Last week we talked about how to seek information about your cancer in order to start your journey of self-advocacy. Once you have prepared yourself with as much information as possible, it is key to communicate your needs and feelings with your family, friends, health care providers and others who could make a difference in your cancer journey. Just having knowledge isn’t enough. It’s important to communicate what you now know to those who can help you.
Talking to friends and family clearly and thoughtfully will allow you to explain your cancer diagnosis and treatment to them in a way that avoids confusion and misunderstanding. We recommend that you decide who you want to tell and how much of your cancer journey you want to share. Expect that they will have a lot of questions. The more they understand, the more they’ll be able to help and support you when you need it. If you have children, balancing the need to inform them with the need to protect them can be a challenge. We wrote a blog post filled with resources and tools for talking to your children about your cancer that we recommend if you are working through this.
The other key people who you will be communicating with are your health care providers. Doing your research and figuring out what is important to you in your cancer care will prepare you to clearly communicate your needs to your medical team. This will be an on-going process throughout your treatment. Always be prepared to communicate what you need and how you are feeling with your doctors and nurses.
Communicating does not have to just involve family members or friends or those who you must interact with throughout your cancer care. Another helpful facet of communication is finding others who are going through similar experiences who you can talk to and share your experience with. One great way to share your experience in a meaningful way is by joining the Cancer Experience Registry, where you can share your unique experience with cancer to help researchers find patterns and common needs of people living with cancer. Those patterns can help the Cancer Support Community tailor our resources to address the social, emotional and financial challenges of a cancer diagnosis that are not yet being met. Additionally, if you want to find others you can talk with about your cancer experience, joining an online or in-person support group can be hugely beneficial. Learn what your options are for finding support here. Finding others who understand what you are going through and who can share in your experience can be incredibly meaningful.
Once you have begun reaching out and communicating, you are in a position to take action in your cancer experience. When you are a self-advocate, you are empowered to take a measure of control over your own cancer journey. Next week we will talk about making decisions, negotiating and taking action in your cancer care to wrap up our discussion of how to become a self-advocate. Make sure to check back in with us then!