Elephants and Tea - September 2019 - 10

Survivorship

A CAREGIVER'S POINT OF VIEW
Hello [insert your name here],

You are
not a label
that reads
"survivor"

A LETTER TO A TEEN OR YOUNG
ADULT IN CANCER TREATMENT OR
POST TREATMENT FROM A MOM.

➥ M A RY BE T H C OL L I NS , AU T HOR OF T H E
BL O G SU RV I VOR SH I P M AT T E R S P OS T E D ON
W W W.C AC 2 .ORG , IS A PA R E N T A DVO C AT E W I T H A
S ON W HO WA S DI AGNOSE D W I T H N EU ROBL A S TOM A
I N 19 9 9, A N D J UG GL E S A N U M BE R OF C H RON IC SI DE
E F F E C T S F ROM T R E AT M E N T. FOR 2 0 Y E A R Y E A R S
SH E H A S A DVO C AT E D FOR C H I L DHO OD C A NC E R
IS SU E S , FO C USE D MOR E R E C E N T LY ON IS SU E S
R E L AT E D TO SU RV I VOR SH I P.

10

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

I will try to avoid such labels as survivor,
warrior, fighter, etc that are commonly used
by parents/advocates/friends/the media. You
are you, a person, first and foremost.
As I recently read in an article by Hannah
D, who had Burkitt lymphoma when she
was 8 years old: We aren't "cancer people."
Cancer isn't who you are; today's labels are
a misnomer. Instead of being uplifting they
can rob you of your identity, when the cancer
already robs you of so much. Cancer is simply biology, and something that hopefully is
responding strongly to whatever treatment
has been put in place.
In today's world - a world that loves labels, soundbites and memes - so many people like to provide catchy sayings, catch-all
phrases, and inspirational mantra to make
themselves feel better. They pass it around
much like a joint at a party, everyone feeling
just a little bit better without much thought
to impact. A simple like, post or share on
social media makes people feel like they are
supportive. Sometimes it works, and if today
is one of those days for you then I hope you
stumble upon something that makes you
smile, brightens your day, or makes you feel
stronger or inspired.
But so often, especially on days that you
don't feel much like a "survivor" or a "warrior," these messages can feel like a ball
of iron chained to a leg, something to be
dragged around. It can often diminish the
fragile strength you cling to in order to get
through the day, feeling much less than what
is expected. I wish it wasn't that way for you.
As a parent, I have watched that happen
to many treated for cancer or struggling
with significant side effects post-treatment.
I have heard my son's comments over the
years, and watched him struggle with such
labels, expectations, and the portrayal by the
community and the media. And in the end,
I think he expresses what so many feel with
a simple: "Mom, I wish it all would stop. I
just want to be Josh." Well, in his case, maybe
also the bad-ass musician.
When going for treatment, annual evaluations, or medical specialist appointments
for long term side effects, it's hard to ignore
the overwhelming references to patients as
superheroes if you are treated at a clinic/facility where they also treat younger children.
There are Cape Days, warrior inspirations
http://www.elephantsandtea.com
Elephants and Tea - September 2019

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