The Margaret Gray website gets a new home page!
updated 21 November 2000 by Margaret's husband, Dennis Argall
- for our daughter Liz's website click here
Touch the ice cream with the cursor if you can... Black and white photo Melbourne Age 1954?, colour photo Perth 1970
The three earlier 'welcome' pages can be found here, here and here.
This is a website dedicated to recording Margaret's fight to defeat the most aggressive of brain tumours, a glioblastoma multiforme grade 4, diagnosed on 27 April 2000.
A group of us (patients, carers, family, friends) have formed a new Australian Brain Tumour Discussion Group. You can get information by clicking here... - if you have not registered with eGroups.com you may need to do so to get access.
You can join the discussion group here. It is possible to join the group and then set your preferences so that you do not receive all the mail at home, but instead are able to read it at the web site, if and when you wish to do so. Then you will have access to links to a large number of information sites on brain tumours, as well as links to most (to our knowledge) of the other personal or family web sites around the world reporting as we are on a loved one with a tumour.
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Five years ago the accepted medical practice was to provide
the patient an amount of brief palliative support for this kind of tumour,
knowing that it could not be defeated.
This is, to some extent, and in some places, still the case.
Certainly it remains the case that there is so far no cure, no drug or other treatment that will eliminate the tumour completely.
It also remains the case that individuals diagnosed with this type of tumour may find themselves in very varied circumstances,
depending on their health, their attitude, the location of the tumour and the behaviour of the tumour itself.
But there is a lot of research and some new approaches out there now offering prospects for some survival for some time
- perhaps long enough, for some, for some fundamental breakthrough in understanding and treatment.
Margaret's tumour struck at age 50, when she was active and
The symptoms included sinus pain, weariness and foggy thought - things hardly unfamiliar to folks our age, but becoming persistent and disturbing.
The tumour was found by an MRI scan and was located in the left frontal lobe.
While we humans are very proud of our frontal lobes, this is the part of the brain with the most redundancy, the most capacity to relearn and the minimum interference with basic animal functions, motor performance, sight, etc. So, as tumour sites go, not bad...
This kind of tumour [glioma] grows in the glial, or support
cells of the brain. It does not alter nerve cells,
it destroys by pressure from its own growing size and from fluid (oedema) it produces.
They are classified, according to their aggressiveness and malignancy, from Grade I to Grade IV.
Medical science does not know why or how they occur, or how
to defeat them. The problem lies in the fact that it seems impossible to destroy
or remove, by surgical operation, radiation, or chemical treatment, all of the
tumour cells (partly, too, a problem of not understanding the basis of what
is likely to be an ongoing tumorigenesis). Remove a notional 99.9% and you leave
behind a notional billion tumour cells.
At Grade IV, in glioblastoma, you have cells which can duplicate themselves in 15 to 35 hours,
tumours which, at their most alert and vigorous, can double in size in a week.
As I write this, Margaret is asleep (since 8pm) on the first
night of treatment with the antiangiogenic drug thalidomide (see News update
Prior to this new treatment, Margaret has had:
3 May 2000 - a 'debulking' craniotomy, removing say 80% of the tumour, avoiding damage to adjacent brain cells bound to the tumour's 'skin'
June-July 2000 - six weeks [60Gy] of radiotherapy, which left Margaret exhausted to late August
since 4 July, continuing - Chinese herbal preparations, anti-tumour, anti-inflammatory, anti-oedema, pro-immune system
2 September 2000 - gamma knife radiotherapy in Guangzhou, China
6 November 2000 - second debulking craniotomy, removing an object the size of the original tumour, containing residual/recurrent tumour, and dead material (necrosis) from all the therapies applied earlier - a whole mess of stuff, removed from all accessible parts, including the ventricles (using a guided suction tube and an ultrasound device to dislodge material to be vacuumed up).
A relatively aggressive operation, removing all visible tumour material, providing an excellent opportunity now for moving fast with chemical treatments..
11 November 2000 12 November 2000 - the staples came out on the 13th
Through all this Margaret has been singlemindedly determined to stay alive, to fight the tumour rationally or irrationally
( whatever the differences may be between such notions) by sheer determination, obstinacy, rejection of fate and pursuit of treatment options.
Or rather, she has shown the determination and we have together pursued the options,
in a way which I do not think I could do for myself - were I the patient.
I think - we think - that had Margaret not acted as she has and pursued treatment away from the common palliative pathway,
she would probably not now be alive - indeed, she was given perhaps as little as two weeks to live on 31 October, after all the treatments to that point.
Her tumour is a fierce and also obstinate contestant. Glioblastomas mainly target the intelligent, they seem themselves very smart.
(Yes, cells have intelligence, and I'm sure some are smarter than others.)
It has been evident after this most recent surgery that Margaret,
who has had few days well or without medical appointments since April, is suddenly
'well' and clear headed in a way she last seemed way back in February - though
a bit knocked around by head trauma and medication.
She is very very pleased indeed to be alive, though a bit unnerved by the hard road still ahead...
We are all looking forward to a Christmas now, which we did not know we would have six months ago.