"You are not alone." - Arbena Merolli, MSW, social worker at the Abramson Cancer Center
For some brain cancer patients, there comes a day when active treatment ends. That day can bring with it a myriad of mixed feelings, relief, happiness, anxiety and uncertainty. The end of treatment does not mean the end of the experience of having brain cancer.
Many people, even those who have been treated successfully, experience short and long term symptoms and effects of their treatment. These can include seizures, fatigue, memory loss, weakness and ongoing anxiety or depression. Some have physical or neurocognitive deficits that prevent them from returning to their old jobs or participating in activities that were previously important parts of their lives.
The second half of Focus on Brain Cancer Conference brought together a diverse group - nurses, nurse practitioners, social workers and a team of experts in integrative medicine--as well patients to address these issues, and the "new normal" that comes with them.
RedirectWhile some brain cancer patients return to their jobs, others find that they have to make changes. The panel of Arbena Merolli, MSW, Karen Albright, MSN, CRNP, and Lisa Lycksell, MSN, CRNP, conference panelists emphasized there are effective ways of controlling many symptoms, but that, in some instance, people have to "redirect," and learn to compensate. That may mean having a less stressful job, or one with shorter hours. For those who struggle with short memory issues, learning to take notes or write lists and reminders is often helpful. The panel urged patients who cannot return to work to find the things they love to do such as hobbies, activities and volunteer work. They also encouraged people to take advantage of available resources and get counseling to help them adjust to life after active treatment.
The three survivors who followed made those recommendations real and personal. One has had to modify his work life since his diagnosis five years ago, but now teaches CPR--and volunteers with his seven pound dog, Killer, as a pet therapist.
Another fights short term memory loss, but it has not kept him from getting his PhD in biology and teaching high school in the 21 years since he had a seizure on New Year's Eve and later learned that it was caused by a brain tumor.
And another survivor’s journey began in 2008 when she developed psychiatric symptoms, and had to insist to her doctor that "something was wrong with my brain," before getting the CT scan that revealed her tumor. Two years later, she repeated that struggle, this time with her insurance company before learning she had a recurrence. In that time, though, she has had two children and started a successful business.