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My wife was diagnosed with glioblastoma in March of 2002, and lived nearly 4 and one half years. We worked to live life as fully as treatment and disease would allow. Friends and their support were a key. Friends want to support, but may not know how or when, so it was part of my role to keep them involved, which they did wonderfully. Support for the caregiver is important. There are lots of tools, communication and otherwise that can be used. Lifts, car chairs that turn and lower to get in and out. Caringbridge.org is a way to let people know what is going on where you can say what needs to be said, and they can check in as often as they want. Musella Foundation sponsors a "virtual trial" and keeps track of all the latest trials, etc. There are email lists that allow people all over the world to share their concerns, questions, frustrations, grief, support, hopes, victories,etc.

posted 4 years, 12 months ago
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