When I was diagnosed with leukemia last May, I couldn't imagine what lay ahead for me. The last eight months may have well been eight years. It's been a blur of blood tests and bone marrow biopsies, fevers and infections. Any cancer patient can tell you that the disease turns you into an ersatz medical student, whether you like it or not. But navigating the social dynamics of living with cancer -- communicating with family and friends about my diagnosis, symptoms, fears and hopes -- was a challenge I did not expect.
The oncology world is overdue for an etiquette guide. As a commenter noted on my blog, unless you're Seth Rogen in 50/50, there's no script for what to say to someone with a life-threatening illness. But if you can avoid saying these 10 things, you're off to a good start:
1. Don't ask, "Is there anything I can do?" unless you mean it. If you do, then just do something! When you're sick, asking for help is tiring -- and it can make you feel guilty or pathetic.
2. Don't ignore someone with cancer because you don't know what to say. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often.
3. Avoid questions about mortality. "What are your chances?" and "How long do you have?" are major no-nos.
4. Don't talk about your friend/cousin/uncle who died of the same cancer.
5. Don't use nicknames that refer to the person's disease. They can come off as offensive, even if they're meant as a joke. These are a few names that I've actually been called: fuzz head, baldy, Suleikemia (really?!).
6. Don't say to someone who's just lost all of her hair, "You look like [insert: an alien, avatar, Pinky or The Brain, Gollum]." This is not the time for the Beat-poet game of "first thought, best thought."
7. Don't put undue pressure on a patient to change doctors or therapies. You may mean well (and you may be right), but be aware that how you offer input can be as important as what you're offering. What worked for you may not apply to someone else.
8. Don't just repeat phrases like "everything will be OK" if the patient is feeling scared or upset. Instead, just be a good listener.
9. Don't tell someone, "Wow, that sucks" upon hearing of their illness. Yes, we know it sucks. Reminders are not necessary.
10. If you say or do something awkward, rude or out of line, don't pretend that it never happened. Apologize, and ask for a redo! It's OK to make mistakes. Cancer patients are used to these kinds of blunders. We'll understand. Just don't play the ostrich in the sand.
If you've made any of these "mistakes," welcome to the club. I created this list from my own experience, not to inspire guilt or cast blame, but to unite us all in the realization that to talk about cancer is first to fail -- then, to "fail better" the next time.
Stay tuned for a future post, "10 Things You Can Do for a Friend With Cancer"
For more by Suleika Jaouad, click here.
For more on cancer, click here.
Suleika Jaouad writes a blog about her experience with cancer at Secrets of Cancerhood. You can follow her on Twitter at @suleikajaouad. Email questions and comments to her at secretsofcancerhood@gmail.com and/or make a comment below!
Follow Suleika Jaouad on Twitter: www.twitter.com/suleikajaouad
Cancer diagnosis? Advice for dealing with what comes next ...
What Never Say to Someone with Cancer | Cancer Care and ...
What Not to Say to Someone Who Has Breast Cancer - Forbes
Overall I think people mean well, but we stumble over our tongues in an effort to be comforting and helpful.
Perhaps the #1 thing to keep in mind if you are sick or have suffered a loss is to keep remembering that overall, people do indeed mean well even if it doesn't come out well.
I would like to add to the above list....
Many people would say to me....wow...you lost a lot of weight....good for you....I would respond by saying that my liver was having problems and I was having a lot of side effects from surgery....then most of the time the response was.....Well you don't look sick....at first I would not say anything back and just smile and say thanks....but later....I would reply....do you have a cup of blood in the toilet bowl after every use? Is that looking sick? What does sick look like?....then I realized I was just being bitter because of their ignorance....so...I went back to the thanks...but added....I will remember that when I am having my symptoms control my life....
Someone said that to my mother after she went through 6 months of excruciating chemo treatments (and beat her cancer).
Here's a clue; Being fat is not worse than cancer!! As a matter of fact, that 50 'extra pounds' my mother was carrying on her saved her life! All her doctors agree.
My husband is 69, he's on dialysis for kidney failure for the last two years. Because of dialysis, his resistance has been lowered, so that free-floating cancer cells in his body (which we all have, by the way) reared their ugly heads, and now after an excision, he has to undergo electron radiation until the end of February. So since he's over 60, are the doctors supposed to just pull the plug, say sorry, but the procedures are too expensive. He's a viable, productive human being who is of immense value to all who know him.
How can any death panel decide who is deserving of lifesaving procedures? How have we come to the point that someone, such as you, can decide that patients over 60 should just step aside and not waste medical procedures?
I am over 60. I am physically fit and strong. I have been known to work 6-7 hours in my yard, mowing, blowing, and tree trimming with my chain saw. One day I moved 600 pounds of ceramic tiles from my porch to my garage. Oh, I should mention I carried each 50 box myself. I am easily able to bench press a great deal of weight.
Two years ago as a result of a car accident when I was rear ended, I had to have both my hips replaced. By your reckoning, I would have lived in pain for the rest of my life.
Oh, and I should mention, I am a woman. My brothers (in their 70's) are much stronger than I, and one still works daily repairing/remodeling RV's.
Get a reality check. People are living longer and healthier lives.
My husband’s father lived to 100. His brothers are strong, healthy and still travel. They are in their mid-late 80's.
Whatever age you are I know this; there is more of us than of people of your mentality and we will fight for the right to stay strong, and have healthy and productive lives to the end. You can count on it!
If anything you said was even remotely true about Obamacare, it would be on Fox Spews 24/7.
http://www.therightscoop.com/shock-brain-surgeon-confirms-obamacare-rations-care-has-death-panels/
The thing to do instead, is think of something you'd genuinely *enjoy* doing for them, have it ready, and then ask if it would be alright. For example, maybe you have a large collection of DVD's, and pride yourself on picking out films for friends you think they'd be surprisingly pleased with. Then ask, "Say, I have a couple of movies that I thought you'd love. Would it be OK if I brought them around and said hello?"
It doesn't matter if it's something to pass the time or significantly help with recovery, the key should always be something that is the result of the person being in your thoughts *anyway*, not really any different than they would be if they weren't sick. If the only reason you're thinking of them is because of that, let them know your pulling for them and leave it at that.
Which brings me to, "How are you doing?".
The answer to that is depressing to give, so don't ask unless you want to actually know. Otherwise, go with "How are you holding up?" or "I hope you're doing OK through all this".
Acting only on the care you *actually* have will mean the most.
This is all about making it easier for someone, distracted by their disease and everything that comes with it, to ask for whatever help they'd want and you'd be happy to give.
But keep in mind, these are suggestion of one person - they might not apply to everyone in that situation.
Is there anything people said to you father that you'd like to suggest to others?
The lymph thing was what I was most scared of, oddly, even though there are a lot worse things than wearing a compression sleeve.
Even our Caretakers/spouses have hit on some of these.
nothing to be done except get over it and , get better.
and if you know a survivor , join us on the Cancer walk in march, the more the merrier.