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Posted on Tue, Nov 9, 2010 : 8 a.m.

The Roller Coaster Chronicles: An open letter to family and friends

By Betsy de Parry

Readers: The events in these installments, the condensed version of my book, occurred in 2002. To catch up from the beginning, these chronicles start here.

Dear Family and Friends,

You ask how I feel, and most of the time I say fine. Indeed, having cancer and going through treatment has made me FINE - feeling insecure, nervous and emotional - so it's no wonder that you may not recognize me as the person you know or love. To tell you the truth, some days I don't recognize me, either, and I'm not sure I'd know what to say to me if I were you.

All I can tell you is that some days I want to talk about my illness. Other days, I don't. Most days, I don't know what I want. How, then, could you? Yet most of you are trying so hard to make me feel better, and I appreciate that. I also wish that I could make it easier for you. Maybe this little insight will help.

Rest assured that there are no "right" words for every cancer patient. Our illnesses, situations and personalities are unique, but I'm pretty sure that our collective sensitivity is heightened, and there are definitely some things that should never be said. For instance:

Please don't tell me that if I have to have cancer, this is a good one to get. Let's not sugar coat this. No cancer is good. And please don't give me statistics. I am not a number.

Please don't tell me that you know what I'm going through. How could you? Instead, let me know that you can't walk in my shoes but that you will always walk beside me.

Please don't ask me if there's anything you can do. I probably won't tell you. I may not even know what I need. Instead, make me an offer I can't refuse. And if you ask open-ended questions, it's likely you'll succeed in really helping me carry this weight. Example: "I'm coming over to clean your toilets (or do your laundry or cut your grass or bring a meal, etc.). Would Tuesday or Thursday be better?" But please don't offer anything unless you mean it and plan to follow through.

Please don't tell me how "lucky" I am to have cancer in a day and age when so many advances have been made. Would you feel "lucky" to have cancer?

Please don't tell me not to worry or that I'll be fine or that I can beat this. Try having cancer and not worrying. And how do you know I'll be fine or that I'll beat it? Instead, tell me that you hope I hear good news at my next appointment.

Please don't tell me that I just have to think positive. Sometimes I need to cry. You'd let me bawl if my cat died. Why is cancer different?

Please don't tell me that any one of us could get hit by a bus tomorrow. Cancer happens in epic proportions. More than a million and half Americans will be diagnosed this year, and that's far more perilous than crossing the street.

Please don't tell me how brave I am. If I'd volunteered to have cancer for you, that might have been brave. Frankly, I'd rather be sucking my thumb.

Please don't tell me how great I look. Would you think you look great with no hair, no eyebrows, no eyelashes? And for goodness sakes, don't ask me how it feels to be bald. How would you feel? Instead, trying telling me, "I love you with or without hair." But only if you mean it.

Please don't tell me about your Aunt Sally or Uncle Charlie who had this or that kind of cancer. They have nothing to do with me. Instead, you might offer to help me find accurate information, from reliable sources, about my kind of cancer.

Sometimes, the best words are, "I'm not sure what to say, but I love you no matter what." And sometimes no words are necessary when a simple hug will do. Most of you already know that. You aren't the ones who sent one card and then disappeared, as if mortality is contagious and coming into contact with me makes you susceptible.

You are the ones who've joined me for the long haul, sometimes putting your own lives on hold - not because you have to, but because you want to. I love you for that, especially because I know that loving or befriending a cancer patient means, at times, that you feel sad, frightened, angry, lonely and helpless.

But helpless you're not. Each one of you is a connection to my life before cancer, and your love and friendship gives me hope for life afterward. You give me reason and strength to carry on when I feel like giving up. No one can do this for me but you, and I have never needed or appreciated your love and friendship more.

Next Friday, Nov. 12 : Chemo fails again

Betsy de Parry is the author of The Roller Coaster Chronicles and host of a series of webcasts about cancer. Find her on Facebook or Twitter or email her.


Betsy de Parry

Tue, Nov 9, 2010 : 10:50 a.m.

Sarah, Don't feel badly. Nobody could possibly know what to say. We all hear things we wish we didn't, but unless they're really mean-spirited (and few are), we know that people mostly don't know what to say any more than we did before our diagnoses and that they are just trying to help. On the flip side, we patients have been known to say some pretty silly things, too, so it's a two way street.

Sarah Rigg

Tue, Nov 9, 2010 : 9:08 a.m.

I wish I'd read this before a friend of mine was diagnosed with cancer. I think I was *mostly* pretty good about avoiding many of these pitfalls, but I did say some things that were a little stupid and unhelpful in retrospect.