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by Julie Auton
In today’s fast-paced, hectic and demanding world, it’s challenging enough to balance work, home and family, but add a major health problem to the mix and your life can spin out of control.
This is the case among many women, since females tend to be caregivers–taking on the world, fixing everyone’s problems, juggling dozens of errands and projects at once, and wanting to be in control and on top of things at all times. It’s even truer for younger women, who are more likely to be enmeshed in raising a family, working full time and managing a busy household with lots of moving parts.
But a breast cancer diagnosis can easily throw the daily routine out of whack. Life’s demands still have their pull, but now there are doctor’s appointments to meet, life-altering decisions to make, and very often side-effects from treatment to manage. As a result, breast cancer patients soon discover their regular way of operating needs adjustments so they can focus on their health.
Fortunately, there are vast resources and services readily available through nonprofit organizations and hospitals. It’s just a matter of knowing where to turn. Following is an interview with two hospital programs that help breast cancer patients manage their treatment while managing the demands on their lives.
Lianne Tedesco, RN, is a nurse educator at the Doris Shaheen Breast Health Center at Piedmont Hospital in Atlanta, who guides breast cancer patients through the maze of treatment.
“I tell my patients first that they need to get organized,” she says. “It can be so overwhelming–especially in the beginning, until you get your treatment plan in place and go through your first chemo. It’s a full-time job running from doctor to doctor. There’s a number of appointments, many difficult decisions to make about options for surgery and chemo…so much to do. This produces a lot of anxiety.
“I recommend getting a three-ring binder and using one tab for recording lab results, one tab as a calendar for appointments, and one for keeping up with bills. Patients often use different providers and receive a variety of information, so getting organized helps tremendously.
“Second, if you’re undergoing chemo, you need to make arrangements ahead of time, keeping in mind when your treatment dates will fall (typically, every two or three weeks). Plan for the ‘bad’ days, when you know youâ€™ll feel extremely tired or won’t feel well. Schedule your treatments so that your rough time will fall during the weekend, particularly if you have a full-time job. Prepare meals in advance. Run errands and clean house early. Arrange child care. Then, you’ll have a lot in place when you don’t feel like doing anything.
“Another suggestion is to take advantage of service companies. For example, there are meal services available, such as personal chefs who shop, cook and clean up afterwards. In fact, I’ve known women to receive a personal chef as a gift from coworkers. You can also check online for ordering meals in your area. One company (www.homebistro.com) delivers individually packaged meals in dry ice to all 50 states. All you do is place the package in simmering water for five minutes, and the food is excellent quality–not like a TV dinner.
“There are also laundry services, which clean and fold clothes for one dollar a pound. Several organizations also provide transportation to medical appointments.
“Another recommendation is to put together an email distribution list of all the people who want to know how you’re doing, and send regular updates. This is a great way of preserving time and energy, so you’re not fielding 800 phone calls a day when you don’t feel like talking.
“I emphasize for patients to utilize their network. Women are not good at accepting help; rather, we take care of everyone else’s needs and are pulled in so many directions. Patients need to give themselves permission to allow people to help them. If someone offers to assist, patients need to have a list readyâ€”help with carpooling or picking up medicine or grocery shopping or dropping off a child to soccer practice. People are not giving lip service when they offer–they truly want to help in tangible ways.
â€śWithout direction, people help in ways they think is bestâ€”which is not necessarily helpful for you. Therefore, communication is essential.
â€śI forewarn my patients about what to expect from their husbands and children, especially, during this time. Men are not particularly socialized to be caregivers, and just want to fix a problem. As a result, they often don’t know how to help. I see women get their feelings hurt when their husbands don’t offer to do anything, but men need direction. You need to tell them what you need.
â€śThis goes for children as well. While your world is crumbling, your teenager goes off to play videogames with a neighbor. Realize this is normal developmental behavior rather than the fact they don’t care. Teenagers are naturally self-absorbed during this time of life, and it doesn’t mean they don’t love you. So, be prepared for this behavior.
â€śCommunicate to your boss and coworkers as well. Tell them what you would prefer or not want during this time. For example, let them know how much, if any, of your illness you want told to others.
â€śFinally, I advise women to be connected with a support group, especially if they don’t have their own network of friends, family or a church. Patients need a source of support to access resources, share advice and answer questions. If you donâ€™t know of a support group, call a hospital breast center for information. They can provide resources and people who will help you.â€ť
Linda Hughes, RN, is a clinical nurse educator with the Congregational Ministry for Health and Wellness at Gwinnett Hospital System in metro Atlanta.
This program enables a hospital to partner with any faith community to meet the health needs of its constituents. Parish (or congregational) nurses are employed by a hospital, but work on-site at churches in the hospitalâ€™s service area. A patient does not need to be affiliated with the church involved.
â€śThe premise behind this program is two-fold. First, all faith believe systems have tenants about health, so it’s an effective way of reaching people. Second, we treat the whole person–not just physically, but also spiritually, emotionally and socially– realizing that not every health concern is a physical one. Other issues can impact physical health. A perfect example is breast cancer.
â€śLetâ€™s say a woman in her thirties is married with two kids, ages 7 and 9, and works full time. She’s diagnosed with breast cancer and suddenly, her world is turned upside down. Who’s going to take her daughter to ballet rehearsal or son to little league practice? Who’s going to pick up the slack at the office? Who’s going to help with meal preparation and house cleaning and errands? All these pieces are very practical issues related to the managing the disease.
â€śThe parish nurse goes into a faith community and conducts a full congregational assessment to determine what resources are available at the church or synagogue. Next, the nurse locates resources in the immediate community, then statewide and nationwide. Resources include groups to bring meals on regular basis, or pick up kids from school, or mow the lawn or run errands.
â€śThe nurse also taps into cancer support groups, such as cancer ministries and chemo buddies. The American Cancer Society is a good place to start, offering Road to Recovery (providing transportation resources), Reach to Recovery (matching patient to a survivor) and Look Good Feel Better (helping women adjust to their altered appearance during chemo), to name just a few programs.
“We also direct a patient to spiritual support, praying with the person, referring to spiritual resources and counseling services, as appropriate. A major illness often forces someone to look at the world in a different way and result in a spiritual crisis of sorts. By being available to meet physical and practical needs, the congregational nurse can provide a “safe place” for patients to share spiritual concerns.”
â€śWhile interacting with the patient, a nurse can help her understand the disease process, and what her medical options are. Patients, at first, are overwhelmed with the news of their diagnosis, and we help them feel more in control of their lives.â€ť
Resources a Click Away
Following are some excellent websites for gaining insight into breast cancer and available resources:
American Cancer Society
Enter your zip code and local resources will pop up. There are resources on this site that provide assistance with transportation, homemaking, homecare, finances, food, legal issues, medications, survivor support, wigs and other accessories, and much more.
Your Breast Cancer Treatment Handbook, by Judy C. Kneece, RN, OCN
Helping Your Mate Face Breast Cancer, by Judy C. Kneece, RN, OCN
Dr. Susan Loveâ€™s Breast Book, by Dr. Susan Love, MD