MY LIFE Matters - Advocacy in Action - 20

Use Your Voice THE IMPORTANCE OF ACTION
There are crucial conversations to be had,
clinical issues to address, consultations
and schedules to be coordinated, financial
assessments to be made, insurance and
legal issues to tackle, transportation arrangements,
resources to be called in, and
adjustments to be made to work/school/
family schedules, etc. Of course, this list
inevitably lengthens, is more expansive,
and continues to change throughout the
course of treatment. By default, the willing
caregiver becomes an advocate on
many levels.
So . . . let's talk about moving into action
and advocacy!
I reached out to some of the patients
and caregivers that I've recently assisted
and asked them what were the most
helpful recommendations, resources, or
actions they deployed in advocating for
themselves. Thanks to each of them for
kindly obliging me in the compilation
of what one referred to as " pearls. " I
also looked at my own personal history
ACTIONABLE TIPS FOR PATIENTS AND CAREGIVERS:
CONTROL THE NARRATIVE ABOUT YOUR
HEALTH SITUATION:
There is often an outpouring of love and a desire
for people to help when one receives a cancer
diagnosis-they just may not know what to say
or exactly what to offer that may be beneficial.
Additionally, the number of people reaching out to you via
text/phone/visiting and asking questions can add to the stress
of a new cancer diagnosis or change in staging.
* Record a video message or create an email group for family
and friends that explains were you or the patient may be in
the cancer journey. It's an opportunity to proactively control
the narrative, to keep loved ones informed, and respectfully
make specific requests (i.e., privacy, time to process, or
ask for the help you need) without having to field questions
on-the-spot.
* Consider hosting a conference call or video conference call
for treatment updates so that everyone can hear the same
information at the same time. Physicians/providers can also
help arrange and participate in these types of meetings to
share pertinent information-don't be afraid to ask!
* Consider creating a closed or open web-based group page to
keep people abreast of where you are and what your need.
Facebook or CaringBridge immediately come to mind. If
technology isn't your forte, designate or solicit assistance
from someone to help you create what you'd love. This can
be part of your emotional healing and a source of encouragement.
It also allows people to be involved from a distance
if that is what they need.
SEEK HELP FROM YOUR CHOSEN " VILLAGE " :
Decide who you and your caregiver want to be a
part of your trusted circle. Create a list of things
that may be necessary to be done at the primary
residence or in relation to treatment where assistance
might be needed. Asking for help with every
day, practical tasks might afford people an opportunity to serve in
ways that are easy to commit to, are time-limited, meaningful, and
offer respite to patients and caregivers. These can be managed with
20
MY LIFE MATTERS
ADVOCACY IN ACTION | FALL 2023
a simple " sign-up sheet " or electronic calendar/Google document.
Examples include:
* Putting trash/recycle bins out on designated days.
* Coordinating weekly meals.
* Assisting with transportation to appointments.
* Setting up online apps for food, grocery, or medication
delivery services.
* Asking for specific help with dependent children or elderly
parents (homework, attending events/activities, medication
management).
* Asking your spiritual or faith community to include you
in corporate prayer, support groups, or activities that align
with your culture and values.
* Assisting with pet care.
* Getting assistance from trusted friends or family members
with activities of daily living such as bathing/grooming/
cleaning or maintenance in the home.
COMPILE A LIST OF FAVORITE THINGS OR
THINGS THAT ARE NEEDED . . .
Allow people to honor you in ways that are
meaningful and bring joy. Include favorite
foods (note any allergies/aversions), magazines,
restaurants, gift cards, entertainment venues,
hobbies, grocery stores, places to shop, flowers/candles, or salons.
If travel to treatment is necessary, note the places you prefer to
stay that are close to your care facility. Many people may offer
to donate hotel points, airline miles/vouchers, transportation/
rideshare services, or parking passes/restaurant gift cards specifically
for the hospitals/clinics where a patient is treated. In larger
facilities, a social worker may be able to help garner assistance
with some of these logistic needs. Unable to keep up with her
" mailbox full of magazines, " one of the most welcome gifts was a
subscription to Apple News+, which gives access to hundreds of
magazines and local, national, and international newspapers in
one subscription whether the person is online or off. The patient
was able to mentally " check out " and immerse in her favorite
magazines on her device while in treatment-she shared her
subscription with her caregiver at no cost.
as a caregiver and assessed what proved
most helpful for me and my family.
There are no rules, rights, or wrongs,
as one assumes the position of caregiver.
It is the realization of my purpose
and a blessing to offer something to
impact patients and their families in
their cancer journey. My deepest desire
is that something here will pierce one's
heart, move them into action (nothing
is too small), and create new advocates
for oncology patients and survivors.
Narrative by WEBTECHOPS LLP from Noun Project; help by Smalllike from Noun Project; financial tracking by Happy Girl from Noun Project

MY LIFE Matters - Advocacy in Action

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