I've been meaning to write this post for a while. And I'll start by saying that this is NOT meant to be an attack on anyone who's ever said any of these things to me. I make cancer jokes all the time, and I definitely don't consider myself to be sensitive about it, but every now and then, someone says something that really bothers me. I can't blame them because I don't make it particularly clear where the line is, so I guess that's why I doing this post. And chances are, if these things bother ME, they'll definitely bother other people. So consider this a PSA.
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1. Relapsing
SO many people have said to me, "If you ever get cancer again..." Just so you all know, I've been in remission for 3 1/2 years, and I still have to get blood tests every few months to make sure everything's okay. Getting cancer again is a very real thing, and if you relapse with AML, the prognosis is NOT good. So really, by implying that I could get cancer again, you're putting the idea in my head that it could still kill me. I don't like that.
2. Children dying of cancer
I'm not saying that anyone thinks this is funny, but sometimes people talk about it really nonchalantly. I was treated as a pediatric patient, so I spent that year of my life surrounded by extremely sick kids. My dad was once talking to another parent while I was getting a checkup, and she pointed out her 2-year-old daughter dancing around in a tutu. He smiled and pointed to me across the room and said that I was 19. The mother said to him, "Wow...I wish I would see my daughter live to be that old."
Being around all these kids is pretty much the reason for my constant "how/why am I alive?" crisis. I outlived my 11-year-old roommate. I don't ever want to hear about little kids dying of cancer. Honestly, I can't even remember the context in which something about this was said to me, but I remember feeling sick and thinking that I wanted to smack the person who brought it up. Don't be that person.
3. My inability to remember things
My last post was about how I have some annoying, lingering side effects of my treatment, one of them being "chemo brain." In a nutshell, I used to have a photographic memory, and now I forget everyone's names, I fish for words and don't speak as fluently, and I have to work harder than ever to keep my grades up. Don't EVER say to me, "Lolz are you sure, or is it the chemo brain talking?" or, "How would you know? You can barely remember anything." I may joke about it, but this problem really bothers me, and I'm extremely self-conscious about it. This is definitely one of those "it's only funny when I say it" kinds of things.
4. What I looked like while I was sick
I looked horrible. Most people going through chemo do. I lost 20 pounds, I had no hair, I had no eyebrows...I was a mess. But there are two important things to remember here. First, this WAS NOT MY FAULT. If you were not physically present when I was getting my treatment, I don't think you can actually conceptualize just how much chemo I had pumped into me. Given the circumstances, the doctors said I actually looked great. I was administered gallons of poison for seven months, and all that happened was I lost my hair and some weight. So yeah, YOU try looking good in that situation.
The other important point is that my physical appearance was the LAST of my concerns while I was sick. Yes, getting my head shaved sucked, but I got over that in about 2 hours because I was more worried about not having a functioning immune system or my collapsing lung. Don't FREAKING bring up how I looked "so sickly" or how it was "so obvious that something was wrong with me." I was focused on, you know, NOT DYING. The last thing I need is to feel bad about how I looked for that year.
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I know this is coming across as a rant, but it's really not meant to. I want to open people's eyes to things that I or other cancer survivors can find to be extremely insensitive. Everything I've mentioned has been said to me by my close friends and family, so I know it's never intended to upset me or hurt my feelings, but a lot of the time, it inadvertently does. Like I've said before, it's taken me years post-treatment to come to terms with all of my residual feelings, so hopefully after more time passes, these things won't bother me as much. But until then, let's just steer clear of these topics. Thanks friends. =) <3
Gratitude, respect, and hope. These are what I feel reading your blog. Your continued efforts and courage to relate your experience are inspirational and have been invaluable to my family and myself as we strive to cope with a similar illness in my son.
ReplyDeleteThank you for continuing to share what you feel and learn. You write nothing like a rant, and if there has ever been someone entitle to rage about the hand they were dealt, it's a thinking cancer patient.
Yours is not easy to read due to your frankness and openness, but please don't change. As a Cancer Parent, I put little value in attempts to 'soften the blows'. Cancer truths are sinister and brutal regardless of how they are padded. Trying to go easy with this subject serves only to prolong the pain of realization.
When overwhelmed by your writings, I stop, digest, cry, swallow, and then continue. It's not easy but the need to understand what is happening to yourself and to my son, is only quenched by the truth.
Every post here, as well as those in FB, restores my hope that this illness is finished with you and that your body and mind will continue to recover and develop. I've long been too pessimistic for hope to take much hold, but hope is the only thing keeping despair at bay.
You can't get the last few years back and the fury this inspires is more than justified. My guess is that anger is a universal trait to those affected by these terrible realities.
Please for all of us, Rage on!