1: The Issues We Face
For most people, the brain tumour diagnosis is like a bolt from the blue... or we find ourselves on a cliff edge, staring into an unknown sea.
Again, most often, the diagnosis will be at or rapidly followed by appointment with a neurosurgeon, then a debulking craniotomy (an operation in which the bulk of the tumour is removed), pathologist's examination under a microscope (histology) of the tumour material, precise diagnosis, advice of plan of action, in an organised or fragmented way... meetings with social worker... and every other person of whatever kind in the hospital world... in a whirlwind. No matter how well this is done by health professionals it is shock after shock, brain rearrangement, life rearrangement.
And all that happens before arriving at a support group of any kind, including this group. Welcome, we know your experience if the last paragraph rings true. Some people arrive here much later. If you find this group helpful, please pass news of it to others. We are not an organisation. If you would like at any time to pass around a flyer for this group, click here to download an A4 sheet and then use scissors or guillotine to cut up... 3 flyers per A4 sheet.
We are not in a perfect world and none of us is perfect and here we are dealing with a very difficult situation and very steep learning processes. All of us. We all have reason to worry, to ponder, to shriek or cry or rejoice in the night... this is the place to put it in writing, the group that appreciates and respects your sharing.
Unless we make radical changes in our lives, we will probably deal with this situation much as we do other things in life, though our reactions may be writ large and we may discover that we rise and do things we cannot imagine we might have done. Of which we may be proud or not. There is an impact on friends and family. In part from what we ask or do not ask of them, in part because of how the diagnosis confronts them.
A question worth asking is: “Can I make best use of my days with quality of life, or will they be taken up with medical procedure?”
The answer has to be that the medical procedures must enable and support quality of life or they serve no purpose. You chase both. You balance both. You are driven at each step by outcomes and plans and options and hope. This is important to consider in a situation where aggressive malignant brain tumours, while they may take different lengths of time to grow and cause damage and may be variously vulnerable to treatments, cannot be cured. Life cannot be cured, of course, it is a terminal situation; make the most of it, make the most of choices.
In Australia, in the best brain tumour treatment centres and increasingly elsewhere, we have a standard of medical treatment options covered by Medicare and the Pharmaceutical Benefits Scheme, via public hospitals, ahead of most of the world.
You can choose to run and run and spend and spend to find other possible treatments, but do count the costs, in quality of life and use of time, in assets of family. Every situation is different. We have members who have survived extended periods with just the conventional treatments; we have others who have survived with additional treatments. We have had members pass on who have had many additional treatments, as well as members who had only had the conventional regime.
Be careful of compassion-driven instincts to say “we must do this or that!” Treat decisions in a careful and businesslike manner, taking into account all family resources and needs.