A year ago this month I was diagnosed with breast cancer, and in light of that, I have a few things to get off my chest. I’ve had something to say for a while, but I’ve put it off because I wasn’t sure how to write it without sounding like an asshole. Then I realized, I am an asshole sometimes, so I might as well own up to it and do it. Still, I’m going to try to word this as nicely as I can.
I was talking to a friend of mine, whose mother was recently diagnosed with breast cancer, and the things people have said to her had me cringing. It reminded me of the things people said to me when I was recently diagnosed and told them about it. The thing is, I’m not a sensitive person. You can try your worst and I won’t be offended. I guess that’s what happens when you’re used to hearing hurtful things from people who are supposed to love you unconditionally (my husband is exempt from this, by the way). My point is, when people said those things to me, I wasn’t offended or freaked out, but I know that if they’d said it to somebody more emotional, they would have flipped. So I’m going to make a list of these things as well as a list of things I wish I had heard. This may get long, so bear with me (or don’t).
Things I wish people wouldn’t say:
1. “Oh, you have cancer? I’m so sorry. My friend’s mom had cancer and she died the most horrible death.”
Umm… fuck you, asshole. I did not need to hear that. I’m sure you mean well, but seriously? NO.
2. “My aunt went through hell during chemo, and her hair fell out right away, it was so crazy. She looked like a totally different person. I hope that doesn’t happen to you!”
LOL. I’m not even making this up. Somebody said that to me. And I laughed, because I had to. Then I said, “I’m pretty sure that WILL happen to me, but thanks.” What else can you say?
3. “Omg. You have to wait three weeks for your results? That’s so scary. I hope it doesn’t spread during that time!”
Again, please, shut the eff up. I know you mean well, but for the love of the gods of sanity, just stop. I told my doctor about this one as soon as I saw her because although I’m not prone to freak outs, I was starting to worry. I mean, we’ve all heard the whole “the cancer started in her breasts and then spread to her brain” stories. Turns out, cancer spreads, but not that quickly. At least not breast cancer. According to my doctor, even though I discovered my cancer when I was 30, it had most likely been forming when I was 26-27.
4. I hope you don’t die.
This one I’m laughing as I type, because this is what my 5 year old told me when I told him I needed to go to the hospital and stay there for a couple of days. He’d only known of my deceased miniature schnauzer going to the hospital and staying there, and because she never came back, he assumed anybody who went to the hospital went to die. If you’re an adult, never say this.
I could probably go on and on about those ^, but I won’t. Here’s the thing (the BIG THING). Unless you hear something from a person who had first hand experience (and by first hand experience I mean THEY HAD CANCER, not their mother, not their father, or their dog or their parrot, but THEM), you don’t need to pay much attention. Why? Because they have no business speaking on behalf of us cancer patients, unless they’re telling you a positive story.
Things I wish somebody had said while I was waiting for my diagnosis:
2. Okay, fine. MAYBE “let me know if you need anything.” The whole “I’m sure everything will be fine” is annoying. “I’m sure it’s nothing.” I have a fucking lump inside of my boob. It’s obviously something. RAGE. RAGE. RAGE was what I felt.
Things I wish I would have heard after my diagnosis:
1. You have options. A lot of us (most of us) are fortunate enough to have options. This was the one thing my OBGYN said to me right after he said, “This is such a shitty situation.” He said “You have options. I’m going to point you in the direction of the best doctors I know, we’re going to take care of this, and you’re going to be okay.” You wouldn’t believe how many people aren’t as lucky as I was though. Some people hear cancer and think “death”. Don’t be that person.
Things I wish a person who’d undergone a flap double mastectomy had told me:
1. Flap surgeries hurt like a bitch. It is not a “tummy tuck”. My mom told all of her friends that I’d gotten a tummy tuck. I was appalled when I found out about this. I had four drains hanging from my body for a month, I couldn’t stand straight, my body looked like Frankenstein’s monster and The Joker made a baby, and she was telling people I’d gotten a tummy tuck. ::Deep breaths:: I still need to draw a picture of all of this for you guys. I will say, my surgeons are ROCK STARS. (I can say that now that my reconstruction is complete.)
2. Your breasts don’t make you a woman. Your strength, your endurance, your compassion, and your fierceness make you a woman. Remember that and repeat it daily.
Things I wish a person who’d undergone CHEMO would have told me:
1. You’ll lose your hair after your first session.
2. You will lose your hair. Get over it. This may seem huge right now, but in a couple of months you’ll look back and realize how little it was. I cried over my hair more than I did over my cancer (which I never cried over). My hair loss, however, I started mourning the moment I found my lump.
3. Your hair doesn’t make you a woman. Neither do your eyebrows (which you will learn how to paint on and they’ll probably look better than they look now anyway). Five words: Anastasia of Beverly Hills Brow Wiz.
4. Some days, you will want to die.
5. Other days, you’ll be amazed that you got through those ugly days.
6. Your mouth will taste like chemo for a while, and I’m sorry for that. Ice helps. Water with ice IN A GLASS helps (stay away from plastic, it’s freaking disgusting). Ice cream helps. → your doctor will probably tell you not to eat ice cream. My doctor yelled at me for this, and I sat there smiling and nodding my head. I won’t type what I was thinking, but I’m sure you can guess. Chocolate ice cream saved my life some days. (Note: this is not hyperbole. It really did save me some days.)
7. If you’re getting the Neulasta shot, your bones will feel like somebody is breaking them one by one. You’ll get used to it after a while.
8. If you are not against medical marijuana- USE IT. It is the best anti-nausea and bone ache medicine.
9. I can sit here and give you all of the advice in the world, but nothing I say will take away how terrible it is. You’ll get past it and you’ll be stronger when you do. I know that sounds like a cliché, but I promise you that it’s true.
Things I wish somebody would have told my husband/kids/etc.:
1. She’s going to be okay.
2. She’s strong.
3. Sometimes, leaving her alone is the best thing you can do for her.
4. Ask her if she needs something, if she lashes out at you because you’ve asked her this 10 times, please ignore it. She hates feeling like she needs to depend on somebody.
5. Remember how independent she was before all of this and respect her when she says she wants to do things for herself. Let her try until she gives up and asks for help. If she doesn’t ask for help, help her anyway.
6. Sit with her while she’s at chemo, even if she screams at you and tells you that she doesn’t need you and you should go to work. My husband sat with me through each session, despite me being the B that I am, and I am so thankful for this. I’m a loner, I would have been okay without him, but I’m glad he was there.
7. Some nights, you’ll hear her groaning and whimpering. She’s in pain. There’s nothing you can do about it. Being there is enough. I promise.
8. Tell her that she’s beautiful. Even if it’s not true, even if you don’t think so. Even if she looks like a virtual stranger and so different from the person you saw every day a few months ago, tell her. She’s still just as beautiful inside, even if some days she makes you think all of that beauty died.
9. You are SO appreciated.
Things I wish somebody would have said post-chemo:
1. You did it. You actually did it.
2. It’s not over, but hey, you got through a major part of this!
3. You can go ahead and cry now.
4. It’ll take a while for your taste buds to come back, but they will.
When I went in for my biopsy and mammogram (which they didn’t want to approve me for because of my age and lack of family history. I wrote about this on another post), I met an eighteen-year-old girl. She was also there for a biopsy, and was also diagnosed with breast cancer. There were older women in that room with us, yet we were the only ones who were calm. The memory of that has stayed with me. Even now, a year later I think back and remember her demeanor, mine, and the others. They were visibly scared.
The eighteen year old was just bummed she was missing half of the pep rally at her university. I was bummed I had to ask my mother in law to pick up my kids from school. To be 100% honest, I wasn’t scared. I just wanted answers. I’m like that though, very little scares me. Death doesn’t really scare me. I hate the thought of those I’ll leave behind. I hate knowing how they’ll feel, since I’ve been there. I know what I feel at the loss of so many loved ones. I know the holes it leaves in your heart. But I’m not scared of actually dying.
I have met so many incredible women during this journey, and sadly, some of them are no longer around. Before cancer, when I heard about somebody dying from the disease, I was saddened. After cancer, when I hear about these deaths, my heart plummets. I feel like little pieces of me die with them. Suddenly it’s not just “another death”, it’s “one of mine died”. I’ve never been to war overseas, but I’ve fought a war against my own body, and the people I speak to who have been in my shoes instantly become soldiers in my brigade. It’s unfortunate, but the amount of people diagnosed can make an army of their own. And we do. Every day just means another day we’re trying to survive, but then… isn’t that your life too? When people say “she lost her battle to cancer”, it enrages me. They didn’t lose anything. Dying isn’t losing. Dying is a part of life that none of us are going to escape.
The next time somebody tells you that their loved one was just diagnosed, please, please, please don’t tell them how somebody you know died or how terrible it was for them. It’s not that you can’t talk about your experience with it or the losses you’ve endured, it’s just that it’s not the first thing they want to hear when they tell you. I went to a work picnic with my husband over the weekend and one of his co-workers was telling me how amazed she was by me. Her words were, “I’m sure some days were hard, but I never saw you looking miserable, and when I asked your husband about you he always said how well you were doing.” It’s something I’ve gotten used to hearing, and honestly, I’m thankful for it, even though I don’t think I’m doing anything special. I’m human. There were terrible days, but why would I sit there and tell people about those? I don’t do it unless I feel like I need to warn them about what they’re going to go through. Life is incredibly short to dwell on the bad times. Trust me, I know. The way I see it, nobody is exempt from pain and suffering. It’s just a matter of what we do with it and how we deal with it.
PS. I’ll try to illustrate my mastectomy and reconstruction soon!
Update: These cards are great: http://www.slate.com/blogs/the_eye/2015/05/06/empathy_cards_by_emily_mcdowell_are_greeting_cards_designed_for_cancer_patients.html?wpsrc=sh_all_mob_fb_top