Teresa Combs, mother of three,
lives in Granbury, TX and is an ovarian cancer survivor. She was 23
years old when first diagnosed with the disease. When questioned
about her experience, she said, “I wish my caregivers had been more
educated. I also wish I had been more educated about ovarian cancer.
There are so many things we know now that weren’t available when I
had cancer.”
Combs is not alone. Ovarian
cancer has been a mystery to many, although since it is the eighth
most likely form of cancer to strike women, it shouldn’t be. It also
has the unfortunate “claim to fame” of being fifth on the list of
most likely to cause female cancer-related deaths.
Ovarian cancer may be difficult
for many people to discuss. Experts say one reason is that
caregivers have a natural protective tendency, feeling that the more
the cancer is discussed the more stress it causes.
Opening
the Lines of Communication:
There’s no doubt that a cancer
diagnosis is difficult and stressful. It is important to keep the
lines of communication open so that the caregiver is aware of what
the patient is thinking and feeling. At the same time, caregivers
need to encourage the patient to discuss feelings when they arise,
while respecting the need for personal space.
Recognizing that negative
emotions will arise can help both the patient and the caregiver. For
example, the patient may need reassurance that it is OK to feel sad
or frustrated. Expression of those emotions is, in fact, healthy and
encourages the patient to continue releasing feelings that can
adversely affect her health if they are otherwise “bottled up.”
Other ways to keep communication
flowing smoothly include
-
Encouraging your
loved one to keep a journal
-
Setting aside time each day or
week for sharing about issues that may have arisen
-
Learning basic relaxation
techniques to keep tension and stress low
-
Seeking out support groups and
additional resources for both patients and caregivers so each
have opportunities for “venting” to individuals who understand
the situation
-
Studying facts and figures about
ovarian cancer and staying abreast of the latest scientific
studies
Most experts agree that keeping
communication open and honest will help reduce stress and avoid
confusion during the various stages of the disease’s diagnosis,
treatment and recovery.
Talking
to Physicians and Other Treatment “Team” Members:
Going back to Combs’ hindsight
of education, caregivers should proactively take steps to be
involved in patient care and the treatment spectrum. Treatment for
ovarian cancer can range from surgical procedures to chemotherapy to
radiation and variations in between. In Combs’ case, “I had surgery
only. I took methotrexate for about three months, but there wasn’t
much ‘actual’ caregiving. I drove myself to appointments to have my
blood tests monitored and followed up with my doctor.”
Learning about the risks of
ovarian cancer, how it is diagnosed, staged and treated can make a
difference in how a woman copes with her diagnosis. When a woman
realizes that she is not alone in the doctor’s office to ask
questions, her confidence can improve and she realizes that someone
else is “in her corner.”
Between appointments there are
many ideas and thoughts that may come to mind. Here are some ways to
remember those for the next trip to the doctor’s office:
-
Keep a journal of
questions and recent activities to share with the doctor
-
Keep a list of symptoms noticed
between appointments
-
Research the latest material on
ovarian cancer and ask the doctor about advances in science
Dr. Don Dizon, FACP, Assistance Professor, OB/GYN
& Medicine at Brown Medical School is well-known for his work in
clinical trials in ovarian cancer, yet he has interesting insights
into the role of caregivers during the various phases of the
disease. He offers this advice, “be willing to talk to the patient
about their fears. Symptoms can change day-to-day, and the caregiver
can help make sense of what is happening to the patient.” In
addition, he notes that patients may need an advocate to help
navigate the “maze” of medical jargon. One of the best ways that
caregivers can do this is through educating themselves and then the
patient about ovarian cancer.
Self-Care:
As the caregiver, you may find
there are times when you will need to take a break from the everyday
stresses. While you are not the one undergoing treatment, caregiving
can take a serious toll. Some studies indicate that caregivers face
stresses like:
-
Inability to
control the situation their loved one faces
-
Feeling
overwhelmed
-
Role confusion or
sudden role changes (moving from spouse to caregiver or adult
child to caregiver of a parent)
-
Not managing
expectations – trying to do too much too quickly
If caregivers do not manage their own personal
feelings and emotions with relation to their already pressure-packed
situation, they can set themselves and their loved ones up for even
more demanding situations. Burn-out in caregivers is common,
unfortunately. It manifests itself in many ways, including:
-
Illness for the caregiver
-
Apathy about their role as
caregiver
-
Depression
-
Social withdrawa
-
Irritability or increased
anxiety
There are simple activities that can go a long
way in improving caregiver attitudes and relieving stressful
situations. Some of these include:
-
Setting realistic limits
-
Taking a walk
-
Keeping a journal of feelings
and emotions
-
Joining a caregiver support
group
-
Talking to friends
-
Going on a mini-shopping spree
-
Eating lunch out with a friend
-
Learning a new hobby or
restarting ones you may have put aside.
By paying attention to your needs during these
challenging times, you can improve your ability to care for your
loved one. In addition, redefining “success” in your given situation
can also help to overcome some of the anxiety of the situation.
Redefining success means recognizing that reaching smaller goals
during the treatment and recovery process can be just as rewarding
as overcoming large barriers.
If
Death is Unavoidable:
For women facing stage III or IV
ovarian cancer, treatment may only delay a woman’s death. Survival
statistics for advanced ovarian cancer are low, especially the
longer the disease is undetected and the further it has spread
throughout the body. If the cancer recurs in other areas of the
body, it may also be a sign that the disease has reached terminal
stages.
Some women at this point may
decline treatment, preferring instead to enjoy the time that they
have left with their friends and family. Chemotherapy can be
difficult to endure, and if the patient feels that treatment will
only prolong the disease and not offer a cure, she may feel that
there is little reason to begin. Whatever her decision, caregivers
need to stay informed and be supportive. Communication can be
especially difficult during these months as each person struggles to
“fit a lifetime” into a few short months or weeks.
Learning about palliative care
or hospice care options may be especially beneficial. Palliative
care or comfort care is often used when patients are no longer
seeking a cure and, instead, are looking for ways to enjoy the
remaining months or weeks of their life. Caregivers may find it
difficult to move from curative treatment to comfort treatment. The
National Comprehensive Cancer Network and the American Cancer
Society partnered together to develop Advanced Cancer and Palliative
Care Treatment Guidelines for Patients. This guide can be downloaded
at
http://www.cancer.org/downloads/CRI/F9643.00.pdf. It offers
insight into end of life decisions and suggestions that may make
conversations surrounding palliative care easier for the patient and
the caregiver.
Honest communication is
important to the patient and the caregiver when facing a diagnosis
of ovarian cancer. Caregivers play a critical role in helping the
patient cope with emotions and feelings at home, as well as sorting
out the medical information they will need to understand during
their treatment. Combs offered this one last piece of advice when it
comes to understanding ovarian cancer treatment: “It’s a matter of
mind over body. Your caregivers can help you sort out what is right
for you, but education is important for everyone.”
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