Submitted by Sue Ellen Glover, RN, OCN, a Beacon Oncology Nurse Advocate, November 12, 2013
Fear of the unknown is one of the most common sources of distress I have encountered with new cancer patients in my many years as an oncology nurse. The good news is that most people find that neither the treatments nor the side effects are quite as bad as they imagined. That doesn't change the fact that getting through that first day in a chemo chair or on a radiation treatment table frightens almost everyone! I haven’t seen many people run from the infusion center or jump off the table, so chances are good that you’re going to make it through that first day and actually feel some relief once it’s over. But what happens next? How do you get through the weeks or months of treatment and somehow keep your life together? Here are a few tips I've collected to help you do just that.
Become your own advocate. Clear and honest communication with your oncologist and your oncology nurse can help to ease some of this fear. Additionally, your oncology nurse can assist you in answering questions or helping you to find appropriate resources. Oncology nurses have the experience, information, and knowledge to help you make informed decisions about your cancer care. It has always been my belief that knowledge equals power. Though you will be faced with making difficult decisions throughout your journey, educated decisions almost always result in better outcomes. Understanding your treatment and options helps you to feel empowered. Look for a doctor who willingly listens and provides answers to the questions burning in your mind. This creates an atmosphere of mutual respect that facilitates a more trusting relationship between you and your oncology team. Taking a stance to be involved in your care is the first step in taking back some of the control that you need to move forward with a decisive, positive outlook.
Engage your personal support system. In my experience, cancer patients with a strong support system consistently have better outcomes emotionally, physically, and according to research, a strong support may even play a role in overall survival. Sources of support and comfort may include: family, close friends, spiritual practices, attending support groups, and meeting with healthcare practitioners specifically trained to understand the unique needs of a cancer patient. The key to good psycho-social support is having others available with whom you can have meaningful discussions to help you work through your issues and feel safe venting negative feelings. You are likely to cope better with people around who can help encourage you to take good care of yourself and to do things for you when you’re not up to it.
Let others help. Making it a priority to keep your life ‘normal’ through treatment and recovery may help in dealing with the distress of your new diagnosis. Most strategies include activities that assist you in retaining control of your own life. Taking your children to school, having lunch with friends, participating in an activity you enjoy, are just a few examples of how to stay connected to your life before cancer. Studies have shown that withdrawing from normal activities may lead to depression, anxiety, and an inability to cope with the abrupt changes that can occur after a cancer diagnosis. Even so, there are likely to be times when you’re not up for a social outing or even making a meal for yourself or your family. People want to help, but often don’t know how. This is the time to allow friends, family, people from your church or community to bring you dinner and a movie, mow the lawn, or take your kids for a few hours or overnight.
Don’t try to go it alone. There is no “one size fits all” when it comes to the emotional, psycho-social, or other needs of a newly-diagnosed cancer patient. Despite having people around who care, some people find that the emotional burden of coping with a cancer diagnosis leaves them feeling isolated and alone. Social isolation is a common reaction when a person is faced with a life-threatening illness. If you can’t talk to those closest to you, consider a support group. Talk with your oncologist, your oncology nurse, or check area hospitals for information about local groups available close to home. Alternatively, the American Cancer Society (ACS) is just one of many national cancer organizations that offer a wide variety of programs to meet your individual needs.
The following is a sampling of programs provided through the ACS. Contact your local chapter for dates, times, and availability:
· Online Communities and Support- these programs provide a way of connecting with others who share your experiences without leaving the comfort of your home and include: WhatNext (cancer support network), Circle Of Sharing™ (personalized cancer information), and Cancer Survivors Network.
· Hope Lodge (Lodging)- provides lodging when getting the best treatment means traveling far from home
· Reach To Recovery (Breast cancer support)- matches breast cancer patients with volunteers who have “been there”
· I Can Cope (Online cancer education classes)- helps cancer patients and their loved ones learn about cancer
· Look Good Feel Better (Help with appearance-related side effects of treatment)- In a Look Good Feel Better session, trained volunteer cosmetologists teach women how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry.
Beacon Oncology Nurse Advocates promote and support caring for the whole person, by encouraging self-advocacy through education and participation in decision-making that includes family, friends, and other caregivers as directed by the patient; utilizing cultural and spiritual sources of comfort; engaging in activities that bring pleasure and have roots in the patient’s life before cancer; joining support groups that encourage verbalization of feelings in a safe environment where others have a real understanding of what the patient is experiencing.
Consider a Beacon Oncology Nurse Advocate if:
· You do not feel you fully understand your cancer, treatment, or available options
· You have concerns about making decisions regarding your treatment on your own
· You need help understanding your health insurance benefits or are struggling with getting authorizations for doctors, treatment and/or medications
· You feel overwhelmed by the complexity of your treatment plan and need assistance coordinating your care
· You want a licensed, experienced, certified oncology nurse to participate in some or all of your care to help you make informed decisions
We encourage you to send your comments, questions, or to share your experiences with us.