It’s Cancer, Not A Stubbed Toe!

All this breast cancer awareness is very nice; all the pink ribbons are very pretty. It’s nice that people are becoming aware of the need for early breast cancer detection and treatment. It’s a relief that people can say the words “breast cancer” out loud in mixed company.

An unfortunate effect of all the tee shirts and posters and cute bumper stickers  is the trivialization of breast cancer. “If you have to have cancer, that’s a good one to have.” “Oh, no one dies of breast cancer any more.” “It’s not like a really bad catastrophic illness, after all.”

Are you serious?

I do my  best not to harp on it. I work very hard at being cheerful and positive to the world at large.  Why can’t people attribute that to my character, to my efforts at being a kind and considerate person? Why must it so frequently be interpreted as “how wonderful! She must be getting better!”

It is hard to tell people who love me that I am not going to get better, bar an act of God. It is even harder to tell them so again and again. I know it’s hard for them, but it’s hard for me, too. I know I’m being unreasonable in expecting people to be tuned into my mood all the time. I know that. But I don’t think it’s unreasonable to expect people to wait for cues from me before they start skipping along down the (pink) petal-strewn garden path.

Caught early, breast cancer is more easily treated. (But may still recur at a future time.) My cancer was not caught early. I was at Stage III (of four stages) on diagnosis. Now I have distal metastasis – Stage IV. These days people can live for years with Stage IV cancer, but that is not the same thing as health. Living with a maimed body, pain and weakness is still life – and I’ll enjoy it as long as I can. But it is not health. The cancer will kill me. It will kill me sooner rather than later.

I don’t go around with a long face and I rarely expose my frustration and anger to other people like I’m doing now. Sometimes it just boils over.

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23 Responses

  1. heyjudyjudy says:

    Stop being so damn cheerful…

  2. I still can’t believe it when I hear someone say, well if you had to get cancer, at least you got the good kind. I completely agree that breast cancer has become trivialized. It’s a sad commentary on pink ribbons isn’t it? I don’t blame you one bit for boiling over now and then. I do too.

  3. I sent my sister in law the link to your blog. Sometimes I think she too feels that her family has come to believe that she has survived… she did pass the 5 year mark but she too is “Living with a maimed body, pain and weakness and is still clinging to life” – and “enjoying it as much as possible:” as long as she can but she too is “dying sooner then later” and it flips me out when people say Well “WE ARE ALL DYING” like it’s nothing. YES we are…but WE don’t all have to stare it down everyday and fight it off with every ounce of strength we have.
    Sometimes only someone who does GETS THAT!!!

    I don’t want her to die. Like a slow train that’s off in a distance that you can’t judge the speed or distance of when your tied to that track… it’s coming and there isn’t a fucking thing you can do to take your eyes off of it. There are day’s when I know she just says fucking hit me already…I’m tired of the wait! Even that doesn’t end it… it’s still out there just taking it’s own fucking time getting here. The “so weak that she is too tired to even pretend to be living days”, are coming far more often then the “Hey I made it to the chair today…it’s a good day”, Days.

    I am off taking care of personal things right now but it keeps me constantly aware that I need to get my ass back there to hold her hand while there is still one left to hold… but here
    or there I can’t go with her and I can’t really make that journey easy, no matter how badly I want to.

    My heart bleeds for the fact that you are here as well but the fact that you share it does help others. You are awesome. Thank You for being here and sharing who you are with us.

  4. Maxine D says:

    Thank you for the truth of your words – yes, there are times that we who have not traveled with cancer, either personally or with a family member, cannot truly understand where cancer sufferer’s “are” – your truthful sharing helps bridge the gap for us to understand and appreciate their journey better.
    Prayers and blessings

  5. steve wethington says:

    in December 2007, i had a diagnosis of a tumor on my acoustic nerve. It was the size of an almond and as my Dr’s said, wasn’t life threatening YET…………and only 2 % of them are ever malignant they said.

    I’m sure they were trying to make it seem ‘less serious” by taking the words malignant cancer out of my thought processes. They weren’t overly successful at that …….

    Any cancer is scary…………….folks die from all types. Still a lot of prayers and good thoughts to you Ms Knots………….

  6. wildan1 says:

    Thanks for speaking your mind, TK–I think it helps the rest of us who care about you speak ours. Sending you lots of warm thoughts and a hug. Embrace and enjoy what’s enjoyable and blow off all the steam you want about the rest–it sucks! Bisous wildan1

  7. You’re right–it’s great that our disease isn’t shameful like it used to be, but all the “prettying up” of it hasn’t done us any favors.

  8. Brandie says:

    I hear you. Good and cancer just shouldn’t go hand in hand, and yet it does. Being positive, or smiling, is not a cure and will not heal. And yet, there is so much emphasis on it.
    Don’t feel bad about expressing anger or frustration. Sometimes I think people need to see more of it to try to get it.

  9. There really are such bumper stickers?!?!?! How crass can some people get. This really is why so many of us are beginning to loath Pinktober and all that is means.

    As to being happy … what else are we supposed to do? We have limited time so are we supposed to be miserable and not enjoy life? We all do the depressed, angry bit at times, but we don’t have the luxury of making a habit of it.

    Enjoy life v. being miserable … not too difficult a choice there really!

  10. Knot Telling says:

    Wow! I am overwhelmed at the response and the depth of personal sharing. Thank you for sharing yourselves with me, all of you. Thank you for walking along this road with me.

    • Rachel says:

      you are an inspiration. Those are my exact thoughts on paper. Thank you for sharing. Sometimes you HAVE TO let it boil over.

  11. hjelmstd says:

    What a honest, heartfelt post. I applaud you and love you.

    I have had chronic fatigue syndrome (ME) for 23 years. I do not look ill. People certainly see me as “healthy.” I also had mastectomies 22 and 21 years ago and with that combination I am in pain and weak and maimed. (I don’t look maimed, either. Falsies do great things.) I do NOT have metastatic cancer (at least I don’t know that I have), but with the minor credibility I have, please let me share here one of my poems that I have shared elsewhere:

    You Will Be Just Fine

    please do not trivialize
    my suffering.

    you who are healthy
    you whose mortality is as yet
    only dimly perceived–
    please do not say
    “You will be just fine.”

    I may well be–someday–
    but I do not know…
    you do not know…

    (Excerpted from Fine Black Lines: Reflections on Facing Cancer, Fear and Loneliness (c) 1993, 2003, Lois Tschetter Hjelmstad)

    By the way, I hate pink.

  12. YAPCaB says:

    It’s good the release the anger! I’m in a similar situation. My cancer doesn’t require chemo yet and won’t for possibly as long as 2.5 years. I’m totally asymptomatic, but there are plenty of side effects from the non-chemo meds I take. Nine months have past since the stage IV diagnosis and I still have my hair and haven’t started losing weight. Folks who haven’t seen me in a couple months are always shocked I’m not bald and emaciated. They congratulate me on being cured or in remission. I’ve decided this is a good thing as it allows me to let people know that not all cancers are the same. However, I still get angry when the same people continue to be surprised and think I’m cured.

  13. Knot Telling says:

    Thanks for the support, YAPCaB. I’ve had years of chemo, off and on, but none at the moment. What I can’t stand is when people say, “Oh, you must have one of the good cancers!” Riiiiiight.

  14. Virginia says:

    Wow. Thank you for your words. I had thyroid cancer twice and was told “if you could pick a cancer, this is the one you’d want.” Idiots. Picking cancer is such a disgusting thought. The treatment I had, complete body radiation, had serious effects on me. It took 4 years of fighting doctors in QC, then a TO trip, to finally have a doctor acknowledge what the treatment did to me. The specialist for my cancer—now she’s a cracker and a half!—told me “if it makes you happy to believe it was the treatment that caused these problems…” I know my body will never be what it once was, the treatment made sure of that. But I will make sure that my attitude lifts me up and keeps me higher.

    I discovered a month ago I can’t have general anesthesia. If I do, I might not wake up, and if I do wake up, there’s a strong chance I won’t be the same person. The only case they’ll give me G.A. is under life saving circumstances, like a trach. Hard to swallow and scary to imagine.

    Breast cancer runs in my family, my grandma was 28, my mom was 40. I’ve been followed since I was 29. I’ve been having mammos and ultrasounds and MRIs. I’m waiting for the results of my most recent MRI following the mammo. Leading up to it was nerve wracking. I felt calmer afterwards but now, the results come in next week and I’m doing everything I can to hold onto myself. To not lose myself to fear.

    I’m grateful both my mom and grandma are still alive today. If I ever develop another grave illness, I hope I will have their fates.

    Cancer sucks. People who refuse to see what cancer sufferers/survivors/victims/patients go through even when they “look healthy” as not too far from sucking either.

    Thank you, again, for sharing your moment of venting!

  15. Even with an early stage diagnosis, I am completely turned off by the trivialization and commercialization of BC and it’s even worse that so many ‘survivors’ (<– fyi, I loathe that word) perpetuate the myth of the ribbon. I applaud you for writing this and hope this will serve to educate some of the ignorance out there.

  16. Beth Gainer says:

    Thank you for your honest post. I hate when people say that breast cancer is the good one. There are NO good cancers and, yes, breast cancer kills. I appreciate your candor.

  17. Elizabeth J. says:

    I recently found your blog and I don’t know if you read the old ones, but if you do I want you to know I totally agree.
    When I was first diagnosed a lady in my church came up to me and said, “breast cancer is nothing to worry about, I had it a few years ago and these days you don’t even lose your breast.” She was totally oblivious that there are different types and stages of breast cancers even though she had had it. She was so typical of what so many people believe because of how we have trivialized breast cancer. (Sadly, she had an aggressive untreatable recurrence and I went to her funeral lately.)
    People assume once your hair grows back and you stop glowing in the dark (OK, I know better but one person actually asked) that you are cured. They are shocked that there are still pills and injections and monthly blood tests and yearly MRIs or PET scans, etc.
    My pet peeve is the idea that you can beat cancer if you just keep a positive attitude. Really! If my attitude has that kind of power then why bother with either prayers or modern medicine? I do not intend to waste what is left of life being miserable, much better to look at each day as a gift from God to enjoy. But, do not put the responsibility for my life or death on my attitude.
    Cancer is not a fun pink disease. They may be able to keep us alive with it longer than they once did, but there is still no cure once is stage 4. And more mammograms are not the answer as some breast cancers do not show up on them. I know because I had inflammatory breast cancer diagnosed shortly after my mammogram showed everything was fine and there was no lump, just an innocent looking rash. What we need is a cure!

    • Knot Telling says:

      Every word you write could have come out of my mouth. I’m glad you found the blog, and I hope you’ll come back and read and join the conversation.
      No, cancer is not trivial and it’s not cute and it’s not pink!
      Thanks so much for reading and commenting, Elizabeth. I hope all goes well with you.

  1. 1 September, 2012
  2. 1 September, 2012

    […] am astounded and delighted at the amount of reaction my last post (It’s Cancer, Not A Stubbed Toe!) has received. Over the past three days it’s become one of my most viewed posts […]

  3. 10 April, 2014

    […] am astounded and delighted at the amount of reaction my last post (It’s Cancer, Not A Stubbed Toe!) has received. Over the past three days it’s become one of my most viewed posts […]

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