No, Cancer is Not a Journey

Posted on: August 13th, 2015 by
23

I dislike many platitudes when it comes to cancer. The general healthy public likes to give a positive spin to cancer — especially breast cancer, of course. In fact, so many in our society consider breast cancer the cute, benign sort of cancer, even though it kills and maims.

Well-meaning people have tritely referred to my breast cancer experience as a “journey,” as if there’s a beautiful road to a beautiful place of self-revelation.

The Road Ahead

I hate this platitude.

My life’s path hasn’t become more meaningful since cancer sunk its fangs into me. I don’t have a higher purpose or calling. Cancer did not set me on an important journey toward self-discovery and self-revelation.

The only journey cancer took me was on a road paved to hell. And therein lies my self-revelation.

For example, on biopsy day, my surgeon told me that the diagnostic mammogram showed that the mass in question was highly indicative of cancer. I literally felt the examination room table I was on drop down, down, down — and I was falling into an abyss of unchartered terror.

That was my initiation into the world of the cancer journey.

But that was only the beginning. Chemotherapy and radiation and an aromatase inhibitor wreaked havoc on my body. At a young age, I did have an epiphany of sorts: I learned what it was like to feel old, sick, and worn down.

Not exactly a feel-good breast cancer journey.

And cancer wasn’t done with me after treatment ended. I am exceedingly lucky I’m not metastatic, and each day I realize so many people are still struggling with breast cancer and its treatments. Many will die of the disease. Thus far, my life was spared.

But my mind was not spared. In fact, it bled out. The journey to PTSD is a one-way ticket to a horrific place filled with triggers and land mines. Any misstep is precarious.

I’m lucky to be NED (no evidence of disease) thus far.

But in a sense, I am still a lifer.

PTSD has forever has changed my brain chemistry; trauma haunts my mind, inhabits my body, and is here to stay.

Yeah, some journey. Right.

I spend my days working harder than I should have to in order to make life’s moments meaningful and stretching these moments into meaningful hours and days.

Some people tell me that I should be over “it” and see my “cancer journey” as a well-paved road that goes from point A to point B. But truth is, that road is not linear and it’s fraught with potholes.

The journey metaphor is harmful to people who have/have had cancer because it puts pressure on us to feel that cancer somehow impacted our lives in a meaningful, positive way. This is not always the case. That being said, however, my cancer take-aways have been to not take my health for granted and to realize that I am luckier than others.

And that has to be enough.

What are the platitudes you dislike the most and why?

What are your cancer struggles? I want to hear about them.

For a post on other problematic platitudes, click here.


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23 Responses to No, Cancer is Not a Journey

  1. Rebecca had this to say about that:

    Beth, thank you for expressing your thoughts about this platitude so clearly. I never thought a lot about the word journey in relationship to my cancer experience but now that I read your post, it is understandable why it would bother so many. It annoyed me too but not as much as other platitudes used in cancer-land.

    The platitudes that bother me the most are the ones that suggest I am living my life the wrong way – those connected to God or religion, learning a lesson from cancer, being a better person after cancer, etc. I. Can’t. Stand them.

    And you are absolutely right when you say we are never really done with cancer. I think people are so detached from mortality that anything that would remind them of it isn’t welcomed so these languages/expectations are created to soften the reality of death. We always want answers in order to reach some level of control but Denial separates us too.

    I struggle with trust when it comes to my cancer – I can’t trust my body or my test results. I always feel suspicious.

    I am sorry you are dealing with PTSD. I hope you have a lot more good days than bad days.

    • Beth L. Gainer had this to say about that:

      Hi Rebecca,

      The platitudes that you describe are awful. I hate the ones prompted by religious views, as if our lifestyles caused cancer. Cancer making a person a better person is definitely out of bounds for me, as well.

      Your insights on our culture shying away from mortality are very perceptive. I do think society shies away from death.

      I always feel suspicious about my body, too. Thank you for your kind point about my PTSD. I do have more good moments than bad ones. I enjoy most days and have so much to be thankful for. There are many things that trigger me, and I am able to effectively handle these triggers, but some days are definitely harder than others.

  2. Eileen@womaninthehat had this to say about that:

    Beth, I also hate the platitudes because they’re dismissive, empty-calorie cheerleading jingles. I’ve said it before and I’ll say it again: Post-treatment means you start Part 2 of the continuing cancer story. Healing takes a long time, both physically and emotionally, and I don’t know that there’s an actual finish line. Thanks for an important post.

    • Beth L. Gainer had this to say about that:

      Eileen, I really like the way you’ve put it: post-treatment is Part 2 of the rest of one’s life post-cancer. I think healing can occur; I know I’ve healed somewhat, but I’m still waiting for that finish line.

      Thank you for reading and commenting.

  3. Sally Feldt had this to say about that:

    Thank you for an insightful post, Beth. There are so many cancer platitudes that exasperate me. My no. 1 has to be ‘positive thinking’. Why do I constantly get told to ‘be strong’ and ‘think positive’ in order to ‘beat’ the disease? No other serious illness or potentially terminal condition gets talked about in these terms.
    I do love to look on the bright side of life – always have – but now I am going through chemo for breast cancer, I reserve the right to be weak and negative from time to time!
    I wrote about this in my own blog. Hope you don’t mind me sharing the link. https://thecheerfulcanceree.wordpress.com/2015/05/17/a-few-words-about-positive-thinking/

    Wishing you many more bright days in the future. With love Sally x

    • Beth L. Gainer had this to say about that:

      Hi Sally,

      Oh my gosh the “think positively” mantra annoys me to no end. I think it’s great to be positive, but it’s acceptable to feel angered and hurt by a cancer diagnosis. I wish people would stop wanting cancer patients to be so upbeat all the time.

      I will check out your post about the right to be negative at times.

  4. Michelle had this to say about that:

    I’m a daughter who lost her mom/best friend too early to breast cancer. I understand why you feel that way, and the PTSD that comes from that. I’ve been fighting that battle with stress and fear myself. I think life itself is a journey. Cancer is an enemy encounter. I experienced the roller coaster of emotions being by mom’s side and witnessing her pain. It’s heart breaking to recall those times of her suffering and feeling helpless.

    Thank you for bringing this awareness about cancer “platitudes”… I’m “that” person who wants to uplift and support others going through difficulties, especially health or cancer related, because I know how alone and powerless I felt going through it with my mom. I wasn’t aware how that can create the opposite effect from what my heart intends and the love I have for those fighting the good fight.

    I’m always going to be positive and hopeful for my loved ones, friends, children… who have been diagnosed. I hate cancer! I’m committed to doing my part to help fight it every way I can, however my heart leads me in my mission.

    I pray for you all.

    Blessings, joy and health for you always.

    Michelle Tafoya ~ The Comfy Mom

    • Beth L. Gainer had this to say about that:

      Michelle,

      I’m so sorry that your mother died from breast cancer. It truly saddens me. The stress you are undergoing sounds awful, but it’s understandable.

      I think it’s good to uplift others; it sounds like you are a really empathetic person, and that is good. I think we can uplift cancer patients by more than saying, “You look great” or “Think positively” or “cancer is your journey.” To that I say utter nonsense.

      Keep doing what you are doing.

  5. Nancy's Point had this to say about that:

    Hi Beth,
    I’m pretty sure you know my feelings on all the platitudes; they are not only hurtful, they are potentially harmful as well. I never ever call my cancer experience a journey. The word just doesn’t work for me. AT all. If it does for others, that’s fine. To me, it sounds way too light-hearted and it fails to represent what the experience is truly like. Thanks for another important post.

    • Beth L. Gainer had this to say about that:

      Hi Nancy,

      I agree with your view on calling cancer “a journey.” It really trivializes the disease, and dismisses the patients’ very real experiences. Thank you for your insightful comment.

  6. Scott Johnson had this to say about that:

    Hey Beth, My experience with the Journey concept comes from being taught that journeys are not benign. I’m not religious but the notion that experience put a kind of sign on you for your efforts and pain feels right. What you’ve “earned” from this is certainly not something to wish for but it IS something and I need think more on it to understand it. Thanks for starting this train of thought!

    My biggest complaint is with “We are working on a cure.” Who is it exactly that’s working on a cure? Does that mean I’m cured retroactively? And how about helping me live my damaged life right goddamned now? And if I don’t share the joy then I must not care about cancer patients–how mean of me?

    If there is an important part of the idea of Journey it comes from living as best you can. The so called care givers I deal with refuse to listen to my story. It “isn’t relevant to OUR curing you” they say. In a sense they are right. They never bothered to know who it was they were CURING because their story fixed and mine, they think, is broken.

    I think having a Journey that is yours regardless of no happy endings and shitty inbetweens is still something of you that belongs to no one else.

    My counselor says people don’t like stories where things don’t work. They imagine themselves in a corner without support and just won’t believe it can happen. Living through something like that is hardly a gift, but again there’s something of value there. For me, the understanding is coming in bits a pieces. It isn’t nice to lose illusions and get raw all over from being tumbled around though we DID survive it. Damaged but not finished yet I’d say.

    • Beth L. Gainer had this to say about that:

      Scott, thank you for your thoughtful comment. The whole “we are working on a cure” is so vague and rather meaningless, I think. Easy to say, hard to do. I think your point about your counselor saying that people are not attracted to stories “where things don’t work” is spot-on. Everyone, it seems, loves the happy story. I love happy stories, too, but I don’t delude myself into thinking that every story is a happy one.

      Thank you for your insightful comment, Scott. As always, I appreciate your readership.

  7. Scott Johnson had this to say about that:

    Beth, found this at Marie’s blog. It explains why I often feel like I’m fighting an invisible enemy or have lost something hard to describe. Self is hard to define but certainly worth the fight to keep.
    The loss of ‘self’ in chronic illness by Carolyn Thomas
    http://myheartsisters.org/2015/08/02/loss-of-self-chronic-illness/

    • Beth L. Gainer had this to say about that:

      Scott, I will have to check this link out. Thank you for sharing it. Yes, there is an invisible enemy, I think, when there’s a serious illness. All we can do is take each day at a time.

  8. Stephanie had this to say about that:

    Thank you, Beth.

    I so appreciated this, though I’m 180º from you on the issue of journey metaphors for cancer. It seems to sum up my past experience and is not a platitude put on me by others.

    Cancer has been a nearly 25 year journey for me. No, not a fun Mediterranean cruise or a Club Med resort, but more like a medieval or fairy tale quest (sometimes pilgrimage) for healing that’s taken me to places, people and experiences I couldn’t have imagined when I began.

    I quite trust too that death will be the next adventure.

    But I live in the land of Joseph Campbell and George Lucas. We’re all about journeys, quests, pilgrimages and adventures here.

    Beth, I laughed when I read your essay, because I could have written it myself, but substituted the words war, battle, fight, beat, conquer, weapons, etc. Those metaphors drive me ape-shit. :)

    It’s a beautiful thing to claim our experience, our language. I coined the term MTSD (mid-traumatic stress disorder), because it better describes what happens when we need to keep engaging what hurt and harmed us.

    Good to meet you and wishing you well,
    Stephanie
    http://tellingknots.org/archives/3695

    • Beth L. Gainer had this to say about that:

      Hi Stephanie,

      Yes, the words battle, fight, beat, etc. can certainly be substituted for “journey.” And it drives me crazy as well. I like the term MTSD. Very appropriate.

      Glad to meet you. Sorry for the very delayed response. I must have missed this comment awhile ago…

  9. Pingback: The Good Cancer Debate - Know Your Thryoid

  10. Susan McAuliffe had this to say about that:

    Thank you. Every time I read or hear “journey” in relation to my cancer, I get angry. In fact, it backed me out of support groups, along with drumming and other nonsense. When people have the flu, do we say they are on a journey? When they break an arm, are they on a journey? No. And I am not on a journey either. I am sick, somewhat lucky with that so far, and my life is changed into a mess, a struggle, not a journey.

    • Beth L. Gainer had this to say about that:

      Susan,

      I’m sorry you are dealing with this dreadful disease. You make a good point: it seems the word “journey” is reserved for cancer. I’ve never heard about drumming as part of dealing with cancer. Yes, nonsense it is.

      Thank you for weighing in with your opinion.

  11. Jennifer M Lopez had this to say about that:

    Finally!! I thought I was the only one who declared war on the word “journey”. I am 5 years out of ovarian cancer but I still cringe when I hear someone refer to cancer as a “journey”…even those currently dealing with this horrific, life-changing disease use the word. For some reason it is the only “correct terminology” I guess. As if it’s some peaceful walk through a meadow or Hobbits trying to locate the magical ring. What nonsense…call it what it is…a fight…a battle…even an experience is better than a “journey”. Thanks for letting me vent!

    • Beth L. Gainer had this to say about that:

      Hi Jennifer,

      Feel free to vent away about this word, or anything else, for that matter. It’s amazing how many people with cancer still use “journey” to describe their own experience. I don’t know the right word. Currently, I call it an experience, but that doesn’t seem sufficient either.

      Thank you for your comment. I appreciate it.

  12. Clark had this to say about that:

    Hi Beth:

    Wow, a friend of mine has breast cancer and I have had a second recurrence (a year ago) of prostate cancer. I was looking at her Caring Bridge site and someone referred to her Journey. I thought about that for a bit and also wondered why people use that term, so I googled “Why do people refer to cancer treatments as journey” and your site popped up first! I guess it truly inherently irked me because, well, everyone who has cancer is really just on a bad trip. My friend just had her fourth chemo appointment today and I am off to my Oncologist next Wednesday to see what my numbers tell me.

    Bottom line is that the trip my wife and i took to Japan and Korea last summer was a journey, but a trip to the Oncologist just isn’t! Thanks for getting the word out!

    • Beth L. Gainer had this to say about that:

      Hi Clark,

      I’m sorry about your friend’s situation and for your recurrence. I like the way you put it: “…everyone who has cancer is really just on a bad trip.” You got that right.
      Hoping all goes well at the oncologist.

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