Hi, I'm Sandy. My hubby was diagnosed with a glioblastoma (brain cancer) that is the deadliest cancer. We had surgery, radiation and chemo. We are now on maintenance chemo. After the initial kick to the gut, I had 2 choices: Fight or
Flight. I chose to fight. After 45 years of marriage, how could I not? We are confident in our doctors but needed to take control ourselves. I've read everything I can get my hands on, which had led us to Duke Cancer Center for possible clinical trials. The tumors usually come back. So far, we've been blessed that it hasn't but, if it does, I believe Duke can help. The first thing I recommend is to get an accordion folder and keep copies of EVERYTHING, including
Dr notes, discharge summaries. The doctors have been surprised at how organized we are (everything is WE because it's our fight). I've even made sure I keep the dates of when chemo was/is and MRI dates, to include copies of the disks and reports. It's impossible for the patient to keep up with everything and to absorb everything. That's the job of the caregiver. It's a huge job but worth it when you love someone. The best advice I can give? Try to maintain a normal life and make sure the patient gets out and about, exercise etcetera. They can't be allowed to sit around, feeling sorry for themselves