Monday, July 7, 2008

Cancer Etiquette

CNN.com has a front-page article today about what they term "cancer etiquette": how to talk to a cancer patient...and what NOT to say.
http://www.cnn.com/2008/HEALTH/conditions/07/07/hm.cancer.etiquette/index.html

There are a lot of other sites out there that also collect silly things that people reportedly have said to cancer patients. My favorite so far is this story, from Chemo Chicks:

I was having some very difficult reactions to my most recent chemo treatment. My husband insisted on taking me in to see my oncologist. On the way a motorcycle police officer pulled us over. At this point I was white as a sheet, shaking, bald and obviously in dire straits. As I reached for the auto registration, the officer leaned into the car, looked me over and said "My dog had cancer. I had to take him to the hospital for treatments and I spent over eight thousand dollars on him. Too bad, he died anyway." As if that wasn't enough, he capped it off with, "Did you know that when a dog has chemo it doesn't lose its hair?"

I've heard my share of silly and awkward comments. I have to say the most uncomfortable question is "How are you feeling today?" I know people mean well, but how do I respond? "Well, I could only sleep for two hours last night, it took me an hour to use the toilet this morning, I feel like I'm about to hurl, my vision's blurry, and my head is exploding in pain. But other than that, I'm doing great. Oh, wait, don't let me forget my gracious smile." Also, referencing other family members, friends, or co-workers who have had cancer is a nice stab at empathy, but not when those stories almost inevitably end in "and then after a valiant battle, he/she died". And it may seem strange, but don't focus your conversation on "chance of survival" or "a very curable disease". Because now my life becomes one of eternal vigilance against the threat of recurrence; and the looming threat of secondary cancers some years down the line resulting from the radiation and the chemo drugs I took in this round.

So what is a well-meaning person supposed to say? Far be it from me to dictate; each person's cancer experience is so unique. But from my limited experience, I'd say to talk about the person and not the disease. Even when I'm busy with other things, the treatment, the side effects, the limitations still percolate in the back of my mind. I really don't need to put them on high heat. I like to talk about my projects at work (although the frequent comment, "So, you must be on a leave of absence" for some reason infuriates me - probably because it implies a life of lounging and leisure, whereas au contraire, I've been putting in three full days and around 30 hours a week at work throughout, managing an understaffed and overworked department and preparing for multiple high-profile events scheduled to occur sometime between my chemo and radiation treatments in just a few weeks...) or my post-radiation plans. Books I've read recently, music, politics, religion, economics - these are all fair game...I'm still me, and any conversation ignoring the elephant in the corner I'm all for.

"Hang in there", books, cards, notes, posts, emails, etc., these are all great. Sometimes it can be a very lonely and isolating existence, going through chemo and wrestling symptoms and lying around trying to recover, staring at the ceiling and unable to sleep, and it's great to know I'm still a person, still part of a larger community, not just in medical limbo. And with a lapse in modesty, I must say that the all-time coolest comments I've gotten yet have been those complimenting my new appearance. Hidden behind Oakleys, bandanna or bald, more than one person has given me the "fierce" or "bad-ass" thumbs-up of approval...even strangers who don't know I'm sick.

Now that I can go for.

6 comments:

Marc said...

That was a really helpful post, Heather. Thanks! I think this issue is a struggle for people on both sides of the fence. None of us like to be reminded of our mortality, I think.

Hang in there! Oh, and keep looking like a bad-ass! :-)

Jim Allen said...

After being diagnosed with lung cancer about a year ago, the strangest question I always seem to get is, "Were you a smoker?" Well...no...I wasn't; but, if I was does that mean this is my fault? For me, the best approach is to just talk with me the way you did before. And...if I do start babbling about how I feel, try to just listen and talk with me like you would anyone else going through a difficulty in life.

elmhurst said...

Be careful about telling your cancer patient friend about the cancer experiences of other friends/relatives. In an attempt to be helpful, you could be very off the mark. During my treatment for breast cancer, a friend of mine kept telling me about her Aunt's experiences with breast cancer and I knew this Aunt had died of breast cancer. For example, when I was shopping for a wig, this friend told me how her Aunt chose a wig. Well, it wasn't pleasant being continually compared to this Aunt, knowing what the ultimate outcome was for her.

Debbie said...

Thanks, I was looking for more discussion on this issue, the article was so brief. What do you think about more positive examples: will giving a cancer patient examples of people who are doing great, not just surviving but thriving, be a good source of encouragement or just put more pressure on him/her? (Disclaimer: I work for a site, LivingConversations.com that hosts breast cancer survivors' stories).

Veritas said...

Honestly, from my limited experience, I'd say to refrain from any sorts of comparisons to other folks who had/have cancer. Even if they did really well - because then it puts pressure on you that if your outcome isn't as good, maybe the cancer recurs or you're having a really hard time getting through treatment - well then you're not living up to the expectation of "person X" who came through it with flying colors.

For me personally...I'm pretty happy when people just ignore the whole cancer thing entirely. Just talk to me as though I weren't sick. "Hang in there" is always good...or if you really want to talk about the cancer, then feel free to ask me specific questions about what the treatment consists of or what it does to my body or what drugs I have to take or the nurses' personalities or whatever - factual stuff where we can actually have a conversation. I know you're curious...so ask! Maybe it seems awkward, but it's WAY less awkward than some of the other silly things that end up getting said otherwise.

Katy said...

I love these postings!

17 years ago, I was diagnosed with breast cancer. Along with the usual...people telling me details of EVERYBODY they knew who had suffered died of every kind of cancer, I was told to 'STAY POSITIVE". As I got sicker and sicker from high dose chemo, I became more and more worried that NOT staying positive would cause my demise.

Realistically, how can one stay positive when they can't even get out of bed to get a drink of water? Or even if they feel like they're being poisoned?

The person that really helped was a man, whom I later found out did inspirational talks. He kept telling me how good and how strong I looked. He said the first thing that goes when you're diagnosed with cancer is your brain. You start thinking, "I'm gonna die! I'm gonna die!" "Not true," he told me, "Fewer people than you think die of cancer, and you're going to be fine."

My Oncologist told me that the most difficult part of her job is convincing people that they're NOT going to die of cancer because movies and other media touts cancer as the KILLER.

Be safe and you'll do it!