My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone.  She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist.  Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.

Advertisements

Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

40 thoughts on “My Reality and Your Fairy Tale”

  1. I love this post. I finished Herceptin in August 2010. And that was right about the time I had to stop following several blogs that just kept me all kind of freaked out. And I am scared to see what’s what with this new health insurance stuff. I love my oncologist & my surgeon. I hope I can keep seeing them. And yeah, the dumbass things are still often said to me, especially when I express any nervousness or fearfulness before an oncologist/mammogram/surgeon appointment. Here’s hoping we both continue to stay free from recurrence for many years to come. xx

    Like

    1. Yeah, I’ve written about the difficulty of continuous online interaction after cancer treatment is over before (Hamster Wheel).
      Sad to say, I’m trying to keep quiet about my fears, and I currently have many. I can have all the “but that bump/symptom/whatever doesn’t mean its cancer” arguments in my head without other people hearing it. But I cannot help it sometimes, because all the fears mount up.

      Like

      1. Yep. Yep yep yep. I love the Hampster Wheel post. I’m right there with ya. I’m pretty sure it’s just a fact of life of the cancer patient, these fears. About any little thing. I’m learning to not verbalize every single thing to the hubs. I am now the worst hypochondriac & THE Master of Psychosomatics. My new title in life. Yay me. Ugh. =/

        Like

  2. dear CC,

    I am so sorry you are dealing with such stressful issues – trying to sort out insurance -ARGH!!!, and finding a new oncologist. it’s got to be so hard to navigate through all of the clusterfuck of problems, and slow down the beating of your heart, quell the worry, and deal with the frustration. being one’s own advocate is hard and mind-bending work, and a constant reminder of all you have been through, plus thinking of what could be down the pike. you did such an excellent job laying it all out, and I know it will resonate with so many others who have had to jump through these same hoops and revisit the oh, so painful, tortuous past. as for dumbass things people say – I thought the last line in your post was very right -on: “if you continue to ignore my reality, i’ll continue to ignore your fairy tale.” we all have to take care of ourselves – and it seems unfair that we are the ones who have to grow thicker skin just to survive the dumbasses.

    much love and light to you, my Friend

    Karen XOXOX

    Like

    1. The worst part of the red tape stuff is the lack of control. So I struggle with just waiting for the process to go through as best I can.
      Yeah, I finally figured out that there is no good snappy comeback for the common stupid things said to cancer patients. Ignoring these things may be our best and only defense. That, and of course writing it out and hoping that at least one of these perpetrators reads these essays or books and a little light bulb gets turned on, and maybe the message will spread. Or better yet, I should’ve made a tape of my surgeon’s voice and words, so people without cancer can actually hear what cancer patients hear, then maybe they’ll get why we remain so worried.

      Like

  3. No one will ignore this well written explanation of the ongoing oppression of even the threat of cancer. I hope the administrative issues will resolve for you quickly.

    Like

    1. Thank you Alan. I checked out your blog so I can follow you as well. I saw the title of a recent post, the quote from Churchill. I have that quote as part of my tattoo instead of reconstruction. Check out the page called the right choice for me.
      Thanks again for liking my writing!

      Like

  4. Great post as always CC. As a Canadian with superb free health care, I can’t imagine how I could have managed the red tape on top of the treatment. I wish you all the care you need and deserve and none of the administrative crap that you don’t.

    I’m one of those guilty of cluttering the blogosphere with a post on the dumb ass things people said to me. Oh, the cliche of it all. My friend Rose was the first to call me on it. She said, “Tell me what to say that’s not dumb.” I edited my post to end like this: “So, on Rose’s gentle prodding, here’s a suggestion on something potentially helpful to say. At the Tapestry Retreat I attended in March, 2012, there was a session on important conversations, including a chance for each person to say:
    thank you
    please forgive me
    I forgive you, and
    goodbye
    I guess you modify it for each situation and it’s also helpful to do compassionate and empathetic listening, which is nonjudgmental acceptance of what the speaker says.”

    It’s wonderful that your life is so much more than cancer. Thanks for sharing that good news; happy holiday.

    Like

    1. Thank you as always Deborah. Looking back on old posts, I realize I once mused that maybe the thing to suggest when folks asked, “well, what should I say to cancer patients?” is to not say anything. Rather, listening to the patient is best. But that is a problem bigger than cancer conversations–it is in all conversations. Most people are formulating responses when they should be listening.

      Like

  5. Hi CC, There are a lot of dumb ass things people say aren’t there? Even those who should know better, like healthcare professionals sometimes say them. I heard over and over that “things would be just fine” and this was way back in those early days after my diagnosis, I always thought to myself – just how do you know that? Anyway, I’m sorry you’ve been having a rough time of late. I’m sorry you’re dealing with all the red tape of insurance mumbo jumbo. It really bugs me when we are forced to “deal” with insurance issues on top of dealing with cancer and cancer fallout. Good luck with finding a new oncologist. I relate. I’ve had five. Yikes. Thinking of you…

    Like

    1. Thanks Nancy. Yes, I had a a few incidents, one quite recent that I will write a post about, in which health professionals have said some dumbass things.
      It’s amazing how exhausting red tape can be–even without being in the midst of treatment!

      Like

  6. I can so identify with this post. I’m also HER2+ and had a very small tumor but decided to go with a bilateral mastectomy. Finished with chemo but still have about 8 months left with Herceptin and 10 years of Tamoxifen. To say we are done with cancer at any point because others are ready for us to move on (my thoughts) is silly. Hugs to you.

    Like

    1. Thank you for liking the post–and thank you very much for linking it on your page, and for your very kind words about it. Hope you do well with Herceptin. I did pretty good with that drug, until the end (no side effects except for the really big one, a little heart trouble, but it did get better, several months later). However some do not do well at all with Herceptin, as I’m sure you’re aware–so good luck.
      Hugs to you too!

      Like

  7. Trying to think back to what I said to my best friend, years ago before I had cancer, I hadn’t seen her in a long while and ran in to her at a movie rental store. I just said my “hellos”, hugged her for a long time, told her I was sorry for her “news” (I was too afraid to even s-a-y the word ‘cancer’) and told her that I’d be there for her if she ever needed anything. I just didn’t know what to say.

    Back then, 27 yrs. ago, cancer wasn’t spoken about as publicly as it is now. At least I knew enough to not start giving stupid anecdotes.

    By the way, I love your motto: “if you continue to ignore my reality, I’ll continue to ignore your fairy tale!!”

    Like

      1. It was a long time ago and I was uncomfortable, but, I was genuine. I think discomfort does strange things to people. I know that there are many occasions in my life when I did things to try to climb out of an uncomfortable situation and I made some bad choices, but learned from them. 🙂

        Please understand that I wasn’t disagreeing with you, you have an excellent point and I just wondered how many people I may have offended before I too had cancer and learned what it’s like to be on the receiving end of stupid-cancer-anecdotes.

        Like

      2. Hi Swoosieque–replying to your reply to my reply–why won’t this site provide a reply button to your reply to my reply?! Grr. Anyway.
        Oh I know you were not disagreeing. And yes, I KNOW I was uncomfortable with cancer patients and possibly offended before I got cancer, and I know I wrote about it. Definitely in “Something I Can Use”, maybe other places, not sure. Actually, I may expand on that a bit in this next piece.

        Like

  8. Hmmm, I did something with your “motto” and was trying to figure out if I could post it in a comment, but can’t figure out how to. Oh well, will post on my blog and link to this article. Hugs!

    Like

  9. Finding an oncologist with a new (worse) provider really SUCKS big time. I am finally back with BCBS PPO which at least lets me go to any doctor, which means I actually will see an ocologist this year, which I pretty much didn’t last year because they wouldn’t let me go to the previous one OR seem to have a new one who had time to see me. And I’m only 2 years out. But not such an aggressive form of cancer.

    I hate people who seem to think that a bright smile and a positive attitude are the cure-all. I avoid places where I might encounter them — like church. And even more, I hate people who ask you how you are, but don’t want an answer. I have learned to save myself by plastering a HUGE smile on my face and say JUST FINE, THANK YOU and moving on.

    I think all of who have had cancer think that every new symptom probably is some sign that there’s something nasty growing somewhere … we just having found it yet. Oddly enough, when I get together with friends who have actually been through this — are going through this — we laugh hysterically about it because really, what else can you do? If you don’t laugh, you just cry, tremble and make yourself miserable and I’m plenty miserable without making it worse.

    Thanks for a great piece.

    Like

    1. Thank you so much for your kind words!
      Something you said made me realize I’ve addressed your situation a bit before, in a post called “I Can Pretend”, you can enter the title in the search bar–it should take you to it. And at the bottom are even more posts that are related (Something I Can Use especially).
      I’ve been thinking lately of cancer humor, I think there are some cancer-centric comics out there, but I usually only see them at random. The Chronic Illness Cat meme and whatshouldwecallchronicillness tumblr are good. But, it is edgy humor,so be prepared. You are right, laughing is the best way–I have a very warped sense of humor so the edgy or dark humor appeals to me, I’m not prone to smiling at things others find funny or positive.
      Thanks again for reading.

      Like

  10. This is a great post. I don’t have cancer, but I have other serious health issues and have had similar comments directed at me, especially when I found out I needed brain surgery.
    May I ask if your need to change insurance/doctors was due to the ACA?

    Hugs, Kat

    Like

    1. I spend much of my time with a client who has chronic Lyme and we’ve found that there are MANY similarities in serious illness issues. I’ve become semi-educated in Lyme, just never been able to write about it. In other words, I’m glad you found me, I am very interested in conversations with folks who have other kinds of cancer, or other illnesses, so now I can find your blog! I just tend to write about BC, well, because that is what I had.
      My insurance change is because of my income change over the past year and a half (see the post Punk Rock Cancer). I benefit from ACA (I pay much less now), the old doctor does not take the new insurance and my decision to leave him was financial. I’m not particularly attached to any doctor, so it is not a big deal emotionally, more like just a hassle. I’m not sentimental about doctors (see Can’t Flush, Er, Don’t Touch This and another post called Slurp!).

      Like

      1. I’m happy to get connected with people who know what it’s like to have a chronic illness of any type. My son was diagnosed with Lyme disease several years ago. He’s 14 now and doing well but I worry about how it will affect him in the future. I have Ehlers-Danlos Syndrome, and there is a 50% chance that my children have it too. I haven’t had them tested because there is no cure, even though they show some signs I don’t want to put them through all the tests and doctors at this point. I love the names of those posts! I will be reading them for sure!

        Like

  11. Thank you for this deeply thoughtful,rye post! Chronic illness is not a journey for the faint of heart. It is a difficult way, filled with challenges, a path most of us would probably prefer not to walk.

    Like

  12. If there were any justice in the world, our post-cancer lives would be smooth sailing, in exchange for all the junk we had to endure because of the cancer. But, if there were any justice in the world, we wouldn’t have gotten cancer in the first place. It sucks balls that you have to deal with all the red tape, too.

    Like

    1. Ha ha, you know, sometimes I do wanna pull the so-called cancer card and flash it at the world and say, I’ve done my time…I should have a trouble-free life now! Of course, I know that is silly. It is amazing how energy-sapping red tape is, even now, when I am much less tired than when I had to cut tape with the insurance company while going through chemo!
      Thanks for reading, and for writing your wonderful posts!

      Like

  13. I came here by way of swooziecues blog. You just gave me an eye into your world. You write very well, and I I get where you’re coming from. I sincerely hope you live to be a big, big number, and that lots of people will read this blog so they can quit being so annoying. Hang in there.

    Like

    1. Thank You so very much for your kind words! One of the many reasons I have this blog is to improve my writing, I am still childishly smarting from someone telling me a few years ago that I was a bad writer–quite the confidence shaker for one with a BA in English. I have this blog and have recently branched out to writing humorous tales of my adventures as a pet sitter (fictionalized with a base in real events, to protect the very, very guilty). I may publish on a blog, maybe not, who knows. A small view into that world can be seen in the post “Slurp!” (just enter that word into the search bar, if you like dogs).

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s