Impact of Diagnosis / Prognosis
Being given the diagnosis
First of all there is no â€˜right' way to feel when you're given the diagnosis of a Brain Tumour. Everyone will react differently and part of your reaction may depend on what type of information you're given, how much information you're given, and how the information is delivered.
People tend to experience intense anxiety when receiving a diagnosis and this can be so overwhelming that they have trouble hearing and retaining the information they're given. This is why, if you can, it is a good idea to have someone you trust who can attend appointments with you to take notes and go through things with you later.
Before your actual diagnosis you may have been through a number of tests that have suggested to you that you might have a brain tumour. Even so, when you're finally told the diagnosis it can still come as a shock. Even once it has been confirmed there is often still a great deal that remains uncertain; perhaps about what type of tumour it is, how fast growing, what the best treatment options might be and so on.
People who have been given a diagnosis typically experience a period of shock or numbness; a sense of â€˜this can't be happening to me' or â€˜they've made some mistake'. Again you may react in a number of different ways; you might want as much information as possible, or you may prefer not to know anything but the basics. It is up to you how much you want to know. However, at certain times you may need to be able to give informed consent for any treatment or decisions. This means that you will need to have enough information to know what you are saying â€˜yes' or â€˜no' to.
Other emotions that you may experience are fear and uncertainty, anger, blame or guilt, a wish to withdraw or isolate yourself or feeling out of control or overwhelmed. Again these are all normal reactions to the type of news you have been given. That's not to say that you will, or that you have to continue to feel that way. Some people might even feel some relief; if they have worried and suspected for some time that something is wrong. It is at the time of a diagnosis that people often turn to friends, family and support services to help them with time and space to digest the news.
At any time after you've been given a diagnosis of a brain tumour there are some things that you or your family or friends should look out for. These include signs of severe depression or anxiety. Your GP can help you know what to look out for or the Cancer Backup booklet â€˜The Emotional Effects of Cancer' has a useful section.
Helpful strategies for coping
Although it may seem normal to be experiencing anxiety and depression there are often techniques or sources of support that can help. Some of the most helpful things might be the support of family and friends or a support group for other people in the same or a similar situation. Some times the simple act of being able to talk about your feelings can be enormously helpful. Other things that might help include complementary therapies such as massage, relaxation, meditation or visualisation, gentle exercise, and maintaining a daily routine where possible.
Some of the most well-meaning people may tell you that you have to â€˜stay positive' or â€˜fight it'. This isn't always helpful, because you can't always be positive or always be fighting. It's ok to feel negative, to worry about the future, to cry. Everyone will find their own way of coping. This isn't something that you have to do alone though, again support groups, family and friends and other support services can help you.
Counselling and Psychology
It may be that you consider seeing a counsellor or psychologist who can help you to explore what is happening, can help with specific problems such as depression or anxiety, or who can help you find a way to adapt to having a brain tumour in a way that allows you to continue with a meaningful, enjoyable life as much as is possible, even if you have a poor Prognosis.
These services can typically be accessed through your hospital, your GP or some Cancer Support Services such as Maggie's Cancer Caring Centres or Macmillan Cancer Support.
Support from Maggie's
There are many support services out there and the more you are able to explore them the more likely you will find the one that suits you the best. Some are based in a single geographical location, some can provide people to come to your hole, and some can be accessed on-line.
Maggie's Cancer Caring Centres provide a wide range of courses, support groups and different types of one to one support that you can access in their centres or via the on-line community. Full information can be found on the website: www.maggiescentres.orgThis article has been written for BT Buddies by Rachael Brastock, Dimbleby Clinical Psychologist, Maggies Centre (London)