Navigating Diagnosis and Treatment: Suggestions for Maintaining General Well-Being for Patients and Families: The following information will help you to be a better advocate. In basic terms, advocacy not only refers to involvement in specific medical details regarding diagnosis and treatment, but rather to overall well-being. Patients and families who are advocates do all that they can to promote health and recovery following a cancer diagnosis. Use the advice below to provide support for you and/or your loved one.
- Ask a family member or friend to keep the rest of your support network updated on how you’re doing, through e-mail, a blog and/or phone calls. If you enjoy writing and feel that updating information personally would be therapeutic, do so! It can be a great relief and an essential part of your healing. CaringBridge.org is a wonderful resource if you want to share your story with others. The patient and/or caregiver can create a webpage using their website. The American Cancer Society has a unique program called the “Circle of Sharing™” that enables patients to enter their medical information in a free and secure web-based program. They can share the information with family and friends. One of the many interesting aspects of this tool is that once medical information is entered, articles specific to that information will be sent to the patient and their contacts, if they wish to share.
- Enlist the help of friends and family. Ask them to help research the disease, to assist with driving to and from appointments, to help with shopping, dinners, house and yard work, babysitting and pet-sitting, to name a few (organize them via Lotsa Helping Hands to make the process easy). Everyone wants to help, but sometimes they do not know how. Reach out to them and tell them what you need. You may not realize the generosity people are capable of until you experience a crisis; the beauty of humanity will shine through.
- When possible, have someone accompany the patient to appointments. It helps to have someone else there to take notes/ask questions/provide support. If you have medical visits that require air travel, consult the Air Care Alliance. There are many organizations listed there that provide free air travel for people undergoing medical treatment (typically the patient and one caregiver). Free rooms are sometimes available through the American Cancer Society’s Hope Lodge. Another helpful resource for lodging is Joe's House.
- Seek a cancer community support network (e.g.Cancer Support Community or the Young Survival Coalition). You may choose to participate in an online forum or in face-to-face interactions. Many organizations employ oncology counselors who are specially trained to answer questions and provide guidance to patients and families affected by cancer. Whether you prefer one-on-one sessions or group interaction, the social communities above will offer great support. Social and emotional concerns related to cancer have only been addressed relatively recently, and the above organizations are designed to work together with medicine in providing the best quality of care for patients.
- Pass financial responsibilities on to a trusted friend or family member. When you have someone who can help you with this, it removes a great deal of stress. If you have the ability to set up automatic payments for bills online, do so. Do you have a friend or family member who works in finances or accounting? Ask them if they will help you manage your finances. The less responsibility you have, the more time and energy you can.
- Research financial support. There are many organizations that provide financial assistance to cancer patients and families, and asking for aid is a sign of strength, not a weakness. Prescription costs are high, transportation is expensive and many patients find it difficult to navigate the insurance system. There are options for assistance in various areas. Go to our Financial Support section for more detailed information about financial resources. Social workers are an invaluable resource for financial support (among other types of support). Ask your physician to provide you with a contact in your own community, contact United Way’s 2-1-1 information line, or visit CancerCare. Another option may be Social Security Disability or Supplemental Security Income. Visit the website for Social Security to speak with someone about your eligibility. Ask your family and friends to help you look for financial support and the process will feel significantly less daunting.
- Keep fun and humor in your life! Remind others that your personality has not changed...you do not need to be treated differently and you still appreciate jokes and humor. Many believe humor’s healing powers are much stronger than anyone can appreciate. Watch funny movies, download happy songs, invite friends over, go out on the town, start a game night! Take an upbeat book with you to your doctor’s office on treatment days. Engage the patient next to you in a conversation about their lives, their family, anything but cancer. Always chat with your nurses and doctors. They are some of the most interesting and inspiring people you will ever meet. Indeed, if you enjoy meeting and talking with new people, you will discover that chemo and treatment in general is a very social affair. And remember, “sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy” (Thich Nhat Hanh).