 27th, 2010 at 2:01 AM
“From the outside, many people assume when treatment is over that your cancer experience ends. If only it were that easy.”
Insightful, and I’m more than certain we all wish it were that easy!! This is what most people that haven’t had a close encounter of the cancer kind do not understand. To them it’s the same as nearly all (serious) bacterial or viral diseases: diagnosis, treatment, recovery, cure, ***finis*** (emphasis on “finis”). I’ve had to (hopefully politely) tell folks cancer patients will have a life-long relationship with oncology and other medical specialists, even if they’re allegedly completely “cured.” It’s not just periodic scans and testing for relapse, recurrence or mets, it’s also dealing with the morbidity of permanent side-effects from treatment which are often not trivial. Coping with most of them may be reasonably effective and well understood, but they’re still a PITA.
December 31st, 2010 at 3:36 PM
Once again, I have read over all the emails and I am encouraged that there are others that get it. It is never over. But I am learning to go on. To enjoy my grandkids, my kids and my best friend hubby. The hardest thing I deal with is why bother to set any goals? Why look ahead? And it is better to just deal with what the day gives you.
In my last post on Nov 18th I shared some life situations my family and I have gone thru this past year. Just found out my 82 year old dad had lung cancer and they can’t do anything for him. Still waiting for the biopsy result to find out what kind it is. My heart hurts so for him. And they didn’t want any of us calling them for a while so they can absorb this. I can’t wait to talk to my parents and try to support them during this time. They live down south and we are up north, so this will be a challenge. If any of you are praying people, please pray for them. Thanks
January 2nd, 2011 at 11:39 PM
i have figured out that people can’t win with me. on one hand i want everyone to act like i never had cancer, so don’t ask me how i am feeling, or say “oh you look so good” just pretend it never happened. and on the other hand, i need people to be compassionate and understanding as i try to rebuild my life.
the stupid comments that were the worst for me were the people who told me that after radiation i was “done”. that it was over. and those comments came from people with thyroid cancer. that was the most misleading thing of all, because for me, the hardest part was just beginning.life after treatment SUCKS and no one told me.i heard the synthroid dosing is a pain in the butt, but no one told me i would be exhausted,overwhelmed, sickly thin,anxious, depressed, basically a cancer survivor in recovery. and the ridiculous way people react to you, and family that cant deal with you being sick and want it to be over the second you get a clean scan.family members how act out and go through their own denial,grief, anger etc and then take it out on you-the freaking patient! doctors who are close family friends who took amazing care of you but once you are “cured” ie clean scan-cant handle any follow up issues because like everyone else, they just want it to be over. HELLO!!!! do you think i want this to go on and on? do you think i want friends and people saying over and over and over “how are you feeling these days?” do you think they want to hear that i feel like crap???? or when they tell me how good i look. yes i am skinny now, when last you probably saw me i was pregnant or still had baby weight, but this skinniness didnt come by a regular diet and exercise that i controlled. no it came from 2 months of starvation. it came from 2 months of pure hell. id rather have the last 15 lbs back thank you very much.
i agree with the “don’t call me strong/brave/amazing when i had no other choice” and don’t tell me that now i will have a new appreciation for life, and i wont sweat the small stuff. i sweat everything bc i live in freaking miami and had to wear a damn scarf in 90 degree weather to protect my scar. all of that is the biggest load of bs i have ever heard.
i hate the whole think positive thing. how can i think positive when i had no choice about any of this? there is nothing about this that is positive, so all the cancer affirmations and cheerleading and facebook posts about cancer patients only having one wish-to get better make me want to throw things. maybe in 6 months or a year or 5 years ill feel differently and i wouldn’t know what to say to me right now either,and i know i said the wrong thing to friends in the past, but i wont make that same mistake again.
lastly, my fav stupid comment is when people who dont know say “you had twins? you would never know form looking at you! how did you get so skinny you’re so lucky!” i want to say i’ve got 2 scars to show you-one on my stomach to prove i had babies, and one on my neck to show you why im thin. and have i got a diet for you!
January 29th, 2011 at 12:19 PM
Thank goodness that I’m not the only one going through this. It’s taken me 18 months post diagnosis (stage 3 adrenal cancer age 28) to brave looking online at anything cancer related! I am fed up with people telling me I’m ‘inspirational’ because I’m upbeat despite everything I’m told and carry on with life and appreciate all the amazing things I do have.
Kairol, you nailed it when you said that people just sometimes have to say ‘something’ and that your heroes are not cancer patients who can run marathons or climb mountains but those who can manage to put their head on their pillow each night and face their thoughts.
For me, I’m not ‘strong’. I’m just living and making the most of everyday I do have. Other people see that as something amazing, but surely they’d do the same in my situation? I can’t imagine any other way of getting through this - curling up into a ball and crying won’t make it go away (although I do have those days!). I’m still me.
Thank you for highlighting this topic.
February 13th, 2011 at 11:13 PM
When my young daughter was first diagnosed, I felt numb and scared. I went into action doing what needed to be done … be there for my daughter, understand the disease and what would be required to treat it, balance a job and care for by son. When people said I was so strong it was somewhat reassuring… like they were sending positive vibes along with prayers willing it to be so. Oh course I’ll be strong for my family! But cancer IS still tough and that encouragement was important.
That was the reality for about the first year. Into the second year of treatment it became to feel like a false compliment. I was finally feeling, intensely, many emotions. The juggle of managing it all and weathering the treatment setbacks were taking a toll. We didn’t have a meaningful support system. And as that second year wore on, I was losing my grip … I was forgetting things, fatigued, avoiding things and becoming very anxious.
Yet none of this seemed apparent to ANYONE around me. I still heard how strong I was, and I began to be more bold and say, “I don’t think so, really I’m not as strong as you think.” But I was dismissed and was told, “Some people would really fall apart, but look how beautifully you’re keeping everything together.”
The debt mounted, the demands on all fronts were unrelenting and I felt for sure the cracks in my façade had to be showing. Nope, still perceived as strong. And I began to really resent that word. My daughter was doing well overall with treatment but me, my husband and son were worse for the wear.
Now, I am just not as resilient. I overworked, overtired, less productive and completely stressed. TOTALLY. And I am not seeing understanding or support. I sense disappointment and confusion. People just didn’t expect this from me … after all, I’ve been so strong! Since I didn’t breakdown right off the bat, it seems I lost my window of opportunity when that would have been expected and acceptable.
As my daughter’s treatment is winding down, I can already sense that everyone on the outside expects it to be over and be all better soon. I’m assessing the damage left in the wake of cancer … to our emotional & physical health, our finances, and the uncertainty about what’s in store for the future. And my daughter will surely have adjustments post-treatment.
I also feel shame that I couldn’t be stronger. And I’m a little resentful that there wasn’t more help and support that could have mattered. It hasn’t just been a fight against a disease. It’s been a fight against expectations – my own and others’.
June 14th, 2011 at 12:14 PM
Thank you for citing your excellent post more recently. Rereading it now, I’m reminded of the times people told me I’m strong and how I felt about it. And the thing that comes to mind is how I reacted when I got home after being diagnosed by my urologist with my second cancer. All I kept thinking, and mumbling to myself, is “No. I’m going through this sh*t again. I can’t do this again.” Of course it was irrational. My cancers have both been eminently treatable and I’m now doing fine. But having dealt with cancer once, at that moment, having a sick feeling in my stomach of what lay ahead of me, I felt I had done my time and wasn’t prepared to cope with it again. It was not exactly my “strongest” moment and, for many reasons, not something I share with many people. But I had many such moments in the ensuing weeks and months. I often feel that it’s not OK to share with others, including other cancer survivors, those moments as doing so makes us sound “weak” or “whiney.” So I steal myself from those feelings and forge ahead.
June 22nd, 2011 at 5:54 PM
Kelly Bergin wrote- “I’d love to have a life that others want. I’m tired of being what people fear.”
What a sad and beautiful way to put it. I also wish I knew how that felt.
July 26th, 2011 at 9:00 PM
I do not like being called strong. My cancer experience has just begun. I was diagnosed in Feb with Thyca and had surgery in late March. The entire time everyone called me “brave” and “strong”and very few people saw through that and saw me as “scared”. The thing is people don’t realize that when you are told you have cancer your world may stop but the rest of the world doesn’t. I didn’t feel strong I felt as if I did what anyone would do in my situation…do whatever you have to do to ensure your survival and recovery. I think that is human nature not bravery. I still had assignments due for school and a month after surgery I had finals. The world did not stop because I had cancer. I had no choice but to decide to either take a semester off or deal with the discomfort of hormonal therapy, recovery from surgery, and finals. I decided to stay in school. People don’t realize that it’s not bravery it is doing what you gotta do to live your life.
I have good days and bad days. I have days when I can’t get out of bed and days when the thought of staying in bed a minute longer depresses me. I get scared at the thought of a check-up and get annoyed when people say I got the “good cancer,” the easy one. I’m exhausted I am 29 and nothing about the changes in my body and mind are easy. But what choice do I have? I could stay in bed cry and sleep my life away or I could get back to living my life because 6 month check-ups and body scans and all of that is never going away. For the rest of my life every 6 months I will be sitting in a Drs office checking my levels..so I might as well make it a part of my life and stop fighting it.
July 26th, 2011 at 9:30 PM
Also, people don’t like to talk about cancer so what other choice do you have other than to put on a happy face and seem strong? It’s what people want from you anyway! Might as well make them happy. No matter what if you actually let them know how you feel they will just say “get more sleep” “drink more coffee” etc.
September 3rd, 2011 at 2:19 PM
Thanks for writing a great post about an oh-so-common cancer experience. Strength can be deceptive, we all know that. I’m just playing the hand I’ve been dealt. If people want to call me strong, that’s fine by me. I could be called worse things!
October 16th, 2011 at 1:21 PM
J- I was so glad to read your post! I had Thyroid cancer 12 yrs ago. It’s never really “over”. I get the skinny comments, after scans your fine comments. It’s still a struggle everyday to feel okay. I love this website and how it brings all these things to light. I have also stopped “doing” everything for everybody. It’s funny how people disappear when you can’t help them anymore. I take it one day at a time. I was 21 when I was diagnosed and had an 8 month old baby. We may look fine but we continue to have our ups and downs.
December 5th, 2012 at 3:31 PM
I try to adopt a positive, humor-filled attitude because that’s who I am as a person. I don’t want cancer to change my personality. My real issue with people calling me strong (when I’m just being myself) is that if I did bury my head in my pillow all day, crying nonstop, I would *dare* someone to tell me that I’m being weak. We are all strong and it’s not because of our non-choice in having cancer. It’s because, like any hardship, we have the courage to do the best we can. But the best we can changes by the day/hour/minute/second. We are strong and we should embrace that-I just think other people who call me strong don’t understand why their statement is correct.
December 10th, 2012 at 1:16 PM
Thank you for this thoughtful and thought-provoking post. Thank you also to all those that commented through the past 3 years +. The fact that a series of comments is still receiving new comments after such a long period shows better than anything how much of an issue this is.
I received news of relapse and metastasis only 10 days ago, and I’m still trying to get to grips with that. Having been declared “cured” (with the normal caveats of course) half a year ago after 3 years of regular check-ups, these news were of course surprising. Strong? Not really, I think of it as being realistic and considering the alternatives: curling up in a ball or wishing it to go away don’t seem like options to me.
As for having someone to confess to and being weak with, I am happy to have a supporting wife, but of course I worry about bringing too much sorrow and stress to my significant other. I am still able to sleep in the wee hours of the night, but maybe I’m still in denial?
My blogspot has a “translate” button. ;-)
December 10th, 2012 at 2:27 PM
Marlang,
I am so sorry to read about your recurrence and metastasis. You sound like you have an incredible amount of self-awareness. That is the golden ticket. With self-awareness you can dip into denial, burden your loved ones, and take what time you need to come to terms with your most recent smack in the face. And since you are not wishing it would all go away, I’ll do it for you! Hang in there.
Kairol
November 18th, 2013 at 8:49 PM
My response to “you look so good” is “if only that could be my cure.” or to someone I know better - “it’s my f you to cancer”, which is how I really feel. The best thing a friend ever said to me when I had a reccurence: “I don’t know what to say. What do you need?” I know people feel they have to say something - I’m sure I was one of those people before my cancer nightmare - but I’m so careful now with the words I choose when responding to people with cancer.