Words of Wisdom from Adult Ependymoma Survivor
To say that my life changed three years ago when I got my diagnosis is an understatement of epic proportions! The ensuing journey has taught me many things about myself, family and friends, the medical community…it’s an ever-growing list actually. And so it is with brain surgery recovery, there is always something new around the next corner.
From folks who are newly diagnosed to those multiple years into their recovery, there are many things we all share in common.
Before I get to those commonalities, I’ll share a few specifics from my situation:
- My craniotomy was in April 2007 (no radiation or chemotherapy)
- I had a racquetball-sized tumor that went from my 4th ventricle, through the posterior fossa & wrapped around my brain stem
- Immediately after surgery, I had a long list of deficits that principally included breathing, swallowing, vision, balance and vocal issues
- Three years later, most of my deficits have corrected and improved. I like to say that, “Everything works. It just works too slowly.”
Whether they help bolster your confidence heading into treatment or spark familiarity-based comfort, here are a few highlights and recommendations from my experience:
1. “Knowledge is power.” - Sir Francis Bacon : The more you know, learn and understand about your tumor, your treatment or your recovery, will commensurately increase your confidence. Knowledge-based belief is a powerful tool in the hand of a patient. From discussing treatment options or recovery expectations to dealing with doctors, surgeons and insurance companies, patients will consistently find greater satisfaction in outcomes when they are prepared with facts.
2. Join a support group : Do this and do it yesterday, if possible. While true that every situation is unique due to tumor size, location, etc., there are folks out there that have experienced situations very similar to what you are facing – no matter what that is. There are all types of formats to accomodate any manner of need – local & national groups, email-based organizations and message boards. Whatever medium you feel most comfortable communicating in is the one you should pursue.
3. You are your best advocate : I went from never having a broken bone straight to brain surgery, so one of the biggest surprises to me has been how uncoordinated the medical community has been with respect to my case. My primary care physician, neurosurgeon, neurologist, insurer…anyone involved in my case has been very helpful, when directed. The more active patients are in pursuing answers and outcomes in their case, the more assistance they will receive. You are the gatekeeper and keymaster, which is for the best because who better to entrust your care to than yourself?
4. Remember the “-ive’s” : A healthy attitude is a major component of this journey. With that in mind, two things to keep close are Alternatives & Perspectives. My life is very different now, but the Alternative is worse. In addition to keeping that in mind, a healthy Perspective is to recognize all the benefits and blessings of your situation. Positives are much better than Negatives. Both are all around you, but it is up to you which one you choose to focus on.
5. A handful of patience is worth more than a bushel of brains. – Dutch proverb : On my first day in an inpatient rehab hospital I scribbled the word “Patience” on a dry-erase board in my room. Three years later I recognize that moment as one of particular insight, especially given where I was on my timeline. Understand that things will not happen as quickly as you hope, need or want. Whether it is nerve regeneration or hold-time when you call to schedule an appointment, everything moves at it’s own pace. Especially in medical matters, it is important to remember that even if there are no visible changes each day, that things are happening beneath the surface….slowly maybe, but it’s happening.
6. The unknown is a scary place : If I am being honest, most of this medical case is well outside my frame of knowledge. It has also been my experience that most of the decisions on medical care, rehabilitation and recovery have been driven by me. Not being certain on the best course of action and having those decisions possibly tied to your health for the rest of your life is powerfully intimidating. This is part of the reason that 1, 2 & 3 are so important.
7. Turtles get it : I was never one that lived in fast-forward, but these past few years have been in slow motion. Now that I am accustomed to the pace, I appreciate it much more. If you are not making time for life, take my advice and do so. You are not “too busy”, trust me. Courtesy of my condition, I now rarely miss an opportunity to tell somebody that I appreciate them, or to savor a great dessert. You have time for it, make it happen.
8. More is better : When speaking of medical opinions, the more advice you get, the better equipped you are to make appropriate decisions. Even if you hear the exact same course of treatment from two different doctors, you will benefit by having more confidence in the proposed plan after hearing it twice. Rather than wonder “what if”, seek out more opinions before you make decisions. Remember that knowledge is power and that you are your best advocate.
9. Two is greater than one : Speaking of more is better…try to always take a second set of ears to medical appointments. Doctors speak a unique brand of English that is often difficult for a patient to understand. Compound that fact with the all-to-true reality that they are frequently delivering startling but important news, and you have plenty of reason to need another listener during visits. Too many patients relate that they heard their doctor say, “blah, blah, blah…BRAIN TUMOR…blah, blah, blah”. Nobody blames a distracted mind during those times, but you should protect yourself by having someone you trust in attendance. If that is not an option for you, take a small voice recorder. It’s that important.
10. Different does not equate to worse : I walk differently. I have slurred speech. My rate of speaking is unnaturally slow. I used to be left-handed, but now have to write with my right hand because of incoordination. It takes me an hour to eat a meal. Yes, life is decidedly different. Not worse mind you – just different. I could make another list off this point alone, but that is another story for another time.
No matter where you are in your journey, I wish you the best of luck!
In 2011, Matt started a nonprofit organization to help raise brain tumor awareness – Hawktober – with one other brain tumor survivor. His goal is to give people what he didn’t have – information about their diagnosis and available treatments.