Below are some of the common themes of emotions felt by patients. Click on an emotion to read more about what patients and caregivers have to say.
Fear
"Fear of the unknown has been the most difficult part of my journey. Today, post-surgery, I try to live life to the fullest but continue to hear noises that sound like chirping crickets. At times, the noises grow so intense, I want to take a hammer to my head. I think that I will always worry that the tumor will come back, and I'll have to have another surgery." (Sandy Kaufman, 58)
"I never had any serious health problems prior to being blind-sided by a brain tumor. I tried so hard to be brave for my teenage daughters but was sick with fear. The very worst moment was riding down to brain surgery. When I awoke, my husband was at my bedside. He told me that I had been in a coma for almost 10 days and had ended up undergoing two brain surgeries: the first for the resection of the meningioma, the second to correct excessive swelling." (Cyndi Douglas, 47)
"Hearing I had a brain tumor brought back memories of a family member who died of brain cancer within seven months of diagnosis. Not knowing what my outcome would be, I was frightened for my four children, who as a divorced mother, I worked hard to raise on my own. My whole life has been turned upside down. As a type "A" person, it's hard to give up your independence to a brain tumor, but everyday when I wake up, put my feet on the floor, hear my dogs barking and smell the fresh air, I realize how lucky I am to be alive." (Deb Gronostalski, age not provided)
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Uncertainty
"The relationship between my meningioma diagnosis and neurofibromatosis (NF) has left me to wonder whether I will develop other major tumors along my central nervous system. As a result, I've become much more aware of my health and am a better caretaker. My advice to other victims would be to trust their feelings; ask for help when they need it and accept help with a smile." (Stuart Gilkison, 38)
"Being a physician, it's a humbling experience to take on the role of a patient. Also, I've always been 'the leader' in my family, and now I have some self-doubt. I've found that in the medical field, when you say you've been diagnosed with a brain tumor, the response is often 'oh, it's just a meningioma.' But this diagnosis is very difficult to live with. A meningioma is life changing. You LIVE WITH it every day." (Physician, no age provided)
It was difficult trying to explain to my family a diagnosis that I didn't understand; yet being the nursing professor, I had always been the one to provide the medical explanations. These days, the difficulty lies in the period just before my six-month scan. Being on 'watch and wait' for my remaining tumors, however, is not much different than knowing I had an atypical tumor that could recur. In fact, I believe that anyone who has had brain surgery is on 'watch and wait' for the rest of their lives. (Peggy Flannigan, 55)
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Despair/Resilience
"In addition to the seizures, headaches, and having to walk with a cane at 46, the most difficult part of my meningioma diagnosis was its impact on my family. We currently have a FOR SALE sign in front of our beautiful house, and with my career taken away, went through bankruptcy last year. Still, I wouldn't change a thing. In addition to meeting so many wonderful people and growing closer to my friends and family, I've learned that the research is critical for the children of meningioma survivors." (Janet Chavez, 46)
"I felt like I had lost my independence when I was diagnosed with a left frontal lobe meningioma. Today, nearly two years after surgery to remove the tumor, I have problems with my short-term memory, struggle with fatigue and am easily upset. But I am so happy to be alive. From this experience, I've learned that life is precious, to take it one day at a time and live in the moment." (Darcie Tossetti, 52)
"My meningioma is inoperable due to its location. As a result, my doctor's recommendation continues to be 'watch and wait.' The most difficult part of this diagnosis is the knowledge that something is growing in my brain. The tumor is slowly clamping down on the nerves to the right side of my face, causing 'tics,' which I control by taking AEDs. I ride a rollercoaster of emotions, going from feeling depressed to determined that I can enjoy life and won't let a tumor limit me." (Carolyn Smith, 55)
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Determination
"Surviving a meningioma led me to find another life purpose - to use my writing abilities to heighten meningioma awareness and raise critical funding with the goal of one day finding a cure. So little is known about meningiomas, and so many survivors faced with essentially a life-long recovery are left feeling helpless. For these reasons, I encourage victims to educate themselves and join a support group. Let others help guide you through the many aspects of this personal journey. And, most importantly, embrace life and live with no regrets." (Liz Holzemer, 39)
"One of my neurosurgeons told me that employers look differently at people who've had brain surgery, and I would have to go back to work at 110%. Well, I've done that - probably to a fault. Although I've lost vision in one eye, endure constant headaches from a recurrent tumor, and at times struggle with memory loss, I work at least 40 hours a week. I've learned that the quality of life isn't always about what cards you're dealt - but how you play them. I may only have a full house draw, but I'm going to play it like a royal flush." (Janet Ledford, 51)
"Perhaps the most significant changes in my life were the loss of my identity as a 'healthy' person and my decision to focus my career on educating people about brain tumors. Today, post-surgery, I experience more fatigue and other invisible changes. However, after meeting literally hundreds of other meningioma survivors, I know my situation could have been much more severe. I feel incredibly blessed to be able to use my personal experiences as a means to help so many other people affected by all types of brain tumors." (Nancy Conn-Levin, age not provided)
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Gratitude
"I am thankful for every day that I get to wake up and live! I am one of the fortunate who believe the quality of my life is far better post-tumor than pre- tumor. My medical setback did not define who I am nor did it paralyze me into inaction. Rather the opposite: It stimulated my thinking, compelled me into assorted action and made time even more precious." (Steven Haley, age not provided)
"Hearing 'you have a brain tumor' laid me out psychologically for quite a while. Making an immediate transition from a healthy, vibrant, functioning adult to someone facing the most frightening of surgeries was not easy. Unable to reduce the fear I was feeling into words, I became withdrawn. Today, post-surgery, I have absolutely no deficits, though I know that could change in an instant. I know I am one of the lucky ones, at least so far, and I thank God for that daily." (Steve Aker, 60)
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