In 2000 we established the Australian internet support group OzBrainTumour. There is now an information site here.

Margaret Lilian Gray
10 August 1949 - 9 September 2001

- passport photo 1984

Margaret died on Sunday 9 September 2001, peacefully and with great dignity and style,
looking beautiful, and in a manner and place of her choosing.
Until days before, when the disease progression became so great as not to be defeated,
she had shown persistent courage and determination to stay alive.

Go to NEWS for an account of the funeral.

When first diagnosed with a brain tumour in April 2000, Margaret made clear that she disliked the secrecy surrounding major illness and that she wanted people to understand what was going on. So we kept a public diary here in these pages, as we ourselves learned the issues involved in fighting brain tumour. Through the internet, we made many friends around the world dealing with the same kind of illness. Much is said that is foolish about the internet. The internet just links people who have the usual degrees of human inadequacy, and thus it depends on people whether the internet leads to greatness.

Such is life; people opposed to change abolished street lighting and public sanitation in some parts of Europe after the defeat of the reformer Napoleon - we can't be amused by that and speak foul of the internet at the same time. It is very clear from our experience that the internet is a basis for the exchange of information and ideas and affection and care which is altering the way the world will in future deal many things, including health.

The extent that this change is for good or for worse depends on those who use it. We have sought to use it for good; Margaret clearly has inspired many and the promulgation in this place of what we have learned along the way has helped many others.It is evident to anyone dealing with cancer of any kind that medical science knows very little about the causes and the management of such disease, probably because the basics of cell biology are not well understood.

Unprecedented amounts are spent daily on research into disease. Some of this yields commercial profit and may prolong life for some, but this should not be confused with real understanding. Gene research is popularly held to offer so many hopes, but there are other areas of cell behaviour which go neglected and may be more important. Hopefully the broadening of community discussion, on the basis of more common knowledge of the inadequacies of understanding of how organisms like us run, will lead to a future where medicine, as practised now, will be regarded with the kind of amusement that we at present show for medical 'science' of 100 years ago.

We live in Australia which has a wonderful public health system, reflecting fairness for all. We must record our indebtedness to that system for providing Margaret with access to a great public teaching hospital offering a world standard of excellence as a brain tumour treatment centre, doctors and nurses who became 'family' to us. We must also express the concern we developed over the same period that public policy and public attitudes, on present trends, could seriously deprive Australia of the intellectual as well as democratic asset that exists in the public health system. There is very little in the private hospital system to compare, or that seeks to compare, with the dedication to intellectual specialist excellence in both nursing and doctoring that the public health system provides.

This web site also records my own great love for Margaret. My job as a carer has been the greatest job and the finest privilege I have experienced. We need to recognise more clearly that in dealing with health, the carer has a crucial role. Doctors and nurses are in no way as well placed to understand a patient wholly and we must never expect that of them. We would improve the effectiveness of the health system enormously if 'caring' became a natural part of education, as part of a general acceptance of personal responsibility for health.

To the extent that there is such anxious dependence on doctors and such popular demand for infallibility of the medical profession, we blind ourselves and doctors to the inadequacy of present knowledge and treatment and we reduce the prospects of necessary change and improvement. ..all this is for Margaret,

with abiding love and profound thanks
for the honour of caring for you
on this our last great adventure.
I say goodbye, knowing that you will remain in my heart
and the hearts of many others

Dennis, 4am Tuesday 11 September 2001.


 

(the following reflects the situation as at August 2001 - the NEWS page carries the action)

Margaret Gray

2001: A Continuing Brain Tumour Odyssey
- an account of Margaret's fight with a glioblastoma multiforme grade IV,
the most aggressive of brain tumours - diagnosis in April 2000, debulking craniotomy 3 May 2000; 
conventional radiotherapy (30Gy) June-July 2000; Chinese herbal remedies since June 2000; 
gamma knife stereotactic radiotherapy in Guangzhou 2 September 2000;
second debulking craniotomy 6 November 2000;
thalidomide nightly since 21 November 2000; 
temozolomide 5 days in every 28 since 18 December 2000 (until it ceased to be effective)
-diary maintained by Dennis Argall, Margaret's husband.

PLEASE NOTE THAT THE 'STRATEGIC SITUATION',
DESCRIBED BELOW ON THIS PAGE,
WRITTEN EARLIER IN 2001,
HAS BEEN RENDERED OUT OF DATE BY
DEVELOPMENTS IN JULY 2001.
(BUT THE PRETTY PICTURES ARE STILL WORTH A PEEK)
CLICK HERE FOR AN UPDATE SUMMARY.

A girl and her poodle

This picture of Margaret with Sam was taken at home on Friday 18 May 2001.
On Tuesday 22 May it was Sam, who seldom leaves Margaret's side,
who gave the alarm when Margaret commenced serious seizures.
As I write this on Friday 25 May, Margaret is looking much improved.
Thank you Sam...


TREATMENT SUMMARY
After success with repeated major open surgery and radiation attacks on the tumour in 2000,
Margaret began a new treatment phase at the end of that year.
A small rind of tumour has been attacked since December 2000 in two ways.
[1] Temozolomide is a locally acting, brain tumour specific chemotherapy,
a cytotoxic which breaks up the DNA of rapidly dividing cells (such as tumour cells)
with relatively modest collateral damage - no hair loss, no great destruction of mucous membranes.
But it can only be taken 5 days in 28 at standard dosage and even then may be delayed
if white blood cells (immune system) or platelets (fibrin, preventing haemorrhage) are reduced too far in number.
[2] Thalidomide is a valuable nightly adjunct, as an antiangiogenic, preventing tumours developing new blood vessels
- without which tumours cannot grow beyond pinhead size.
These two drugs work for 30% of patients.
The survival record of people on both appears, in the experience of the Sydney Neuro-Oncology Group,
much better than for people on either alone. These drugs are, at April 2001, working for Margaret,
who is also committed to a regime of vitamin and Chinese herbal supplements.
But we know that we are dealing with tumour cells with a cell duplication period of as little as 15 hours,
capable of growing to five centimetres in two months.

STRATEGIC SITUATION
Margaret's second craniotomy in November 2000 was undertaken on the basis
that she would promptly thereafter have chemotherapy - that has been embarked upon successfully.
Prior to that operation, in a meeting with the radiation oncologist,
he indicated that at a future time maybe Margaret could have 'a little bit more' radiation
although the 30Gy of conformal radiation plus gamma knife stereotactic is pretty much the ceiling.
Margaret's treatment with temozolomide and thalidomide is as advanced as any treatment in Australia
and while there are many 'promising' new treatments under clinical trial in the US,
none seems spectacularly superior relative to what Margaret is doing -
and we are very much dependent on what impresses our doctors here.
The vitamin and Chinese herbal treatments are alternative strategies
to support the immune system, possibly to kill tumour and most importantly
to try to strengthen normal cell life and reduce tendencies to further tumorigenesis.
Also a significant adjunct in our view is effort to achieve calm and some serenity, which is not always easy,
but which ought, by reducing aspects of stress further, make the tasks of physiological survival a bit easier.
We are aware that if this current mix of treatments fails - if the tumour regrows -
the option of a third operation would only be meaningful if there were some other, so far untried, treatment to follow.
We are confident that Margaret's neuro-oncologist follows the results of research intently
and takes a very assertive approach to enhancing her patients' survival prospects.

Dennis spends a lot of time following new research developments,
which are in discussion daily in the internet brain tumour community.
Also, recalling that it was reports on temozolomide and thalidomide research results at the
May 2000 meeting of the American Society of Clinical Oncologists (ASCO)
which sent us to Sydney at the end of that month and got Margaret in line for her current treatment regime,
I am keeping an eye out for reports to the May 2001 conference.
Here is an ASCO report on brain cancer dated April 2001.
Alas, as much as anything it points to the poverty of knowledge and treatment options.

- for up to date details, click on NEWS above.

For information on the Australian Internet Brain Tumour Discussion Group,
established in November 2000, eighty members at April 2001, click here.

...and now for some family photos, taken in January 2001
(for some photos taken in March, click here...)

  

..and apparently enjoying it.

It was a hard year in 2000, with our hunt - Margaret and Dennis - for treatments, 
while Liz and Cat looked after themselves, and Sam the poodle, at home.

It's very nice to have everybody at home this summer (these pictures, this narrative, put up in January 2000)
and to have Margaret more well than for a year, 
give or take some problems with continuing powerful (and very effective) 
medications and effects of operations.

 

 

Liz (pictured above as one of the lunching ladies and in the dog's life photo - by the way, the white object beside Margaret is not alive, it's another wig) achieved three distinctions and a credit in her second semester of second year Arts last year, obtained a license to work as a security person (casual, not career) in December, after training, including St John's First Aid Certificate, is lining up part time tutoring work and currently working on a short film with friends before returning to university in March for third year anthropology and English. She is President-elect of Women On Campus, training in aikido six days a week and is a director of the university sports association, representing martial arts. 

Catherine (pictured with mango - it must be summer, and breakfast, lunch, dinner or somewhere in between) finished Year 12 at Narrabundah College, with a double major in English, majors in fashion, textiles and photography and a minor in advanced maths, deciding to defer tertiary studies to consider where her heart lies. Before seeking full time employment, Cat has begun two volunteer activities. At the Canberra Museum and Gallery (CMAG) she has begun a couple of photography assignments, including inventory of historical features of the Sydney and Melbourne buildings on Northbourne Avenue, Civic, with a view to photography by April and is also to photograph a panorama from Mugga Mugga station, to be used in the education centre there. Secondly, Cat is undertaking six weeks of training (three hours a week) with the Home Tutor Scheme, which should lead to assignment as tutor to a newly arrived migrant for weekly tutoring over a year. Not to be overlooked, of course, is the classy dress this classy lady designed and made for her year 12 formal...

This page written 29 January 2001.
Treatment summary added 20 April 2001.
Earlier welcome pages begin here