MY LIFE Matters: TNBC Patient Voices Issue 2022 - 34

ANGEL Advocate COMMUNITY
many medical needs that I was not even
aware of, including ongoing medication,
tests, frequent medical appointments, and
physiotherapy, not to mention managing
the side effects and complications that go
along with these.
I found myself in disbelief that I was
around in the car while they slept at night
for fear of carbon dioxide poisoning. I
would eventually end up living with a
friend. But that housing would abruptly
come to an end as their child suffered from
paranoid schizophrenia and bipolar disorder
and would threaten the safety of my
children and I, so we were homeless once
again. I was already dealing with depression
and anxiety and these life changes
would catapult the two into overdrive. I
found some very valuable resources within
organizations such as Tigerlily Foundation
that would not only meet my needs, but
also gave my voice strength and power.
After active treatment I found that there
were needs that still needed to be met;
however, resources that were available to
me during active treatment were no longer
available. I was not able to go straight
back to work, yet here I was, dropped back
into the regular world with no road map
to follow. For two years I had a standing
date with oncology every single week, now
what? There was no coverage for medica34
MY
LIFE MATTERS
TNBC PATIENT VOICES ISSUE 2022
tions since these are ongoing medications
and I was no longer in active treatment.
Gas vouchers were not available, yet I still
had monthly appointments. Grants that
were available were not available to me, but
I was still in need. I didn't know what to do
with the neuropathy in my hands and feet
that made walking so unbearable. How do
you get the nutrition needed to sustain this
stage in the journey? What do you do when
nausea keeps you in a bathroom at work
and the medication needed makes you
sleepy? How do you fight for yourself when
you overhear the patient in room three is
seeking pain medication? She is not in
active treatment, so what she was after?
After this, I found my voice and I was livid!
I am not seeking pain medication for the
sake of pain meds, I am literally hurting
from head to toe. My head hurts to touch
it and my feet hurt when I walk. My hands
hurt to grip what little I could; I am just
seeking help. For a group of people to come
into my room and tell me I need to calm
down-insert panic attack. There were so
back again at what I thought was ground
zero. How? How can I be back here after
fighting for my life and coming out
on the other side just to be dropped off;
left with no tools on how to navigate life
after treatment. How do you live your
life when you have lingering side effects
from chemotherapy and radiation? You
hear the word thrive, but how do you do
that? In the cancer community we often
hear the words survivor and thriver, and
as empowering as those words are and
as much as I wanted to feel the power of
those words, the ugly side of cancer can
also feel like you are in a constant battle.
You are living in a nightmare and even as
a warrior, you are being beaten down and
the life is being choked out of you. I had
many of these days and what helped me
get through the dark days of treatment,
including the many barriers and side effects
of cancer and cancer treatments, is
the love I have for my family, the dreams
I have in life, and the changes I want to
make in the world so other patients will
not go through what I did. The world of
being an advocate is about sharing the
life and stories of other warriors that have
their own battle wounds, but who still see
the light of day each morning.
Today, I find joy in being part of the
reason others can smile, feel supported,
and cared for-a reason to hope. This is
my purpose! This is the reason for this
particular journey. With the statistics on
TNBC and the percentages of recurrence
of cancer, I don't know how long my
journey will be, but I cherish each day
and share my story in hopes that it will
help others.
To each of my Pink Sisters, my " breasties, "
my fellow ANGEL Advocates, I confidently
say, " YOU CAN DO THIS! " Look
at your battle scars and understand-YOU
are a warrior! Be your OWN advocate. Ask
the tough questions. Remember, the only
" wrong " question is the one you don't ask.
Your life just may depend on the answer
you get. So, don't be afraid to ASK! l
MY LIFE Matters: TNBC Patient Voices Issue 2022

Table of Contents for the Digital Edition of MY LIFE Matters: TNBC Patient Voices Issue 2022
