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Information for Patients and Caregivers
A Nurse's Reflection/Survival Strategies
As a nurse, I have had the pleasure
of working with patients and families who have
received diagnoses that have sent them down
paths they were ill prepared to travel. With
discharge plans in hand, patients and families
would begin their journey. I often wondered
how things turned out for these people and naively
believed that everyone was returning to life
as usual.
My journey into the medical community
as a family member began when my mother was
diagnosed with breast cancer. My father was
diagnosed with prostate cancer within a year
of mother's diagnosis and we were catapulted
into a world of discovery.
When mother was diagnosed with
breast cancer, I felt as if I had stepped off
the edge of the earth. Suddenly lost, I was
unsure of who to ask questions and angry that
"they" (the doctors) had somehow missed finding
the cancer. Through one episode of recurrence,
two bouts of chemotherapy, and one series of
radiation therapy, mother remained the Rock
of Gibraltar.
Father's diagnosis of prostate
cancer was somehow easier to take. A radical
surgery procedure was sufficient to remove the
invading prostatic cancer with no chemotherapy
or radiation therapy needed. This time, questions
were easier to ask of the doctors and mother
would accompany dad to appointments with lists
of questions in hand. I learned much of what
I know about cancer and its effect on families
through these experiences with my parents.
I await the definitive diagnosis
for a nodule discovered in my left breast on
routine mammography. I find myself amazingly
calm and unafraid. This lack of fear does not
stem from the assumption that the nodule will
be benign. Instead, it comes from observing
the responses and strategies used by past patients,
families, and my parents which have been most
useful for me today.
Fortunately, my parents are cancer
survivors. They continue to seek yearly health
care advice from trusted health care providers.
Cancer groups and family members provide systems
of support. The greatest source of strength
for each has been the other, as I watched them
move through difficult times. An ability to
view the world in positive terms and the presence
of spirituality in their processes has allowed
them to remain optimistic. It has been through
observing my parents' responses to cancer that
I learned valuable lessons in living with the
disease.
Strategies I have found useful
include:
- Be in control of your own health care
- Develop support systems that work for you
- Reframe your thinking in positive ways
- Strengthen yourself through spirituality
Be in control of your own health
care
Be in control of your own health
care. Don't be afraid to ask questions. Instead,
ask many questions! Write down questions before
you go into an office or treatment center so
you don't forget what you want to ask. Take
notes about what you are being told, ask how
to spell words that you are unsure of, and ask
for unclear thoughts to be clarified for you.
Request second opinions. Even
if the second opinion gives you the same information
as the first diagnosis, there is nothing wrong
with being cautious. When you contact an office
to request copies of your records or diagnostic
films, ask if the office requires you to fill
out any special forms or to obtain signatures.
Be clear about what you need! Find out from
your second opinion provider what information
they specifically need before you see them.
Relay these needs to your primary provider so
a complete package of records can be prepared
for you.
Insurance constraints may limit
the scope of providers from which you can seek
a second opinion. Clarify this with your insurer
before you find yourself responsible for expensive
medical bills.
Actively search for information
from your local chapter of the American Cancer
Society, the library, your health care provider,
a support group, and various Internet sources.
Develop support systems that
work for you
Develop support systems that
work for you. Whether you attend formal support
groups or rely on the help of family and friends,
develop contacts with people you can count on
when the going gets tough. The support systems
should be with those people you feel comfortable
calling. Support groups with members who have
similar diagnoses can provide a wealth of knowledge.
Network with others in similar situations and
share ideas.
Reframe your thinking in positive
ways
Reframing means the ability
to place a situation in a different, more positive
light. For example, if you require the assistance
of someone to drive you to and from appointments
and you feel this task is burdensome for them,
think of the positives that occur during the
interaction. The time spent with others is an
opportunity to catch up on old times and share
new ideas. Viewing a class as half-full rather
than half-empty is an example of reframing.
Sometimes it is necessary to ask
others for help with chores or personal assistance.
It is not uncommon to think of asking for this
assistance as intruding on someone else's time.
Reframing in this example would be to view this
as an opportunity to slow down, to "smell the
roses," and to take the time to help someone
in need. Caregivers have reported feeling fulfillment
in assisting others. Taking the time to share
and care with someone can be the most positive
experience of a lifetime.
Strengthen yourself through
spirituality
Spirituality is the feeling
of connectedness felt with a higher power. The
knowledge that even in the darkest hour you
are not alone is spirituality. Feeling comfort
in a cool breeze passing over your face is spirituality.
Holding someone in your arms as they take their
last breath is spirituality. Washing the remnants
of a hard spent day from a brow furrowed by
the passage of time is spirituality. Sharing
time or money or food with no expectation of
a gift in return is spirituality. Random acts
of kindness and the "little things" are in essence
random acts of spirituality.
Taking control of your own health
care, developing support systems, framing systems
in positive terms, and spirituality will help
to strengthen even the weakest resolve. Developing
these strategies into a way of life takes time,
work, and commitment. The benefits gained through
utilizing these strategies outweigh the labor
involved and will provide a framework of strength
that will endure the most difficult times.
(Submitted by Susan Hoppough,
MSNc, RN) |
