I am chatting with a friend, and she notices I am still stressing the ‘small stuff’ and being disappointed about some people in my life. “You’re still angry at those situations, huh,” she says, surprised to hear me complain. She thought that, after my cancer diagnosis, those things would no longer occupy space in my mind, but they still do. I guess I didn’t learn my lesson from cancer.
“It’s OK,” she says. “I’d probably be doing the same thing post-cancer, continuing to waste my time.” (One of these days I need to write about the concept of “wasting time” – who defines this anyway?) So I reply, “I hope you would. I wouldn’t want you to pretend to please other people.”
She then tries changing the subject because she says I’ve been acting ‘confrontational’ recently. I disagree. What’s wrong with speaking my mind, especially when I’m being judged by someone who hasn’t walked my path? I’ve tried to excuse these people by thinking “they mean well.” But I now realize this approach has been distracting me from the real issues.
People expect us to be transformed after cancer — otherwise, we are failing as human beings. I believe we should tell people when they are being unreasonable, judgmental or unkind, even if those aren’t their intentions. I understand many patients don’t do this because of the fear of losing support. I’ve felt that way too. So yes, we will probably lose some friendships along the way, but do we really need friends who are unwilling to hear us out? Who wants a relationship where you aren’t allowed to be yourself?
But getting back to my ‘unlearned lessons’, I guess I am a stubborn student. I got an “F” in cancer class. So often, it seems that when a person is facing a tragedy, others think the experience should ‘straighten up’ the person’s life. Some people expect you to learn something from illnesses and other bad situations because they believe these things happen for a reason — one reason being you’ve been misbehaving in some way, and you need a little spanking from life. I can even picture some family members saying to each other, “cancer didn’t teach Rebecca <insert lesson>!” Teach me what exactly? What lesson do they think I should have learned from cancer? The lesson THEY want me to learn? I wonder if my cancer taught THEM anything.
Now let me be clear. I respect other patients who feel they’ve learned something from their diagnosis — those who consider the experience to be a self-transformation event for the better. As long as it is better for the patient, it’s all good. And yes, there’s definitely some level of transformation after cancer, but every person’s experience is different. I am not saying I am completely the same person I used to be. I am not — just as I wasn’t the same person 10 years ago that I was 15 years ago, long before my diagnosis.
I also realize in some ways I am still the same person I always have been. I stress the small stuff. I hate drama and try to stay away from it. Sometimes I create my own. I dread my unhappy associations with winter. I have little patience. I complain, even about Tamoxifen, the cancer treatment I should be grateful for because I am lucky to have that option. Still, the collateral damage is brutal. But these characteristics are what make me human.
Am I not allowed to be human anymore? I’ve already lost enough because of cancer.
I had never thought about lessons I should have learned from my cancer until people made me think of them. I do reflect on life in general but it never occurred to me that cancer was meant to make me a super hero and able to tolerate everything life throws at me. Why not just let me cope the best way that I can and respect me for it? Allow me to figure out some new normalcy. How about using kindness as a way to contribute to my healing instead of building unreasonable expectations that you yourself aren’t even sure you could meet, because you haven’t been there?
Pretending I am someone I’m not does not help my situation. Suppressing my feelings and emotions won’t heal me. People who judge my behavior during my most vulnerable moments are only thinking of themselves. I have walked away from such people and situations that make me unhappy. Those are the situations I DO have control over.
I worry about patients who are too preoccupied with what others would think of them if they don’t meet the post-cancer societal expectations. I’d tell those patients to stay true to themselves if that would make their lives easier. It certainly makes survivorship more tolerable for me. I’ve also been lucky to find people who are willing to listen without judging me. You might too.
The small c 
I have experienced all of this and could not articulate better! You helped me understand my conflicting emotions and why I felt that way. Thank you.
This is a common struggle we deal with. I am not sure these reactions we get from people would ever change as this is part of a culture. All we can do is express ourselves even if they still don’t get it. At least we let our emotions out. I hope you’re doing well.
This is a very difficult topic. The separation seems to be at the actual experiencing of it and the imagined “experience” of it. Empathy is a wonderful thing but it’s not IT and I don’t have words or mantras or assurances that a very real change happened. What value is there in “getting over” something unless it replaces the truth with a greater truth?
Can we say “I’ve changed and have had experiences you either haven’t had or have resolved in your own way.” There’s a quote from a psychiatrist that covers this and will see if i can find it.
Rebecca, I don’t mean this in a bad way but you’ve paid for the darkness and know it and why is that bad? It wasn’t a choice or some bizarre punishment for bad behavior. It just slammed right into to you and what you “do” with it is your decision. What if we could be who we are?
Scott, good to see you. I apprentice your insights. You always make me think. You are right when you say the separation has to do with the level of experience. I like how you also added the “imagined experience of it.” I think people try to put themselves in our shoes and often judge us based on how THEY think they would react if they were faced with the same challenges. I understand it is also human to do that.
I’ve often thought about why I get so annoyed when people perceive our misfortunes as punishments. Should it really bother me that much if I don’t believe in it? I have to think about this.
If you ever find that quote, please share.
Rebecca, found the quote and now think it might not be useful. Will put it at the bottom of this message anyway–it got me thinking and that helps.
Imagination is a powerful thing but as a short walk in a strange place it isn’t the same as living there. Of course we can all leave bad experience behind. Reject it, not think about it, close it off somewhere. Except it HAPPENED and those of us that it happened to need to contend with the sharp thing left in us. IN us.
So I was thinking about love and getting over stuff and remembered this song:
LEONARD COHEN No cure for love
Love makes us want to reach out and stop the pain in others–we can’t help it but do we fix things by denying it?
The quote: “It is hard for psychoanalysts to write about the destructive side of their interpretive work, in which they intercede to bust up a patient’s well rationalized or pathologically taught narrative. Yet when the analyst gives the patient a substantially different view of his material, he destroys his narrative cohesion and self-image. The patient may struggle against such difference and when patient and analyst are in dispute with one another, each of the necessity breaks the other’s narration as these anti-narratives are designed to disperse the hegemony of consciousness.”
“The Mystery of Things” Christopher Bollas, Routledge 1999
Thank you for the quote and for the song, Scott. I like Leonard Cohen. I don’t believe we fix things by denying them. I am trying to figure out if it would make things easier to ignore them — the people who aren’t able to help and to accept that some things aren’t meant to change (which wouldn’t fix things either).They might evolve but not as fast as we want them to, because we are all in different stages in our lives, and like you stated, with different level of experiences and perspectives. Talking about changes, check out this song (I apologize for the depressing song title): https://www.youtube.com/watch?v=H5Gz-Q_MFI8
“Listening without judging…” SO hard to do. Great that you’ve found some people who fit the bill!
Hi Alan! Glad to see you back. Yes it is very hard not to judge when you haven’t walked the path. I am aware even those who walk our path can judge us.Let’s just say I apprentice silence.
Love your way with words! “apprentice silence…”
You’ve given me lots to think about with this post. I am struck by the sentence of yours: “Am I not allowed to be human anymore? I’ve already lost enough because of cancer.” I want to mull this all over. I keep thinking that surely one of the best lessons is to be really honest with ourselves and others. This is the hardest thing of all.
Rita, I’ve sometimes felt like people want me to react numb to situations because I now have cancer to focus on but cancer isn’t my entire life. I also understand some show concern about my state of mind and probably want me not to stress about things that aren’t important (to them?). I am not too sure ‘honesty’ is even allowed post-cancer. I am still thinking about this topic and will probably share some additional thoughts later on.
I think after going through cancer (or cancer diagnosis), people expect us to change; eat better, stress less, prioritize life objectives better, be happier, or whatever it is that they think caused the cancer in us (in your case, I remember it is a hereditary situation, for which you or what you do has little, if ever, control – they need a lesson from a geneticist) etc., OR whatever they think should be more important for us after the ordeal (as you also noted). Yes these different opinions can be respected, and yes everybody likely goes through this storm and life after the storm in different ways. But, we are what we are and we will change if we wish to or forced to by life circumstances; not because others expect us to.
This post and expectations from others also reminded me something. I guess it is overlooked that a cancer patient sometimes just wants to feel normal (or similar to what they were prior to cancer); having a constant reminder of being vulnerable (or pressurized for change) because of the past cancer diagnosis and treatment must be heavy to shoulder all the time. I remember you had a post about the things that reminded you your cancer story; ATM I particularly remember… Who wants to be reminded of the ordeal all the time and constantly strive for better taking care or for changing their lives? I would not.
let us be what we are.
I must make a clarification: in the case of hereditary cancers, there is a way to control the impact of cancer; by screening (genetic or clinic) and early diagnosis. What the people may not have control or power over is the high risk of developing the disease, sometimes as high as 100% because of the genetic causes (which can not be changed).
Thank you for your words.The blaming game contributes to these expectations as well. I have a mutated gene but that’s only one part of the puzzle (damn ATM!) — no one really knows what caused my cancer. And yes, each person reacts to life’s circumstances differently and letting us be who we are would be very helpful. You make a good point about not wanting to be reminded of this bad experience because we already spend enough time thinking about it. That would allow us some normalcy.
I think I’m pretty lucky. The people closest to me, that I really care about, have never expected me to be different or better because of cancer. I feel that coming from society more than anyone in particular. The pressure that I do feel is to be back to normal, as if nothing has happened and I’m better. I get that from colleagues, friends and even my husband. That’s so hard for me to deal with.
Carrie, I’ve dealt with that issue too, and I find it to be just as overwhelming. Keeping some level of distance from some people has helped me although I understand we can’t do that with everyone. For those closer to me, I’ve found that they eventually accept it (not everyone though). I am glad you don’t get pressured to stay numb over real life situations.
Hi Rebecca,
Another excellent post. There are so many societal expectations out there for what we are supposed to do and how we are supposed to act/feel post cancer diagnosis. I say, ditch them all, unless they work for you of course. Love this – “Am I not allowed to be human anymore? I’ve already lost enough because of cancer.” Yes, yes, yes you are allowed! No “F” for you as far as I’m concerned. Thanks for being true to who you are.
Nancy, I totally agree, we should ditch them all. And yes, we also have to allow patients to cope the best way they can. It has felt that way to me, like I am not allowed to be human anymore.
Have I ever said how awesome it feels to not feel alone? Thank you for contributing to this feeling, Nancy. I know you would have given me a good grade in cancer class.
A great post. I have been rather disappointed with some in my life while I am battling this disease. I feel better than there are others like me.
Diane, I am sorry you are dealing with cancer and that you aren’t receiving the support you would want. Family can be tricky because it is more challenging to detach ourselves from that (or to not have some level of expectations). I hope knowing you are not alone gives you some sense of peace and that you’re able to connect with others who have walked the same path. The support I’ve received from people like you, has been incredible! I wish you well.
Ha ha, I think you know how I feel about learning stuff from cancer!
I try to respect those that tout the “cancer lessons” thing, but that has become such a standard cliche now–our society “expects” everyone to learn–it has become such a “thing”.
I once read some article about how everyone gets more bent out of shape about little stuff than big stuff, has something to do with the way the human brain is wired. I wish I’d kept that article to put a link here. Oh well, after I read it (fairly recently, in the past 6 months), it was a relief. I give myself permission to throw hissy fits over little stuff if I want.
CC, will see if I can find the article. It might be the realization that even the small stuff is out of our control and that kicks all the superiority out of the free advice crowd? Who knows? Living in a culture where everything is “curable” suggests there is an achievable normality that we should all strive for except what if it’s right for others and not us?
I sometimes feel like a “difficulty” for others and have to ask “who is it that’s having a problem here?” Of course there are limitations on behaviors and the pain we might cause ourselves and others but we all aren’t identical and have to live some sort of cheesy/acceptable life just so we fit in.
Rebecca, speaking of change, Loudon Wainwright, judgement and stuff I thought about how friendship teaches acceptance that’s unconditional.
Carole King, You’ve got a friend
CC, so many of us dislike those expectations but as long as we have people embracing those ideas, the culture will take forever to evolve. The other side of this is who determines what the ‘small stuff’ is? Maybe this was mentioned in that article you referred to. If you ever come across that article again, please share. And yes, like one of your articles stated, we are allowed.
Pingback: Weekly Round Up | Journeying Beyond Breast Cancer
Reacting to the collateral damage with all its physical and emotional trauma is to say you’re still alive and expressing human emotions. You are right that these other people are thinking of themselves. They’re not comfortable with what’s happened to you and haven’t learned they don’t need to fix everyone. Tell her she hasn’t learned that lesson.
Everything in life is about growth whether cancer or difficult relationships or jobs, and that happens through experience. You’ve experienced cancer and have done so in your own way. It’s not for your friend to tell you what you should be learning or not. Only you can do that for yourself. These people are highly annoying. I think that’s why many of us become more isolated or drift away from particular relationships. If it doesn’t serve you anymore, keep it (them) at a distance. Surround yourself with those who support and love you without the need to auto-correct your life. You’ve been through too much to subject yourself to draining people. xo
Eileen, thank you for speaking truth and for the kind words. I think one of the scariest things for us to go through is to lose control over a situation. Having cancer is sort of that situation and others don’t want to see that. You’re right, their behavior is an example of them believing there’s still some level of control or ways to fix things. The thing is we all have such little control over anything at all.
I have drifted away from some of my relationships (family included!) because I felt it was more harmful to me to stay than to constantly feel I had to be someone else, for THEIR comfort. There were other reasons too (it’s always a puzzle of issues, never one thing).
Thank you for supporting me.
Yowza. You shouldn’t have to pretend to be someone you aren’t. That is nuts! Everyone that had cancer is supposed to become a bubbly happy person or something? Hardly, it causes anxiety, depression, PTSD…. yeesh.
I know, right? There are two issues I struggle with: one group expects me to be back to ‘normal’ (to move on) and the other group wants me to be transformed — and by transformation they mean accommodating their needs, not necessarily thinking of me, the patient.
The effects after cancer suck. I believe it is the heaviest after treatments (from an early stage perspective). I hope you are doing well dear friend.
Rebecca, might be some people are not conscious about how much effort goes into keeping our selves together. Before I got sick there was lots of safety and comfort in things I thought would always work–I guess because I never tested them. Under stress many things that seemed safe and supporting broke and left me standing there alone. When things we thought we could depend on fail us we figure out how to survive first, polite come later. If at all.
Scott, you are right. People don’t realize how much we go through when picking up the pieces after cancer, and let’s not mention we are never really done with it. I feel I have multiple identities by trying to adjust between two worlds: the cancer world and the non-cancer one, because they are so different and neither has ended. But like you said, we survive first.
Thank you for that beautiful song.
Great post and great comments. Love Eileen’s comment in particular. We are who we are and feel what we feel. What we need from our friends and validation, not judgment, not ‘shoulds,’ not ‘advice.’ Just listening and love. xoxo, Kathi
Kathi, if only everyone thought like you do. Thank you for being part of my support system. xx
Meant to say, what we need from our friends is validation…well, you know. xoxo, K
Rebecca,
This is so spot-on. Society does expect a lot of people who have/who’ve had cancer, as if our life must be transformed for the better. In many ways, my post-cancer life has been better. But in other ways, it has taken a heavy toll on me and transformed me into someone I don’t want to be. I’m still searching for me, who I am. Because the person I was died when I was diagnosed with cancer. Fantastic post!
Beth, I feel the same way you do. Cancer, as an experience, has put me in a different place I am still trying to figure out. In some ways I’ve lost a sense of identity. At the same time, it’s hard to find a sense of belonging because life has become so uncertain. Can’t get too used to anything. We do our best. I hope each day is better for all of us.
To everyone here, I think this paper is helpful in explaining some of the reactions we are having. Reading Kathi’s mention of “validation” and Beth’s searching for herself reminded me of of a very important symptom of cancer that, my doctors anyway, openly ignore.
Loss of self: a fundamental form of suffering in the chronically ill
Cathy Charmaz
Accessed Aug 23, 2015 Via Marie Ennis O’Connor
Click to access Loss%20of%20self%20A%20fundamental%20form%20of%20suffering.pdf
<< Sociology of Health and Illness Vol. 5 No. 2 1983
Scott, I remember this article. I am going to read it again. Thank you for sharing with all of us. I hope you’re doing well these days, by the way.
Rebecca, I’ve read it a few times too. Closer to when I was in treatment it made me kind of helpless but now it feels more accurate to say the disorientation of having restricted personal resources left me overly defensive. We have to survive and remain as intact as we can and if that makes us less desirable to be with, then others can get used to it or piss-off.
I’m not sure if being a guy makes a difference in how I’m perceived when sick. Part of my alienation from my care givers was their insistence I be polite or care would be withdrawn and my response was to fight this because I read it as their asking me to be weak and dependent when it felt like that was the road to giving up. (Having given up once in an earlier crisis, it wasn’t going to happen again).
Are women under more pressure than men to display “good” behaviours? My answer to that is we all as patients are expected to be “together” if we want “care” or be devalued if we fight back. Only, it seems women carry a heavier weight in the being-agreeable department and this might conflict with how they see themselves as being “unacceptable” when fighting for their SELF?
Doing OK, thanks for asking. Doctor is away for two months so there’s no medical care and I have to be good:-) Have you decided the difference between big-stuff and small-stuff? I never can get it right.
I’ve nominated you for the Liebster Award. I really enjoy reading your blog and I think others would as well. Please follow this link to participate: https://alliemoonjourney.wordpress.com/2015/12/16/liebster-award/. Let me know if you have any questions.
Allie, you are too kind. Thank you so much for your support. I have a hard time with these nominations because I struggle choosing among great blogs. That’s why I don’t tend to participate. I would end up nominating all of you.
I love this post! It’s exactly how I feel also! People put the burden of transformation on us, they have also seen us go through cancer why can’t they learn something and change their outlook?
You are doing just great x
That’s right! We never seem to put pressure on others who see us go through the experience of cancer. It’s unfair to put pressure on us. We are too damn tired!
Pingback: And This is My Truth – A Summer Blogging Challenge | The small c