Today marks three years of being a cancer survivor. Yes, it was November 24, 2014, when I had a ‘little’ car accident’ that sent me to the emergency department where a CAT scan revealed a brain tumor. Following the diagnosis, I found my way to Sylvester Comprehensive Cancer Center at the University of Miami, where I was diagnosed and treated.
- Every person needs an advocate when they are thrust into the complex world of healthcare. Having an advocate, someone who knows you and can be with your through your journey is essential. When you are told you have cancer (or any other chronic condition), having someone with you who can listen to you, to the doctor, and other members of the healthcare team is critical. My husband was my advocate. He was there with me every step of the way and spoke for me when I could not speak for myself and made sure I was safe. I also had two friends who recognized I needed to be in a Cancer Center to ensure I was diagnosed correctly and treated by a specialist. They both helped my husband realize his responsibility and gave him tips on what he needed to do to prepare for the journey we were taking. I firmly believe all three saved my life.
- Being a patient is hard work. As a nurse of 40 years, I thought I knew what it was like to be a patient and what they go through. One of the best things about ‘being diagnosed with cancer’ was that I got to see up close and personal how hard it is to be a patient. This experience has given me a new perspective on my role as a Nurse Advocate. Turning your life over to professionals is the first step. Being a patient is very impersonal. People don’t know YOU. You are a patient/someone they take care of when you are sick. I strongly encourage every patient to introduce yourself to your healthcare team, so they know who you are and what is important to you. As they get to know you, you become a real person to them. You also begin to develop a personal relationship which allows them to know that you have feelings. Together you will work together on the journey.
- I learned I am responsible for my care. In the early days of my journey, I was not able to participate in my care. The Brain tumor that invaded my body impacted me cognitively, so I needed help. My husband was my voice. As the treatment did its ‘magic,’ I became more aware and able to take a more active role in my care. I learned that it was up to me to understand what was happening, to ask questions and to be involved. When I was able, I read my chart and the records that my husband collected. I learned how to use my patient portal so I would know the results of my lab work and other diagnostic tests. I asked questions when I was unsure of what was happening or if I knew I needed help as I was having trouble adjusting. I learned who the influencers were, those who could provide me with information and how to reach them. I became my own advocate and every day I learn how important that is.
- I realized I had to take care of my general health care while still focusing on my cancer care. After I completed chemotherapy, I made appointments to see my primary care physician so she would know what was going on. As she was in the same health system, she could access my records and coordinate care with my cancer specialist. I made an appointment with a GYN doctor from the same health system and had my annual mammogram and Pap test done. I had my first colonoscopy after I saw a GI Specialist. The first thing he asked me; when was your last colonoscopy. After I told him I never had a colonoscopy (at the age of 60), his words hit me so hard that I immediately scheduled a colonoscopy. He said; so you are going to die from colon cancer after beating brain cancer! Having cancer opens your eyes to how important it is to stay healthy. I am still learning how to take care of me. Even as a nurse I have behavior changes I need to make and am using the tools my insurance company offers so that I can stay healthy.
- I am adjusting my life to accommodate my ‘new normal’. As a result of chemotherapy, I had complications that have impacted my mobility. I have to wear braces when I walk. My doctor continues to advise me not to drive as a result of ongoing cognitive and physical complications, so I use Uber when I need a ride. As far as work, I have not been able to find a job that meets my skills and restrictions, so I am keeping busy with various projects that are meaningful to me and allow me to use my skills, and improve the process. I am slowing adjusting to a ‘new normal.’
- I hope you never hear the words, ‘you have cancer’ but if you do, know that today there are treatments, support systems and most of all HOPE. Cancer is a treatable disease, and many people do well with treatment. After facing my own mortality, I have a new perspective on life and what is important to me. I try to keep that focus as I move forward on my journey. I work to stay positive and live life to its fullest. Facing my mortality has caused me to look at the kind of care/treatment I want if the cancer reoccurs or another event occurs. I have talked to my husband about this as well as my family.