The view from over here.

So, here’s the thing: September is Childhood Cancer Awareness month.

We are a cancer family. For the past 14 years, we’ve been a cancer family. We’re very aware. People around us are very aware. Our experience is a reminder that they are also vulnerable. Nobody likes to think about it, including me and everyone else in our family, especially our very own survivor.

We don’t like being defined by cancer and our experiences with it. On the other hand, we — perhaps, just I — feel that it’s important for the rest of the world to understand what it’s like to be a cancer family. Why? Because most people think that after a few years of survival, you stop worrying about it and stop talking about it so much, and everything is back to hunky-dory. Except that’s not true.

We might be able to put it all away most of the time, but sometimes something will come up in conversation, or you start trying to remember when this, that or the other thing happened, and you find yourself telling time by cancer or saying things like, “So, you know about my son, right?” when you have something to say, but it won’t make sense if they don’t know. When they don’t know, then you need to explain that he is a cancer survivor and yadda yadda yadda. Blah blah blah. The conversation is now side-tracked. I get sick of hearing myself say it. Sometimes I just keep my mouth shut, and then I can pretend we’re just like everybody else.

If you know a cancer family, what you might not realize is that they are still living with this disease all of the time, even though it’s “gone.” It leaves an indelible mark, and you’re never absolutely sure that it’s really gone. You keep a watchful eye on every member of your family, watching to make sure it’s not hiding somewhere, lurking in the dark. Cancer and paranoia are best friends.

The fear creeps around the back hallways of our minds, and about every six months or so, the doctors take us by the hand and force us to actually go in there and look around. I’m grateful to say that not much goes on there these days — just some dusty memories that gaze back at us, remembering when we lived there. Sometimes, something will come up that doesn’t look quite right, and then we have to venture a little further down those hallways and spend some time checking for cracks and making sure that the weak spots are not any weaker. You can’t go in there without waking up the demons that sleep there. They come alive and taunt you into imagining the worst. They dance in front of you, grab at you, try to pull you in. I’ve gotten very good at walking away, but the door won’t close. You can still see the light and hear the noise. You just have to turn around and leave as quickly as you can and forget about it until the next time you’re forced to walk down there again.

So, yeah. It’s Childhood Cancer Awareness month. That one month out of the year when all of us over here impossibly try to tell all of you over there what it’s like and implore you to help us. If you know someone who has had a child with cancer, just remember that while they seem okay — and they mostly are — they don’t have the luxury of just forgetting about it 11 months of the year. Just because their child looks and acts healthy doesn’t mean that they don’t think about it every day in some way. Make a point to know when their child is going for a checkup, and stay open to listening when they need to talk about it. Everybody — no matter what they’re going through — needs to know they aren’t alone.

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7 Responses to The view from over here.

  1. Well said. I am a cancer survivor and so is my husband but our children have been spared. My reaction about myself was a fight response, anger. With my husband I would tell myself he is all right unless I hear differently. We have been lucky. I know I probably would not do well if it was one of my kids. And I usually don’t where a sign either. But when it comes up I end up telling the whole story as well and then worry later that I said too much.

  2. Julie says:

    Thank you for stopping in, Deborah — I would say that I’m glad that we have something in common, but when it comes to this topic, it would be better if we didn’t!

  3. daveb42 says:

    Really resonated with me. I, too, have a child with cancer, although she is 41, so it’s not exactly a “childhood cancer.” We have been stuck in this all of 2014. We now know that she will survive, but, as you say, the specter of further problems always lurks in those dark corners at the back of your mind.

    I am amazed at how much harder this has been than my own cancer was. With my own cancer, I knew that I had to be informed and I had to do what was recommended by my doc. There were things I had to learn and things I had to do. With my daughter, the parenting instinct kicked in. I wanted to go to her, stand between her and the world, and fix everything. But, I couldn’t. There was almost nothing I could do (except be there), and I certainly couldn’t “fix it.” The helplessness has been almost as bad as the fear.

    Thanks for pointing out Childhood Cancer Awareness Month.

    • Julie says:

      Dave —

      I’m so sorry to hear about your daughter. I hope she’s doing well and getting the treatment she needs. I imagine it doesn’t get any easier regardless of the age of your child.

      It’s always good to meet people who understand where you’re coming from, though. I’ll be keeping an eye on your blog!

  4. daveb42 says:

    She is doing well (I think). A bright note is that she is a neuroscientist who writes papers with people from Johns Hopkins U and the Univ. of Maryland Medical Schools, so she has access to all the expertise she could want. The school year has started and she is back at work. Pretty tired though—she also has 2 smallish children.

    • Julie says:

      Wow! Well, she’s probably in the best place she could be, then!

      My daughter is starting to look at colleges, and Johns Hopkins is near the top of her list.

      All the best to your daughter!!

  5. Pingback: Helplessness | Dave.B

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