OzBrainTumour Notes

OzBrainTumour - the Australian Brain Tumour Discussion Group
A Manual for sufferers and carers
this update 31 January 2001
Dennis Argall
[Moderator, OzBrainTumour]
husband of Margaret Gray, diagnosed with a glioblastoma grade IV April 2000
and determined to survive...
[Margaret's history at http://home.alphalink.com.au/~grargall/]
If you have comments, suggestions for this paper, please write to Dennis.

These notes need some revision, and should in particular be read in conjunction with
my notes on Dr Helen Wheeler's presentation on Brain Tumour Treatment on 14 February,
which are also delivered to new members of OzBrainTumour, or can be obtained by clicking here.

Probably you have come to this "discussion list", wherever you are, because you or a family member or a friend has a brain tumour diagnosis. We are sorry to hear your news and welcome you to a group which shares this misfortune.

This document is intended to help you make the most of the 'list', and also help you deal with some of the issues that arise when dealing with a brain tumour - practical issues, money issues, big picture issues too. There are issues of survival for the person with the brain tumour, also for carers and family.

The table of contents has embedded in it links to the different sections of text, so you can run from the contents to particular text. Come back to the contents again by pressing the 'back' button on your browser. There are some links in the text to sites on the internet, which obviously will only work if you have been connected to the internet; but the text here is intended to be self-explanatory, and the internet links provide extra background or detail. Clicking on these links should open a new browser window, and not take you away from this document. You may want to close these extra windows as you go rather than clutter the desktop.

To help you survive as a member of OzBrainTumour we recommend that you save this document to somewhere easily accessible, such as you computer desktop, NOW. Pull down the file menu, top left, and select 'Save As'.

The note at the website, describing the list, which is reproduced here, should be regarded as a summary guide to good manners and successful writing to the list:

Please also:
• when you reply to someone, don't just send the whole of the previous message back with your text, extract the relevant quote and delete the rest - otherwise all our hard disks will be needlessly overcrowded
• use plain text, not HTML, if possible. Alter the settings in your mail program to ensure that all mail to the list is in plain text. If you need help ask a moderator. THIS IS IMPORTANT AS SOME PEOPLE DO NOT HAVE SOFTWARE THAT DISPLAYS MAIL IN HTML, BUT WILL DISPLAY IT AS JUNK; IT IS ALSO IMPORTANT AS HTML MESSAGES CAN CARRY VIRUSES.
• DO NOT SEND ATTACHMENTS TO THE LIST - because of the risk of widely distributing computer viruses this way, all attachments will be stripped from emails at the server, none will arrive.
• it is possible to reply to one person alone - you can get the address from the text when you press reply and substitute that for the address of the group - but don't feel that your views should not be aired, write to the whole group if you think there may be interest on the part of more than one person. The success of the group depends on the contributions of many.

People writing to this kind of list may be graphic and candid in their accounts. Be prepared for that, think about what you want to hear. Carers may need to do more of the hunting through the ugly information, while patients may want to seek serenity and not be entangled in the sordid details. Another choice! - reach some understandings among yourselves at home.

Support groups can be good therapy or bad therapy. They can cause people to wallow in mutual misery or be energised by support and friendship and perhaps give them some control over their lives. Knowledge may not be power over the tumour, but for some it may be preferable to operating in the dark. Let's try to keep the group positive, supportive and friendly.

Everyone here is equally troubled and of equal status, and equally vulnerable to loosing our cool. There is no shame in expressing grief or upset at circumstances on the list, but being nasty to other group members will be frowned upon. And remember that most of what people say will be their impressions of what's helpful which may be very different from your clinical treatment needs. Comment on and criticism of this and other papers is welcome and desirable. Take it as opinion and not as authoritative. Your lives are in your hands...

When you visit the web site http://groups.yahoo.com/group/OzBrainTumour, look at the right hand side of the page and you will see the word 'Modify' - this is where you can adjust the way you subscribe.

Then on the left of the page is a row of subjects, linked to pages, of which Members, Files, Calendar, Links and Chat are the most important - you can use the members list to contact other members, there are some files and lots of links, and you can use the chat facility, if you arrange with others a time to be there. The calendar will be helpful if we use it - it sends reminders of events to the list.

B: Practical stuff - using the resources available to help with financial and other burdens

You are likely to be, if not already, faced with issues and financial and time pressures which it's hard to anticipate. You may have large pharmacy bills, and you may have large medical bills if you are doing other than use public hospitals as public patient. You may have travel expenses. If you have to spend a lot of time as a carer you may face disruption of income. Fortunately there is support from government for these problems. Do not underrate the need you may have for help. Assume that you will be running hard as a carer or as a patient - so care of yourself for the long hall. If you are to be optimistic about your prospects in dealing with the illness, be positive in looking for help!

The social workers in a hospital can be a very valuable resource for pointing you to resources after hospitalisation, for the patient and the family. Use this facility - ask, at the desk in the ward, to see the social worker. The social worker attached to a neurosurgery ward will be uniquely valuable, with an understanding of your case and issues you are facing.

If you have responsibilities as a carer, consider putting a card in your wallet, next to your driver's license, to indicate, in case anything happens to you that "I am a carer for xxx, who is at [address and phone] and whose doctor is/ medical files are at .... In emergency also please contact yyy.". Make sure, in advance of any medical emergency, that you have scans and other medical reports in an accessible location, and that you maintain an up-to-date list of medications, preferably a daily record of what is taken.

Unless you are in a situation where costs are bulk-billed or you are obtaining health services solely through a public hospital as a public patient, you will be familiar with these basic propositions:
• the government sets a scheduled fee for all accepted medical services,
• doctors commonly charge in excess of the scheduled fee, and
• Medicare reimburses only 85% of the scheduled fee.
However, there is a Medicare Safety net. The difference between what Medicare pays and the Schedule fee is called the gap amount. Once your gap payments, within a calendar year, total $280.30 [figure current at January 2001], you are eligible for the Safety Net. Medicare benefits will increase from 85 per cent to 100 per cent of the Medicare Schedule fee for any further out-of-hospital services in that year. Note that while for a single person the computer will determine when this is to happen, if you are a family and want your whole family aggregated for calculating the 'gap' you must register the group to be aggregated with Medicare. More information at http://www.hic.gov.au/medicare/safety.htm Note also, that on 1 January, you fall off the safety net again, and your expenses will be totted up again, and you will have to qualify again for the dafety net. Here's a little wrinkle - once you hit the safety net, you are entitled to an increase in benefit from all earlier payments. This means that Medicare will want to have evidence that bills have been paid in full. If you are paying bills in full and then getting reimbursement from Medicare, then they will already know you have paid; but if the accounts are going from the service provider to Medicare, and Medicare is sending you a cheque for the service provider, for you to top up with payment of the balance, THEN, when you hit the safety net point, you will have to present Medicare with receipts to indicate that full payment has been made to the service provider - more record keeping.

There is a similar Safety Net details at http://www.hic.gov.au/pbs/safety.htm under the Pharmaceutical Benefits Scheme to reduce costs for families buying lots of medicines. Talk to your pharmacist about record keeping - if you buy everything at one pharmacy (which may be hard if you are travelling to treatment) your progress towards the Safety Net can be calculated on the pharmacist's computer. But if you are buying PBS prescription drugs in various places, you will have to do the record keeping, on an appropriate form you can get at a pharmacy. What is important is total expenditure in a calendar year. If you reach the Safety Net threshold, you can apply for a Safety Net card and your medicines will be cheaper or free for the rest of the calendar year.

Centrelink is mainly known to people in relation to employment and unemployment, areas of contention and change in service provision. It is important to recognise that Centrelink has broad functions as the local 'shopfront' for a much wider range of federal government services to the community. A good start point for looking at the spread of services that may be available is at http://www.centrelink.gov.au/internet/internet.nsf/individuals/index.htm . Or if you need help in languages other than English, start here - http://www.centrelink.gov.au/internet/internet.nsf/language/index.htm .

There are two relevant payments for carers, in addition to benefits for the person with disability. CARER PAYMENT is means tested and payable where disability is substantial. CARER ALLOWANCE is payable without means test, and with less strict requirements for disability. It is important to speak early to Centrelink. There is a special Centrelink for carer and disability inquiries 13 27 17. Payments can be backdated to a 'crisis event', and a diagnosis may be regarded as a crisis event - but backdating cannot be beyond 6 months.

Even if the pension amount to which you would be entitled is not large, there may be very great value for you in obtaining access to concession cards. Don't doubt that the burden of sickness and caring will burn a hole in your pocket. If you think you have an entitlement, pursue it.

Note that there are financial advisors at some Centrelink officers who may be able to help you plan. You will need an appointment. Ring the number above to ask for this service; explain the background. See also Employment and Superannuation, below..

There may come a time when you need help at home. There are, with some local variations, arrangements for home nursing assistance (and other help), often assessed by the ACAT team [Aged Care Assessment Team] at hospitals. There are also Palliative Care systems. The boundary as to which to approach is one for them to work out, but you may be more comfortable approaching home nursing in the first place. Palliative care is a system which seeks to assist with the relief of symptoms, especially pain, in major progressive illnesses, not just in terminal stages but at other times too. Some Palliative Care patients are out and about at times. Palliative care assessment also helps a family decide what can be done at home, and whether a patient may need to be in a hospice. Governments are keen - for social as well as financial reasons - to help families keep the patient at home and palliative or nursing care organisations can provide multiple visits per day if needed. Perhaps wise to touch base with these organisations sooner rather than later, to know your resources and also to discuss any home modifications that may be appropriate to deal with any disablement. Carer Associations locally may also be able to give you phone numbers and more for contacting local sources of help, and they also provide respite care and counselling. Look in the Community Services section in the front of you local White Pages - purple page edges - and go to the 'Age Page'.

There are provisions, usually administered from an office in a local hospital, for modest assistance with travel and accommodation expenses, for patient and escort where required, at a distance more than 200km from home, for treatment not available locally. There are forms which need to be filled out - by the referring doctor, the treating doctor or hospital where treatment occurs and by the patient. It is also necessary to keep receipts for accommodation and travel expenses, including fuel purchases. Check with your medical practitioner or hospital.

You should take steps promptly to examine your entitlements and options. Be aware that if you seek disability entitlements there may be different taxation treatment relating to portions of entitlements, depending, for example, on the date at which the entitlement was acquired. Relate your findings as regards these entitlements to entitlements you believe you may have for disability pension or carer payment or Health Card and such benefits. If you were, for example, to receive a lump sum which attracted tax as income in the year received, it may push up your income for that year and disqualify you from benefits. The ceiling (taper-off point) for disability pension (and associated health card) is, at January 2001, a total of family income of $48009, subject to annual CPI indexation, extra if there are dependent children, but not reduced by 'rebates' for medical or other expenses.

You may want to get some financial advice. As noted above, there are financial advisors in some Centrelink offices..

Be aware that Medicare does not cover ambulance costs, but that private health insurers provide ambulance only insurance at modest cost - with government subsidy, as for other health insurance. A 6 km trip to hospital in Canberra by ambulance cost, in September 2000, $200. The account was presented to the insurer, who simply took over all costs.

Suddenly getting a diagnosis of brain tumour confronts you with issues of potential death or disablement, in the course of operations or from the tumour. In this situation, and if possible before crisis, and DEFINITELY before any health deterioration, you need to review both Wills and Powers of Attorney.

Lack of a will has very serious potential consequences, with the determination of an estate taken out of the hands of those most interested and carried out on the basis of formulae which may not reflect the wishes of the deceased. Similarly, a will made at an earlier time may not suit changed circumstances.

The power of attorney is worth considering in advance of any circumstance of one party being unable to act. When powers are so granted the attorney may do any legal act the granter of the power may do. The law varies from state to state (in some places - e.g. NSW the document is brief, sweeping and general; in the ACT, the document is long and divided into sections for different responsibilities. Local legal advice is essential. Accepting a power of attorney is as serious as granting it. The law requires the attorney to act in the interests of the person who holds the power. Powers of attorney can be revoked instantly and orally, though writing is no doubt better evidence.

It is in the nature of brain tumours that they affect the brain, something we would like to disregard or postpone accepting. Act while clear minded.

Consider these prospects:
• you are likely to be in a rush and you are likely to need help to put documents together, as you will have more on your mind than studying do-it-yourself legal kits - consider getting a lawyer to help to do things swiftly, legally and to meet your wishes;
• the person with the tumour may need to grant someone power of attorney if incapacitated and unable to act, e.g. sign a cheque, issue an instruction to a bank;
• the carer of the person with the tumour, running around like a headless chook at times, may be vulnerable to illness or injury, and may need to appoint another person as attorney too;
• for the same reasons BOTH patient and carer should consider reviewing wills;
• if the patient and carer are travelling away from home for treatment, etc., leaving dependent children behind, some consideration should be given to their financial needs and support promptly after any accident - it's no good saying the Will will provide - Wills take months to work their way to probate and outcome;
• if any person is facing an operation with the smallest risk of death, it's an excellent time to talk about funeral arrangements too. This may be emotionally very difficult; but couples may find it easier to discuss what each would want. None of us will live forever.

There are some pages of legal advice and some draft basic legal documents, including powers of attorney (ACT and NSW) and wills, at this web site http://www.mannering.com/ and doubtless those of other legal practitioners.

There is considerable public ignorance of brain tumour and there is not a lot experience among family doctors in this area. There are arguments in the brain tumour community that brain tumours should be considered other than cancer. It seems best to regard brain tumours as having characteristics shared for the most part by other tumours, benign or malignant, but as operating in a very special environment, inside the brain.

Tumour cells, wherever, including brain tumours, vary from 'normal' body cells in these respects:
[a] genetic mutation,
[b] altered respiration, with a very large shift from oxidative metabolism to aerobic glycolysis
[c] rapid reproduction (for example, whereas brain cells rarely divide and reproduce, glioblastoma cells may duplicate themselves in 15 to 35 hours
[d] a loss by the cell of capacity to differentiate, as normal cells do.

The key differences between brain tumours and cancers elsewhere::
[e] there is a blood-brain barrier (see for example http://galileo.physiology.uiowa.edu/animations/bloodgif.htm and http://www.sfn.org/briefings/blood-brain.html which means that the world inside the brain is different and transfer of materials between the brain and the rest of the body is limited;
[f] this impacts on the capacity of the body to remove materials associated with tumour growth and tumour death, and on the suitability of chemical treatments for tumour - most do not cross the blood-brain barrier;
[g] though cancer elsewhere in the body may 'metastasise' and produce tumours in new locations, brain tumours do not generally spread beyond the brain and spine in that way.
[h] brain tumours more directly impact on brain function, but tend not to cause pain in the way that many other cancers cause pain. So the impacts on quality of life of the sufferer have different potential dimensions.
[i] the incidence of brain tumour appears to be increasing rapidly, compared with other cancers.

2 General and philosophical, ethical issues

The paper is not a doctor's paper, and should not be relied upon or regarded as in any way a substitute for advice from a medical practitioner. It is written by someone caring for a spouse who has a brain tumour. It is intended to help you deal with issues arising in the hands of and in discussion with doctors and other therapists.

There are some really big issues to consider. How the person with the tumour deals with issues depends not just on medical science, which knows too little about brain tumours, but importantly also depends on individual beliefs, philosophy of life and attitudes to the diagnosis.

It is terribly important that the person with the tumour have the opportunity to reflect and consider things as a personal right. This involves some difficult balances for those around the patient - carers have to try to give the patient room for thought, rights to make up his or her own mind. At times the carer needs to say: "We can do all sorts of things together but this you have to do/decide yourself, I am here with you, but it's up to you".

Alas, a tumour can give rise to pressures in the brain which may impact on personality and on ability to reason, qualities which are under stress in any case when you have a worrisome diagnosis. (This may make it harder for the patient to reason; carers' capacities to think through issues may also be troubled - counselling may be something for the carer to consider for her or himself). Brain tumours may tend not to cause pain, compared with other forms of cancer, but they can muddle perception (including perception of reality), behaviour and thought more insidiously. And because aggressive tumours can cause sudden, not just gradual, changes in circumstance, it may be wise not to delay discussing basic issues - it may suddenly be too late. Some treatments have insidious effects too.

So in all the initial rushing to doctors appointments and treatments, there is need to make time to reflect.

You may wish simply to run with the treatment offered and accept the guidance of doctors you see, and learn no more about your condition, just take the advice. That is your right. In that case, you may not wish to read further in this message.

You may on the other hand want to know more about:
• what type of tumour you have,
• where it is located,
• how benign or malignant it is,
• how aggressive it is - the malignancy and aggressiveness are (like other medical scales of severity) ranked from I to IV, or 1 to 4, with grade 1 being the least aggressive, and therefore seldom diagnosed, and grade 4 the most aggressive, malignant, disruptive and most frequently diagnosed.

Useful to look at the brain here. Click for brain map.
The location of the tumour will affect parts of the brain adjacent to it,
but pressure from a tumour may impact more widely.
There are links at the OzBrainTumour web site which may help you
understand different brain regions.

There are also different types of tumour (the links page at the web site has links to a number of sites with lots of information on this kind of subject), affecting different types of tissue and growing in different ways in the brain (or spinal cord). Some are rare, some are relatively common, none is so common that local doctors have a great deal of experience of them. If the tumour is in a very inaccessible place in the brain and is not large, even the best doctors may have difficulty or be reluctant to carry out damaging invasive procedures to identify it quickly. Some tumours arise as metastases [altered forms] of other bodily cancers, such as lung cancer. But brain tumours do not normally go from the brain to start tumours in other areas of the body. A tumour occurring ansd treated in one part of the brain may, however, suddenly be succeded by tumour in another part of the brain.

As noted above, brain tumour may be thought of as a form of cancer, but life in the brain is largely cut off from the rest of the body, and different conditions and treatments apply and simply regarding a brain tumour as cancer may be perilous. Some people have modest tumours and live with them for a long time; some people have them removed and go back to normal life. Other tumours, notably the very aggressive glioblastoma multiforme [Grade IV] may double in size in seven to ten days at worst and produce a lot of oedema (fluid) - it is the pressure from the growth itself and the oedema that destroys brain cells. Knowing which type and grade of tumour you are dealing with may help you make decisions about lifestyle and treatment.

You may have, or can get, some indication from doctors of the impacts on lifestyle and life expectancy from the tumour. The decision as to how informed you wish to be is for you to take, but knowing what kind of tumour you have, and where in your brain it is may help you know what kinds of impacts it may have on your future. This is not intended as a medical primer or a professional statement about options, but is intended to help you, whatever type of tumour you are dealing with, to prepare for treatment discussions with doctors. Some doctors may be reluctant to be informative if you are reluctant to ask questions. You do need to figure out how much you want to know, how much you'd prefer not to know. Saying "how long have I got" makes it easier for the doctor to be open, if that is what you want; the follow up questions become, for example "OK, what are the options for treatment?" "OK, but what side effects will it have, how does it stack up in cost-benefit?" and so on. A doctor probably won't thrust information at you if he/she thinks you don't want it or can't handle it. You have to be assertive if you want the partnership with the treating doctor shaped in any particular way.

Each person, each tumour, will confront doctors with a new set of variables as to their age, sex, general health, the nature of their tumour/s and its/their location. It is possible to learn something from another person's treatment experience, but it does not follow that one person should have the same treatment as another.

Medical science does not know what causes brain tumours. Western medical treatments thus focus on killing tumour cells. The ineffectiveness of many treatments and some tumour types may not just reflect the robustness and vigour and resistance to treatments of cells which are already tumorous, but also the probability that there is an ongoing process of tumorigenesis taking place, which is not being treated by conventional treatments because it is not understood.

For different tumours there may be standard treatment protocols. ALL treatments have impacts of some kind. In some cases, doctors may carry out a relatively minor surgical procedure of 'biopsy' to remove some tumour tissue for identification, to allow more precise and relevant planning of treatment.

There are three major techniques for trying to get rid of tumour cells - surgical removal (craniotomy/debulking neurosurgery), radiotherapy (radiation oncology) and chemical treatments (chemotherapy, neurooncology).

There is a need for two other common kinds of treatment - anti-oedema and anti-seizure .

(i) Anti-oedema medication: Tumours do damage not only when they themselves grow but also if they produce oedema (fluid build-up); oedema also creates destructive pressure. The standard treatment for oedema, but one which can provide only temporary relief, is dexamethosone (marketing name in Australia is Dexmethsone; in the United States Decadron). This is a very powerful corticosteroid, which has very unpleasant side effects if used for a long time (and some may arise particularly, particularly psychological symptoms, in some patients), and withdrawal from which takes time and may itself produce some adverse symptoms, including adrenal insufficiency, causing great weakness. For an indication of the strength of dexamethosone relative to other corticosteroids, see http://www.medmedia.com/meda1/93.htm For an extract from the U.S. Physicians Desk Reference on this drug go to http://home.cyberave.com/~hsquare/pdrfg/pd/monos/decadron.htm

(ii) Anti-seizure medication (and coping with seizures): For some people, first knowledge of any problem, which may eventually be diagnosed as tumour, is seizure. For most people who have had brain surgery, there is risk of seizure. There are different kinds of seizure. They arise essentially from 'crossed wires' (to use a very simplistic analogy) within the brain. It may be helpful to read about epilepsy, as seizure is such a sensitive and upsetting issue - the following seems an excellent site for information - http://debra.dgbt.doc.ca/~andrew/epilepsy/FAQ.html. If you are caring for a person at home who has any potential for seizure, you may wish to have handy a piece of paper with basic first aid instructions - from the same site, look at http://debra.dgbt.doc.ca/~Andrew/epilepsy/FAQ.html#first-aid. Dealing with a person with a brain tumour, it would seem wise to call an ambulance promptly if there is seizure - whereas a person with epilepsy may have seizures while in a situation of 'stable disease', seizure for a person with a brain tumour may have more serious consequences and is less likely to be routine. At the hospital you are likely to be asked how many and how long the seizures were. Try to keep an eye on a clock.

There are a number of anti-seizure medicines in use, as is the case for epilepsy. The most common and well established drug in use is phenytoin (trade name Dilantin). While it is a tried and tested and well understood drug, Dilantin's absorption and metabolism are affected by a range of drugs,. most importantly dexamethasone (see (i) above) - increase dexamethosone dosage and serum Dilantin levels drop. The safe therapeutic serum level is 40 to 80 (this is actually the safe level for Caucasians, the safe level for Chinese may be lower, for Africans higher). Where there are changes in dexamethosone dosage taking place, doctors will probably order blood tests for serum Dilantin levels. For information on Dilantin's interactions, see http://www.parkinsons-information-exchange-network-online.com/drugdb/103.html My reading of anecdotal accounts to brain tumour discussion groups suggests that a lot of seizures in brain tumour patients, after diagnosis, arise from poor management of anti-seizure medication. Why risk seizure - make sure serum levels of anti-seizure medication are kept at a sensible and safe level, by regular testing.

(iii) Surgery may or may not remove all tumour cells; in some cases, such as glioblastoma, total removal is highly improbable. Removal of a notional 99% of tumour cells may leave behind a notional billion (see http://www.brain-surgery.com/primer.html). The impact of surgery on the individual, the rate of recovery and departure from hospital, will involve much more than tumour related issues, including general health, age, attitude, nutrition and substance use. Decisions will be made by doctors as to whether surgical removal of tumour/s is possible; if it is diffuse, or in a location where there would be great losses of critical brain tissue, surgery may not be advisable. In the case of 'benign' tumours, removal may constitute effective complete treatment. In the case of aggressive and heterogeneous tumours, surgery should be seen as "buying time" - whether this is simply that, buying time and no more, or buying time to try other treatments, depends on choices available and choices made by the patient. See below.

(iv) Radiotherapy may be precisely or diffusely target, involving judgments as to the location of targetable tumour material. Different people may need different dosages of radiotherapy. A common maximum amount of treatment by conventional radiotherapy, targeting broad brain areas is thirty sessions, each of 25 centigrays [cGy], to a total of 6000 cGy or 60 Gy (equal to 60 rads). At one treatment each weekday, treatment would last six weeks or more (machines need service, staff take public holidays, there are some overall staff shortages). A visit for one of these radiotherapy treatments is about as complicated as a visit for a diagnostic x-ray, but a daily visit for six weeks is a big program and life will tend to revolve around it. Stereotactic radiotherapy treatments, putting bigger doses onto small targets, may be done in one day, but are not always accessible or appropriate. Radiation kills cells undergoing division, something tumour cells, especially the higher grade tumour cells, do often, whereas brain cells do so rarely. Killing of tumour cells will cause inflammation and oedema (fluid), much as is the case with sunburn, but the problems arising are of course more substantial because of the difficulty of getting rid of the oedema from within the brain. Side effects will vary from person to person, and may include great tiredness. Hair loss (some but probably not all, will eventually return), depending on dosage, is normal and skin will be sensitive. There may be some impact on the immune system for some time - there's a lot of bone marrow, the producer of white blood cells, in the skull. Avoidance of infection with passing colds, etc, is desirable if possible.

(v) Chemical treatments - The term 'chemotherapy' may be familiar from stories of cancer patients. In Australia (in contrast to the United States) it has not been the general practice to use 'standard chemotherapy' on brain tumours, as used for many other cancers.

The standard chemotherapy drugs do a poor job of getting across the blood brain-barrier and then the tumours often are not greatly affected anyway, though the patient suffers the big side effects of chemo. Chemo drugs are toxins which kill dividing cells pervasively in the body. They thus impact on cancer, but also on other rapid dividers, such as all the mucous membranes from the mouth and nose to the anus and urogenital tract, and they also weaken the immune system. The cost (in loss of well-being) to the patient is not generally matched by benefit in this type of tumour.

There are now two (potentially many more, but practitioners have to make decisions on which to take up and use) newer chemical treatments in Australi for high grade astrocytomas (including glioblastoma) - thalidomide and temozolomide -about which you will hear mention on the list.

These are new and seem more effective than standard chemo, but they are NOT cures - they are successful in killing tumour cells or slowing tumour growth. They may not work for everybody. Thalidomide is an 'antiangiogenic' substance, that is, it inhibits the development of new blood vessels. Tumours have their own special kind of blood vessel, and the aggressive brain tumours are very good at 'irrigating ahead' of themselves, with new blood vessels. So thalidomide inhibits such growth, and has reportedly been observed to kill embryonic tumour cells. Thalidomide is not an approved drug at this stage, but has been the subject of clinical trials and continuing treatment under special access at the Royal North Shore Hospital in Sydney.

Temozolomide has acquired a reputation internationally as relatively effective chemotherapy, with relatively fewer side effects. It is taken as a capsule and dissolves in the stomach, travelling via the blood stream easily across the blood-brain barrier. In the alkaline environment of the tumour, it metabolises into an active cytotoxic substance. It was made available subsidised under the Pharmaceutical Benefits Scheme as a first line chemotherapy in December 2000. Here is an unofficial copy of an Australian hospital treatment protocol for temozolomide.

It is important to be aware that there are few neurooncologists in Australia and that not all doctors, including medical oncologists, will be seeing many brain tumour patients, or up to date on drugs for brain tumour. If you feel that the doctor you are seeing is not abreast with new developments, ask to be referred for a second opinion. This may require travel - see B:5 above.

In New South Wales, perhaps in other states similarly, no person other than one qualified with MB BS (Bachelor of Medicine, Bachelor of Surgery - the conventional medical practitioner qualifications) may claim to treat cancer. Some alternative practitioners offer 'relief from symptoms' and in a climate where patients face a bleak outlook in dealing with illness for which there is no known cure, many conventional practitioners allow patients to access other treatments as they choose. And some doctors show concern to observe which of such treatments may be effective.

The Therapeutic Goods Administration allows for import of some medicines, with more liberal provisions for patients with life-threatening illnesses. See http://www.health.gov.au/tga/docs/html/bringmed/index.htm. The rules for personal medications being carried by a traveller entering Australia are less restricted than for importn by a person living in Australia.

The weakness of conventional medical treatment of tumours is its overwhelming focus on pathological processes. The patient and carer can feel at sea, travelling from one technical expert to another. Hence the search for holistic perspective often extends outside conventional medicine. There is a general absence of advice to patients on nutrition and rest, in particular. These are both of great importance. Techniques for relaxation and meditation, gentle massage, and quality of care and support all impact on the rest of the patient, and on bodily capacity to fight illness.

Each of us arrives at this point with personal beliefs, habits of mind and emotional and physical needs, which may be tested or strengthened by severe illness.

The whole business of seeing doctors, taking medicines, getting treatments, experiencing symptoms and side effects and wating anxiously for the next scan or blood test can easily consume other aspects of daily life. Beware of this.

It is pretty normal for sick people to tend to turn the focus of their minds onto their preoccupying condition and unpleasant feelings - though some effort to avoid such obsession may be helpful both in fighting illness, making the passing days more enjoyable and, alas, avoiding being a bore. It is pretty normal for some friends to disappear and others to be discovered to have special worth. For the carer who has been very close to the patient the task can be complicated. There is a need to sustain the loving relationship that was there before, through trials, including sometimes upsets and maybe personality shifts. There may be a new intensity to the relationship arising in the crisis. However, there is also a need to sustain some objective distance and to be able to make sensible, not just emotional, judgments about care and medical needs. The carer can be an asset or a weakness in patient care in that regard; it's far from easy, when a loved on is churning with a seizure, or having difficulty saying what is the cause of current discomfort, or being selfish in some way, to step back a little, to take an objective view, and try to be a nurse and lover at the same time.

It's easy to start speaking rather casually or insensitively about a patient, or giving less than best attention if the patient is less than fully competent. It's also easy for a carer to feel guilt or inadequacy.

There are patterns to intimacy, if things have been happy before diagnosis, and a carer may do well to try to map those in mind and try to maintain them. At the same time, a sick person, as well as a fretting carer, may reasonably be expected to 'regress' somewhat, in wanting more, and perhaps more childish comforting and care. Giving and receiving such emotional support, in words, expressions, praise, and in physical generosity, touching and soothing, may be very valuable, both to making days good, and to assisting recovery. If cancer arises as a particular adaptation to an energy shortage in cells, and if we are, physically, communities of cells, there is much to be said for soothing and harmonising energy at all levels.

The carer's health is at risk. Keep an eye on it, don't run out of steam before the patient! Pace yourself. If you give lovely advice to the patient about 'looking after yourself', practise what you preach. Talk to the patient about how you are too. It may be good for the patient to be able to care for the carer a bit.

There are potential problems with speech and communication. Broca's Area is an area of the brain responsible for speech.

If there is pressure on this area of the brain, there can be interference with:
• the ability to take in words being said
• the ability to know what you want to say
• the ability to find nad produce the words that you know you want to say.

This can be a crushing experience for the sufferer, and unnerving and confusing, even irritating for others. (Some doctors seem sometimes to forget about this in talking to - and listening to - patients). Such communications problems are known as aphasia. There is some good advice on this subject at http://www.aphasia.org/NAAcommun.html - this is, however, advice for use in the workplace or the home, and at home there may be times not to worry too much about verbal communication, but to spend time just being together, communicating non-verbally. Patience is essential. Reassurance of support is important.

It is very much a matter between doctors and individual patient as to whether treatments are worthwhile and desirable, given the nature of the individual's tumour and the patient's attitude, health, etc. In the case of malignant and aggressive tumours, while tumour growth itself impacts on life, the treatments have unpleasant effects too and a patient may want to choose to minimise such side effects and just make use of the time the 'incurable' tumour allows.

Many doctors will not be immediately aware of all new chemical treatments, and some of those mentioned specifically are not yet, at time of writing 'standard treatment' and doctors know that treatment of cancer is very closely regulated and doctors on the fringe of the action are not likely to start offering 'adventurous' treatments beyond their knowledge and competence. Only particular specialists may be able to prescribe some substances. You should listen carefully to what doctors may say to you, just as doctors will, hopefully, listen carefully to discern your attitudes and desires, towards life, treatment and knowledge/information about your illness.

It is worth thinking through these issues of how you would like to be dealt with before meetings with doctors. In a narrow sense it is a choice between standard 'time-buying' treatment and readiness to undertake extra treatment, which is new or even experimental. With very aggressive tumours, you don't have much time to reflect on such big issues. Every day sees more regrowth of tumour and delay means the next treatment will have to start work on a larger and less accessible mass with every day that passes. So if you start on aggressive treatment, you may find it's something you may feel impelled to stay with and stay with. For example, it looks as though, if thalidomide works or temozolomide works, you have to keep taking it (at least until some wondrous new development in treatment comes along). When you've knocked down and knocked down tumour cell populations it may be that the survivors will take advantage of a lull in treatment to bounce back, and as with the way bacteria are getting tougher with generations of incomplete antibiotic treatment, so the surviving tumour cells may be particularly vigorous and reproductive if given a moment untreated. This is a tough note to finish on, but you do need to consider taking responsibility for your own life..

Be your own case manager. If you are travelling, make sure you, or your carer, have your medical history with you, including scans and including a statement setting out your regular medications. If you have a hospital computer file number, have that on you, in your medical information. Keep this up to date. In an emergency, the doctors or paramedicals you first see in a hospital or an ambulance are hardly likely to know as much about your history or your problem as you do. Make it easy for them and they will serve you better. And make notes of issues you want to raise with doctors before you see them, and give a copy of this to the doctor too, so that your questions can be dealt with in good order.