I have flagged a few here. These groups provide much in the way of research, statistics, which I could not find when I first tried to help my father.
- Brain Tumour Foundation of Canada - information, supprt, message & chat rooms
- N. A. Brain Tumour Coalition
- Int'l Brain Tumour Alliance -lobbying work, e-newsletters, conferences and events
- Brain Hospice Website (USA)
- *Brain Tumour Symptoms - post in this blog
- Brain Surgery photos - he really had photos taken!
- Brain surgery video -then he had the surgery videotaped...
- Brain Tumour anatomy
- -also FAQs, publications (i.e., PDF fact sheets), treatment info, educational programs
- MRI demo of brain loss of function
- Dying Symptom Timelines
- *Dad's pain symptoms -post in this blog
A brain tumour causes dementia, much like Alzheimer patients. The brain cells no longer function without adequate rejuvenating oxygen from circulatory system. The tumour dad had was in the prefrontal cortex and prevented many cognitive functions, yet he could eat, breathe, swallow, pump blood (autonomic functions). Many patients with dementia live for years, since the body continues to do the work it has to do to survive. He was unable to remember the function of objects: TV clicker, phone, and, eventually, fork and knife. He could not process the action of cutting up his food and feeding himself. He would try to put the entire piece of toast in his mouth.
The media is full of stories, and many people have written autobiographies, about fighting and conquering a brain tumour. Age is a huge factor. At age 82 my father could not fight this tumour that regrew.
The tumour cells could not totally be removed in 2003, due to the location on the brain, and it was inevitable that they would grow back. It did so in 2006. He was not given radiation until it was too late and it was, perhaps, contraindicated based on his age, health and comorbidities. My mother was dying of cancer at the same time, dad was ill with arthritis, and the chemicals really messed up his brain. The pills he took (8 every morning) made him irrational, erratic, anxious and incredibly upset. Essentially, his quality of life deteriorated proufoundly. I was unable to talk to him and move through the process with him of reflecting back on his wonderful life.
What I did get out of this was a profound respect for him. I honoured him as much as I could. We went in to his Long-Term Care home and fed him meals as much as we could. I know that he truly appreciated our visits. His friends and caregivers told me he would often ask if I was to visit that day. Sometimes just being there is all you can do. This, too, is a gift.