Speak No Evil

Or, "What Not To Say To a Cancer Patient."

First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.

When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.

If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.

I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.

Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).

These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).

Please do not be one of these people:
"The One Up" 
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.

"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.

"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...

"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.

"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.

"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.

"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time. 

"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).

"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.

"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah."  As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer.  *SIGH*" 

"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.

The Dumb Questions:
I kid you not, I'm not making any of these up.

"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...

"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.

"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.

An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...

Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us. 

So, what can you say? Or what should you say?

"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"