Introduction

   You can divide the treatment and support of brain tumour patients into 3 categories, being parts of the personal “trajectory”:

-          The acute stage: diagnosis and medical treatment. At the centre of attention you get medical treatment, and the psychological support in moments of crisis.

-          The rehabilitation stage: during the months or even years after intervention an attempt will be made to regain all your damaged capabilities. Physical therapy, speech therapy and occupational therapy are commonly used. For some patients it may be important to get these therapies for a very long time, sometimes even life-long, in order to maintain their present condition.

-          The integration stage: on the one hand you have to accept the damage that will remain, and on the other hand you will try to regain your place in society or try to find a new place according to your new possibilities. Special attention is needed for the neuropsychological aspects and for your family to avoid that all the people concerned end up in a downwards psychological and social spiral.

   Do not hesitate to ask for help in the 3 stages of your trajectory. Nobody has been educated nor is rainproof against the challenge of a brain tumour.

   Below we will focus on some specialities and their possible impact on the treatment of brain tumours.

Attention for philosophy

This text has been written by Corinne Assenheimer, moral counsellor at the Middelheim hospital, Antwerp, Belgium

    As from the moment you hear that you have a life threatening disease, your world is changing and you will have to live with uncertainty about your future. How will the disease evolve? What are the consequences for your quality of life? How long will you live? What is awaiting you?

   You experience your life as a whole, an entity. Negative thoughts, feelings or moods can give rise to physical feelings such as tiredness or pain. And you do not live alone. A disease hurts several people in a different way. Not only you, but also your family, are obliged to adjust them to the new, uncertain and perhaps painful situation.

   A good medical and paramedical support can offer you a maximal physical comfort together with minimal pain. But there is also the psychological and existential suffering due to a serious disease and possibly a farewell near by. This cannot be solved nor taken away, even using the best drugs.

    Expressing and naming these sufferings makes them more tolerable. Some people think that the meaning of life is a matter of subjective feeling and too personal to find its place in clinical practice. The acknowledgement of your own mortality or the mortality of a loved one is task of horrible difficulty. You may need some help for doing so.     

   The meaning of life is about matters that concern us in daily life, such as the desire to be loved and be a good partner for your parents, your partner, your kids or other people. Philosophy is also about the core of life itself, and we may feel very powerless when we are confronted with the “pain of life”.

   Nobody is a blank sheet of paper. Your personal history, including your cultural, philosophical or religious background, determines to a large amount what you expect from life and how you cope with it.

   Every man or woman experiences the illness in his or her own way. But anybody wants to be respected as a person till the end. Existential loneliness is very heavy to bear. To feel comfortable you need to feel in alliance with somebody or something outside yourself.     

   Questions about the meaning of life are often hidden behind other normal questions? For many people it is easier to say that they have physical pain than to say: “I am afraid, don’t leave me alone.” The worry about your family or the fear for rejection possibly restrains you from speaking out your feelings.

   Specific attention for your inner life can contribute to your comfort and wellness. And this reflects positively on your surroundings. Having the possibility to speak out safely and privately your thoughts and feelings to a stranger who is not a part of your history, but who listens carefully and tries to understand you, may have a liberating and comforting effect. In a sense you may recover just by telling your story.

   Existential or spiritual care is more about “being there” than about “doing something”. It is a special kind of being close, where the caregiver is primarily interested in your inner self.

   You cannot change the facts, but you can change the meaning you accord to these facts, and the way you cope with it. You can work on this! Through the suffering you may even have a good feeling, and new possibilities create opportunities for reconciliation with yourself and what is going on.

    Philosophy and the way you look onto your life are closely linked. Every conviction has its own ethics, symbols, rituals, … In your conviction or religion you can find the “keys” to cope with life, illness and death.

   Spiritual caregivers are also there to be together with you and your surroundings and pay attention to what’s happening, to support you and to help you in your search for your own choices.

Palliative care

   If a patient cannot or does not want to be treated anymore in the curative (healing) sense of the word, there is a need for palliative treatment. This does absolutely not mean that the patient will die soon. Palliative care is meant to improve the comfort of the patient. Pain control and symptom control are essential to keep a good quality of life. Palliative care can be given in a hospital, a hospice or at home.

Psychological aspects

   Receiving the diagnosis “brain tumour” is a terrible blow. This shock is of a traumatic nature and always gives rise to questions, fears and uncertainties. Confrontation with a brain tumour can be regarded as a period of mourning or an experience of loss. You have indeed lost your health and faced mortality. You cannot continue living as you had expected. This is true for yourself, but also for your close surroundings. The psychological coping process runs trough several stages (not necessarily in the same order as stated below):

-          Facing the reality of loss, life will never be as before.

-          Experiencing emotional pain as a consequence of that loss. Feelings as denial, disbelief, despair, anger, fear, uncertainty, and guilt are very common.

-          The adaptation to the changed potentialities.

-          Giving an emotional place to the loss and reintegration in life.

   Do not forget that your immediate surroundings, partner or family will go through a similar process.

   Psychological assistance by specialized clinical psychologists is desirable at moments of crisis. Besides this you may be confronted with long lasting sequels in the fields of neurocognitive, neurosensorial, neuromotorical, relational or communicative matters. Surviving brain tumour patients become people with an acquired brain deficit. For these problems you will need neuropsychological assistance. This is especially necessary for children who recover from a brain tumour, because the disease may affect their choice of school and study, their results and their integration in the labour market and in society in general once they grow older.

Social aspects

   It may happen that you cannot regain your old place at work or in society. Your country has to provide measures for relief and support. You may also need a personal future plan or a trajectory planning. European countries have signed the UN-treaty on the rights of persons with disabilities. The European legislation also mentions these rights. Support in the case of disease or chronic disabilities is a right. It may be useful to remind the politicians in your country of that fact.