It all started with me not being able to smell a dead rat in my house. I went to the doctor, and he decided to do a brain MRI to find out what was going on with my sense of smell. I was not too afraid of hearing the results because I am strong in my faith, but hearing the words “brain tumor” was a little sobering. I was not sure what that meant for me. After talking to a friend, I looked up the Brain Tumor Network and reached out. It changed everything.
I remember the first call to the Brain Tumor Network. I felt like someone understood and was willing to walk through this with me. The comfort I felt after the call brought tears to my eyes. It was like I knew I was not in it alone. I knew I had family and friends that would walk with me through it, but I felt like the Brain Tumor Network’s navigators and other patients would really understand. Patient navigator Eden Mock told me that the Brain Tumor Network would be my advocate. Eden said she would make my appointments and help me work through making a decision. This was what I needed to hear at that moment. I was relieved when they sent me a list of doctors. I trusted the referrals and didn’t feel like I was picking a doctor like a needle in a haystack.
Attending the Brain Tumor Support Group of Northeast Florida was incredible too! The people are so supportive of one another, and the stories are so encouraging. I want to encourage anyone with a brain tumor diagnosis that the caregiver support group is incredible too. My husband, I am sure, was processing it alone, even though family and friends were aware. After he attended the caregiver portion of the support group, I saw a difference in him. He felt heard and was able to know that some of the thoughts he was processing were okay. He actually enjoyed the group time.
I am so thankful for the day that I found the Brain Tumor Network. They are a great asset in a time of uncertainty. The support available from staff and support group members is incredible! Thanks, Brain Tumor Network, for helping me in my season!