What to say…what not to say 

There are lots of things to say to somebody facing cancer or any other serious life situation: 

-“it sucks”

-“I’m sorry this is happening to you.”

-“what can I do?”

-“want to go for a walk? To a movie? For coffee? Have a visit? (spend time with me?)”

-something funny.

-“I’m here for you.”

-“guess what happened at work today…guess what my mother-in-law said today… I’m so pissed off at my husband”.
That’s right, go ahead and complain to me, or tell me good stuff. I don’t want to be spoken to like you are writing me a greeting card, and I would much rather talk about what’s going on with your life then have you say some of the things that I’m going to discuss below. It’s OK to complain about your stuff, I still want to be a good and supportive friend and it is quite nice to talk about something that is not cancer. 

There are also some things not to say, that are hurtful and upsetting (unless you know 100% that they are part of this persons beliefs): 

-“everything happens for a reason”.
Everything might happen for a reason, but I can’t really think of any good reason for getting cancer. If you have one for me, I cannot imagine what it could be. Unless you will be prepared to say “everything happens for a reason” if I die (because that could be the result of this), don’t say it. 

-“It’s just hair”.
It is just hair, but losing hair is horrible. It is heartbreaking, it is visible, it is a 24 hour a day 7 day a week reminder to myself and everybody around me that I have cancer. Most women I know spend the majority of thier beauty/personal care budget on thier hair. There is a reason for this, we love to love our hair…and I have no hair (except, oddly, random hairs on my neck and chin still grow. How unfair is that?). It might be just hair, but it changes everything about how I look, and how I feel, and my hair won’t look as I love it again for a long time, it may not ever because I don’t really know what changes this will bring to my hair. Everyone says my hair will be better than ever, but the truth is that’s just something to say, maybe it will and maybe it won’t. Today when I logged onto Facebook this picture popped up, a picture I posted two years ago. I posted that picture because I loved my hair in it so much. It broke my heart to see it today. I desperately want to wake up and look in the mirror and see this person looking back at me:

  

-“You look so good, you should keep your hair short”
It’s nice to hear I don’t look hideous, but it would be nice if people didn’t suggest that my cancer haircuts/head make me look better. Even if you think it does, hearing it doesn’t make me feel better, it makes me feel worse. The last thing a vain girl like me I wants is for people around me to think I look better with cancer! It could even make me take up smoking!

-“You are so thin, it must be the cancer”.
Well no, actually a lot of people gain weight on this treatment, because of the steroids and lack of activity. I haven’t lost or gained weight, I have maintained my weight because I am
busting my ass to keep up my fit-bit steps, go to yoga or lift when I’m up to it, and not give in to the constant cravings for flavorful food to take away the taste of metal in my mouth. As somebody who values fitness (and anybody who knows me knows I do) I’d rather my hard work be acknowledged thanyouverymuch! Also, it is never nice to comment on somebody’s weight unless you know they want you to (have disclosed to you that they are on a diet, etc). Even if I did lose weight because of cancer, I would be well aware of that and rather not know that it’s obvious. I certainly wouldn’t want to know if that it’s obvious if I gained weight on my treatment! 

-“you are going to be fine, I know you are”.
I don’t know that. My doctor doesn’t know that. There is no guarantee that I’m going to be OK, there never is anyway, but there is even less of one for me than for your average cancer-free girl. 

-“A positive outlook is the most important thing”.
Unfortunately, this is not true. I wish it was, because I try to be very positive, above statement aside. But a positive outlook is not a cure for cancer. No matter how positive I am, I could still not be cured, I could still have a recurrence, I could still die of cancer. When you say things like this, the insinuation is if I don’t have the right attitude, it might be the reason that I do not overcome this. It’s not fair to put that on me, or on all the people that have, unfortunately, died or will die of cancer or any other life threatening illness. A positive attitude is important because it makes it easier for me to live my life, and it is more important because I have children and other loved ones that need me to be positive. But it’s not what’s going to save my life. Treatment, luck and early detection will (I hope, and usually believe).  

“Did you use….have you considered…you need to eat…” Discussing my lifestyle and suggesting lifestyle changes, unless I ask for them. Even more so suggesting that maybe something about my lifestyle caused this. Nobody knows what causes cancer all the time. Yes there are things that are correlated with it, and yes there are things that are correlated with a lower risk. But at the end of the day we all know people that did everything “right” and got cancer, and people that had lots of risk factors in thier lifestyle and and didn’t get cancer. I fully intend to spend the rest of my life maintaining a lifestyle that reduces my risk of recurrence, but that is between me and my oncologist and whatever research I choose to use and whatever professionals I choose to consult with. Unless I ask you, it is just as rude to tell me what I should be eating or not eating, what kind of deodorant I should use, or what kind of bras I  should wear as it is to tell that to anybody else.  

“I’m praying for you”.
Unless you know the person you are speaking to believes in prayer, or they have asked for prayer, this isn’t really a great thing to say. Anybody that knows me knows I don’t believe in God. You can choose to agree with that or not, but it is my reality. Faith is something people have or don’t, if you believe in God then I doubt that I could change your mind, similarly I don’t think you could change mine (and if you could let’s face it, now would probably not be the time), so it’s not really worth arguing. Hearing that you are praying for me doesn’t change anything for me. Also, I haven’t seen much evidence that it saves people’s lives. The other potential outcomes that one might be praying for; going to heaven, having an easy painless death…they’re just not too appealing to me right now. 

I’m sure some of you are going to read some of these things and say but “this is what I want to say, this is what I believe”. I get that, I really do. But at the end of the day this is about me not about you (because I truly believe that anybody that is saying the above things to me is trying to say something to make me feel better, that it is coming from a place of kindness. Which is why I won’t get angry about it, but that doesn’t mean it won’t hurt or upset me). Whatever you want to say to yourself go ahead and say it. If you want to tell yourself that I got cancer for a reason, that you’re praying for me, that my hair doesn’t matter, that you know I’m going to be just fine, that this probably happened to me because I used anti-perspirant, that you hope I start taking cannabis oil right away, go ahead and say it to yourself. But don’t say it to me if I’m telling you that it doesn’t help me, certainly don’t say it to me if I’m telling you it hurts me. 

Please remember, even though I’m doing pretty well in spite of all of this, this is still a really big deal. A life changer, scary and horrifying and sad and painful and I could die. Because of how treatable they (Who? They!) say breast cancer is, because of how well I am tolerating chemo, because of how “normal” I seem…everybody assumes that I’m am and am going to be fine, and seems to forget that I’m still facing a life-threatening condition. I have read about women whose diagnoses started out just like mine, and were gone within a couple years. Please remember when you’re talking to me that even though I seem almost like always (and finally look my my twin brother), you’re still talking to somebody who is dealing with a life changing situation, with somebody who has a life threatening illness, and speak accordingly. I may act like I’m just dealing with something as fleeting as the flu, but I’m not and I know it. 

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