What NOT to Say

The girls on the YSC board posted this... I think its true and very helpful. 

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

(And 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 besides, 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 bad when we're healthy as well, because, truth be told, chemo is not flattering to just about anyone.

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. 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. It's always hovering over your shoulder, and you never 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) "Well, you're young, so at least you caught it early."

Folks, this is 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 usually pretty big. My lump was 4 centimeters. Not small. Cancer in young patients, pre-menopausal, is usually more aggressive than in older patients. Finally, your chances of getting a second cancer when you've been diagnosed young is much greater. 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."

Again, I totally get that this is said with good intentions, but it'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) "Cancer is a gift. You really learn to 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. Of course it's great that more money is going to fight the disease, but I do worry that companies are making LOTS of money off this disease and that makes me a bit pissed off. When companies make NO profit off of the cause marketing, I'll feel a bit better.

8) "You'll get back to where you were before cancer."

This is a hard one, and this may be unique to me - I don't want to claim that this is universal. 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 where I am 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) "Cool! Free boob job. Lucky!"

Groan.

10) "I can relate. When I was pregnant, I (insert comment about body changes, bad sleep, nausea, hair changes)...."

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 my 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 do (insert Do yoga, Drink green tea, Take evening primrose, See an accupunturist, 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, "well, 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) "That sucks."

4) "You will kick this." (as noted below, this one is a mixed bag. Sometimes it's good to hear when you're freaking out, and other times, it feels false and when you're not so sure, it can be received with mixed emotions.)

5) "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.)

6) "Hair grows back and boobs are overrated." (from an email from a male friend when I was having a particularly bad day.

7) "Can I come to chemo with you?"

8) "I don't know what you're going through, but I know it sucks."

9) "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."

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.