Elephants and Tea - September 2021 - 34

Advocacy PROFESSIONAL HEALTH ADVOCACY
edge gained through lived experience. We
can shift who makes the rules in healthcare,
by simply reminding folks through our behavior
and voice that patients are informed
and empowered.
Transitioning from active treatment is
such a tender time. How one approaches
their healing, and how a team of supporters
helps them along the way, and who is
included in that team, is of critical importance.
People need practical, generous, and
specific support.
There is opportunity in healing. I imagine
that's hard to read for some. It was hard to
imagine for me, each time, and then it was
true. Healing eventually became beautiful.
As people leave treatment, they begin to build
their new life, cell upon cell.
HERE ARE SOME TIPS FOR
TRANSITIONING FROM ACTIVE
TREATMENT:
1. Gather your medical records. Take account
of what records and imaging you have
and in what form you have it, and get the
important stuff on paper, and maybe in a
personal health data management tool or
digital file that you will continue to have
access to as long as you want. Get any important
imaging on CD and flash drives.
Your medical team may store this stuff
well and securely, but it's always great to
have a binder of your own.
2. Ask your medical team a lot of questions
about your care moving forward. Have an
advocate or support team member with
you, and request they take notes.
▷ Ask for a survivorship/follow-up care
plan on paper. Have your team review
it with you. You can dig deeper and
discuss it.
▷ What should you expect in terms of
interaction with your current team?
▷ When and how often will you get blood
work, other testing, and imaging?
▷ Who will be responsible for your care
moving forward?
▷ Do they have referrals to specialists to
provide you with?
▷ What are the long-term side effects of
cancer and your treatment protocol?
▷ What are the chances for recurrence?
▷ Share your concerns and worries. Ask
about the potential for those things
you are worried about to cause problems
for you.
▷ If you have had a transplant, be sure
you are very familiar with the ways
you need to protect yourself after
treatment, and the follow-up protocol.
▷ If you have a survivorship clinic or if
you'll be returning to where you were
treated for checkups, how often will
you go?
▷ What, if anything, do they provide in
terms of mental health and complementary
health care? Ask for referrals
if they don't provide this support.
▷ Are there support groups local to you?
Are any of them age specific?
▷ Do they have suggestions for rehabilitation
and/or exercise programs
local to you?
▷ What other social, emotional, financial,
or legal support information can
they share with you?
3. Determine how you and your medical and
support team will communicate. How long
will you have access to your online portal
if you are using one? Ask how, specifically,
your concerns will be addressed when they
come up - email? phone? text? office visit?
4. Tell your personal support team how you
want to be supported. Tell them what you
need, or what you think you might need.
Just because treatment stopped doesn't
mean you no longer need support and
some special treatment from them. There
is physical and emotional recovery ahead
and you can share what you know with
them about what survivorship might entail
for you. Use some of the tools available to
you to communicate with your loved ones
and other community members who want
to help.
5. Find the team that will help you rebuild.
Your oncological and/or health care teams
that have been with you through active
treatment may be less active in your care.
You may want to bring in other care team
members who can help you. You may want
to find the mental health support that suits
your personality (talk therapy, expressive
therapy, some mind-body practice that
helps you integrate and regulate your emotions).
You may want to find help managing
pain, specialists specific to the system and
body issues that are needing extra care, an
individual or a community to help you build
strength and energy back into your body,
survivorship groups, an organization or
app that provides mentorship, nutritional
support, some ways to find play or activity,
career support, financial support.
Chances are if you have your hands on Elephants
and Tea, you've experienced, heard, or
read that survivorship can be tricky. But the
more present you are in it, the more curious
you can remain, and the more questions you
ask, the more you'll be able to build resilience.
Practice asking for what you need.
Cancer disrupts everything, and it really
does take a village to support a single human.
You deserve support. If you want help finding
need-specific support, you can begin with
some of the organizations listed in the back
of this magazine. If you want someone to
help you navigate your ongoing health care
and concerns, reach out to an Independent
Health or Patient Advocate.
RACHEL WESTLAKE. BOARD CERTIFIED
PATIENT ADVOCATE. CYCADIANHEALTH.COM.
INFO@CYCADIANHEALTH.COM
ADVOCATE
ADVICE
You can find Health Advocates in directories found on the AdvoConnection, Greater National Advocates and
HealthAdvocateX websites. Many advocates can support you remotely from anywhere in the US, and potentially
come to you if you need them. Consider broadening your search beyond your location.
34
ELEPHANTSANDTEA.COM
SEPTEMBER 2021

https://www.b-present.org/b-there-tool/ https://www.medstack.co/blog/tamvoes-simplifying-personal-health-data-management/ http://www.CYCADIANHEALTH.COM https://www.advoconnection.com/ http://www.gnanow.org/ https://www.healthadvocatex.org/directory-professional/ http://www.ELEPHANTSANDTEA.COM

Elephants and Tea - September 2021

Table of Contents for the Digital Edition of Elephants and Tea - September 2021