I know you are feeling overwhelmed right now. You are searching for direction, answers, hope. I am here to help. Each month, I will send you some information and advice to try to make your journey a little more manageable…
Becoming a Cancer Advocate
Whether it affects you or someone you love, cancer can turn your life upside down. You will likely experience a range of emotions, such as fear, uncertainty, and anger. One of the most difficult feelings may be a sense that you have lost control over the situation. At some point in the cancer journey, you may feel compelled to take action. Many cancer survivors and caregivers search for ways to make a difference in the lives of others touched by the disease—to transform their experience into change.
What is Cancer Advocacy?
Cancer advocacy is speaking out on issues that you care about with the goal of improving the lives of people with cancer. A cancer advocate is someone who supports or defends a cause, idea or policy regarding cancer. Advocacy can include personal advocacy, advocacy for others, and advocacy in the public interest. It can be on an individual, local or national level. If you are a survivor or a caregiver, your voice is a powerful tool.
Examples of Cancer Advocacy
There are many ways to be a cancer advocate. You may decide to advocate for your own care or for the care of others. For example, you may support other patients and caregivers by sharing the lessons you learned. You may want to raise awareness about a specific disease, or lobby for increased funding for cancer research. You may decide to volunteer for fundraising events in your local community, such as a cancer walk/run. You may also work to change laws and policies that affect people living with cancer.
In addition, you can also become a self-advocate by taking an active role in your own cancer care. For example, becoming your own advocate can include communicating effectively with your health care team and asking questions. It can mean becoming informed about your treatment options and being part of the decision-making process. It can mean recruiting others, such as family and friends, to help sort through all the information. Mostly, it involves taking action on your own behalf.
The Benefits of Becoming a Cancer Advocate
Cancer advocacy can be a healing force. It can transform your outlook about the disease and put you back in control. Many cancer survivors and caregivers feel more empowered when they get involved in the fight against cancer.
Cancer advocacy can provide a sense of community and mutual support. Working alongside others for the same cause can provide survivors with a sense of hope. It gives you a chance to fight back against a disease that has changed your life in so many ways. Cancer advocacy allows you to give back to those who provided help in your time of need and also to help those newly diagnosed with your lessons learned. It can provide you with a platform to share your own stories about cancer with others. It provides an opportunity to speak out about critical issues directly affecting those living with cancer.
When you become a cancer advocate, it can also change the way you view yourself and your abilities. It can give you a sense of control in a time of uncertainty and help you move from the role of patient to survivor. You can choose how you want to volunteer your time, understand where you fit in and what skills you possess. You may discover hidden talents or see yourself in a different way.
The Powerful Voice of a Survivor
Nobody can speak about cancer better than those who have been there. The voice of the survivor is indeed a powerful tool. Behind the voice is passion and dedication that comes only from personal experience. Cancer advocacy is one way to take action, to help others who will face a similar path you did. By sharing your voice and your knowledge, you can help to bring about change for those impacted by cancer.
Cancer may have made you feel a loss of control. Cancer advocacy can help you discover what you can control—which is what you do as a result of being diagnosed with the disease.
Tips for Becoming a Cancer Advocate/Joining the Cancer Cause
- Choose your cause. Decide what you stand for and what cancer issues you want to support. Research different advocacy opportunities to help determine how to best apply your skills and talents towards this cause. You may also ask your health care team about possible advocacy opportunities that share your interests and objectives.
- Connect with cancer patients in your community. You may want to help guide someone who is newly diagnosed with cancer through the cancer experience by sharing your own personal experiences. This may mean volunteering for a telephone hotline or participating in a cancer emotional support group. Service and support groups help patients and caregivers realize they don’t have to face cancer alone.
- Start your own support group. First, establish a purpose for your group. Create a committee and recruit others in your area to join you. Determine the dates, times, and the location to hold your meetings (e.g., churches, libraries, community centers, private home). You can also attend other meetings to understand how they operate. To get people to know about your group, create and distribute a flyer via email and in appropriate public areas (e.g., doctor’s offices, hospitals, pharmacies, churches, post office, libraries). You can also call a local newsletter for a free announcement in the community calendar.
- Educate the public. You can work at the local or national level to increase awareness and educate the public about cancer. For example, you may decide to speak to church groups, civic groups, or the media about cancer-related issues such as insurance access and the importance of screening and early detection. You may also decide to start an awareness program to educate people in your community about cancer prevention.
- Donate money to cancer research. You may also decide to support cancer-related research by donating money to a cancer group (e.g., through a workplace-giving program). You may also buy products, such as postage stamps, where a portion of the money is set aside for cancer research.
- Participate in fundraising activities. You may decide to plan and/or participate in local and national fundraising activities both to raise awareness about cancer and to raise money for cancer research. For example, you may volunteer or participate in a cancer walk/run, dinner or other entertainment activities.
- Support clinical trials. You may also want to support clinical trials for cancer. For example, you may decide to serve on an Institutional Review Boards (IRBs) at your local hospital.
- Join a cancer organization/society/foundation. There are numerous cancer organizations, societies, and foundations that focus on different areas and cater to specific needs. For example, the goal of many of these organizations is to improve public awareness and promote research directed towards the diagnosis, treatment, quality of life, and cure of a particular disease. Other organizations offer different services, such as fundraising or advocacy.
- Reach out to the media. You may decide to share your story for a newspaper, magazine, television, radio, or other media outlet. By spreading the word about cancer, you can raise awareness and get your message out. Share short, concise statements about current cancer-related issues. Also, contact the producer to request s/he cover a specific cancer-related issue. You can also write a letter to the editor of a newspaper (be sure to include your name, address and telephone number). Letters to the editor are widely read by the public, as well as community leaders and lawmakers.
- Network with others online. There are websites that offer message boards where you can connect with cancer survivors and caregivers online (e.g., CancerCompass.com). You can also set up your own blog or join an online cancer community. Networking with others on cancer-related issues can help you feel like you are making a difference.
- Work to change public policy. You may also choose to speak out and work to change laws affecting people with cancer. For example, you may decide to testify at governmental hearings, speak publicly about a cancer-related policy issue, or contact your lawmaker.
- Meet with a lawmaker. Schedule an appointment with a lawmaker or staffer for face-to-face meeting in his or her local office. During this time, you can articulate your views on how the legislation will directly affect you, your friends and your family. Remember that personal stories make an impact. Follow up your visit with a personal letter thanking the lawmaker of staffer for his or her time.
- Send a letter to a legislator. Write a letter in support or against debates, issues, or pending legislation at the local, state or federal level. Keep your letter short (one page) and to the point. State its purpose in the first paragraph. Tell your story and address why the bill affects you. Always be courteous (even if you disagree with your lawmaker's position) and ask for a response.
- Call a lawmaker. Let the office know the reason you are calling and the action you would like the lawmaker to take on as an issue or ask where your lawmaker stands on an issue. Be brief and be specific. Your call will likely last less than a minute, and chances are you won't speak directly to the lawmaker. Lawmakers are most concerned and interested in the thoughts and opinions of their constituents, so identify yourself as a constituent.
Tips for Self-Advocacy
- Find experts in cancer. You should be comfortable with, and confident in, your care. Choose a provider/hospital/cancer facility that suits you best. Some hospitals treat cancer exclusively—This might be something you prefer. If you are seeing several different providers, make sure your care is coordinated properly.
- Understand your rights. You are entitled to certain rights from your hospital and doctors. This includes the right to make decisions about your treatment, obtain relevant, current, and understandable information, and receive care that is respectful and considerate.
- Research your treatment options. Learn about your cancer type, its stage, and your treatment options. Ask your doctor about patient education materials and resources. Compare the benefits and risks of the different cancer treatments to decide which treatments are best for you.
- Explore complementary therapies. Ask about and take advantage of other services to supplement your cancer treatment, such as nutrition therapy, rehabilitation, counseling and spiritual support. Make sure your doctor is monitoring any complementary therapies you are using.
- Expect the best. Make sure you get answers to your questions and the attention you deserve. Your care providers should communicate regularly with each other, and you, about your treatment plan. It also helps to find a cancer facility where all of your care is handled in one place.
- It is okay to get a second opinion. Don't be afraid of offending your doctor if you would like to get a second opinion. Most doctors understand the need for a second opinion when facing a major decision. Your doctor might even recommend it to help you explore your options.
- Prepare ahead. Your doctor can give you an idea about what to expect from cancer treatment, including possible side effects and how to manage them. Think about how the treatment will affect your everyday life, including work and family.
- Set reasonable goals. Set regular goals for yourself, no matter how small. For instance, your goal one day could be to walk five more minutes than the day before. Don’t try to push yourself too hard though. Listen to your body for cues about how much you can handle.
- Become involved in your treatment plan. Being involved in your treatment plan may give you a greater sense of control and help you feel more confident as you begin treatment. It is up to you to decide how involved you would like to be in decision-making and what you want out of treatment.
- Maintain open communication with your doctor. Communication with your doctor is essential. You want to make sure you are getting the information and advice you need to make informed decisions. You also want to keep your doctor informed about how you are feeling and any new symptoms you may be experiencing. You may feel awkward or hesitant to ask questions or express your concerns to your doctor. You may also find it difficult to comprehend the information you receive from your doctor and other sources. It is important to communicate with your doctor so you can feel good about your treatment and empowered during your care.
While battling cancer or being the caregiver of a cancer patient undoubtedly is, or was, one of the biggest challenges you have ever faced, becoming a cancer advocate can help empower and heal you, and transform the way you look at the disease. Your experience and knowledge can help someone else cope after a cancer diagnosis, which will in turn give you a greater sense of purpose. Your voice is power.
I hope this information has helped you in some way. I will check in with you again next month. In the meantime, stay strong and hopeful.