welcome to ozbraintumour.info
information for users of the
brain tumour support group
a large email group established in 2000
based at Yahoo
—click here to visit our email group site and join
painting by Ruth Harvey
depicting a journey into a wild Australian forest.
We also embark on our journeys...
There is no 'correct' way to deal with life with a brain tumour, no single passage.
The most important of all rights in dealing with life-threatening illness is your right to choose your path, paint your own forest.
Often people will say “never give up” — urging anyone to continue aggressive treatment. Perhaps, however, the most important thing 'never to give up' is control over your own life.
Because most diagnoses are of high grade malignant glioma, these things become the focus of discussion.
There are other less common adult tumours and there are also children's brain tumours. We will endeavour to expand resources for these... but always, we find, the greatest resource is to find someone else dealing with your situation. We have hundreds of members and meeting someone in your own situation is generally possible when you introduce yourself to our email group.
It is unfortunately the case that malignant glioma is among the most difficult forms of cancer to fight. Doctors do not know the cause. Doctors do not have a cure. Thus what doctors are able to do is severely limited. It is also a sad matter of record that in these diagnoses, involving both cancer and the mind, family relationships are most vulnerable and tested.
We live on a planet where life can be tested like this in many ways. We are generally so protected by the technology and products and entertainment around us. Suddenly with this kind of news, of a brain tumour, these everyday comforts fail us, we suddenly experience violent personal climate change.
How each of us as individuals will deal with this diagnosis is likely to reflect how we deal with everything else in our lives. However, this kind of life-threatening diagnosis often throws a great searchlight on our lives and we may change... for better or worse!
While the person with the brain tumour is of central importance, those around have their lives impacted. We need to make space, shift up the bench, so all, including children, can respond and learn and grow. Decisions on the resources to be thrown at the disease also necessarily take account of the situations of others in the family and of their futures.
One of the papers out there on the web, to which we will refer, has this lovely conclusion, which may be a good rule for life, in any situation:
The goal for all those attempting constructive intervention should be successful maintenance of open, honest, and warm relationships with the patient and among themselves.
1. The issues we face; how we face them...
2. Who is in this group?
What is relevant to my situation?
3. What is cancer, what is a brain tumour and
what does it do?
4 .The 'no cure' dilemma for the doctor...
and the patient
a) types of brain tumour
7. Treatment regimes and options: perspective
a) Biopsy, surgery, repeat surgery
b) Radiation therapy
c) Chemotherapy and the role of the oncologist
8. Medical Management, Quality of Life
a)To minimise the effects of the tumour on the brain; in particular, to reduce the 'mass effect' it causes, and to reduce the prospect of seizures: overview
b) Dexamethasone ('dex')
c) Dealing with Seizures - ACTION STATIONS
d) Do I call an ambulance?
e) Anti-seizure medications
f) White blood cells, platelets, DVT
9. Sex, drugs, reproduction
10.Recovery and rehabilitation
a) Thinking about support
b) Law, wills, power of attorney, Centrelink, etc
d) PBS, Medibank; private or public patient?
11. Life in crisis
a) relationships, control, children, carers
12. Living, dying, grieving
13. Quality of life, quality of death; dexamethasone
NSW Cancer Institute
Support and Education Forum May 2010
NSW Cancer Institute Support and Education Forum, October 2008
NSW Cancer Council information on Brain Cancer
These notes prepared by Dennis Argall 2009.
Nothing written here is a substitute for medical advice.
No advice or
comment should be regarded by any
reader as other than personal opinion or personal understanding of
Read with care, and critically.
• my late wife Margaret, much missed but still in my life and the lives of others
• eight years frienship, love, wisdom and insight
from members of OzBrainTumour
some still here, some gone
• those who helped and supported in the drafting of this: ...
• Ruth Harvey for her paintings on this and other pages.