The truth about having a Brain Tumor

Someone who is part of the online brain tumor support group I belong to just sent this message to the group, and I want to share it here because there's no better way to describe what it's REALLY like to have a brain tumor:

I've noticed (acutely in recent years) that society's pity and compassion for an individual largely depends on the outward signs of their disease and condition.  Oligo patients tend not to have external indicators of their disease, at least not until the end of their course.  We generally don't talk strange (at least after SLP), we don't walk strange, we often appear perfectly healthy, our dominant chemotherapy regimen (Temodar) is quite mild, and a lot of us appear to be perfectly normal, healthy individuals.  But we know what we face: the uncertainty of recurrence, the enormous anxiety before MRIs, certain subtle deficits not easily noticed by others, health insurance issues, the greatly diminished likelihood of enjoying retirement, etc.  That is not insignificant suffering.  And a lot of us are probably in worse of a condition as some people with obvious indicators of their condition who can nonetheless expect a healthy, long life (and no MRIs, which I have come to liken to death row probation hearings).  We miss out on a lot of sympathy, compassion, and pity as a result.  


I want to add that we also fear not being around to see our children get married, or any grandchildren they might give us. Those are my worst fears.