Speak, Learn, Participate: Three verbs that can change your life with cancer
You may find you take on a number of roles as you play out your life with cancer. Some days you are a warrior—Thor, wielding his hammer of protection and healing. At other times, you’re a stray dog—frightened and hiding under the porch. When it comes to treatment and managing the disease, try casting yourself as the whitewater rafting guide. In this role, you’re not alone in the boat, team work is critical (especially when navigating the rapids), and you must take care of yourself and ask for help when you need it.
In fact, self-advocacy—the ability to realize what you need, give voice to it, and take action—is a skill that will help you in all phases of cancer treatment (at the time of diagnosis, during treatment and beyond). As a self-advocate, you act as a member of the medical team, helping to make decisions that contribute to your physical, emotional and spiritual health and well-being.
“You can’t always get what you want. But if you try sometimes, you just might find you get what you need.”
Cancer treatment advice from the Rolling Stones? You bet. By advocating for yourself, you might just find you get what you need to help manage the pain and other symptoms associated with cancer and some of its treatments, e.g., fatigue, nausea, weight loss, lack of appetite, or depression. Thanks to ongoing advances in the management of these side effects, there’s no reason for you to suffer from them.
To stay on top of matters, use your voice. Tell your doctor when you are experiencing problems. Ask what s/he can do to help you. Some people feel empowered by asking what to expect even before they begin cancer treatment. Your medical team should work closely with you to educate you and provide relief so you can undergo necessary tests to diagnose and monitor your cancer, and any therapies you need for treatment. You have the right to make choices in your care and to live as comfortably as possible at every stage of treatment and beyond.
To help your health care team deliver the best possible care, get into your role as the river guide. You may feel stronger and more confident about asserting yourself if you enlist a friend or close family member as your first mate. Ask someone you trust to help you identify your values, needs, priorities, and preferences, and align them with your treatment plan. Additionally, you’ll sharpen your self-advocacy skills if you:
Communicate these important factors clearly to your doctor and treatment team.
Seek information about your specific cancer, available treatments, and your individual options. (Your medical team can help with this.)
Join a cancer support group to connect with other survivors who are in the same boat.
Share in your treatment decision making from the beginning. While living with cancer, you may face a variety of decisions. You are the river guide for your treatment and support team. You can re-evaluate your decisions at any time and change course along the way.
How to Access CanSurround
You can access CanSurround through your health care provider (cancer center or physician). To learn whether or not your provider is a CanSurround partner, please complete this form.
Donovan, H., Hagan, T. (2013). Ovarian cancer survivors’ experiences of self-advocacy: A focus group study. Oncology Nursing Forum, 40(2), 140-147. doi: 10.1188/13.ONF.A12-A19
Donovan, H., Hagan, T. (2013). Self-advocacy and cancer: A conept analysis. Journal of Advanced Nursing, (69)10, 2348-2359. doi: 10.1111/jan.12084
National Coalition for Cancer Survivorship. (2009). Self-advocacy: A cancer survivor’s handbook. Retrieved June 1, 2015. http://www.canceradvocacy.org/wp-content/uploads/2013/01/Self_Advocacy.pdf