Cancer Survivor Shares 3 Tips to Enhance Your Visit to NIH
, by Sarah, Ependymoma survivor
Sarah was 37 years old when she was diagnosed with an ependymoma. She has been coming to NIH for care for four years. Sarah shares her tips to help others.
In early 2016, I was diagnosed with myxopapillary ependymoma in my spine. I was 37 years old and had two young daughters. After the shock of my diagnosis wore off, my husband and I were in fight mode to find the best treatment.
I had my first surgery in Northern Virginia. Then, I was referred to the National Institute of Neurological Disorders and Stroke at NIH for a second surgery, followed by six weeks of radiation. Between my second surgery and radiation, I met Mark Gilbert, M.D., chief of NCI’s Center for Cancer Research, Neuro-Oncology Branch, and enrolled in the natural history clinical study for central nervous system tumors. (Read her full story.)
My decision to come to NIH saved my life. I have been cancer-free since December 2016 and have routine MRIs every six months. So, I have been a regular at NIH for four years. Here are my tips to enhance your experience and visits to NIH.
1. Speak Up
Your voice is the most powerful tool you own. As a patient, it’s easy to not feel your most complete and comfortable self in a medical setting. You may be wearing a hospital gown that barely covers what it’s supposed to, lying on a chilly exam table, or being peppered with intimate questions that you don’t always have the answers to. It can be challenging to share your concerns in any situation, but particularly at times like these.
Ironically, this is when communication skills are most vital. If you’ve been sitting in the phlebotomy waiting area for 20 minutes and you’re feeling particularly anxious about the upcoming bloodwork, check in at the desk and see where you fall in the queue.
Maybe you’ve been fasting for a certain test and know you need to lie down. Speak up and ask for a place to rest privately until you’re called for your test. What if your physician gives you results that you just don’t completely understand? Respectfully, request that they explain everything again until you do.
Your patient journey at NIH is an equal partnership between you and everyone you encounter there. Play your part and use your voice knowing it’s a critical component of your health and well-being.
2. Pack Your Patience
The day before my surgery at NIH in 2016, I needed a last-minute MRI. My neurosurgeon wanted to take another closer look at a portion of my tumor that had dropped further down in my spinal canal into an area where it would be unsafe to operate because of a risk of paralysis. Scheduling me for an MRI on such short notice not only made me feel unprepared, but it also made other people have to wait longer for their appointments. Now, when I’m headed for my routine MRI, I pack my patience.
There are so many factors beyond our control that it’s a good idea to control what you can by being prepared to wait. Clear your calendar for the day. Make back-up arrangements for childcare or work projects. Bring snacks, reading material, and a cell phone charger. Wear layers in case it’s cold while you’re waiting. Bring something hot or cold to drink. How about a note pad and pen to write down thoughts or questions that pop-up while you’re waiting? Download a book to listen to. Bring a knitting project. Bring whatever you enjoy to help make waiting less of a chore and more of a gift of free time.
3. Bring a Buddy
This tip isn’t profound in any way, but it’s probably the most important one. Even if you’re the most competent and organized person you know, navigating your way through a large and complex medical system is incredibly challenging. Add on grappling with the physical and emotional complexities of a possibly serious and complicated medical diagnosis, and it’s time to call in a favor.
Ask your sister-in-law if she would be able to take a few days off work to make the trip to Washington D.C. with you. Call your old college roommate who offered to help in any way she could when you told her about your diagnosis. I’ve seen people find support in all kinds of ways through social media. Post a note on Facebook about your condition and see what type of help pours in. A friend of a friend might live in the area and be happy to meet you at NIH to serve as a notetaker for your day of appointments.
There are also social workers available to patients at NIH as well as Friends of Patients at the NIH, which is a nonprofit that supports patients emotionally and financially. Seek out the helpers. Most people genuinely want to help and would be honored to have been asked.
So, next time you take a trip to NIH, use your voice, be prepared to wait, and ask someone to go with you.
You can also join NCI-CONNECT’s private Facebook group called NCI-CONNECT Community. It’s a great way to get advice, support, and encouragement from others.
Getting to NIH and the Clinical Center – provides transportation information, patient services, places to stay and how to get around the hospital.