MBC is Not a "Journey"

Bestbird
Bestbird Member Posts: 2,818
edited March 2017 in Stage IV/Metastatic Breast Cancer ONLY

It's more like being dropped, barefoot and blind, into a minefield.

Thus was my thought when waking up today.  Perhaps tomorrow will be better; even so, I cringe each time mbc is referred to as a "journey."  I feel that the term undermines its significance, terror, and inevitable conclusion.


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  • JillThut
    JillThut Member Posts: 1,470
    edited February 2014

    it does indeed undermine its inevitable conclusion.  It's like when someone asks me innocently if I am going through chemo.  The implication being that I will get through it and come out on the other side whole.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited February 2014

    It's annoying all right, but just another trendy euphemism that I try not to let bother me. 

    So many other things irritate me more!

    Crankily,

    Tina

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2014

    I do think "journey" is a popular buzzword. I know we each have our hot buttons when it comes to semantics, mine is warrior. If someone tells me I'm a cancer warrior or pink warrior, I may just scream (or maybe I'll just pick up my sword and shield and whack them!)

    Caryn

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  • phoebe007
    phoebe007 Member Posts: 10
    edited February 2014

    "Journey",  My Dad gave me a small plaque. I'd like to share with you.

    Journey "For I know the plans I have for you; declares the Lord's, "plans to Prosper you and not to harm you, plans to give Hope and a Future. Journey can be however You choose to see it. I choose to stay strong and Not accept what I've been dealt;  but instead I choose to Prosper and enjoy my Future!  Thanks for letting me share.

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  • EnglishMajor
    EnglishMajor Member Posts: 2,495
    edited February 2014

    I am also not a fan of the journey lingo--it makes me think of people trekking across Europe. Face it, metastatic breast cancer is a miserable commute--imagine the worst flight you've been on or a truly awful car trip. Now imagine there would only be more obstacles--missed connecting flights, lost baggage, lousy food, middle seat on a 6-hour flight, etc. etc. 

    One of our local hospitals, during October, ran a " Stories of the Girls"  mammogram/breast health promotion big banners in Chicago's Union Station--as if it were Ladies' Night down at the bar or something. Anyhow the phone number was something like 1-800-JOURNEY. Ugh!!!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2014

    So much can related to a Journey.  Certainly a wrong word to describe mbc.  Sounds like they are trying to take the fear out of a terminal disease.

    Terri

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2014

    A journey... Trekking in Nepal, exploring the countryside of France, overland from Kabul to Amritsar , hiking the Grand Canyon. MBC ? Not so much.

    Women warriors... Legertha in the H2 tv series, Vikings. Now, she was a warrior!

    Caryn

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  • LizLemon
    LizLemon Member Posts: 540
    edited February 2014

    Bestbird,

    You are so right on target. You put it so eloquently. There is so much of this image manipulation around all stages of breast cancer. Like breast cancer has a PR team. It's particularly insulting when words including, but not limited to: 

    • Journey
    • Fight
    • Warrior
    • Chronic

    are used in the same breath as MBC. Chronic is the one that pushes my buttons the most. My asthma is chronic, my MBC is terminal, period. My normal lifespan has been stolen.  I will never grow old with my beloved husband, will never see my grandchildren be born. To call that a journey is about the most horrific use of the word I can think of. 

    LL

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  • Romansma
    Romansma Member Posts: 1,515
    edited February 2014

    It always bothered me to see that word used too.  Journey implies that you will arrive somewhere pleasant at some point.  We are on the Titanic, and the ship is going down.  Hardly what I'd refer to as a journey!

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  • Inky
    Inky Member Posts: 153
    edited February 2014

    Yeah, every time I hear that word "journey" in reference to metastatic cancer, I think of a movie like "Lifeboat" by Hitchcock. It always make me wonder who's the Tallulah Bankhead character on this discussion board, since there are so many strong, funny, and sardonic women aboard this particular vessel.

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  • NYCchutzpah
    NYCchutzpah Member Posts: 415
    edited February 2014

    English major what an appropiate analogy of MBC to a lousy commute. I realize now that is exactly how I feel, stuck in traffic wondering which lane I should be in and what is up ahead.

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  • stellaratovsky
    stellaratovsky Member Posts: 618
    edited February 2014

    To me it's not a journey it's hell but I make the best of it.  I hate when people who no nothing about mbc say it's going to be ok or how long will u be in treatment I am so sorry god but I feel like breaking there faces.   My manager who has been with me on this journey who I confined to asked me are u sure there is no cure.  I was like seriously are u that stupid or what..  But stupid people can't help themselves so I don't even bother.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2014

    Stella,

    I hear what you're saying. I guess when people ask about cure or otherwise show lack of knowledge about mbc, I cut them some slack. After all, if the've never had it touch their lives, why would they? You would not believe how ignorant I was about bc prior to my dx. When told I had DCIS and IDC, I said, "You mean there's more than one type of bc?"

    Caryn

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  • Mompsych
    Mompsych Member Posts: 516
    edited February 2014

    it's not a journey- it's a scary roller coaster ride  and then you eventually run out of tracks.  I know - yucky image but I'm in a dark phase now. Hoping for a ride back up for a while...

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  • Springlakegirl
    Springlakegirl Member Posts: 216
    edited February 2014

    Bestbird,

    Haha!  Good analogy!!  Sorry you're having a bad day though!  Keep your head up and stay strong as you navigate the "minefield".  We are all on it with you.  (Notice how I didn't say journey?)  ;)

    deniseneish.com

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  • Kimmie0247
    Kimmie0247 Member Posts: 38
    edited February 2014

    Ladies this is off topic , but I need incite. My son signed me and his friends up for Susan G Komen's Bowling for a Cure. Omg these women are c depressing and nuts! I was asked if I was a Survivor- I replied no- my oncologist says I'm a Fighter :) I really like that he says I'm a fighter. Survivors to me are NED.

    Needless to say I was bombarded my women who wanted to know who my OC was and give me and him a piece of their mind. My son said it was like I started WW3. I even refused to be on tv because they made such a big deal. I try and have a good attitude and be smiling and cheerful. I also try and not think about the time I have left and just do what I want and spend time with my son...The son who says he will NEVER sign us up for anything Susan G Komen again.

    To make matters worse it was the 1 year anniversary of my aunt passing away from bc. She had a metastic recurrence at age 91. She told me at her age she was too old to fight like she did at 70. She was a Survivor for 19 years.....

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  • Fitzy
    Fitzy Member Posts: 136
    edited February 2014

    Life is a journey and everyone's life ends the same way - with death. How and when we die differs. Hackneyed expressions abound in describing so many events, it's just easier. MBC is a death sentence that many still live for years carrying, while others depart earlier.

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  • bhd1
    bhd1 Member Posts: 3,874
    edited February 2014

    I also do bit like it when peo call me a survivor

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  • Annie62
    Annie62 Member Posts: 1,081
    edited February 2014

    I too hate the term journey. Along with lots of other buzzwords. Ick. And no, cancer didn't make me a better person. I was just fine prior to dx. ;)

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited February 2014

    Bestbird, I love your analogy.  I know many of us have a wonderful quality of life and that's great but for me I almost need someone to hold my hand when I go out now.  So your analogy is great, because if I was blind, barefoot and dropped in a mine field I would definitely want someone to hold my hand. 

    LizLemon, I agree with you also that I don't like when people refer to it as a chronic illness either and then compare it to diabetes.  I don't know that much about diabetes but I think diabetics can stay on the same medication forever, correct?  If that was the case for us then I would be ok with calling it a chronic illness.  I think that is the goal but conventional medicine is not there yet.  I am thankful that there are a lot of medications available for us but nothing is guaranteed to work for any length of time.

    (I still look like a wounded deer in headlights when I go in for my treatment.  The nurses are very nice. They'll try and make me feel better so they'll compare MBC to a chronic illness like diabetes. I just want to scream out, " A few months ago I was a non-cancer patient just like you" - luckily, I don't do that because I don't know what they are going through.)

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2014

    Hi ladies, 

    Forgive us for popping in here, but we noticed this thread and wanted to acknowledge the extreme sensitivity around referencing metastatic disease. In an effort to be appropriate with the language we use on our main site as we revamp the metastatic & recurrence section, we were wondering if maybe you'd like to share with us what words/terms/phrases you think would be most fitting, appropriate, non-offensive, etc.

    We understand everyone looks at things differently, but perhaps having some other ways to describe what you're all going through will help us. 

    Thank you in advance for your consideration and discussion about this!

    --Your Mods

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited February 2014

    Mods,

    Instead of saying " fighting", I like " dealing with", or " living with" 

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited February 2014

    Annie62 - I so relate. I felt just fine prior to dx too!

    Bestbird- Journey from hell, yes. The thing that makes it most miserable is that treatment never ends.

    Moderators: The references to "fighting" military style - assaults, battles, wars just does me in. I don't feel like I am in a war zone, nor do I feel this is a helpful analogy. It makes for more conflict then there was to start with.

    Keep it less "emotionally loaded" with words more neutral like treatment, chemo, hormonals etc then add aggressive, moderate to identify intensity. Just a statement of fact.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited February 2014

    mods,

    Thanks for your sensitivity. Like rosevalley, I don't like "military" words. See my earlier post on the term warrior. That being said, everyone has their semantic hot buttons but trying for the words that are as emotionally neutral as possible is a good goal.

    Caryn

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  • JourneyOn
    JourneyOn Member Posts: 16
    edited February 2014

    Thanks for popping in here. You know, throughout all this cancer 'thing,' my experience is that there are a handful of friends and family members have perfect pitch when it comes to communicating their care and concern.  For me, I believe that intentions do count -- and if no harm meant, none taken and I work hard to accept the kindnesses and concerns of people as I know they are from the heart.    Life is a journey -- ours is a more difficult one for sure.

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  • kayfh
    kayfh Member Posts: 790
    edited February 2014

    Me too!  I hate warrior terminology.  When I see that in an obituary, she fought this disease with every ounce of strength she had, I want to hurl.  I know she whined and griped at least some of the time, to some people.  If she didn't I don't understand.  I mean who just accepts this as her new reality and gets on with a "fight".  There must be some element of WTF this is just not fair !

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  • Fitzy
    Fitzy Member Posts: 136
    edited February 2014

    I've never thought, 'WTF, this is not fair'. I think about the millions starving or abused around the world, the economic disparity between first and third world countries, or the life inflicted on the indigenous population in my country through colonisation and think, that's not fair! We have a disease that will eventually kill us but most of us, in comparison to the world population, have had privileged lives of comfort and care, for which I'm grateful. 

    As for terminology, I feel as though I am in a battle or competition to keep living for as long as I can in this journey of life. I like feeling like a, 'Warrior Princess", although my obit won't refer to me, 'losing the battle (or game of life)' but simply, 'she died from breast cancer' and I will have the best, 'Celebration of my amazing Life Party' for all my family and friends. 

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited February 2014

    It's so reassuring to realize that I'm not alone in loathing the term "journey," and recognize, as exbrnxgrl mentioned, that we each have varying hot buttons that set us off.  I think what may offend so many of us is that which might be termed "metastatic pink-washing," signifying terms that gloss over and/or trivialize the true nature and significance of our disease.

    Your input is deeply appreciated, irrespective of whether "journey" or other terms disturb you.  And thank you to the Mods for reaching out to gain better understanding of how we perceive allusions to ourselves and our condition.

    I'd welcome your opinion about something that might potentially be actionable as a result of this discussion:  Perhaps it might be worthwhile to reach out to the newly-formed Metastatic Breast Cancer Alliance - and potentially to other mbc-related organizations  to make them aware that a subset of the metastatic population may find certain terms offensive (journey, chronic, warrior, heroic, battle, fight) and to kindly exercise sensitivity when describing the disease and the people who are diagnosed with it.

    So for example, when referring to someone who has passed on, instead of: "This brave warrior fought a heroic battle throughout her
    breast cancer journey."  they could write something like "Until she was no longer able to do so, she dealt with with the formidable and painful challenges relentlessly presented by the incurable disease called metastatic breast cancer."  And ideally  they could avoid using the sensitive words in their literature. 

    I realize that not everyone cares about terminology. But for those that do (and for the population at large), words that undermine our situation represent yet another version of pink- washing.




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  • Tina2
    Tina2 Member Posts: 2,943
    edited February 2014

    Hear, hear, Bestbird! Words are important.

    Tina

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited February 2014

    I don't mind the word Journey. For me it is in a way. A new path in life that isn't pleasant all the time.

    As for the Band? I hate them.

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