Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Wednesday, April 27, 2011

Illness Etiquette: How to React to Shocking News



The first time someone uttered the words, "You still have hope" in response to my cancer reoccurrence I almost slapped them.

 In Hodgkins, the first round ABVD therapy  cures 75 percent of Hodgers but had failed me.  I was preparing for a routine syngeneic stem cell transplant with no other complications to cure the disease when an RN in the infusion clinic said these words, obviously meant to comfort me.     

Well, it didn't.

The sentence sounded scripted from a manual on how to empathize but not sympathize (something taught in nursing school), and Hodgkin's is 90 percent curable.  

"There is always hope!" I scoffed silently. My mind screamed at the two women hovering over me, obviously uncomfortable and inexperienced in addressing relapses in young patients. 

"There is more than hope! There are treatments, like a BMT or radiation! What the hell do you mean there is always hope!".   

 I didn't say anything. I just nodded and waited patiently for them to leave instead of booting their asses across the floor for being so clueless about addressing complications.      

But their mistake isn't unique. With cancer becoming more prevalent, people living longer and healthier, we are now venturing into society more, encountering acquiantances in social situations. 

Miss manners has never addressed how to handle the news someone you barely know has a life threatening disease with etiquette in five minutes. There is just no precedent on the social savior faire for this situation, and I have even better examples of flubs. 

 Once when J told a co-worker about me being treated in a similar manner as Farrah Fawcette, the oblivious man stated, "you know she's going to die, right?".   

Ok.... And how do you react to the reading between those lines?  

I even had one woman stammer, "oh, congratulations!" After I told her I had cancer and handed her the card for my blog. 

She reacted to my cancer like it was a job to be aspired to, which essentially I was pretending it was, but what is the "right" way to address this news?  

First, there is no one right way. 

Every person is different. They have different personalities, different diagnosis and coping methods. That doesn't mean some cookie cutter responses won't work. 

If you're shocked, pause, take a second and think about what you say. This is good advice for any awkward situation. A stunned, "I'm so sorry" is safe and pushes the conversation back to the patient. 

Then I like honesty. If you have questions, ask, but keep it to a few specific inquiries. Do not barrage the person with questions, especially if you're not close.  This looks like a tacky attempt at getting first hand gossip. It's pretty easy to tell if you're asking out of concern or their own bored curiosity. Don't be that person. It adds to the hurt knowing others are discussing your "problem."

However,  If you're uncomfortable and don't want to talk about it, say so. Be honest.                   

If you have or had a loved one with cancer, say so, but do not launch into a long story about your horrible experience. That is a big no no. 

Try to find the positive. Leave out that uncle pete suffered and died of the same disease. Say he had great doctors in Cleveland. 

Making a joke is an iffy tactic. It could go any way. This response is one that needs to be gauged based on your personnal relationship.      

If you want to offer assistance,  Only offer help if you're truly willing. It helps to be specific about what you'll do too and take the initiative to make contact or get their information. Then call and make the gesture. If they don't call you, you haven't been forgotten, you've been lost in the stress.      

Offers for Well wishing, thoughts and prayers are almost always welcome and a good way to wrap up a conversation. Asking the patient to "Keep me updated" or "in the loop" may cause more stress for them. Instead ask how you can keep tabs on them, maybe they have a close friend assigned to updates, a blog or an email list. 

Finally, understand you're talking about a very sensitive subject and the person's reaction may have nothing to do with you or anything you said.

Once, a couple years into my disease, I ran into a past best friend, who I hadn't seen in years, while getting my retail therapy  after being drugged for a test and getting bad news. We ran up and hugged each other but as soon as she said, "I'm so sorry.." Or "I've heard how horrible it's been.." I burst into heaving sobs and crumpled in her arms.   

Oops, and that's the reaction you may get if the subject is brought up too soon or at the wrong time. 

 I could have just as well exploded anxiously saying, "I can't handle it! I don't want to talk!" Don't take it personnally. It has nothing to do with you.    

Even with this advice, you may still have a foot in your mouth moment, don't beat yourself up. Both sides are in the sensitive conversation together.  We sick know you mean well and meant what was best for us. Words just don't always come easily when emotions run high, but we're probably all ready off, forgetting or not noticing the error in manners, planning our survival.

1 comment:

stonepost said...

Nice post, Hillary, as always! When I was at my sickest my closest friends were kind to me without my permission. They mowed my lawn without asking, watered the flowers, brought me milkshakes and I received gifts of art from all over the world. Sometimes just closeness without words is best.