THE PATIENT'S PARTNER

When it Comes to Cancer, Two Heads Are Better Than One

One of the more realistic moments on HBO's The Sopranos was when Uncle Junior, grappling with stomach cancer, enlisted nephew Tony to sit in on his appointments and help decide on the best course of treatment. While you probably don't want an FBI-wanted mob boss by your side as you make major decisions regarding your health, the show hit on a universal truth: Cancer should not be dealt with alone.

Experts like Dr. David Hohn, surgical oncologist and president and CEO of the Roswell Park Cancer Institute, strongly advise that all cancer patients choose another person — be it a spouse, parent, sibling or very close friend — to serve as a "partner" throughout the diagnosis, treatment and recovery processes.

"Someone needs to listen carefully and ask questions when the patient simply can't," he says. Fortunately, a growing number of cancer centers around the country are taking the point to heart. The Johns Hopkins Breast Center, for example, asks all incoming patients to select a "care partner," who is encouraged to attend educational programs that prepare both patient and care partner for what to expect before, during and after cancer treatment.

Here are some tips for the Uncle Juniors and Tonys out there who want to work together — within the confines of the law, of course — to ensure the most successful treatment possible.

If You Are the Patient:

• Choose your partner carefully. He or she will see you at your worst and must be dependable, attentive, inquisitive and persistent. Use your weepy, softhearted loved ones for emotional support; the partner you choose should be able to evaluate and process information in a levelheaded fashion.
• Introduce your partner to as many members of your health care team as possible: surgical, radiation and medical oncologists, radiologists, plastic surgeons, nurses, counselors and rehabilitation therapists. It's helpful if they know your partner and feel comfortable having him/her around.
• Keep a cancer notebook and write down everything you can. When and if you want or need to, you can incorporate your partner's notes into your book. (More on Getting Organized.)
• Ask your doctor if it is OK to tape record your appointments. Later, listen to the tapes with your partner so he or she can fill in any blanks or nuances that you may have missed.
• Take constructive criticism. Ask your partner to watch you closely for signs of extreme stress or fatigue. If he or she suggests you need to talk to a psychologist or a nutritionist, or reduce commitments, listen.
• Set aside any feelings you may have of being a burden on your partner. You would do the same for him or her and may well have to some day in the future. That said, don't take advantage of his/her kindness either.
• And finally, don't take your partner's word as the gospel. If your instincts go against something he or she says, seek another opinion.

• Introduce yourself to your partner's health care team; make sure they know who you are and that you need to be kept in the loop.
• Keep a notebook (a three-ring binder that can hold everything is ideal) in which you take notes and store back-up copies of clinic notes, pathology reports and other literature.
• Keep a date book in which you note all appointments, treatments and so on so you don't schedule a work presentation on the day the patient begins chemotherapy, for example. A terrific gift for both of you is a set of Palm Pilots, which can be synched so you both have all the necessary phone numbers, addresses and appointments.
• Offer to deal with (or help delegate) mundane tasks that may seem insurmountable to the exhausted patient during this time. Do research, make phone calls, return correspondence, pay bills, and arrange for meals, childcare and transportation.
• Resist the urge to treat the patient like an invalid or a child. You will be the most valuable if you help shoulder the burden of accumulating and processing vast amounts of information like a partner and a friend.
• Don't turn your entire life over to the patient; taking care of yourself will make you a more effective partner.
• Develop a thick skin. Don't take it personally if the patient occasionally lashes out at you out of fear or frustration.
• Always be willing to hold a hand — the importance of a reassuring touch cannot be underestimated, even for the most stalwart and self-sufficient.