Tips for Navigating Cancer Treatment
Working with your Healthcare and Caregiver/Support Teams
- Get to know ALL the members of your health care team. The doctor, nurse practitioner, social worker, navigator, dietitian, financial counselor, oncology nurse, physical/occupational therapist, and pharmacist are all key players in helping you find your way from diagnosis, through survivorship.
- Keep a binder with your treatment information, healthcare team contact information, and medication lists. Within your binder, keep a list of symptoms, side effects, and questions for your team and bring this to your appointments. This will help you be sure you get all potential issues addressed and questions answered during your appointment. (See OncoPilot for helpful forms to make a binder)
- Bring a family member or friend to appointments with you, especially when treatment decisions are being discussed.
- If you can't bring someone to your appointments with you, consider asking the team if they are comfortable with you using your smartphone to record your conversation.
- Use social networking (Twitter, Facebook) or websites, like mylifeline.org, carepages.com, or caringbridge.com, to make your own website, keep a blog/journal and share information about your cancer journey with your support network.
- If you are hospitalized you might get confused and overwhelmed by all the different people coming in and out of your room every day. Ask them to write their names in a "guest book" when they come in.
Making the Most of Trips to the Clinic, Infusion Suite or Hospital
- Days in the clinic, infusion suite, or hospital can be long. Bring along things that make you comfortable and help pass the time. Examples include headphones/Mp3 player, movies, laptop/tablet, book (or if your eyes are tired, how about an audiobook?), knitting/crochet, puzzle books, or board/card games. This goes for patients AND caregivers!
- Don't forget to think about what you are wearing! Dress comfortably. If you have a central line, choose a shirt that offers easy access to it. Bring comfy slippers, a blanket, pillow and maybe even an eye mask or earplugs if you want to catch a nap in a busy infusion suite.
- You may also want to bring some snacks with you. Hospital food isn't typically known for its high-quality cuisine offerings! Consult with a registered dietitian who can suggest easy to prepare and pack snacks that will help get you through your long treatment days.
- Remember drinking fluids is important! Bring a refillable bottle with you and drink water all day. Feeling nauseous? Ginger has natural anti-nausea properties. Think about stocking up on ginger ale which keeps you hydrated and can help manage your symptoms at the same time.
- Fatigue is a common side effect of cancer treatment. Exercise is the best "treatment" for fatigue. Go for a short walk, play catch with your grandchild or throw the ball for your dog. Even a small amount of activity can improve your fatigue.
- *Keep in mind, due to the COVID-19 pandemic, many hospitals and clinics have implemented limited visitation policies. Call your provider before your visit to learn more about who can come with you, who can visit, and other rules put into place for appointments and visitors.
Resources for More Information
Offers comprehensive information about specific types of cancer, updates on cancer treatments, support, coping, and news about research advances. Information is updated regularly and is available at various levels, from introductory to in-depth. If you are interested in learning about cancer, you will benefit from visiting OncoLink. www.oncolink.org
The American Cancer Society
Dedicated to helping persons who face cancer. The ACS supports research, patient services, early detection, treatment, and education. The ACS maintains a national database of patient support services, support groups, and resources. www.cancer.org
Dedicated to providing personalized connections that enable one-on-one support among cancer fighters, survivors, and caregivers. www.imermanangels.org/
Cancer Hope Network
Provides one-on-one support to people undergoing treatment for cancer and to their families through training individuals who have recovered from cancer and matching them with cancer patients currently undergoing a similar experience. www.cancerhopenetwork.org/
Cancer and Careers
Empowers and educates people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events. www.cancerandcareers.org
American Society of Clinical Oncology (ASCO)
Provides timely, comprehensive, oncologist-approved information from the American Society of Clinical Oncology (ASCO), with support from the Conquer Cancer Foundation. Cancer.Net brings the expertise and resources of ASCO to people living with cancer and those who care for and about them to help patients and families make informed health care decisions. www.cancer.net
Lists various types of lodging throughout the United States that are near hospitals and treatment centers. Details on each lodging facility are available with information on amenities, rates, and reservation methods and requirements. joeshouse.org/
Cancer Support Community
An international non-profit dedicated to providing support, education, and hope to people affected by cancer. www.cancersupportcommunity.org
Provides practical information about cancer and support through education, referrals, and counseling services. www.livestrong.org/we-can-help/
Provides free, professional support services and information to help people manage the emotional, practical, and financial challenges of cancer. www.cancercare.org/
National Cancer Institute - Support Services
NCI information specialists are available to help answer your cancer-related questions. www.cancer.gov/aboutnci/cis