How we cope

I have always said that unless you have walked the walk, you can't talk the talk. If you haven't had cancer, you have no idea what it is like - you can't shouldn't even pretend to get it. But those of us who have been there know.

So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.

A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she  will probably not be around to raise her child.

So those of  us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.

But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.

My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.

Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.

The backstory

We have all see this video that went viral about six months ago. At the hematology clinic in a Seattle hospital, they rocked it out to Kelly Clarkson's "Stronger". There are all sorts of videos that go viral. But we usually never really know why they were made, who made them, or anything else. They are just a video we share and laugh at or with.

 

But this time I found out the backstory to this one. A hockey playing college student spent six months in chemo and helped make the first video.

I think knowing his story gives even more power to the video. We know the context that he was a patient as well and worked with the children in the hospital with him to make the video. There are some real smiles there. My favorite is the little boy with the missing front teeth.

Telling your story

I know I have blogged about this before. You are the only one who gets to tell your cancer story. It is your body and your life and the one thing you get to choose is to whom you tell your story and when. This is a big red flag for me.

Recently this became clear. One person was ready to make an announcement with the best of intentions about another person and included their cancer story in it. The person who it was about was not happy about this. They had been purposely keeping their cancer story private because they did not want their employer to know. So the story was rewritten with out the cancer story in it.

Another time one of my neighbors who I don't know very well - just because our paths don't cross - saw me outside and came rushing over and starting asked me if I was doing okay or not obviously referring to cancer. One of my other neighbors must have told them. I don't know what was said but obviously they thought I was dying or something.

No one can tell anyone's cancer (or other icky medical diagnosis) story but the person with the ailment gets the privilege of sharing or not. So everyone else just bite your tongue.

Would you share?

Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.

First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.

Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)

When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But  nothing was ever circulated through the office about me. I don't think I would want it.

Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.

Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:

Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.

In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'.  I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.