Tuesday, November 9, 2010

Because I couldn't have said it better

I have been flopping about all day trying to write something important meaningful coherent. My brain is just plain shot. It happens. Perhaps it's because I spent too much time helping my son study for his spelling test. Maybe it's because I've been using too much Drixoral to unplug my allergy swollen nasal passages. But, there you go, today I'm an idiot.

So I thought I would share the brilliant words of another breast cancer survivor, Marika Holmgren, contributor to The Huffington Post. On October 22 of last year, nearing the end of Breast Cancer Awareness Month, she put together The Top Ten (actually eleven) Things Cancer Survivors (Probably) Don't Want to Hear. I haven't heard anyone say it as well.

October used to be my favorite month. I live in Half Moon Bay, and the coast becomes an ocean of gorgeous gold pumpkins as far as you can see. The weather is clear and crisp, just cool enough to remind me of autumn in New England where I grew up.
But since I was diagnosed with stage II breast cancer at age 37 on February 1, 2007, October has become a month of conflicted feelings, and well, some pink ribbon dread. While others may view the month as a great gift to the breast cancer community, raising awareness and providing funding through the thousands of pink ribbon cause marketing efforts, when you've had the disease, seeing the ubiquitous symbol around every corner has the potential to bring on a slight wave of nausea.
So I figured rather than just complaining and moaning, I'd try to provide my own little bit of "awareness" during the last, waning days of BCAM. Here you have it.

Top Ten Things that Young Survivors (Probably) Don't Want to Hear

Let me preface by saying that we understand that these statements are all uttered with great love and only the best intention.

1) "You have a beautifully shaped head! In fact, you look great bald!"
We know this is not true. We don't feel pretty. We don't want to stay bald. We want our hair back.

And when you hear, "You look great. I wouldn't even know you had cancer if you hadn't told me!" it makes us think that we must look pretty horrid when we're healthy as well, because, truth be told, chemo doesn't do much for your looks. 

2) "Oh, you have breast cancer. My (aunt, grandmother, mother, sister, friend) died from breast cancer. But I'm so glad to see you're doing well."
I don't know how to say this politely, so I'll just say it: some of the people you say that to will die of breast cancer, even though they look great and are doing well now. Your mother/aunt/grandmother etc. may have also seemed to be doing well at one point. The reality is that cancer stalks you like that horrible ex-boyfriend that won't leave you alone; you never really know if it's gone for good.

We want to hear the stories of long-term survivors. I love hearing, "My mom had breast cancer 27 years ago and she's great." 

3) "You're young, so at least you caught it early."
This may be the single biggest misconception out there, and it drives me nuts because I have to have the awkward conversation with people that in fact, my cancer was already quite far along and very aggressive.

When you are under 40 and you've been diagnosed with breast cancer, it's usually because the lump was large enough to be felt since you're not yet having mammograms. When a lump is large enough to be felt, it's often pretty big. My lump was 4 centimeters. Not small.
Cancer in young, pre-menopausal patients, is typically more aggressive than in older patients, and your chances of getting a second cancer when you've been diagnosed with a first cancer at a young age is increased.
So unfortunately, when you're talking to someone young who's been diagnosed, it's less likely that they caught it early, so just tread carefully.

4) (after treatment is complete) "So, you're cured now, right?"
Currently, there is no cure for cancer. I'll know I'm cured when I die of something else.

5) "Well, if you have to get cancer, breast cancer is the one to get."
That's like saying, "Well, if you had to lose a family member, a second cousin is the one to lose." It all sucks. It's all bad. We do not sit down and thank god or whomever that we "only" got breast cancer. At least I don't. 

6) "Surviving cancer is a gift that will allow you to truly appreciate what's important."
If cancer is a gift, can I return it please? A gift card would have been better. 

7) "Isn't it great that October is Breast Cancer Awareness month? Think of all the awareness and money that's raised."
Perhaps if Target wasn't hawking pink rice cookers where a nickel goes to Komen (ok, I made that up, but it's possible), I wouldn't quite feel so nauseated at the site of all this cause marketing. It's great that more money is going to fight the disease, but I do worry that companies are making lots of profit off this disease and that makes me a bit pissed off. 

8) "You'll get back to where you were before cancer."
I know that people only mean well here, but the reality is that my body, is completely different than it was before cancer and before all the drastic treatment. I don't know that I'll get back to where I was, and frankly, I'd rather spend my energy making peace with my new body rather than spending all my time trying to get back to my pre-cancer self.

Rather than push me to get back there, accept me as I am and help me love my new scarred, crazy body.

9) "Free boob job. Lucky!"

10) "I can relate. When I was pregnant, I (insert comment about weight gain, not sleeping, hair thinning/changing)...."
I know that cancer seems to have a lot in common with pregnancy with all the nausea, hair changing, hormones, etc., and it's particularly tempting to make the comparison because that's what most of our peers are doing now - having babies, not getting cancer, but there's a pretty damn big difference. And again, I know you're just trying to connect, but it's a painful comparison (particularly since some of us, as a result of the disease and treatment, will not likely be able to have children).

And because 10's not quite enough, one more...

11) "You know what you should do? You should (insert do yoga, drink green tea, take evening primrose, see an acupuncturist, etc. here)".

I heard these all so much that I used to joke with my brother that if I died from this stupid disease, I wanted the words, "Guess she should have done yoga" on my tombstone.

So now that you've got my Top Ten of things not to say, you're probably sitting there stewing, "what the hell does she want me to say then?"

Here you go. Some of these are the things that people actually said to me during treatment that made my heart sing and reminded me that I was never alone.

1) (upon hearing my diagnosis) "Well, what are we going do to about this?"
2) "You are not alone. We're here with you."
3) "I will be right over."
4) "You are strong." (when spoken as a reminder when you're in doubt, not as praise for doing simply what you need to do to stay alive.)
5) "Hair grows back and boobs are overrated." (from an email from a male friend when I was having a particularly bad day.
6) "Can I come to chemo with you?"
7) "I don't know what you're going through, but I know it sucks."
8) "I'll be over to watch movies, sit with you, cook you bland pasta, and laugh with you when you singe your wig opening the oven."
9) Nothing. Sometimes we just need someone to listen to us and not try to fix it.
10) Anything. It's better to say anything, even if it's one of those top ten above than to say nothing and pretend like this crap is not happening. 

Take this all in the spirit in which it is written. As survivors, we're not perfect, and we know that no one is perfect and no one says the right thing all the time. But if we all help each other along in this insane journey, we're one step closer to getting it right.
Marika Holmgren
The Huffington Post, October 22, 2009



  1. Cyn, This was a great post. (Not that it's great your brain "was shot" as you said) Sometimes sharing what other people have said works just fine! I totally related to these eleven things not to say. I think I've been told all of them, well not the first one. Thanks for sharing.

  2. Thanks, Nancy. Didn't she capture it well? I keep trying to think of the other ridiculous things people said and they elude me! Perhaps that is my brain's way of allowing me to still love the (momentarily) tactless! :-)

    Hope you are well.