Thursday, February 21, 2008

cancer etiquette 101

i read an article today in the lobby, while waiting for my weekly check-up with dr. marquez, my radiation oncologist. the subject was one i've been thinking about for a while, how people talk about cancer. more specifically, how people respond when you tell them you have cancer.

there is a book on the subject, written by rosanne kalick, who has survived cancer twice. it's called cancer etiquette and has gotten rave reviews on amongst cancer patients. i've been hesitant to blog about this subject until now. but i'm getting both more bold and more impatient the longer i am in treatment. and what has changed is sadly not the amount of insensitive reaction comments i'm getting.

what has changed is my willingness to expend emotional energy being polite when someone says, "oh, you have breast cancer? that's awful. you know, my (mother, aunt, friend, boss) died of cancer." i just stand there thinking, wow, that is the last thing i need to hear right now. i know it's a knee-jerk reaction, said without thinking and intended to comfort or somehow relate. of course i realize it's not malicious, not meant to be hurtful. yet if i had a dollar for every person that told me about a friend or relative that had cancer..! the painful truth is, no one can really understand what i'm going through, even if they have had cancer themselves. each person's body, treatment plan and experience is so different.

weeks ago i mentioned this breast cancer website in a post. circus of cancer. i don't know if anyone other than my mom went and read through it, but if not, you should. and not even really for me. i'm not the last person you'll know with cancer, of that i am certain. there are very specific suggestions about what to say and do to help. and a great list of what is not helpful, things one might say or do that would unwittingly make the cancer patient feel worse.

i'll be the first to admit that before breast cancer happened in my body, i probably said silly, insensitive things to someone struggling through cancer. i cringe now to think of it, wishing i knew then what i do now.

another site, chemo chicks has an extensive list of short "excuse me?!" reports from actual cancer patients. some will make you giggle, others will have you fuming. it's easy to say, well that person is just a dumbass. just let it go. as we all know from life, comments made by dumbass' and friends alike can hurt. i can tell you from my experience that fielding comments and "letting go" of the ridiculous ones takes emotional energy. energy i don't even want to spend. frankly, it keeps me from going out socially, especially into groups of people i don't know.

i've starting to feel a bit like an educator about the cancer experience. i certainly want to help teach people, in some small way through this blog, how to support anyone they may know with cancer. the best thing is to listen to the person with cancer before blurting anything out. take your cues from them.

so you may be wondering about now, what should i say or do? here's my short list of what i think is helpful:

say something like: i'm sending you good thoughts and/or praying for you. simple well wishes on a regular basis mean so much.

offer something specific: can i bring you a meal tonight? do you need help with your laundry? asking what you can do to help in general is great, but sometimes i don't even know what i need until someone suggests it.

say: i'm here if you need me, here's a list of things i could do for you if you like. it's helpful to know who to turn to for help with specific things.

offer: it's a beautiful afternoon, would you like to take a short walk with me? i need to get more exercise, but don't always have energy for talking, especially about the cancer.

i've been very blessed to have so many people reach out and help, especially after my surgeries. thank-you, everyone! now that i am in the thick of radiation, there are still needs, but i'm not always sure who to ask for what.

i'm doing better than i expected to be at this point, 13 rads done, 20 to go. yet for me to keep working (ie. paying the bills) through this emotionally and physically grueling schedule of radiation, lots of other tasks have fallen off. it's a big job feeding myself well (all organic, enough protein, regular meals), but i am doing it. housecleaning, laundry, maintaining the car, keeping my medical bills straight -all those tasks are either not getting done at all, or only minimally.


venturegirl said...

I continue to be amazed at how you navigate this subject with such perfect grace. I am grateful that you are so generous and willing, even with limited energy, to educate the rest of us out of the dumbass group into the support group that you want around you. Well done! And as always, I am thinking about you daily and sending healing positive energy. Much love.

Tay said...

Thank-you A. You have been a model of support and love. I tossed and turned after writing this, trying to nap, wondering if what I wrote was too harsh. Thanks for seeing the grace in me I can't, that is really a gift to me.

Anonymous said...

I'm the author of "Cancer Etiquette: What to Say, What to Do When Someone You Know or Love Has Cancer."

Thank you for speaking about this important topic. Words can heal; words can hurt.

Ironically, I wrote the book primarily for friends, family, colleagues. I have been wonderfully surprised that patients feel empowered by the book.

You may invite readers of your site to contact me:

Tay said...

Hi Rosanne,

I'm so flattered you commented on my blog. Thank-you! I looked all over Google to see if you had a website to link to. I read about your book in the magazine called, I think, Mammo?

Thanks for your bravery in tackling the topic.

Maryam in Marrakesh said...

Darling Tay,
So sorry that I have been absent but I am back now! Anyway, just getting caught up on your blog. I really appreciate your honesty here. I want to say the right thing but sometimes I do just the opposite. Oh dear. So glad that you are working your way through the radiation treatments. Yay! When will be your last one?

Much love from marrakech,

Tay said...

Welcome back ,Maryam!
We all (myself included) say the wrong things sometimes. It's human nature.

My treatments will be done March 20, as long as I make it to every one before then. If side effects get bad, I can take a 3-day weekend to give the body more time to heal, but that extends the end date.