Spiraling: We could all get hit by a bus and die

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I hate that just because I am so positive about my "life threatening" disease it ends up making other people (mainly acquaintances and strangers) feel comfortable enough to say something stupid.

"Who knows... Any of us could be hit by a bus and die tomorrow…"

There are two reasons this is the lamest thing someone could ever say to a person who living with a life threatening illness (e.g., cancer). 

  1. Bus drivers are trained to be extremely safe. It is true that accidents have happened, and when they happen the story is carried up by every media outlet in a 400-mile radius--or even further if it involves some wild subplot (e.g., bus-on-bus collision). However, if you compare the number of people who die in a bus accident to the number of people who die from cancer each year, you soon realize you have no argument.

  2. If you were to die from a bus accident your death would most likely be instantaneous or within an hour after the accident. If you aren't dead by the time they get you to the hospital there is a high chance that you will live. Or, you could be in a coma and wouldn't know what was going on anyway.

With cancer you are well aware of what is happening to you, or what is going to happen to you. And you have to face it consciously. You make a conscious decision to go though surgery, chemotherapy, radiation or other treatments. You worry for days, weeks, months, and years about follow-up appointments, tests, scans, and any weird-ass symptom that comes into your life.

You will wonder if the reason your tongue is sore is because you suddenly developed an allergic reaction to the chemo pill you've been taking for 20 months. (This part is biographical.)

With cancer your loved ones worry about all these things too, but they love you too much to let you know that they are worried. But you know that they are worried and you feel bad that they feel like they have to keep it from you--as if by them breaking down it would make it harder for you.

But you can't ask them, "Are you worried? You know you can tell me," because this is how they want to cope. And in fact, you have already asked them these questions.

With cancer sometimes you don't feel like hanging out with your in real life friends... you want to surround yourself with "cancer friends" because, like friends you make at work, you are forced into friendship due to a shared foe. These bonds can be strong.

With cancer there are stigmas (pink ribbons, bald heads, scarves) that make people stand out. And for some people (like me) there is nothing obvious to the world that says, "Cancer here! Look at me! I have cancer!"

And for those people like me, we all feel lucky (I know we are lucky). But is also sad because we go through the same emotions as everyone else without the sympathy we sometimes crave.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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Living with cancer is different from living after cancer