Progression of Symptoms
The journey with a Brain Tumour is an emotional roller coaster for patient and caregiving family alike. Anyone who has been a part of this experience understands the difficulty of these ups and downs. But no matter how long or hard the journey...no matter what the grade or type of tumour...when the road narrows and it is time to think about end-stage comfort, no one feels truly ready for the letting go.
This page is not intended to take hope away from those who are new to the diagnosis or who are still fighting to defy overwhelming statistical odds. I wish them distance - and victory!
Rather, it was created so that caregivers approaching this important new junction may recognise and understand end-stage events that are likely to happen, as well as find support in providing the best of loving care during this critical time. I have shared not only my own experiences with my father, but also those of literally hundreds of others who've been there as well.
I am not a medical professional. I have nothing to sell. I came to this through my father's own journey with a GBM (1999-2000) and the learning that continues as others so generously share with me.
Throughout my Dad's battle, I educated herself on radiation and chemo, side effects, and symptoms, feeling fairly well prepared at each turn. But when it was time for the referral to hospice care (Diane is based in the USA), I was at a loss. There was no information, or it related only to general Cancer death at best. Hospice was a marvellous support to myself and my family, but their knowledge about brain tumour death was no better than ours. They didn't see it coming, and so, neither did we. Since then, in working with other brain tumour families, many things have come to light which now enable families to better prepare and to make the most of the time that remains. That is my wish for all who read this page.
The information and advice provided here will, we hope, help you identify your own questions that can be shared with your loved one's medical team.
One question asked most often is "How long?" While the end stage path varies from person to person, there do tend to be commonalities that can help us to "see what we're seeing," and often, to estimate how much time might remain.
Death to other forms of cancer tends to be much different. There is likely to be a longer period of weakening and decline, and more of a heads-up from the vital signs. With other cancers, there tends to be an organ-by-organ alert that the body is losing the battle. In contrast, some brain tumour patients - especially those in their 20s and 30s - might still be conversing or even walking themselves into the bathroom just a couple of days before their passing. Nurses whose experience has been largely earned with other cancer care aren't always aware of one critical point: the brain, as a master circuit breaker, has the capacity to shut down the body in one motion, without taking it organ by organ.
So, how long? This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumour journeys have already been quite long tend to spend longer in each of these stages.
This information is reproduced with the kind permission of Diane Phillips