Taking Your Life Back After Ependymoma

— Categories: Ependymoma Community     Posted on December 7, 2023

Ependymoma Community Blogger Matt Cotcher describes a view into the complexities of reclaiming life after a brain or spinal tumor diagnosis and treatment. Cotcher empowers readers to take an active role in moving forward. He shares "Acknowledge the change that comes with treatment and focus on small tasks that can be accomplished." Read more to learn about his personal experience with accepting change and taking steps to reconnect with life as he knows it.

A recent conversation with a friend who was just diagnosed with cancer got my gears grinding on multiple fronts. Our conversation focused on how to “Take Your Life Back” after cancer and treatment. Yes, here was a man talking to someone who has survived multiple ependymomas, surgeries, and treatments, and he was asking about how to reclaim life before starting treatment. What a fantastic perspective - heading into a daunting trial with a focus on what comes afterward.

Once I recovered from his enthusiasm, the reality of his questions quickly set in - how do you get your life back? When should you start? How do treatments affect the answer? It’s a wide-ranging topic with a myriad of variables, but there are a few general guidelines that have been helpful to me.

The honest answer to “when” is “as soon as you’re able to”. Recognizing that everyone’s timeline is unique makes that an extremely open-ended response, so let’s explore the thought…

Having a brain or spine tumor and the resulting treatment inevitably leads to one of my least favorite clichés, a “new normal”. It’s an overused term, but there’s no better way of stating the reality that tumor treatment in your brain and/or central nervous system is impactful to the degree that it fundamentally changes patients. With the understanding that brain surgery can and will cause permanent changes in people, the only correct answer to when to reclaim life is “as soon as you’re ready”.

An important side bar to the idea of a new normal is that it takes time to grieve the loss of the life you had before the diagnosis. Patients and caregivers need to acknowledge this fact as it can be very painful to move through that acceptance, but it’s critical to do so in order to start reclaiming life.

As my neuro-oncologist often says, the brain and spine are high priced real estate. In other words, tumors have significant impacts but they are much different depending on a tumor’s location. Using someone else’s recovery timeline can lead to frustration. What was beneficial to another patient, might not be helpful in a different case.

Additionally it’s instructive to note that waiting to re-start life until after treatment is a natural response. Understanding the need to maintain some daily responsibilities is often counter-intuitive to the comfort of being immersed in treatments.

It’s also important to recognize that there are good and bad reasons to delay reclaiming life. Among the good reasons: being safe, and staying focused on treatments and a medical schedule. When receiving daily radiation or chemotherapy, it can be difficult to manage the smallest of tasks - give yourself the grace to undergo treatment and to know if that’s all you can handle at the moment.

Equally important is to have a reminder of the need & desire to do more when able. Understanding the need to reclaim life begins with realizing that you can do so. Whether it’s tying a string around your finger, or hanging a homemade sign on the wall, give yourself a visual reminder that your life is waiting for you beyond your current circumstances. 

Some people find meaning in images such as a butterflies, birds, waves, and mountains, among others. If you draw inspiration from a visual reminder, absolutely use it as a boost in your effort to re-engage with life. Holding on to or keeping a visual cue near while you choose to be present in the life you have today is instrumental to the process of moving forward.

Looking back on my initial surgery and my recurrence, one of my main faults was waiting until the perfect time. There is no “perfect time” other than *right now*. It was easy and comfortable to wait until everything lined up. I needed one of those daily visual cues mentioned above to break me out of the cycle.

A challenging aspect of regaining life is that there is no substitute other than intent and effort. Adding recovery to taking back daily activities, a schedule, and other aspects of living is both daunting and difficult. After several months of radiation, my daily calendar seemed unimportant. Again, a visual reminder would have served me well at that point. I needed something to shift my focus from present circumstances to “tomorrow” and all the hope and promises that come with it.

Returning to life implies going back to the way things were at a previous point in time. That’s a trap! Acknowledge the change that comes with treatment and focus on small tasks that can be accomplished. Attempting to go back to the way things were before treatment can lead to a false goal. Instead, focus on intent and effort, letting those two actions propel you forward.

Another pitfall to avoid is the illusion of being in control of things. As much as I like to think I can control all the variables impacting life, reclaiming life would have been smoother if I had ceded that idea. This topic is broad and deep enough that it could be its own article! Suffice it to say that doing what you're able and staying focused on a goal does not require control of circumstances.

In summary, taking life back is an ongoing effort. I’m still not done and that’s because life is evolving and the target keeps moving. And that’s okay! To make lasting change in any area of life, like diet or fitness, requires constant effort. There is no magic pill. Not for losing weight and not for reclaiming life after ependymoma. Staying focused on your goal and maintaining momentum is the beginning to a transformation without an end.

Read more from the Ependymoma Community Blog.

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