Slipping off the fence

Geckos have very sticky feet apparently.  That is why they can scuttle up and down walls, along the ceilings and in and out of corners without regularly falling onto the floor.  I must have some of that stickiness when I write because I quite like to sit snugly on the fence during many of the lively discussions which we have online.

 

I find myself losing my grip and sliding off the fence just a little this weekend, following a bit of an altercation with Facebook.

I am in the excruciating situation of having been taken in by the latest awareness raising game or activity on Facebook.  A couple of years ago women put their bra colours on their status updates and watched as comments of puzzlement came from the male membership of Facebook.  The idea behind it was to make people stop and think and with the reference being to bras, there was a link to breast cancer.  Hence raising awareness.  I guess.

Last night I saw a Facebook status update posted by a recently married friend, referring to a number of weeks, and craving a certain food.  There was a string of comments, sending warm congratulations and expressing delight at the prospect of her being x weeks pregnant.  Thinking this was a lovely piece of news, I added my own warm wishes, preparing to tell the great news to hubby J.  It was not long before my friend posted very quickly that this was not about pregnancy and had to issue a very direct update to put folks right.  I was mortified.  I might as well have put my red face right up there on Facebook too, as that is the side bonus of the misunderstanding – it is VERY public. They should add a “cringe” button, as I would certainly have clicked it beside my comment.

Usually I step back from these campaigns a bit.  I don’t want to upset those particularly who have given me enormous support during breast cancer.  But this prompted an unusual amount of nighttime thinking, which is taking the form of this seriously, “off the fence” rant about this Facebook activity.

So what is my problem?  Why am I particularly struggling with this awareness campaign?

Well, there are a number of reason…………….

  • I personally feel bad for attacking it.  There is a feeling that by taking part in this, it offers support and solidarity to women and men who have been diagnosed with breast cancer.  I feel guilty that I am rejecting the support being offered to me by people I am close to.
  • Awareness raising is about EVERYONE and should not be withheld from a very large part of the population.  Why for women alone?  Men can also get breast cancer.  And how about the men in our lives who have looked after us and loved us unconditionally throughout this.  Is it fair to exclude them? And do men have sisters, wives, daughters, mothers and friends who have been diagnosed?
  • The risqué tone of the campaign also feels a bit unnecessary.  We don’t need to have an undertone or insinuation to make a point.  Breast cancer is not cute, it is not fluffy and pink.  And it is difficult in many contexts even to say that you have breast cancer, it is too private.  There are many cancers which are forgotten or hidden and don’t have the attention that breast cancer does.
  • Updates which clearly suggest pregnancy are at risk of being insensitive to those affected by fertility issues following active and prophylactic treatment.  Chemo and radiation frequently affect fertility.  We affectionately call it the “chemopause”.  Women who carry a BRCA mutation gene often have elective surgery – oopherectomy and mastectomy.  I had never heard of an oopherectomy before my own breast cancer experience.  This is the removal of the ovaries, a procedure taken by many women who are at a higher risk of ovarian cancer.  A step taken by many young women and a dreadfully tough decision to take for many who have to choose between having children and the increased probability or breast or ovarian cancer.
  • Awareness raising is indeed still critical, in many contexts, as I have just discussed here.  However, there is a huge need, as is widely discussed by some highly informed and well researched blogs and articles, for focus on research, targeted treatment and metastatic disease.  If you want to get a feeling for the wide and complex variety of issues around breast cancer, follow the #bcsm (breast cancer social media) hash tag on Twitter.

Please, don’t think that I am ungrateful for the enormous solidarity and support in this game, especially as I know that many are reaching out to me personally offering love and support.  Please know how much I value and appreciate it.  I trust that you know how much I hesitated before deciding to post this.

There is a huge big black storm cloud outside right now, and I feel as if have played a part in its formation!  Time to slip back onto my cosy place on the fence.

Advertisements

24 thoughts on “Slipping off the fence

  1. I can totally understand what you’re saying here, I too have been ‘invited’ to take part in this Facebook campaign by numerous people but, have not taken part for pretty much the same reasons that you have listed above.
    I too feel as though I’m rejecting peoples efforts to support me but since being diagnosed myself, I have realised that all this ‘fluffy pink stuff’ is not really ‘my way’ & whilst I appreciate the well meaning efforts of people, I do believe that all of this ‘pinkness’ distracts from the reality of this disease.
    Don’t feel bad about your faux pas on Facebook, I’m sure we’ve all done it at some point…….there’s a huge storm cloud in this Welsh Valley here too today, probably because my latest post on my blog has upset one of my friends which, I obviously didn’t mean to do but, I was speaking ‘my truth’ on my blog & I can’t change the way I feel.
    Sending you lots of love, Chez. xx

  2. A great post and one I am delighted you have written Philippa. I look back to when I first started blogging and interacting via FB three years ago and I realise how easily I followed the herd too – I didn’t stop to think about the deeper implications of these seemingly harmless campaigns. I have come a long way since then! Like you. I absolutely don’t want to criticize anyone who is taking part from a genuine desire to show solidarity and support, but at the same time, it is important for those on the frontline to point out how useless at best, and as you so rightly say, how hurtful at worst, in this particular incidence, it is to those of us whose fertility has been impaired by chemotherapy. I remember when this took off last year on FB and I hoped that it was a one off. My heart sank to see it again this year when I too was emailed to take part. I hope that we see an end to this silliness soon and I believe that more posts like these will do that for us. Well said Philippa!

  3. Right on Philippa. These meme’s have absolutely nothing to do with the realities of cancer, and in fact serve as an offensive distraction, and underpin the nature of just how “fun” breast cancer really is for the masses who refuse to “really” think about it in an in-depth and challenging way. I thought your post was very polite. Mine would not have been. I don’t have the time or patience anymore with this kind of rubbish. “thinking you are doing something” and “actually doing” are worlds apart and have nothing to do with petty meme’s.

  4. Philippa, I love that you are so honest with your response to these ‘memes.’ And isn’t that all we are asking for, ie transparency and honestly surrounding the experience of breast cancer? NOT pink ribbons, platitudes, corporate pinkwashing, and the memes of FB?
    No one should doubt that we are all for optimism and hope in the face of our diagnoses, but let’s move on to a realistic view of breast cancer that will move us into prevention, advocacy, action.
    Your blog, your post are steps in that direction.
    Thank you,

  5. Well said, Philippa. I know what you mean about not wanting to sound ungrateful, I struggle with that at times too. You don’t sound ungrateful here. You sound genuine and thoughtful. Thanks for writing this post.

  6. Thank you so much for writing this, P. I was struggling with the same thoughts this week, but not sure I was able to express them with as much patience and diplomacy as you have, perhaps because I simply don’t understand why anyone would think this sort of thing would help. xxoo

  7. girl, i had this “letter” so ready to send to Katie the other day, thank you thank you thank you for saying this in such a great way. It absolutely infuriated me down to my toenails as well. And in the same way, the woman who posted it had been kind and wonderful to me during treatment. I think we need awareness alright, awareness that these things are offensive to breast cancer patients…

  8. Well, I just got that and and when I enlightened the person she unfriended me. She told me to respond personally and not respond to the 57 people SHE sent it to.

    Alas. I hold firm on the cute cancer bull being just that. So, I may never do business in my home town again.

  9. Well said Philippa… I’ve not come across this particular ‘game’ yet this year, but remember feeling exactly the same last year with that marital status game, in the name of ‘awareness’ you understand. Too much of what we see about breast cancer forces us into a way of talking about breast cancer which is cheerful and optimistic, and covers up the reality of breast cancer.
    So, instead of those games, let’s try and say something real about breast cancer shall we?
    Thanks for writing this.

  10. confession time – I actually took part in the ‘bra game’ and so did some of my fellow bcers with answers such as a colour, none, white with pockets, etc but I find the more crass ones like shoe size with sad face (insinuating something else entirely) or this pregnancy one, which thank goodness i havent seen yet, arent about breasts or breast cancer at all and raise no awareness at all, the ‘tit’illation factor over-rides common sense I think

  11. When the first invitation to this year’s variation the campaign landed in my mailbox my reaction was definitely, “here we go again”. As someone who coaches cancer survivors and their caregivers, I can’t, in good conscience, participate in this well-meaning but, in my personal opinion, slightly misguided awareness campaign for all the reasons you so eloquently and honestly presented.

    Though the message attempts to be positive, it’s fraught with problems. What’s even worse is the cut ‘n paste campaigns. Some have very negative languaging and close with comments such as “I know most of you won’t dare to post this”.

    So far, I’ve ignored both. Neither fit with my intention or the model for living I use with my clients which focuses on thriving. My question is how could this energy be turned into an action that truly makes a difference like clicking for free mammograms or donating skills to a fundraising event that needs volunteers?

    I’d support a campaign where women post when they schedule their annual mammogram acknowledging themselves for being pro-active in prevention and reminding the other women they care about in their life to check their calendars or monthly posts on self-exams. Reporting the “boob squish” as I called it in my FB post last year, sends the kind of message that is much more my style. I appreciate the courage it took to write this post and for others to respond, particularly breast cancer survivors (thrivers), who have been down that road…women AND men.

    To truly walk my talk, I see that my next step is that it is time for a blog post of my own…”It’s Not About Bras, Handbags, Shoe Sizes or Cravings” to share why I won’t be participating in this particular line of awareness.

  12. Those of us who’ve had breast cancer, and who have a voice with our blogs, are often caught in the middle of numerous pink quagmires. I’m not one to partake of FB games so I ignore them, but it’s difficult to ignore the research and funding implications that keep us tethered to pink fences we’re not crazy about.

  13. My goodness, thank you for such insightful comments, and from such a diverse group of us. So they’re called “memes”? Well that’s another new thing which I have learned today 😉

    Next month, as we know, is Breast Cancer Awareness Month. What can we do that is meaningful, appropriate, effective and helpful? How can we bring attention to October 13 which is designated as Metastatic Breast Cancer Awareness Day? How can we promote much needed awareness of lesser known cancers? How can we pool our energy, respecting and drawing from our diversity and differences, to move forward together? How can we use creativity and humour (which is often a coping mechanism) in a way which is constructive and adds to the message, rather than demeaning it?

    What I have noticed is that this “meme” does not seem to have taken hold as much. That must say a lot!

  14. Sticky feet, indeed:) The use of the gecko is an analogy I do so appreciate.

    You’ve done more to destruct the negative aspects of the ‘pink machine’ than you realize by:

    1) being direct
    2) being honest and considerate
    3) looking at the “bigger” picture of all affected by cancer
    4) taking your time to point out your point of view.

    That’s the unheralded beauty of those who ‘sit on the fence.’ So often, as is apparent in this post, they’re taking the time to articulate a very clear point of view. I appreciate this very much.

    Thanks for a wonderful post, Phillipa.

    Hugs,
    Jody

    PS – A CRINGE BUTTON – I love that!

  15. This was lovely and eloquent. I completely agree with you. I am not nearly as tactful when it comes to dealing with this meme–especially when I hear the “it’s just a bit of fun” excuse. Yeesh. “FUN”. Cause that’s a word I totally associate with cancer. (I’m all stabby this morning because I got ANOTHER one. I’ll never understand why people think that because I’ve HAD cancer, I’ll totally be thrilled to know where they like to keep their purse.

  16. I agree with The Gecko! And I also just agreed on a fellow blogger’s wall about a similar topic. (Thanks to Mary @ JBCC for pointing me here, and there.)

    I will be returning to hear more from the feisty blue gecko!

  17. Thank you for saying what has been on my mind. Although I too tend to enjoy my time on the fence, the latest Facebook campaign has got me riled up with its ridiculous-ness. I have been tempted on more than one occasion to fire off a rude “reply all” messages to the two different women who have included me in their group emails inciting everyone to enact this mass status update to “raise awareness for breast cancer”. I don’t see how it actually raises any awareness for anything, but I keep my mouth shut to avoid being perceived as an “ungrateful Gracie” for all of the support I have received. You’re right – breast cancer is not cute and if these women understood what it felt like to get your breasts cut off or face decisions about getting your ovaries removed, they would not email everyone in their facebook address books and encourage them to post these silly status updates. Phew…thanks for letting me get that off my chest. Guess I can slither back onto the fence with you 😉
    T
    xo

  18. Terri, even as someone who has NOT been through cancer but was just a caregiver, it has taken a lot of self-control not to do some educating and hit “reply all”…I agree. And then I asked, to what end? It’s really misplaced intention just like some of the comments I received after losing my husband ~ “at least he got to do some amazing things in his life”…Okay…AND he didn’t get to build the home we designed together, or have the family we were planning, or or or…I bit my tongue because they were trying, unlike “friends” who disappeared once he was no longer there to hire them for film jobs. BTW, not a lot of fence sitters here at all…

  19. I had a hard time posting my opinion to the Facebook statuses, too. So many of my friends take part in them, and one friend is a breast cancer survivor also. I just don’t understand the point of “keeping the men in the dark.” (That was a big part of the first draft of my post…it went through several revisions!) My husband is my biggest supporter and my best friend. It would be silly to exclude him, if these statuses actually supported breast cancer awareness. Thank you for posting your link on my FB page! 🙂

  20. Pingback: The world we live in | Feisty Blue Gecko - a tail of the unexpected

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