Being Your Own Advocate
Patient advocacy is a cause near and dear to my heart. This task is most often handed to the patient’s caregiver, meaning their spouse, close family, or parents, sometimes even adult children. I believe having this support is crucial to a cancer patient’s ability to navigate the medical system and being successful in maintaining their health. But what do you do when you are an adult without children and old enough to need to think of times when your parents/spouse may no longer be around? This is where becoming your own advocate is critical.
Preparing myself to be my own advocate
I am turning thirty in just over a month. I do not have children who can look after me (not old enough/can’t have any biologically). My mom is a long-time nurse with a background in oncology, so she was an incredible help to me and my husband in the beginning. Now that I am in the maintenance phase of my cancer treatment, I am making sure I am my own best advocate. This is because there will be a time when my mom is too old to hold my hand through this, and if something ever happened to my husband, it would just be me in this battle.
Becoming an expert on my diagnosis
So what does it mean to be your own advocate? Well, the first step is to make yourself the most knowledgeable person in the room on your diagnosis (besides your doctor). This takes work, but it is so worth it. I started by requesting my medical records and reading all of them. I took note of medications I’ve been on and why. I practically memorized my pathology and surgical report. If there was anything I didn’t understand, I made sure to ask my medical team to explain it to me.
Asking my doctor the hard questions
From day one, I asked my doctor the hard questions about the statistics, complications, and treatment options that lay ahead of me. I also very early on started requesting a copy of my labs each time I had blood work done. This allowed me to learn what my baseline was, and what all those numbers meant. I opened this line of communication and information with my doctor so that I wasn’t in the dark about what was happening in my body. This has helped me feel empowered and take on the second part of being my own advocate.
Taking an active role in your medical care
Once you become knowledgeable about your disease, the most important and often hardest part of being your own advocate is being active in your treatment. What I mean by this is taking an active role in the decisions made regarding your treatment and care. When everything was so new and scary, I didn’t think to question some of the procedures and medication I was put on. It wasn’t until the second readmit to the hospital that I learned to be involved in questioning what was being done to my body.
Sharing my knowledge of my own body with my healthcare team
Now, don’t take this as paranoia. I really mean alerting nurses to medications I am not necessarily allergic to but have less than desirable reactions to. Letting the phlebotomist know that I have scar tissue from harsh antibiotics in my right arm that prevents IV’s being placed. Pushing back on the resident who wanted to put a nephrostomy tube in my damaged left kidney that doesn’t work anymore “just to see what happens." I trust my medical team, but I’m also not going to do anything without knowing why.
Making a handbook of important information to bring to appointments
When you are in pain or scared, it can be so difficult to also advocate for yourself. My final tip is to make a handbook of sorts that goes to any appointments and can be grabbed quickly for a hospital visit. In mine, I have things like my personal information, emergency contacts, location of my port, the fact that I’ve had blood transfusions, an alert that I am on immunotherapy as well as a quick overview of procedures I’ve had, and my pathology report. This way, I know if I am seen by someone who hasn’t treated me before, they know the important details if I am unable to communicate myself.
Being informed and empowered
Being your own advocate doesn’t mean being taking control of your treatment, it means building a connection and fostering teamwork with your doctor and the folks involved in your care. Taking this active role means you will be informed and empowered through each step of your cancer treatment.
How are you raising bladder cancer awareness this month?