Elephants and Tea - March 2021 - 52

Conversation

LETTER FROM THE CEO
WE KNOW THAT:
*	 Health problems are more common in AYA
Cancer Survivors (AYACS) than their peers.
*	 AYACS and their late effect health problems
have not been studied enough.
*	 Professionals need to be educated about AYACS issues.
*	 There is a lack of coordination between
health care providers which results in poor
communication and frustration on the part
of the patients and families.
*	 There is a need to increase the role of AYA
Cancer Advocates in " bridging the medical
community with the patients and their families (Dahlke et al. 2017). "

Wait, What Did You Say to Me?
I HAVE BEEN DEALING WITH CANCER
LONGER THAN YOU HAVE BEEN A DOCTOR
Have you ever thought this? Have you ever said this? Well, my son Steven did - a
couple of weeks ago.
He was admitted to the hospital for severe physical pain. The source of the
pain was and is unknown. But for some reason, most of the medical professionals
that visited him had opinions on the source of his problem, and, responded in a
manner that appeared condescending and authoritative. Hence his straightforward response when a one of them commented on the source of his pain. Note
that Steven is 30 years old, a four-time cancer survivor, and was first diagnosed
at the age of 15 years old.
" No offence doc, I have been dealing with cancer longer than you have been
a doctor. "
Hmm...imagine my feelings as I heard my son say those words.
My experience as a parent and caregiver during his weeklong hospital stay
only reinforced what we AYA Cancer Advocates already know: There is a lack
of knowledge about AYA Cancer survivorship, it's late effects and the impact on
patients. There is a lack of AYA Cancer Survivorship Support programs available
to patients and families.

SO, WHAT DOES THIS MEAN FOR
THE HERE AND NOW?
*	 Consider empowering yourself. Get copies
of your medical records. Keep an e-list of
surgeries and treatments so you don't have
to repeat yourself several times while in the
hospital.
*	 Find out about possible post treatment effects.
Know that your post treatment effects may not
be commonly known, so talk to your doctor.
If you're not satisfied, talk to someone who
will listen to you.
*	 Do you have a AYA Cancer Patient Navigator?
Maybe they can help with coordinating your
medical needs, services or answer questions.
*	 Perhaps there is a Palliative Care team that
can help improve your quality of life. Know
that Palliative Care is not just for end-of-life
care - but for QUALITY OF LIFE (to make
you feel better).
*	 Talk to AYA Cancer advocates as they may
have a resource to recommend.
*	 Participate in a support group (if that is your
thing) as the members may know someone
or something that could help you.
During this time of great isolation, AYA
Cancer Survivors are in greater danger of experiencing emotional and physical stress. In
addition, social isolation could cause one to avoid
reaching out for help. So please - be empowered.
Get help. You deserve it. l

A NGI E GI A L LOU R A K IS, PH.D., CO-FOU DER OF E L EPH A N TS A N D T E A A N D PR E SI DE N T OF T H E BOA R D OF
DIR EC TOR S FOR T H E T H E ST EV E N G. C A NCER FOU N DAT ION, IS A FOR M ER R EH A BI L ITAT ION COU NSE LOR ,
COL L EGE PROFE SSOR , R E SE A RCH ER , T U R N E D C A NCER A DVOC AT E A N D MOT H ER TO A FOU R-T I M E
C A NCER SU RV I VOR . OV ER T H E PA ST E L EV E N Y E A R S SH E H A S SOUGH T TO L E A R N A BOU T T H E BE ST WAYS
TO SU RV I V E C A NCER T R E ATM E N T. A S A R E SU LT OF T H IS R E SE A RCH SH E H A S BECOM E T R A I N E D I N
IR E ST YOGA N I DR A M E DI AT ION, I N T EGR AT I V E N U T R IT ION H E A LT H COACH, I N T EGR AT I V E ONCOLOGY
NAV IGATOR A N D YOGA4 C A NCER T E ACH ER .

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ELEPHANTSANDTEA.COM
MARCH 2021

CITATION: DALKE ET AL. ADOLESCENT AND YOUNG ADULT CANCER SURVIVORSHIP EDUCATIONAL
PROGRAMMING: A QUALITATIVE EVALUATION. JMIR PUBLICATIONS. VOL 3, NO 1 (2017): JANUARY - JUNE.
http://www.ELEPHANTSANDTEA.COM
Elephants and Tea - March 2021

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