8 Medical management
and Quality of Life
You can get swallowed up in the routines of treatment, the blood tests, understanding the drugs, talking to health professionals (and everyone around you) about the tumour.
The purpose of this section is to provide some practical information to understand and deal with the medical management issues as you go along. These notes cannot cover everything and often the best way to get an answer in a situation is to ask our lovely group about experiences people have had. And then filter the replies for relevance to you AND then talk to the doctor.
IN ALL THIS, however, it is very important to seek to maintain quality of life, to live life rather than live tumour, to see the beach through the trees.
Three thoughts:
[1] Somehow, as a carer you have at least two people inside your head, the lover AND the nurse... oh there's the cook and parent and driver etc, and the discovery of being in many respects suddenly the single parent, in terms of duties. But the big question is how to be on the one hand the not-calculating loving person and on the other, at the same time, the very objective, calculating, planning nurse, on guard for emergency, making the decisions about home or emergency as dispassionately as possible.
The biggest challenge will be when you have to deal with seizure. Worse for the observer than the sufferer they say. Splits you down the middle, the bit that needs to weep and comfort, versus the one who has to check the watch, count the time, dial 000, get the furniture out of the way, place the patient in recovery position on side while patient is still in seizure, who must assemble the scans and the medical record to explain to the ambos and the Triage Nurse at the hospital... oh and organise the wellbeing of the kids if you take the ambulance. [see section 8c]
Important to find your way, build the two roles, not fall between... You can't afford to abandon either role.
THE SAME PRINCIPLES APPLY TO THOSE WHO THEMSELVES HAVE THE BRAIN TUMOUR. It is one of the really exciting developments in OzBrainTumour that we have over time had more and more active members who themselves have brain tumours. Nothing more important for the person with the brain tumour than to be at the one time insightful about their issues and also loving and caring for self. To quote the American poet Mary Oliver:
The Journey
One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice--
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do--
determined to save
the only life you could save.[2] You can work both on treatment however vigorous and on quality of life at the same time— you do not have to choose between the two, if you think carefully about the balance.
[3] None of us know how long our lives will be, we all share the same objective, to sustain quality of life as high as possible for as long as seems feasible. This kind of diagnosis sharpens awareness and appetite for life, of which we may have been neglectful. This graph shows what we all want — the best of quality for as long as we may. And it makes very clear, if you think about it, that we have more control over quality than time. There are practical thoughts in this web site and available in discussion at OzBrainTumour, to assist keeping the path on that due right, then down. You can work with doctors and drugs for more time; you work with yourself, family and friends for quality and the quality can add length to life!
See also section 11(a)