This week’s story comes to us from Richard, a member of the NBTS Patient Support Network. Richard, age 45, is a survivor diagnosed in 2002 with a
glioblastoma. He describes his experience below.
Where were you or what were you doing when you when you first diagnosed or had symptoms?
I
had been having headaches on and off for months. They gradually got
worse and one night, while driving home from work, my vision began to
get blurry. I called the doctor the next morning and asked him to
schedule a CT scan ASAP. After a couple of days, they squeezed me on a
Friday afternoon around 4:00 pm. Once the scan was completed, the
radiologist sent me straight to the neurosurgeon, who already had my
films and was waiting for me. When I walked into his office, he looked
at me and said, “wow, you look great! Most of the time, when I see a
patient with this much swelling of the brain, they're in a coma.” I
was admitted into the hospital that evening, and I had surgery that
Sunday morning. The tumor that they removed was in my right frontal
lobe and weighed approximately 5 ounces (about the size of a wine
glass).
What is one piece of advice you would have for someone who is newly diagnosed with a malignant glioma?
Do
a lot of research. Be your own advocate, stay positive, and don’t
allow those around you to be negative either. If a doctor tells you that
there’s nothing they can do except make you comfortable, get another doctor. Brain cancer is not a death sentence. There are doctors out
there who have had success treating these types of tumors.
What is the most helpful thing someone has said or did for you?
Someone
told me to stay positive. It’s a fact that when people get depressed or
give up chemicals are released in the brain that can do your body harm. The same is true for staying up-beat and positive. Don’t give up.
Optimism goes a long way for healing. Avoid those who will offer up
statistics, and by doing so, turn you into a number. When it comes to
treating these tumors, every person is different, and as such, they
can’t all be lumped in together. No two brains or brain tumors or
individuals are alike. Even-so, be the one that wins, and don’t quit
before the miracle happens.
What do you hope for?
One
of my greatest hopes is that through research they will soon be able to
find what causes these tumors, how they can be diagnosed earlier, and
treatments that are successful enough to hear the words “you’re cured".
Personally, I hope to live long enough to be a burden to my children.
Today my children are 16, 14 and 11. When I was diagnosed they were 7, 5
and 2. You don’t really think about these things until you’re forced to
confront your own mortality.
Describe your experience/journey in three words:
Strength. Tenacity. Perseverance. Survive. (I needed four words)
Did you name your tumor?
No, because I
thought that would give it more power. I do have my radiation mask on
my office wall. It serves as a great conversation piece!
If you could have your own personal theme song, what would it be?
“Ripple” by The Grateful Dead
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