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Support group a safe harbor for those living with brain tumors

Douglas Armstrong was in the checkout line at a local pet store when he suddenly got a chill and goosebumps. The Tipp City resident knew something wasn’t right, but outwardly, his fellow customers likely had no idea anything serious was even happening.

“It only lasted 20 seconds or so,” said Armstrong. “I never lost consciousness but in my mind I was screaming, ‘I’m having a seizure’.” 

Like so many do when something medically frightening happens, Armstrong tried to rationalize it away as being the result of having not eaten all day. But in the end, he wanted to be cautious and headed to the Kettering Medical Center emergency department

After running some tests, a staff member came into Armstrong’s room and pulled an image of his skull up on the screen. 

“I said, ‘oh my…there it is’,” said Armstrong. 

“It” was a brain tumor. 

What you should know
According to the American Brain Tumor Association, 78,000 new cases of primary brain tumors are expected to be diagnosed this year alone, with 25,000 of those being cancerous. Unfortunately, Armstrong’s tumor would be one of them. 

Enter Marilyn Reed, BSN RN case manager for The Kettering Brain and Spine Center. With over 25 years of experience, the neuroscience nurse specialist assists patients from the time they are diagnosed.

“Marilyn was there with me from day one,” remembered Armstrong. “She was a wealth of information when I needed it most. It was after the craniotomy surgery that she told me about the support group she led for people with brain tumors.” 

Strength in numbers
The Brain and Spine Center at Kettering Health Network provides the most advanced and comprehensive treatment care for diseases and disorders of the brain and spine. The Southwest Ohio Brain Tumor Support Group is an important component of that comprehensive care. 

For over 20 years, the support group has encouraged patients and caregivers to share their experiences on coping with brain tumors at monthly meetings, which are held at Kettering Medical Center. Studies have indicated many benefits to participating in a support group, including gaining a sense of empowerment and control; developing a clearer understanding of what to expect; being able to talk openly and honestly about your feelings; and feeling less alone, isolate or judged. 

Armstrong said that sharing experiences about things like surgery and medication side effects, recovery challenges, and discussions on food, nutrition, exercise and rest, were incredibly helpful.  

“For me, one of the big things was dealing with fatigue,” said Armstrong. “Through sharing stories, I learned that this is a big factor with most brain tumor patients.”

According to Reed, the group is about so much more than what happens in the hospital – it’s about how to live with or persevere after a brain tumor. 

“It’s hard to see past today when you’re in the throes of treatment, so it’s good to see and share stories with people that have gotten beyond that point and are doing well,” said Reed. 

The caregivers, who often also feel alone and isolated, find the meetings a great source of support and information, as well. Reed sometimes brings in guest speakers to discuss things like nutrition, wellness, stress management, or the latest advances in brain tumor treatment. 

“Everyone is welcome, and many of my family members have gone over the years,” said Armstrong. “What makes any group successful is a great facilitator, and Marilyn has been doing this for several years. People obviously feel the support, or they wouldn't keep coming.

“At the beginning, just knowing I had cancer was very hard to deal with mentally and emotionally,” said Armstrong. “By going to the support group meetings, you get to be with others who have experienced the same things. You learn that you are not alone, and there are people out there willing and able to help you.”

Seeking information or support for yourself or for someone you love who is living with a brain tumor? Click here to visit the Southwest Ohio Brain Tumor Support Group website.