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A Small Revelation

Recently I was reading a post by one of my favorite bloggers, the Cancer Curmudgeon, and I had one of those light-bulb moments. Let me just stress, this was NOT an epiphany. No, I have not had one of those, nor do I expect to. It was more a realization that I need to remember to follow a certain piece of my own advice.

Quite often I’m suggesting, do cancer your way. Do survivorship your way too. You know, that sort of thing.

I think I finally realized, I get to do cancer survivorship my way too. 

(As I mentioned before, I can sometimes be a slow learner).

A while back I had an exchange with an individual on Facebook (a family member no less) about one of my biggest cancer pet peeves, that just stay positive mantra. This particular person has experienced cancer firsthand, not once but twice. This person left a comment on one of my posts in which I had expressed my resistance to the over-used, just stay positive messaging, suggesting that it’s not all the helpful for some of us. This person didn’t understand where I was coming from (and likely never will), told me so and then proceeded to unlike my page – all totally fine. Still, my feelings were hurt.

Shortly after that, I read the above mentioned post by my friend the Cancer Curmudgeon and wallah – light bulb moment!

Here’s the part that really resonated:

Finding and sharing truths about the shittiness of cancer has been satisfying. Confronting facts comforts me. Yet so many people perceive it as “being negative”. My message to them is this: “Stop it right now. You may think you are spreading your sunshine, but you are really raining on my grumpy parade. I was having a good time and you wagging your finger at me and my attitude is what is REALLY getting me down.”

Upon reading that, I realized some of us are not in the just stay positive camp and never will be perhaps because our brains are wired differently. We don’t WANT to be in that camp. We choose to opt out of it. We will always see some things (like cancer for instance) from a differently skewed angle which is often a less-accepted-by-society sort of angle. Either camp is appropriate and we should all be allowed to pick and choose which one we feel most comfortable residing in and/or moving in and out of. After all, cancer or no cancer, what works for one, doesn’t necessarily work for another.

The thing I can never quite grasp is why so many in the just stay positive camp find people like me to be negative. I do not see myself as a negative person. At all. I will admit that too much positivity drives me a little nuts. We’ve all interacted with the over-the-top perky type, right? And from a patient’s perspective, well this patient anyway, staff perkiness in a hospital is way over-rated…But again, this does not mean I am a negative person. As I have said many time before, I am a realist.

Like the cancer curmudgeon, I often share about the shitty side of cancer and frankly, have great difficulty seeing, much less sharing, anything that is not shitty about cancer. And like the cancer curmudgeon, this helps make me feel better. Sharing the shitty stuff IS my “positive”, well part of it anyway.

Why is this such a hard concept for some to understand and/or accept?

I try to be quite clear when I write stuff here on the blog, or anywhere, that my opinions are just that, mine. I welcome all viewpoints. I really do. I love good discussions about differing points of view, no matter what the topic might be. I am not necessarily trying to change how others think or feel; I am merely expressing myself about my personal cancer shitstorm and its aftermath. I always hope that by doing so, I am encouraging others to more freely share about theirs too.

If I can accept that the just stay positive mantra works for some, okay many, why does it so often feel as if my way of doing things isn’t quite up to par?

Why does the accepted (for the most part) societal narrative still seem to be that smiling your way through cancer (and survivorship) is the best way to handle things?

Cancer or no cancer, we are all individuals. (Thank goodness).

Don't rain on my parade
Don’t rain on my parade, both images in this post used under Creative Commons license

Like the Cancer Curmudgeon said, don’t rain on my parade.

Amen to that. And there’s that other expression…

I won’t rain on your parade if you don’t rain on mine.

Give yourself permission to be real, to be you, to “do” any part of cancer your way.

I’ll try to remember to do the same.

Which “camp” do you feel most comfortable in?

Do you ever feel your way of coping with cancer (and survivorship) isn’t accepted by others?

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24 thoughts to “A Small Revelation”

  1. I chose to have lumpectomy and extensive reconstruction, then went the nutritional route. A year later, it was and is the quality of life decision that’s “right” for me. I am as cancer-free as possible, knowing we all have those cells moving though our bodies all the time. The greatest threat for recurrence, I was told, is in the first four years. Time will tell, and I live with that. People argued strongly at the time of diagnosis to go the traditional-surgery/radiation/chemo/hormone path-and the loudest voices were in the medical community. Hence, the community that could have supported most knowledgeably cajoled with those soft, subtle little threats of fatal risk-taking. I was alone, so alone, and sometimes fearful; marching to the tune of a different drummer, even your own drumbeat, is less poetic than one would hope! I have gradually formed a small circle of supportive folks in alternative medicine and good friends who either “get it” or are willing to respect, accept and support me where I am. Quality of life is high, despite living with the threat of recurrence being a given, and 2016 is oh so much brighter than 2015! And no, there’s no pink-stink on me lol!

    1. Maggie, I’m glad you made the decisions that felt right for you and have formed a circle of supportive people. Wishing you all the best. Thank you for sharing.

  2. Nancy, I think the value of hearing your perspective is most important for those who are afraid to speak out like you. Our overinflated positive attitude as seen on social media can interfere with good mental health based in reality. When I was working in the hospital, administrators always wanted the nurses to wag our ponytails and say yes and never question anything. I was unwilling to do that. No one was going to rush me through chemotherapy sessions or education for a first time chemo patient. Being told I had a bad attitude in the face of refusing to engage in practices that could lead to medication errors made me decide to go my own way. I had a justifiable bad attitude about things that were bad. How I chose to express it was my own decision and I feel I made the right decision. If we don’t speak our own minds and our own truths, staying quiet out of fear of what others will think of us, then we really have nothing to offer the world! Always be yourself.

    1. Alene, I agree, the over-inflation of positivity can interfere with good mental health. Good for you for being true to your beliefs when you were working in a hospital setting. It took guts to chuck all that and go your own way. Always be yourself. Love that. Thank you for sharing and more importantly, for staying true to yourself.

  3. My first cancer was a stage four lymphoma, 24 years ago. I was advised, at a very well-known cancer center on the east coast, to have 8 cycles of a certain chemo regimen followed by 20 radiation treatments to my chest, abdomen, and pelvis. I was newly married and wanted very much to have children, so I sought a second opinion- about the pelvic radiation. A very wise physician told me that “an intelligent person could make either decision- to have it, or not to have it. There is no one-size-fits-all in cancer treatment “.
    I refused the pelvic radiation, and conceived my first child six months after I finished treatment, my second six months after my first was born, and number three came along a couple of years later.
    Did my decision affect/protect my fertility? I like to think so. But that’s not really the point. The point is that there is no roadmap for these journeys, and we each must clear our own path. If others don’t “get” our moods, our choices, our WHATEVERS!- so be it. So be it.

    1. Julie, Thank you for sharing a little about your story. You’re so right, there’s no perfect road map that will necessarily work for every person. Cancer or no cancer, we are all individuals with unique needs, goals and circumstances. I’m glad you cleared your own path and made choices that worked best for you.

  4. After my first diagnosis I was desperate to reach out to women for emotional support. I had outlived all the women in my immediate family except a cousin who was dying from lung cancer . (I was 59). So I was hopeful to talk to a best friend from childhood who is a nurse turned risk manager at a chain of hospitals. I was feeling blindsided, betrayed by my own body, and angry! Two emails into our exchange she advised me that not keeping a positive attitude was not going to be helpful. I was stunned at her lack of empathy, compassion, or support. Stunned!! Fortunately I had also connected with the daughter of my mother’s cousin who was about my age and had just started her own breast cancer journey 3 months before. Her husband is a PCP and a super guy who answered my questions and found her (and consequently, me) the best care in the area. She was my rock. Her most frequent phrase to my fears, feelings, and tears was, “That’s perfectly normal! YOU’RE normal. ” Then I was able to wallow, fret, shout at god, feel sorry for myself, and work through it! I came to a place that I could manage. When I had a recurrence 6 years later I went through the same low feelings, but much faster. Good thing, since I didn’t have ANY peer to talk to this time…someone who has faced this again. … Because the fears and questions are different the second time cancer shows up. The Small C and the Cancer Curmudgeon were breaths of fresh air both times. I had found some people who were more like me, as far as feeling cheated in an unfair situation. I still read them!! Glad to hear different voices along this adventure! Keep it up; help us keep our sanities!

    1. Connie, I don’t blame you for feeling stunned by the comment about just staying positive – from a nurse no less. Thank goodness you found your ‘rock’. We all need one or two of those! There is so much to process throughout a cancer experience, as you so aptly described. Trying to always stay positive just isn’t realistic for anyone IMO. Letting any/all emotions flow through you seems far healthier in the long run. Thank you for sharing. I love the CC and The Small C. Both are like breaths of fresh air. Here’s to keeping our sanity… thank you for sharing.

  5. I continue to have small revelations along these same lines Nancy and appreciate your post. I also appreciate the comment left by Alene above, especially these words-“If we don’t speak our own minds and our own truths, staying quiet out of fear of what others will think of us, then we really have nothing to offer the world! Always be yourself.”

    If someone is denying their own natural tendencies and emotions, trying to fit some societal “norm” or feeling pressured by others, that is truly a loss. It is unfortunate that “positive” and “negative” get universally attached to so many feelings and words. Don’t we need a full range of uniquely individual emotions and life experiences to gain a healthy perspective?

    Thank you Nancy and Alene for speaking your truths and making it safe for others to do the same.

    1. Lisa, I appreciate your thoughtful comment, as always. It doesn’t have to be all one or the other. Emotions are far more complex than that. You are so right, we do need a full range of uniquely individual emotions and life experiences to gain a healthy perspective. Love the way you put that. Thank you for sharing your wise words. Hope you are doing well.

  6. Nancy, thank you for keeping it real! I’ve always viewed your posts as honest assessments. I believe they are both educational and validating.

    I’ve lost track of the number of times I’ve referred people to your “Aromatase Inhibitors, the Drugs We Love to Hate” series. Yeah, you reported on the crappiness, especially before your switch to Aromasin, but then you gave info on what has been working. That’s the reality. You’re not waving pink pom poms, but you’re not kicking puppies, either. You’re telling it like it is. I consider myself to be in the Reality Camp as well.

    Different people have different coping mechanisms. Mine was learning as much as I could after I was diagnosed, but someone I know couldn’t bear to do that. She did what worked for her, period, and that’s really the bottom line. Ways of coping are as individual as our genomes.

    1. Elissa, Thank you for the kind words. And yes, the dreaded AIs, the drugs we love to hate… I much prefer to reside in the Reality Camp too. You’re so right, we are all different and need to use different coping mechanisms. Thank you for sharing.

  7. Awww, Thanks Nancy! You really “got” what I was getting at–that there are many different definitions of happy, different things that make people happy. Here is an anecdote that did not make it into the post: I watched a foreign film not long ago with my Mom, about war and in Eastern Europe (Tangerines). It was NOT a cheery kind of film–people died in the end–that sort of thing. The next day we were selecting another film and Mom insisted we get something light and cheery because the film the night before had bummed her out. I stood there thinking, realizing that I was NOT bummed out at all. While the events of the film were sad, the message about helping others, even the “enemy” was uplifting in a way. Now, watching a rom-com, like my Mom was all for renting the next day–not THOSE things bum me out, because I cannot bear all the stupid! This is a silly little story that illustrates what makes people happy. I’m sure most people would agree with my mom’s selections in film. Oh well, this is just how my brain works!
    One of the strangest “walls” in CancerLand driving me insane lately is this reductive notion that ALL metsters are angry because they are dying and ALL early-stagers are embracing the I kicked cancer’s butt survivor role. What maddens me further is when I witness others see a metster who is “positive”, rejecting the anger, CLEAR evidence that ALL metsters are one way–and they just shove this evidence aside, ignore it because it doesn’t conform to their world view. It does not seem to occur to them that people’s reactions and view have to do with brain wiring as much as, or even more than, circumstance.
    Oh well, I stand by what I said–people think they are offering me sunshine don’t understand they are raining on my grumpy parade.

    1. CC, No, thank YOU for writing that post, in fact, for writing all your posts. Like I mentioned in a different reply, they are like breaths of fresh air. Almost literally. That particular post really made me stop and think about allowing myself to do what I’m always saying. Reminds me of that old saying, do what I say, not what I do. And yes, the walls…I decided I’m not going to fret too much about the divisions. But yes, differing viewpoints need to be respected, cancer or no cancer. Thank you for sharing that story about you and your mom’s film selections. Another illustration of how we look at things differently. Thank you for sharing. Thank you for blogging. Thank you for being you.

  8. Nancy, I’ve had similar experiences with other patients telling me to be positive when I start to vent about my frustrations. I realize that there is a difference on how I feel when a patient suggests I stay positive vs. when a non-cancer person makes the suggestion. Basically, my point is the same as yours. I don’t understand why the positive attitude is the only one allowed in our society. But also, who said I am not positive? Being a realist doesn’t mean being negative. And like Wendi said in her article, a lot has to do with the way I am wired, the way I am inside. I am just being me. I respect the way other patients handle their cancer and survivorship. I expect the same treatment.

    I bet many patients hide their true feelings because of the fear of being judged or losing support. I am at peace with my decision of staying true to myself. And thank you for not raining on my grumpy parade, Nancy! xo

    1. Rebecca, Always nice to know you and I are on the same page. I also fear that many patients hide their true feeling because of fear about being judged, losing support, or whatever reasons. This is one motivator for me to keeping writing about this stuff. I want others to realize (earlier on than I did) that there is no right way to do cancer and you don’t have to smile your way through it. Staying true to oneself is always best, cancer or no cancer. Thank you for reading and sharing your insights.

  9. Being told to be positive to me is the same as saying “I don’t want to hear your grief, pain, fear etc.” I don’t think I’m in either the positive or negative camp, but in the “living my life and trying not to be miserable about things I can’t change” camp. Single most helpful thing to me has been “The Happiness Slap” by Russ Harris. It’s mindfulness 101.

  10. Amen! I’ve always felt that you can’t address problems unless you identify them. Apparently, that strikes some people as negative. Forcing yourself not to see them seems like denial to me, which is not helpful. *shrug* Oy.

    1. Kathi, Sharing reality is not being negative, and you’re so right, no problem can be addressed without identifying it. I always wonder why there’s so much denial of reality regarding cancer…Don’t get that. Thank you for reading and commenting. xo

  11. Hi Nancy,

    Great post! Like Kathi said, I think the “be positive” mantras are reactions from people in denial. It’s easier to say these words and thus avoid the pain associated with any kind of cancer. I never smiled my way through my cancer shitstorm either. I never felt lucky or positive. As a person, I think I’m mostly positive, and having such an outlook on life is a good thing, I think. But feeling positive because one has cancer/has had cancer is another thing entirely.

    Everyone does have the right to do survivorship their way. There’s no right way, really, but we all are entitled to our reality.

  12. Oh yes, I used to be a positive thinker. I went into chemo thinking I could just nice my way through it. After a couple rounds of chemo I realized all the good thinking in the world could not prevent the worst from happening. I recently wrote a poem/song/rap about it basically saying this all sucks but days when I wake up and feel ok, I am glad to be here: http://myrawood.com/blog/post/view/16/c_is_for_situation
    I’ve learned it’s ok to be pissed at being sick all the time and I don’t need to make sure other people are happy any more. What an exhausting waste of time that was! …One of the many reasons I so appreciate stumbling on your blog and attitude. Nice to find out there’s nothing wrong with feeling shitty about feeling shitty. Thanks.

    1. Myra, There is absolutely nothing wrong with feeling shitty about feeling shitty. And good for you no longer worrying about making sure others are happy all the time. This doesn’t mean we should wallow and be grumpy all the time and that we don’t care about the happiness of others. No. It just means we can be honest about our true feelings. Thanks for sharing your poem/song.

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