Chapter 107: Patient Advocacy- A collaboration with Fighting Pretty
https://www.fightingpretty.org/blog/selfadvocacy
Hello Friends,
Over the past few years living with cancer, I’ve become involved with a number of cancer-related organizations. I’ve found so much strength can come from community, shared stories of courage and vulnerability, and frequent reminders that I don’t face this bizarre way of life alone.
One of these organizations is called Fighting Pretty (through Cancer). I was introduced to this group, whose mission is to help women facing cancer feel strong and beautiful, when my friend gifted me a pair of their signature “mini boxing gloves” in the beginning of my cancer journey. Now, these gloves hang on my jewelry stand where I see them each morning and remember that strength and beauty come in many forms.
This blog post below is a collaboration with the Fighting Pretty team. As a board member and brand ambassador for Fighting Pretty, I appreciate their mission and encourage all those who identify as women with cancer to check them out! Their products make great gifts and their community is a fabulous way to meet others facing similarly strong and beautiful lives.
Today, I’ll be leading an online conversation about patient advocacy, something I’ve become very passionate about. As a physician who is also a patient, I try to bring a unique outlook to this important area of advocacy. The following blog is a glimpse of some of the topics our patient advocacy session will cover. Feel free to read the blog and/or join for the online discussion 11/16/22 at 7:30pm CST. Sign up at. https://lu.ma/fpadvocate
You Are Your Biggest Advocate!
Tips on self-advocacy at appointments
(Published at https://www.fightingpretty.org/blog/selfadvocacy)
My name is Courtney and I’m fighting pretty with brain cancer. My brain cancer diagnosis came about very suddenly at 29 years old. At that time, a few years ago, I was finishing up my medical residency training and decided to spend a month in Thailand studying Eastern/complementary medicine. I thought adding a bit of Eastern medical education to my Western-focused training would make me a more well-rounded, compassionate provider.
I spent a few glorious weeks in Thailand, but towards the end of my trip, I started to experience some strange neurological symptoms. These symptoms, including hand and throat cramping, seemed odd. I couldn’t explain them, so I tried to ignore them. Unfortunately, these muscle cramping episodes kept happening and I eventually had to face the reality that my body was trying to tell me something. Despite many barriers, I had to find a way to advocate for myself to get an MRI scan while in Thailand. I ended up diagnosing myself with a brain tumor in an imaging center in Thailand and my life changed forever. This is truly a pretty wild story, so I wrote a book about it. You can read more in Difficult Gifts: A Physician’s Journey to Heal Body and Mind.
Fortunately, I received exceptional care in Thailand and had a small network there that helped me arrange an urgent medical flight home where I started my treatment journey.
I’m happy to share that despite a diagnosis of malignant, incurable brain cancer, two brain surgeries, chemotherapy, radiation therapy, and a battle with facial paralysis, I was able to finish my medical training as planned and now work as a fulltime hospital medicine provider in St. Paul, MN. I also write, speak, and advocate for brain cancer, chronic illness, and disability awareness.
My experience as both patient and physician gives me a unique perspective into the importance of patient advocacy. I know without a doubt that becoming a patient made me a better provider in more ways that I can count. There are many wonderful providers who have not yet had to be patients, but in my own journey, I know this made me a more understanding, compassionate physician. My patient experience opened my eyes to the many, many challenges we as cancer patients have when we interact with the medical system. From confusing medical jargon, short appointments, long wait times, lack of resources, a sense of lack of urgency or compassion, expensive treatments, difficult choices, and conflicting medical opinions- these are just some of the challenges we face.
The medical system works in ways that do not always feel focused on improving the patient experience. As a provider, I can say that many of us are advocating to change this, but change (as we all know too well) does not happen overnight and the medical system is influenced by many factors. So, what does this mean for us?
In my opinion, it means we need to know how to advocate for ourselves. Our providers should guide us and treat us to the best of their abilities, but we, the people going through this cancer journey, are the only ones who know exactly what we need to feel supported and understood. It is our job to convey these needs, as unfair as that may feel.
As a provider, I try to anticipate my patient's needs, but this is not always possible. Some patients want to know every detailed biochemical fact about their diagnosis, while others don’t even want to know their diagnosis at all. Some patients want every possible treatment, no matter the side effects they might cause, whereas other patients choose a less aggressive approach. Some patients want quantity of life, or time. Some want quality of life, or comfort. Many want both.
My advice?
Tell your provider what you need to feel empowered and respected in your journey.
Never fear asking for a second opinion.
Ask questions. Better yet, write down your questions in advance (especially if you are in the hospital and are not sure how much time you will get with your provider each day)
Maximize the limited time you have with your providers: Come with your questions, include your family (in person or on the phone), arrive early for your appointments (it takes around 10 minutes to meet with the rooming nurse and check in, meaning your appointment with your provider will not start until this is completed), never be afraid to ask uncomfortable questions (it is much better to discuss these with your provider in person than to send a follow up message or call which will often be routed to a different team member)
As uncomfortable as it may be, think critically about quality vs quantity. What do you want your life to look like? What do you want your treatment to look like? What type of side effects are ok with you, and what type would never be ok?
Be proactive! Create an advanced directive/living will, fill out that annoying paperwork about a health care agent/power of attorney, decide on your code status (ie “do not resuscitate”). These uncomfortable decisions help you and your family have conversations about what is most important in not only the way you live, but the way you die. This information is also very informative to your providers as it helps them advocate for your wishes. With an advanced directive in place, YOU can continue to be your biggest advocate even after you can no longer verbally advocate for yourself.
I have so many other thoughts on this, but can’t spoil the fun of our conversation tonight. Hope to virtually meet many of you this evening to discuss advocacy. Lipstick (another signature Fighting Pretty product) makes me feel pretty, but advocating for myself makes me feel a whole lot prettier.
Fondly,
Courtney
©CB2022
PS- Thank you again from the bottom of my heart to everyone who donated to the Best Buddies Champion of the Year Gala! Together, our group raised over $250000 for Best Buddies Minnesota. Incredible! Once again, this shows how the power of a community filled with inclusion, equality, and positivity can strengthen us in so many ways. Whether it’s a community for those with cancer, chronic illness, disability, or any other challenge you may face, supporting each other is a powerful way to grow in strength and hope while diminishing isolation and fear. XOXO.