Adult Patient Resource Handbook
5th Edition
Introduction
The words Brain Tumour have been flashing through your mind since you or your loved one had been given this diagnosis. Many questions will arise during this journey. What does it mean? What can be done? How will you cope?
This Patient Resource Handbook has been written especially for you and is directed to patients, family members, caregivers, and any other individual who has been affected by a brain tumour. On the following pages, you will find a wealth of information that we hope will help you through this difficult time. It has been designed to help you learn about this diagnosis, the possible treatments, and all of the services that are available to you and your loved ones.
Many people are involved in the care of a person with a brain tumour and it is important that the patient becomes an active member in their health care team. This team can be made up of physicians, neurosurgeons, nurses, pharmacists, radiation oncologists, neuro-oncologists, dietitians, therapists and/or social workers, to name a few. You will be meeting health care professionals in various fields that may be new to you. Ask your health care team what literature is available and read as much as you can about your diagnosis.
There are many ways that you can be active in your care. Keeping the lines of communication open with your health care team is essential to ensure that the right plan of care is designed for you. Do not be afraid to ask questions and write down the answers. It is often easy to forget specific instructions when trying to understand everything that is happening around you. Having these answers and instructions written down will often help your memory. Also, it is important to report any important information back to your health care team, such as symptoms, and any side effects from treatments or medications. Keeping a journal is an effective way to keep track of appointments, medications and dosages, your progress, phone numbers and emergency contacts, as well as any questions as they arise.
It is important to remember that you need to be your own advocate. The shared responsibility is in your hands for you to receive the absolute best care our health care system has to offer. It is difficult to do this by yourself. Appoint yourself an additional advocate such as your spouse, a relative, or friend. This person will ask questions on your behalf and support you. It is a good idea to have someone attend appointments with you.
This Patient Resource Handbook has been prepared to assist you in the weeks, months, and years ahead as you learn to live with a brain tumour diagnosis. It does not provide all the answers. Our hope is that with this resource as a guide, you will be able to learn more about your diagnosis, and will be able to know where and how to ask for help.
It may be beneficial for you and your loved ones to speak to other individuals or families that have dealt with a similar situation. There can be great comfort in knowing that you are not alone. The Brain Tumour Foundation of Canada offers Support Groups across the country, to connect people and offer support and coping skills for those affected.
Contact the Brain Tumour Foundation of Canada to learn more about these groups, and other resources available to you in your community at 1-800-265-5106 or by visiting the Get Support section of our website. We are here to provide you with information and support throughout your journey.
Brain Tumour Foundation of Canada would like to thank the incredible committee of individuals who have provided their support with the review and update of the Adult Patient Resource Handbook and the many health care professionals that have provided their time and expertise to update and edit the content.
Brain Tumour Foundation of Canada would like to thank Schering Canada Inc., the producers of Temodal® for their generous support in the production and distribution of this Handbook.
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À 2003 Brain Tumour Foundation of Canada 1.800.265.5106
Charitable Registration #BN118816339RR0001 |