Many people may feel overwhelmed when they receive a diagnosis of a blood or bone marrow cancer. In addition, waiting for test results and then having to make decisions about treatments can be very stressful. Some people do not feel that they have enough information to make decisions, while others feel overwhelmed by the amount of information they are given. It is important that you feel you have enough information about the illness and all of the treatment options available, so that you can make your own decisions about your situation.
There is no set amount of information that will satisfy everyone. Some people want to find out everything possible. Others will not want to know too much, and will avoid information. They only desire the basic facts to help them cope on a day to day basis. The majority of people fit somewhere in the middle and need to have a sound level of understanding of the disease and how it will impact on their lives now and in the future. This information helps them to cope on a day to day basis as well as planning the best way to cope with their treatment and any adjustments to their lives that may be needed.
The need for information can change over time. Usually people need a great deal of information before they begin treatment. Sometimes, everything seems to be going so fast that there isn't time to find out everything they want to know. This is particularly true for people who need to be treated very soon after they are diagnosed. You should feel that you or someone close to you has enough information to make the decisions that are in your best interest as soon as is possible.
The specialist doctor (usually a haematologist or oncologist) who is responsible for your overall treatment is the best person to give you accurate information about your specific disease and prognosis. This is because he or she has the most information about your individual case. You may meet other people in the hospital or clinic who have the same type of disease as yours. While you may find it useful to talk to other people in a similar situation, it is important to remember that everyone is different and that their experience may not necessarily apply to you.
Anxiety, shock, denial or grief can make it difficult at times to absorb or remember discussions you have had with your doctor and it is common for people not to remember much of the information given to them at diagnosis. It is also common for people to want to avoid information until they have accepted or come to terms at some level with their diagnosis.
It is important to give health professionals like doctors and nurses clear indications of the amount of information you wish to have at a given time. If you want more information it is important that you indicate this clearly with questions and requests for further reading (booklets, websites) on the subject. If you want more information but find it difficult to ask, find a friend or family member who can ask on your behalf.
• Sometimesit is hard to remember everything the doctor has said. It may help to bring a family member or a friend along who can write down the answers to your questions or prompt you to ask others, or simply be there to support you.
• Before going to see your doctor make a list of the questions you want to ask. It is handy to keep a notebook or some paper and a pen by your bedside as many questions are thought of in the early hours of the morning. You may like to use the Leukaemia Foundation's Haematology Diary.
• Ask your doctor for written information or a summary letter.
• You may wish to tape record your initial discussions with your specialist doctor. It can be replayed later when you are in a better frame of mind to absorb the information.
• Don't be afraid to ask your doctor for clarification if you don't understand what he or she has said.
• Ask any questions you like, even the ones that sound silly or embarrass you a little. Every question is valid and important because it concerns you and your body.
• Allow yourself time to absorb information. A lot of the information you are receiving will be new and include lots of new terms which you will become familiar with over time.
• Remind yourself how far you have come.