Tuesday, December 13, 2011

Preach it, Sister!

There are few things that I admire more than strong and classy women. (I appreciate strong and honest men too...reason number 3121 why I'm in love with Hotel Melanoma.) I came across this article, How to Talk to Someone with Cancer, today while browsing Facebook. What type of cancer does the author have, you wonder? Well, she has stage IV melanoma. She gets it.

Cancer Girl's first Rule: "This is a bad time to be emotionally needy."
         As much as I want to be a good friend to everyone, sometimes my own fears are literally the only things I can handle. I am polite, and I try to offer as much emotional support as I possibly can, but I will admit that I will not be winning Best Friend of the Year anytime soon. I realize that hearing about my cancer is scary to some people, especially those closest to me, but when you shut down and start acting all weird to me, well, it ticks me off. I understand that you're scared, but this is my life in jeopardy, not yours. Please don't ask me to sugarcoat things because you don't like what you are hearing. Cancer Girl shares her experience with needy folks: "That’s why the relative who called me after my initial diagnosis to insist, “Tell me you’re going to get better. I need you to say you’ll get better,” is the person whose calls now go straight to voice mail.I
Cancer Girl's Second Rule: It’s a very bad time to disappear.
     I have been lucky that this has not really happened to me. Like I've mentioned a time (or 10000) I have an amazing support system. However, I do want to share a piece of Cancer Girl's advice. "It doesn’t take big gestures. It takes less than a minute to send an email or a text or pick up the phone or walk over to someone in the supermarket and say, “How are you?” That’s all it takes to let someone know you’re still on her team. And that minute can be the difference between a miserable, scary day and feeling supported and reassured."

Cancer Girl's Third Rule:  Someone else’s dramatic life event is not your opportunity for closure.
        OH, this is a good one. I have heard from a lot of people since all of this started, the crappiest of crappy ex-boyfriends, and the girls who slept with said crappy boyfriend. Some of those people were sincere. Others probably heard the news through the grapevine and thought they better apologize and gain my forgiveness before I croaked. I never felt like it was appropriate to hear the apologies for how they treated me when I was healthy now that I am (was--since I am NED...??) sick. There is a time and a place for everything. Some of those people came to me because they were actually apologetic. Others, I do believe, just wanted to feel better about themselves. It wasn't the time or the place.

Cancer Girl's Fourth Rule: Remember it’s a fine line between curiosity and finger-pointing.
        Yes, I used the tanning bed. Sure, I got sunburns growing up. Yes, I should have known better. In my situation, my melanoma was (probably) brought on because of my mistakes so maybe I do deserve to blame myself. However, as Cancer Girl says, " Cancer happens to Marlboro-devouring rock stars and it happens to little babies. So keep anything that sounds like blame to yourself." I blame myself enough at 4 am when you're sleeping soundly.

Cancer Girl's Fifth Rule: "Similarly, don't tell them how to fix this."
      I appreciate all advice. Really, I do. I have learned more about melanoma and how I want to fight my fight because of the advice of others. However, especially in the beginning or when things get really scary, I just want someone to listen to what I want to do instead of telling me how I should do it. I do not like it when people get too pushy with me. Cancer Girl explains a great way to approach this subject: "If you’ve read of a promising trial or know the best specialist in the field, you can ask if they’d like the info. But don’t tell them that they have to move to the country or go macrobiotic, Helpy Helperton."

Cancer Girl's Sixth Rule: Don’t be hasty with the best-case scenarios.
       I try to be a very upbeat and positive person 95% of the time. Having said that, constantly hearing "You are going to be fine!" piss me off to the 10th degree. Of course I want to believe I am going to be A-OK. I want to be the 90 year old woman flirting with my hot doctor. However, I know the seriousness of this disease. I am the one the doctor is speaking about at my appointments. Please don't push "Everything is going to be OK" down my throat too often. Sometimes it forces me to feel like I cannot admit my true fears. 

     Currently I have No Evidence of Disease. What does that mean? Does it mean that I am cancer free now? Does it mean that I can completely start living my life like this was all a bad dream? Am I now a survivor? I am going to let Cancer Girl explain this one: "Even if things are going well, let it go at its own pace. I can’t count the number of times people have called me a “survivor” or said things like, “So, are you cured?” This happens a lot to those of us in the club. It makes us feel a little rushed here. Like you’re so eager to wrap this thing up and move on already." Be patient with us.

Remember, because I caught it so late, my Melanoma is not curable. However, I have, as they call it, No Evidence of Disease at this time.

Cancer Girl's Seventh Rule: On the other hand, don’t be a downer.
       I know, I know. It's hard to find the middle ground.  Please try. (We cancer patients are demanding, huh?)

Cancer Girl's Eighth Rule: Your Aunt Betty’s cancer is not all cancer.
      Every cancer is different. Just because I have my hair and look like the normal me, do not assume that my battle is any less difficult than your Aunt Betty's battle. If you are truly curious and want to know the history, do some research. Cancer is a weird and tricky thing. I doubt any two stories are the same.

Cancer Girl's Ninth Rule: Be useful.
         I will let Cancer Girl explain this one since I have been lucky in this category: "This does not mean calling up and saying, “I wish I could do something,” or worse, promising, “I’m going to baby-sit the kids or make you dinner” and then never doing it. This is not your big chance to feel pleased with yourself and your good, empty intentions."

Cancer Girl's Tenth Rule: And this is the most crucial – be guided by the person’s cues.
     If you ask me how my treatment is going and I quickly change the subject, please do not force me to talk about it. Sometimes I enjoy sharing my story with someone else because it allows me time to vent and educate. Other times I want to be a normal 24 year old girl, at the bar, with her friends.

Listen to Cancer Girl on this one, "Respect their limits — it’s their cancer party, and they get to call the cancer shots. You don’t have to cure anybody. You don’t have to cheerlead. You don’t have to do very much at all. Just be a friend. Just stick around. Just let them know they are not forgotten even if they’re not around as much lately. They are not scary because they look different. And that if they can handle this, you love them enough to handle this too."

Thank you, Mary Elizabeth Williams, for your brave and honest article.

I know you all will appreciate it too.


Becca said...

I hate #5, especially when people tell me to go on crazy diets. And #6 is my mom all over the place. I love her, and I know she wants me to think positive, but that's EXACTLY how I felt, like she was rushing me and just wanted the whole thing over. My sister too. I couldn't articulate why it upset me, but now I'm thinking of sending this rule to them both.

Anonymous said...

I love this! I just stumbled on your blog while searching for melanoma scar pictures (I had a wide excision of melanoma in April that keeps changing colors in new and unappealing ways). While my melanoma is gone, hopefully never to return, I do have another disease that has permanently changed my life so I can totally relate to this post, as well as many of your other posts. While I of course wish no one had to go through these medical struggles, it is always so therapeutic for me to find others who understand what it's like to live in that weird medical world that only us patients have experienced. So thank you for sharing! Your honesty is refreshing and inspiring!