January 8, 2013

The shit we say

When you drop the word cancer your entire world changes. People will get nervous when they see you. People will drop by, they want to see you, talk to you, hug you. People will disappoint you. People want to help, but they don't know how. Some will disappear. But you'll also get support from unexpected corners of the world.

I understand if you feel uncomfortable when talking to us. We can tell these things. Just say it out loud! It's okay. But please do not bring up the following:

I am so impressed by how brave you are
I'm shit scared. It makes me feel uncomfortable. I do hope by sharing my story I will raise some awareness. Young people do get breast cancer. I can only hope I might inspire people who have been recently diagnosed. Even if it's just one. The connection with other breast cancer patients has become very important to me.

I know how you feel
Nothing could be further from the truth. Unless you yourself have undergone the same process, you know so very little about what we're dealing with right now. So please do not compare my change in appetite with your wife's pregnancy. Do not compare my story to your neighbour or best friend who had breast cancer as well.

It'll be fine
You have no ability to make this situation 'just fine,' and we all know it. Once my treatment is finished I will not get a note from the doctor saying I will live a long and happy life (I wish!). 

Keep fighting & stay positive
Are you really implying that surviving cancer is only a matter of 'fight' and willpower? I very often feel like crap and am trying to accept these feelings as well.

You look great
I'm bald, tired and lost 10 kg (22 lbs). Please only say it if it's true! If we look like shit and you lie about it, oh yeah we can tell. But we do like to hear it when we look and feel okay.

So unfair 
This statement is not only not helpful and not supportive. It has nothing to offer, no comfort whatsoever. I was diagnosed with breast cancer. The doctors don't know why and I myself do not live under the illusion I'm going to solve that mystery any day now.

Humour in the tumor 
Yes there's such thing as tumor humour. But humour me, watch our signals. We aren't always in the mood for jokes. I always felt like it's my tumor, so I'm the only one allowed making jokes about it. When I do, laugh really hard!

Do not tell me to go see Dr. X, try a certain diet or visit certain websites. Please let me make my own decisions.

I get that people are curious and are wondering what we're going through. We do not always want to talk about it. We do not always want to answer questions about our fertility, how chemo makes us really feel and what the boobies/scars look like.

So it's okay to tell us you don't know what to say. Sometimes it's best to say nothing at all. We do not always want to talk about cancer land. But do not hide your feelings, if you want to cry with me please do. You don't always need to be positive or strong. We're all people here. If you want to offer help, offer specific help. But also understand that cancer patients do not have the energy to keep up their relationship with you right now. The letters, care packages and emails I have received over the last six months really make me feel loved. It's messages like, 'I want you to know I'm thinking of you but you don't have to write back', that add no pressure. So no strings attached works best!



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  2. I am now realizing that I might have stuck my foot in my mouth more times than one, here. Oh Cécile, I'm sorry!

    Anyway, I'll try to be mindful of what you say up there. But I won't back down when I say I believe you have the strength to get through this. Even when you feel down (especially when you feel down!) we're all here to stay positive for you. And when you need us to shut the hell up, we'll do so promptly.

    As I will right now.

    *runs away, hides behind the curtains*

    OH, I found a bunny!


    (sorry, that comment above ate up my last lines in the post. oops?)

    1. Oh dear Lu, don't worry about it! I just had to get this off my chest. I understand it's hard for people to come up with things to say. I'm really touched by your comments and that you keep reading my story even though we never met in person! Thanks girlie! And yes it's very likely you will find a bunny behind the curtains :)

  3. Oh Ciel,
    I understand you.
    Nobody can imagine what you are going through, unless, like you say, they've experienced exactly the same. It's hard for people who haven't experienced something (if it's a sickness or loss or an accident....) to give comfort to the people who have and it's good that you write exactly what you don't want to hear.

    I know from me, I'm a realist, so it doesn't help me, yes it annoys me when people say "everything will be ok". Of course it's nice to be optimistic (which I am too) but it's challenging at times.

    I can just tell you, you changed and helped me a lot.

    I've been following your blog for years (was it to jebelle times or before that already?), then, when you stopped with prettytear I followed you on Flickr and Facebook (not in a stalker kind of way, you know ;o) ). From what I've read and saw about you I could identify myself with you a bit because it seemed we're living a similar life (what you eat, the way you decorate your apartment, your relationship to your sister etc...), so, of course it hit me hard when I read your diagnosis.

    Up until then I thought "it's not running in my family so I don't need to worry" until, well, you know... you wrote that it's not running in your family either.

    I think about you constantly and since the summer I check my breasts once a month, read a lot, tell my doctor I want a sonography, no matter how much it costs (my next sonography and mammography (which I don't want) in a week will get paid for by my insurance - yay).

    At first I was scared to read your new blog, but now I read every article you post.... Hugs for you!

    1. Ahw Tracy,

      Thank you so much for your sweet words! What you said about how you can identify with me was very moving!

      I think it was around the time you moved to jebelle?! Because I can't remember what your blog was called before that. I was only 18 or so when I started mine, it seems so long ago!

      I'm happy to read that my blog raised awareness and that you're taking good care of yourself now! The mammography really is not as bad as people say. So many horror stories about that one, but it'll be over before you know it.

  4. I totally agree with everything you have said! I am approaching my one year anniversary of stepping on this crazy cancer ride. Although I have completed my chemo and radiation, I still have a surgery left. People just see hair and that equals health again. If they only knew what passes through my mind. My fears are always there poking up when least expected but I have found it easier to smile and nod. I only let two or three other people know what is really rattling around in my head. Quite frankly, it is so true unless you have gone through it, you just don't get it. I won't even get started on people telling you to stay positive. That one really got under my skin. I am learning that this journey starts out on a pretty bumpy road, but hopefully it will start smoothing out over time. It sucks but we have to play our cards our way. Just remember that it is okay to feel however you feel. I try to limit myself to 3days maximum of self pity then strap the big girl panties back on and plunge forward. Don't know if it helps but I get it.

    1. Ditto to everything here! :)

      I love that "Stay positive" is one of the things most of us can't stand hearing. lol. Yes... because if it were EASY we would be staying positive ALL the time. But it's not always possible to BE positive!

      I say the same... feel however you need to feel. And I think I have a 3 day CAP too! haha

    2. Yes so true! I love what you wrote. You're a good writer! It's important to have these kind of people that you'll really let in in though! Even if it's only two or three. Oh man and I love what you said about strapping the big girl panties back on! Seriously made me laugh!

  5. Ciel I freakin' love this post! Everything rings so true. I'm amazed at what people will say but then I guess so many people don't know WHAT to say and come out with some really dumb things instead.

    1. Thank you Monica! Yes I guess that's true. I understand where people come from, it's a tough subject. But if people would be willing to just think outside the box it might help a little ;)