There are ways in which I will never make you as readers understand what it’s like to have cancer if you haven’t. However, part of the reason I write this blog is to try to explain some of the cancer patient “mentality” (if you’ll accept such a generalization) to those of you who haven’t had cancer. To that end, you can hopefully be better friends, partners, spouses, sons, and daughters. There are things I didn’t know before I had cancer that I wish I had understood.
It’s not that I am special. It’s not that I am so smart. It’s that I have been there. Hopefully sooner than you have. And so I am reporting back from the field. To try to help you. Prepare you. Because if there is one thing I know, one thing I know for sure: you will know someone. It might be your friend. Your parent. Your child. Or even yourself. Maybe you already know someone. But one thing is for sure: you will know someone who gets cancer. And you know what? You already know me.
One of the ways your life changes when you have had cancer is that you begin to understand the phrase “It’s never over” in a whole new way.
As soon as you hear the three words, “You have cancer” your life changes. From the time you hear those words everything is different. You now have a history of cancer — even if it’s a cancer that can be removed and you don’t need any other treatment. It is now a history that puts you at risk. Now every medical problem, every medical history you give, every question mark, every medical mystery must be filtered through the lens of a history of cancer.
A woman I know from college was writing a brief note to me by email to thank me for something nice I’d done. The last part said, “Hope you’re feeling on top of the world (or close to it).”
My reaction? First I burst out in laughter.
Ah, the naiveté of the healthy!
On top of the world! Ha!
Then it actually got me riled up.
Angry.
How dare she think it was over.
Then I got angry at myself for lashing out.
I became contrite.
Why should she know better?
How could she know better?
It isn’t fair to expect people to know better.
Only once you know better can you do better.
If she only knew.
What was I going to do?
Write back and explain to her the error in her thinking?
Should I write back and say:
I counted every day, every hour, every minute, every second to be “done.” But when each thing was “done” there was always something else I was counting toward. Always something else looming. I’m never “done.” It’s never “done.” It’s never “over.”
The language we use reveals a lot.
When someone says,
“You must be on top of the world,”
that means:
“You should be”
“You ought to be”
or
“I expect you to be.”
For someone like me, if I don’t feel like that it’s hard.
I get angry. I want to say all of the reasons why that’s not realistic– why that’s wrong. Why that’s precisely what I’m not feeling.
But then, when my anger cools, I take that and turn it inward. And all I feel is disappointment. Disappointment in myself. Maybe I should feel like that. Maybe I really should feel on top of the world. The fact that I don’t means I’m not as far through this thing as I thought. It reminds me I’ve still got a lot of work to do.
Maybe the battle is not really with cancer. Maybe it’s with myself.
But I think the point remains: just surviving cancer isn’t necessarily enough. It’s not enough to make you feel on top of the world.
You can help those who have had cancer by not making the leap that just because they have lived through this round that they have “won”; don’t assume that they will necessarily be ecstatic, “done,” and ready to move on.
Rather than telling people what they “must” feel, we all can be better friends and listeners by asking questions rather than making statements.
Rather than saying “you must feel on top of the world” think of the difference it would have made if my friend had said, “Now that your treatment and surgeries are over, how do you feel?”
An open-ended question is always a safe conversation starter. I’m going to try it more often in my everyday life; I hope you will too. My wish is that it begins some good conversations between you and someone you care about.1
This is the 4th installment of a week-long sharing of some of my favorite blogposts over the past few years.
August 13, 2009 [↩]
Link to Twitter
I understand this and being at the begining of treatment I am still trying to sort out the feelings. Trying to filter incomming statements from others. It is a rollercoaster based on today’s news, today’s symptoms, today’s test results, today’s support. So true, what you touched on that it will never be over. Once treatment is done, comes the genetic testing. More decisions, perhaps more surgery. It is endless.
What you do here, “from the field” is important work Lisa. I don’t know how I could have gotten this far without your intervention. You have paved the way for me, and others like me who got caught by cancer. Knocked down and slammed to the ground by cancer. In order to pave the way, you have made the ultimate personal sacrifice.
This posted reminded me of the many health issues my dad has encountered in the past 11 years. Some life-threatening, some not. But each time there is an open-ended-ness that goes beyond the assumption that once an “all-clear” is given the person’s life must be back to being “on top of the world.” I listen to my dad every day. I ask questions and wait for him to give me his answer. What I’m learned from years of doing this is that, that chapter of his life is never really closed, the story never ends. It informed (and continues to inform) everything he did from those moments on. The most my dad can do is continue to watch his life unfold and steer the controllable elements of his narrative.
You know what? This is perfect. I’ve never had cancer, but it, as you know, has affected me in ways that I’m just now coming to terms with.
Coming from that end — the perspective of being a caretaker. I have had those same reactions to people when they think I should be over it by now. There is no time frame. There are days I’m pissed off by reactions and words, days I’m saddened by reactions and words, and days I’m relived by reactions and words.
Thank you Lisa — honest talk about a difficult subject.