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Do You Ever Feel Like a Cancer Misfit?

I have written about the walls in Cancer Land. The divisions. The rifts. The hierarchies. Today, let’s talk about fitting in, or rather, not fitting in.

Cancer or no cancer, have you ever struggled to fit in? 

Who hasn’t, right?

Share about a time you struggled to fit in with a comment below, if you want to.

I’ll go first.

As an awkward preteen, I stood half a foot taller than my older sisters. I’d often be asked, why are you the tallest if you’re the youngest (of the sisters)?

Yeah, dumb question.

When you’re already feeling awkward for umpteem reasons at that age, getting asked a ridiculous question like that sure didn’t make me feel better about being tall. And btw, I’m not even tall. It’s just that in my family I am.

And do you remember high school?

Yeah, me too.

Flash forward a bunch of decades into my post-cancer diagnosis life.

Sometimes, even today, I feel like a cancer misfit.

What about you?

Do you ever feel like a cancer misfit?

What do I mean?

Well, let me give you some examples.

As a brca2+ person, I belong to a couple online groups that were set up to support others like me, meaning other brca+ people. I sorta fit in. I sorta don’t. Sure, I embrace that whole knowledge is power idea. But heck, I didn’t even want to find out about my potential genetic mutation at first.

(Long story. Read my memoir, if you’re interested.) I procrastinated about all that, too, and look where that got me.

Yep. Sometimes I feel like a misfit.

I am not an advocate who travels across the country attending conferences or one who deciphers the latest scientific articles as so many of my fellow advocates who I greatly admire do. I traveled across the country once to attend a Living Beyond Breast Cancer advocacy event. It was a good experience, but the traveling advocate role is not for me. I just wanna stay home. I choose to advocate via my keyboard.

So, perhaps I’m an advocate misfit too.

I wasn’t young when I was diagnosed. I wasn’t old either. Okay, not that old. Younger than the “typical” breast cancer patient at diagnosis anyway.

Yep. Misfit.

I am not a fan of the rah-rah, wear pink, sisterhood camaraderie sort of groups.

Misfit.

I have chosen never to sugarcoat my cancer experience. I believe sharing the ugly sides of breast cancer can be uplifting in a weird (but necessary) sort of way, too. Lots of people will never understand my approach or even try to understand because they don’t want to understand.

Misfit.

I cannot find silver linings in this cancer mess. Heck, I don’t even want to find silver linings in cancer. I still say, cancer sucks. Period.

Can we just stop trying to re-frame it as something it’s not?

Misfit.

And the labels. I rarely refer to myself as a survivor, in fact, the label sorta makes me cringe. And yet, even after nine years, I have yet to come up with a label that fits that non-cancer people understand.

And don’t label me as strong, brave, courageous or anything else either. I was pretty much a wimpy cancer patient. Still am.

Misfit.

My heart and soul is with my sisters and brothers who are metastatic, but I don’t completely fit in with them either. (Not that I want to.)

Misfit.

Only a handful of bloggers who were blogging when I started are still blogging.

Why am I still at it?

Misfit.

I am the only one of my siblings who’s had a cancer diagnosis. (Thank God.)

But still, misfit.

I know I’m supposed to be more grateful for my reconstructed chest. But honestly, I’m not all that satisfied with it.

Misfit. 

People assume I have moved on and just shelved all that cancer stuff. I’ve moved forward, but on – that’s another matter.

Misfit.

I could go on and on, but you get my point.

And yes, of course, I know I’m supposed to follow my own advice and “do cancer” and cancer survivorship my way. Ditch the expectations. Ditch the guilt.

Be real. Be me. I mean, I’m always telling you, my Dear Readers, this.

And yet, why is it still so hard?

Misfit.

I wrote this post because like usual, I am wondering if you have ever felt the same.

If you have, please tell me about it.

If you want to read more articles like this one, Click Here.

Do you ever feel like a cancer misfit?

Or maybe just a misfit in general?

When you feel like you don’t fit in or don’t measure up, what do you do?

If you liked this post, please share it. Thank you!

 

Do You Ever Feel Like a Cancer Misfit? #breastcancer #cancer #patient #womenshealth #mentalhealth

29 thoughts to “Do You Ever Feel Like a Cancer Misfit?”

  1. Wow, this touched me so much, I’m feeling the same, a misfit. What do I call myself, not a survivor, I’d really like a word that’s better. It’s helpful to know we aren’t the only ones with feelings like you described. Love your blogs. Thank you!

    1. Shawn, Thank you for sharing that this post touched you. Always nice to know there are other misfits out there. 🙂 I wish I could come up with a better word than survivor to call myself, but thus far, I have not. I’m not sure why it even matters so much to have a different one, but it seems to for some reason. Thanks again for sharing.

  2. I was pondering this same thing last night! Every point hits home. I am definitely feeling like a misfit and have since de novo diagnosis in 2014. Thank you for continuing to blog !

    1. Liz, I imagine being diagnosed de novo kinda made you feel like a misfit right out of the gate in some circles. Some people aren’t even aware that’s even possible due to all the early detection messaging out there wrongly thinking it must be your fault somehow – like why didn’t you catch it early? So much misinformation still exists. Thank you for reading and taking time to comment too.

  3. I had a pathologic complete response to chemo from triple positive BC. I was confused about how to react when people said “you’re cured, right?” So I asked my oncologist, who said the most accurate reply is that my cancer is in remission or that there is currently no evidence of disease. He doesn’t like the term “survivor” or “survivorship” either.
    You have a nice way of relating to other misfits

    1. Patty, Nice to hear your oncologist isn’t a fan of the survivor label either. It’s misleading when even some in the medical community throw around the cure word when it’s not really reality. Thank you for chiming in on this discussion.

  4. Nancy, I too don’t feel like I fit into any group of cancer “survivors” that I’ve ever met. I don’t like that word, I avoid the whole pink thing, I prefer to keep my feelings to myself any more, except on your blog. I guess the only group I feel I fit in is right here in yours…so thank you for that!

    1. Donna, Well, I’m happy to hear you feel you fit in here! ‘Cuz you do! Maybe we’re all just a bunch of misfits, cancer or no cancer. I always love hearing from you, Donna, so thank you for sharing your thoughts on this one.

  5. I too feel like a misfit! Survivor? Warrior? Brave? All words I’ve let others call me and yet what did I survive exactly? I was stage 1, of course I “survived” so far. I’m six months out from diagnosis, let’s not get ahead of ourselves folks. Warrior? Why? Because I had surgery and did chemo? Is there anyone who just lays down and quits from the start? Brave? I call BS. If I had been given the choice of whether to run into this burning building called breast cancer, I would’ve said hell no, no thanks, no way. By all means, someone else go ahead. Personally, I don’t even want to advocate from behind a keyboard. Every time I read about someone with MBC, I have anxiety and I randomly cry for days at a time. I can’t stand up and talk to others about it. I want to forget this was ever a part of my life. My grandmother and my aunt were both diagnosed with BC; my aunt metastasized. And yet, neither had the BRCA mutation, and likely neither do I. Yet when people hear I was diagnosed with BC at 37 years old, they inevitably ask if it was genetic. I know why. They want to hear me say yes, so they can breathe a little easier that it won’t happen to them because it doesn’t run in their family. And yet, I want them to know it can happen to anyone, at any time. I WANT them to be just a little scared. Maybe because I want them to feel my fear? My pain? Just for a moment. MISFIT. Everyone says I’ve been so positive through this whole process, and yet it hasn’t felt that way to me. I’ve just been living. I don’t see silver linings. I don’t think cancer has made me a better person; a better mom. It’s made me scared and angry, and by turns impatient, anxious and easily frustrated. It hasn’t “brought me closer to God.” It’s made me feel less like anyone is watching out for us and more like when this all ends—it simply ends.

  6. I guess I feel like a Misfit because everyone tells me I’m Brave, but inside I’m a quivering mess. You can’t NOT be brave. You can’t sit in a room, cover your head, and pretend that this isn’t happening. So . . . am I a Misfit because I feel that way?

    1. Linda, You’re right, we do what we gotta do. Not sure if that equals being brave or not. I’m wondering what you say to people when they tell you you’re brave – if you ever admit that you feel like a quivering mess inside. I guess you can be brave and a quivering mess at the same too. Thank you for sharing.

    2. I’m feeling the same way Linda. Trying hard to not let everyone see the true inner frightened mess that I am.
      Thank you Nancy for this blog.

  7. I feel like a misfit because my cancer was Stage Zero. I had a lumpectomy nearly two years ago and take tamoxifen, but I feel like a fake when I say I had breast cancer. I’m sitting in my oncologist waiting room with patients obviously having chemo and/or radiation, feeling guilty because I didn’t have either. I very grateful for my early diagnosis and treatment, but I feel like I’ve cheated.

    1. Linda, You’re not a fake. There are those hierarchies and walls, but your experience should not be marginalized. I’m sorry if you’ve felt that it has been. There will always be some who have it better and some who have it worse. Thank you for reading and sharing.

  8. Me too. I did not have reconstruction due to complications, I gained weight I cannot lose & turned into a full blown tomato shape. I am suppose to be grateful that surgery, chemo, radiation, and a trial is why I am still in my life. I feel that I don’t know how to be grateful, that I am wasting the extra time I gained. Was I brave? No, I weathered serial panic attacks as I showed up for each procedure & even though I still exists I do not feel safe. I can’t move past cancer because cancer changed me into a person with a serious health history every doctor considers overriding in any care. Survivor? I hate that term, I call my remaining breast the survivor.

    1. Lin, I hear you. Pretty sure many of us do. I had to chuckle when I read that you call your remaining breast the survivor. Now, that fits. Thank you so much for sharing.

  9. Yes, I do feel like something of a misfit. It started with the news the doctor was dreading to give me on January 9, 2009…
    Doctor: I’m sorry, the results of your biopsy are in; you have breast cancer.
    Me: Thank God!
    Doctor: Are you ok?
    Me: Yes!
    She was rattled. I was grateful, and I’ve stayed that way for over 10 years. There’s a simple reason. My Mom died 3 months after her ovarian cancer diagnosis, and I knew the odds were high for me – could be ovarian, could be breast. I got the best possible diagnosis; breast cancer was treatable – I had a chance. Gave myself the gift of a prophylactic hysterectomy the following year and did 10 years of Tamoxifen. I won’t lie; the side effects of it all were no picnic. However, I accepted the cancer, without complaint, and refuse to allow either cancer or treatment to steal my life. And I have no fear.
    That’s my story…a tiny bit of it, anyway.

  10. Misfit – it’s a word that also means nonconformist, rebel, renegade, free thinker, anti-establishmentarian, and so forth. We choose our paths in this life of ours – a life without recognition until we die and I suppose in some way, we are the Joan of Arcs of the cancer world. There’s no compulsory behavioral treatise we must follow to get to the end. We choose our therapy, our providers and we choose when and if we want to keep going with medically proscribed protocols. God knows the things I would like to do before my body gets too tired of this pain and I have this little thing in my heart called hope, and if hope makes me a misfit to some then call me a misfit.

    I talk to my oncologist about what I want for my treatments and the goals of our long term strategy, and he even shares his white papers with no qualms about my ability to give inputs on either front. Like you I write a no b.s, blog and I choose my topics based on what’s going in my world – the ugly and the beautiful. I’m not the most popular because I’m not into pink washing and putting a pretty face in the forefront of my writing. To hear the comment – I’m so glad your blog gives my feelings a voice means there’s a lot of misfits like us out there and they’re probably not able to take the smile off in public for fear of not seeming strong. Cancer doesn’t make me a better person. It’s not a gift. I’m retired at an early age, I’m financially insecure, I’m angry at the medical community for the lack of funds going to MBC research and we eagerly become the guinea pigs for new treatments so that some day this is a chronic condition and not a terminal illness.

    Call me a rebel. I’m a misfit and alone most of the time. But I love you Nancy. You are a rock star, keep writing and do it from wherever you want, I’ll keep reading!

    1. Ilene, Thank you for sharing your insights. I love them. And you are very kind to say those nice things about me and my writing. Thank you so much.

  11. I feel like a misfit because in my circle of family, friends and acquaintenances who have breast cancer, I am the only one with MBC. I do not know anyone with MBC. I do not have the breast cancer gene. I feel like a failure because I didn’t remain in remission and I have let everyone down by getting MBC. Intellectually, I know this is an irrational. perspective, but it is genuinely how I feel. What did I do wrong? Was it something I ate or didn’t eat? Did I drink too much, not take the right supplements, not follow the “right” spiritual practice? Should I have done the experimental drug trial, stayed on Tamoxifen beyond five years? Should I have done this or that? That’s how I feel like a misfit.

    1. Janet, I’m sorry you have those feelings about failure. As you mentioned, intellectually you know you are not responsible for your mbc diagnosis whatsoever. But those thoughts still creep in. Pretty sure most of us relate to that. Guess you have to keep reminding yourself that none of this is your fault. Because it’s not. Thank you for reading and sharing, Janet.

  12. I too, dont like the term survivor. And I hate being called brave and strong. I dont feel Brave and strong when I am crying on the couch because I had a mastectomy and the reality is still settling in almost 6 months later. I feel guilty that my cancer wasnt “bad” and I didnt need radiation or chemo. I havent found any silver linings either. Especially not in the “free tummy tuck and boob job” I had done.

    1. Diane, Don’t feel guilty. Your experience should not be marginalized by anyone, including you. And yes, those silver linings…Thank you for sharing so candidly. My best to you.

  13. Yep. I was at an event and someone who runs a cancer support group said that lots of people feel that their cancer brought so many wonderful people into their lives, they wouldn’t trade the experience for anything. Well, I would. In a heartbeat. Cancer isn’t a freaking gift. And I react very strongly (and negatively) to being told I’m a fighter and “you’re going to beat this!” Really? They have a crystal ball that can tell them with certainty that Cancer won’t kill me? Or are they saying that it’s on me if I die because I didn’t put in enough effort? And, like you, I’m grateful for my reconstruction but it doesn’t look like me and I’m not thrilled with it.

    The funny thing is, I’m a pretty positive person in general. But boy, there are things about cancer and how it’s perceived that make me cranky!

    1. Secret Agent Woman, Like you, I would make that trade in a heartbeat too. Lord, that sort of comment you heard (and will hear again) irks me. As you know. If someone feels that way, fine. But to expect others to feel the same is ridiculous. And yeah, I’m a pretty positive person too. Cancer is a horrible disease, not an enlightenment program. If some think we’re both cranky due to our opinions, so be it, right? Thank you for sharing.

  14. I’ve always been a misfit, Nancy – and glad of it! Perhaps we’re all misfits in one way or another. As a “member of the MBC community” I sometimes think it might be a good thing to be an advocate – but, actually, I’m not a campaigner, and I don’t really want to be reminded of cancer every day. I don’t think of cancer as a “gift” – but I do think it has messages for me, which I’m trying to decipher. But I don’t expect anyone else to feel the same way. I tend to focus on other things primarily – and I can’t help being generally positive. At a recent MBC support group, I actually said I sometimes feel like an alien from outer space, because I’ve never had any expectations or plans for the future – I’ve always taken every day as it comes – so I don’t have the same feelings of grief that many of my “counterparts” do. I’ve now decided not to continue going to the support group, because I feel like a misfit.

    1. Julie, You might be right in that we are all misfits just plodding along. It makes me a little sad to think you’re not going to that support group anymore because you feel you don’t fit in. That doesn’t seem right. But maybe you want to choose to spend your time in other ways, which is certainly your prerogative. Thank you for sharing your thoughts on this one.

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