REGAINING CONTROL:
Working With Your Cancer-Care Team

It's natural to feel out of control after being diagnosed with cancer. A cancer diagnosis can bring fear and uncertainty. Along with the person with the disease, 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 Beverly Smith, R.N., manager, Radiation Oncology, Salem Hospital. "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 healthcare professionals and be proactive.

Who's on your team?
"Keep in mind, many people live through this experience," says Smith. "There is a great 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.

You are the most important member of your healthcare team. Depending on the type and severity of cancer, you may have a wide variety of professionals supporting you throughout your care. For example:

• Radiation or chemotherapy specialists
• Surgical staff
• Pharmacists
• Dietitians
• Physical therapists
• Psychotherapists or social workers
• Home-health aides
• Clergy and/or spiritual advisers
• Your health-benefits plan adviser
• The medical center's business office staff
• Alternative and integrative healthcare providers

All of these team members are key, but according to Bill Beck, Pharm.D., Cancer Service Line Director at Salem Hospital, some of the most central players are likely to be:

• Your oncologist. 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," says Beck. Being comfortable with your physician is crucial so that you can communicate with one another and make decisions accordingly.
  "Be open and honest," says Beck. "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?
• The family caregiver. As treatments and symptoms progress over time, one family member is likely to act as caregiver. 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, giving emotional support and more.
• Clinic nurse. 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 specifi c tasks you need help with, Beck advises.
  For example: "Tuesday evening I need someone to bring dinner." "Wednesday morning I'll need medications picked up from the pharmacy."

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 fi ve to 10 years ago were done by intensive-care nurses, yet they enter this role completely untrained," says Noel Phillips, chaplain, Salem Hospital.

Often they have put their lives on hold and are suffering from lack of sleep, money concerns or an emotional roller coaster of uncertainty.

Patients and caregivers shouldn't hesitate to seek help from a psychotherapist, counselor and/or spiritual adviser, Phillips suggests. Professionals can treat depression, anxiety or other problems, and can address topics the patient and caregiver may not feel comfortable discussing. Those include loss of control, fear of death, questions about an afterlife or how to organize the patient's affairs.

Staying organized
An excellent way to regain a sense of control is to keep a care notebook. 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 their phone numbers and the roles they play. 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 present, what was discussed and any treatment recommendations.
  "Try to take someone with you to take notes," says Beck. "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.

"Although you have no control over being given a diagnosis of cancer, you do have the control to make educated decisions toward your treatment plan," Smith adds. "With the expertise of our Oncology staff, you and your family will be encouraged every step of the way as you treat your cancer like any other chronic illness."