Working with Your Cancer Care Team
It's natural to feel out of control after being diagnosed with cancer. After all, this is a serious condition, and it can bring a lot of fear and uncertainty. Along with the person with cancer, family and close friends may feel their world has been upended.
"It's not unusual for a person to have been leading a very normal life and then suddenly be told he or she has a potentially terminal illness," says Phyddy Kettler, R.N., C.N.S., a psychiatric advanced practice nurse in Houston. "It's as if a bomb falls into the center of his or her life."
What can you do to regain your equilibrium? Put together an expert team of health care professionals and be proactive.
Who's on your team?
"Keep in mind, many people live through this experience," Kettler says. "There is a possibility you will, too."
Newer tests and treatments have added many months and years to people's lives, she explains. As a result, cancer is increasingly viewed as a long-term chronic illness, rather than an acute one.
Depending on the type and severity of cancer, there may be a wide variety of professionals supporting you throughout your care. For example:
Radiation or chemotherapy specialists
Psychotherapists or social workers
Your health benefits plan advisor
The treatment center's business office staff
All of these team members are important, but according to Kettler, some of the most central players are likely to be:
This is your team's quarterback, the cancer doctor who calls the plays and stays on top of all the care you receive.
"Be sure to choose a physician you trust," Kettler says.
A warm bedside manner can be important, she explains, but medical competence and expertise are more so. To find a competent oncologist, consider getting a referral from a reputable facility that specializes in cancer treatment.
As with anyone on your health care team, the way you communicate with this physician is crucial.
"Be open and honest," Kettler says. "Go in with pen and paper and a list of questions, and write down the answers."
Ask the doctor to speak in simple language instead of using complicated words. Ask "what if" questions: What if this nausea medication doesn't work, what do I do, whom do I call?
As treatments and symptoms progress over time, one family member is likely to act as caregiver, the CEO in charge of your care. This is a critical yet often overwhelming role. It may involve assisting in managing side effects, scheduling appointments, chauffeuring, doing pharmacy runs, dispensing medications, overseeing diet and hygiene, paying bills, and giving emotional support.
This is the person you may call most often with questions or concerns about managing pain, nausea, or other symptoms. Don't hesitate to pick up the phone; that's what the nurse is there for.
Friends, neighbors and family
When well-meaning people ask if there's any way they can help, do more than offer thanks. Show them a list of specific tasks you need help with, Kettler says.
Spiritual and psychological support
The physical needs related to cancer seem obvious. At the same time, there may be emotional or spiritual issues that are just as urgent and valid, but which are neglected.
For both patient and caregiver, cancer and its treatments often bring sadness, depression, fear, anxiety, stress, and fatigue.
"Family caregivers are called on to assume tasks and responsibilities that even five to ten years ago were done by intensive-care nurses, yet they enter this role completely untrained," Kettler says.
Often they'll have put their entire lives on hold and are suffering from lack of sleep, financial concerns, or an emotional roller coaster of uncertainty.
Patients and caregivers shouldn't hesitate to seek help from a psychotherapist, counselor, and/or spiritual advisor, Kettler suggests.
Not only can professionals treat depression, anxiety, or other problems, but a third party can address topics the patient and caregiver may not feel comfortable discussing with each other, such as loss of control, fear of death, questions about an afterlife, or how to put one's affairs in order.
An excellent way to regain a sense of control is to keep a care notebook, Kettler says. Set up a ringed binder with the three sections listed below. Keep the binder handy and keep it updated.
People. In this section list each member of the cancer care team, along with the person's phone numbers and the role he or she plays. Better yet, ask team members for their business cards, and insert them in plastic sleeves designed for that purpose.
Doctor's visits. Record the date of each visit, who was there, what was discussed, and any treatment recommendations. "Try to take someone with you to take notes," Kettler says. "They may hear something you miss in the stress of the moment."
Medications. Enter the name of each medication, its purpose, the prescribed dosage and frequency, the prescribing doctor, and the date you started taking it. "Always keep a current medication list with you." Kettler says.
"Control also has much to do with attitude," she adds. "Keep in mind, there are blessings to living with cancer. It helps people reprioritize, and it's an opportunity for people to appreciate their loved ones and improve relationships. I've heard patients say over and over, 'This is the best thing that ever happened to me. It has brought our family closer.'"