My Life Matters - Fall 2021 - 12

The Power of One COMMUNITY
support me as best as they can, however, they
have not had a lived cancer experience so they
cannot relate completely to me. While they
can sympathize with me, they cannot empathize
with me. They do not know how it feels
to have chemo brain, neuropathy, or severe
hot flashes. Most importantly, they do not
know the mental and emotional strength it
takes to rebuild your self-esteem after having
a mastectomy without reconstruction. It is so
easy for others to use toxic positive phrases
during tough situation such as, " It could be
helped me process thoughts and ideas that
were on my mind at the time. In some cases,
my supporters were unable to relate and/
or empathize because they had not had the
lived experience, but speaking these thoughts
was therapeutic for me. I was able to release
them in a healthy way. As the conversations
increased, I longed for a community that
understood the current me, all that I had
been through and what I was going through
in the moment.
I created " Thriving IV Life, " an online blog
that I share on Instagram and Facebook to
disclose my raw, real, and uncensored cancer
journey. On this blog I revealed the good,
bad, and disturbing side effects of the cancer
and the multiple treatments. Survivors
messaged me privately to thank me for being
so brave and telling my story. I received messages
about specific topics such as parenting,
neuropathy, lymphedema, and fatigue. I felt
I was a breast cancer resource for those who
were recently diagnosed, despite the fact
that I was barely a year into this journey.
I received so much support from complete
strangers. What meant the most to me was
being able to share space with a community
of individuals who knew exactly what I meant
when I shared my symptoms and did not try
to comfort me with toxic positivity.
My immediate family and close friends
12
MY LIFE MATTERS
FALL 2021
worse, " " Everything happens for a reason, "
" God would not give you more than you can
bear, " and " Everything will work out in the
end, " to name a few. Sometimes it is best to
just share space with a cancer survivor if you
do not know what to do or say. It is better to
acknowledge and validate our feelings. Some
things you can say include: " Describe what
you are feeling, I'm listening. This sucks, I'm
so sorry you're going through this. " , and " I see
you. I'm here for you. " Sometimes, we-cancer
thrivers- are not looking for answers or advice;
we are only looking to be seen, heard,
and validated.
When looking for community who would
truly understand the new me, I searched for
in-person and local support groups. I found
an organization that hosted a class that my
child and I could attend together, but we were
the only people of color and the youngest
participants in our respective groups. We
attended the group for a few months and I
choose to stop attending because other than
having cancer we did not have anything else
in common. It was difficult to build community
in an all-cancer support group, primarily
because our experiences were not the same.
While searching the internet and Instagram
for a breast cancer specific support
group and women of color affected by breast
cancer, I found For the Breast of Us (FTBOU).
I was so shocked to see that I was not
the only young person of color affected by
breast cancer. As I scrolled through their list
of followers, my eyes began to water. We all
are a part of this community that we did not
choose to join; still, I found joy in knowing
that I was not as alone as I initially felt. Despite
meeting these women on the internet,
I felt connected to them- they understood
me and what I was dealing with at the time.
Even through messages, their concern for
my well-being did not get lost in translation.
For the Breast of Us is a necessary resource
because they uplift and amplify the
voices of Women of Color affected by breast
cancer. They are working tirelessly to reduce
systemic health disparities, increase awareness
and participation in clinical trials for
women of color, create digital content with
representation of women of color and fight
for legislative change to improve benefits
and experiences for breast cancer patients
nationally. They also partner with a number
of other organizations who are committed to
supporting cancer thrivers of all stages. The
organization's Founders, Marissa and Jasmine,
who are also survivors, are genuinely
concerned for other women of color affected
by breast cancer.
I followed FTBOU for a year before I applied
to become an ambassador. During the
first year, their posts resonated with me. They
also posted about issues that I did not/had
not faced on my journey yet. I applied to be
a Baddie Ambassador because I want to be
a part of the change that I want to see. As a
Metastatic Breast Cancer Thriver, I want to
help advocate for women/men who will have
to fight this battle. It is important that I share
my story to encourage others to complete a
self-breast exam monthly and to advocate
for mammograms prior to the age of 40. This
organization is doing great work and I am
grateful to work alongside of these women of
color who are here to change the world. This
group of women, who I met on the internet,
are now a part of my community.
Over the last year I have learned so much
about who I am, breast cancer treatments and
what it means to share community, and I am
really grateful to have such an amazing community
of strong people to share affirmations,
tips and strategies with.... I am SO glad you
are here! I started sharing my experience on
Instagram and I quickly realized that there
are lots of other women who felt similarly to
me, and together we have created an amazing
community online! I am so grateful to know
all of my new virtual friends!
Community is defined as a feeling of fellowship
with others, as a result of sharing
common attitudes, interests, and goals.
Throughout my two-year cancer journey I
have had the opportunity to join a number
of amazing communities; in-person and
virtually; near and far. Everyone who has
positively influenced me and who I have
positively impacted is a part of my forever
community. l
My Life Matters - Fall 2021

Table of Contents for the Digital Edition of My Life Matters - Fall 2021
