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A guide to navigate your brain cancer diagnosis

This resource is designed to assist patients diagnosed with brain cancer to keep track of appointments, medications and important questions to ask.

WHAT IS SURVIVORSHIP?

Survivorship to us means to focus on the health, wellbeing  and quality of life of patients and their families who are living with and through a brain tumour diagnosis

Your Medical Diagnosis

When first diagnosed with a brain tumour, there are a few things that you should consider, in addition to your treatment plan. You do not need to have all the answers straight away and our diagnosis chapter covers a few of the topics to consider.

What is and who treats brain cancer
Your treatment pathway
Considerations once you are diagnosed
Learn More
DEMI TROMP - Brain Cancer Patient

Who Treats Brain Cancer

The treatment of Brain Cancer involves a team of specialists since it is a complex cancer. Patients are usually referred to their local "Neuro-Oncology Multi-Disciplinary Team (MTD)" where they may receive assistance from experts such as neurosurgeons, neuropathologists, and radiation oncologists.

Surgery and recovery
What to expect from radiation
Chemotherapy treatment
Learn More

Living With Brain Cancer

Having Brain Cancer changes your life experience completely. It's important to prioritise self-care more than ever before. This is because you not only have to deal with a significant health issue but also with worries and concerns that you may not have encountered before.

Impairments & Disabilities
Financial Management & Insurance
Mental & Emotional Wellbeing
Learn More

WHY WE CREATED THIS RESOURCE

See what other patients are saying about the survivorship diary.

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“Star Rating5 out of 5 starsDescriptionI work for NSW Health and ordered these resources for some of our children and families based on feedback from families with lived experience who said the survivorship diary was most helpful in navigating their cancer experience, and reduced the overwhelm. The correspondence was prompt, helpful and supportive, which I appreciated and know families will too.”
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“Prompt responses. A excellent resource”
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“Lovely diary and a good place to keep track of appointments and information”
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“At a very difficult time for both myself and my family this diary has been invaluable. The support and care that has been put into this is greatly appreciated”
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“What a wonderful idea. I have been writing on all bits of papers but now can jot it all down in one book. Thank you”
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“I would like to thank you for the Survivorship Diary. It’s very informative and has a lot of space to put all my information and appointments ect in. At the start when told of your diagnosis you have so many questions that you might not even ask but this diary helps you through with great information that you can keep going back to.”
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“It’s an amazing diary and is highly appreciated”

RESOURCES AND HELPFUL WEBSITES

In building this guide, we consulted with doctors and patient advocates from around the world.

Throughout the diary you will find helpful resources from the various resources and organisations that consulted in the Survivorship Diary development. We have compiled a list of resources for patients to help you easily access the support and assistance you require.

More Details

Mark Hughes Patient Packs

A source of hope and support for patients and their families who are coping with brain cancer.

Brain Cancer Support

Patient support services from point of diagnosis through to bereavement.

Brain Tumour Alliance Australia

Dedicated to representing the interests of brain tumour patients, their families, and caregivers.

OUR PARTNERS

Working together for Survivorship

We are proud to partner with the Mark Hughes Foundation to provide The Survivorship Diary to brain cancer patients all across Australia. The Mark Hughes Foundation (MHF) is a charity formed in Newcastle by Mark and Kirralee Hughes following Mark's diagnosis with Brain Cancer in 2013. The Mark Hughes Foundation's mission is to raise much needed funds for research, to create awareness and support brain cancer patients and their families.

A MESSAGE FROM CASS - Survivorship diary author

Long before brain cancer I was an athlete.

I remember a coach telling me that despite the isolation, you might find the 'hurt locker' that 'nothing worth doing can be done alone.'

Today as a patient, I wholeheartedly agree with this sentiment. When I was first diagnosed, people from all aspects of my life leant in to help my family as we navigated this new challenge.

Similarly, nothing in my life has required as much teamwork as much as building this resource. I have leant on friends, acquaintances, doctors, other patients, carers and family to bring The Survivorship Diary from thought-bubble to reality.

If you have found this website after you or someone you know has been diagnosed with a brain tumour, I hope this resource is helpful for you and your family.

Cassandra Bennett - Creator of The Survivorship Diary.
Read Cass' Story

HOW DO I GET A COPY OF SURVIVORSHIP DIARY?

Simply order your free hard copy below or download a digital version to your device

Order your
free hard copy of Survivorship

If you or someone you know has been newly diagnosed with brain cancer in Australia, you are eligible to receive a Survivorship Diary. Simply place an order and the diary will be shipped within two business days.

Order Your Free Copy

If you can please
help us continue
to grow

Help us provide diaries to newly diagnosed brain cancer patients
by donating to the
Mark Hughes Foundation.

By generously supporting, you can make a significant difference in the lives of patients, carers and
their families.

Make A Donation

Download a
digital copy of Survivorship

Although the Survivorship Diary is mainly geared towards newly diagnosed patients, there may be some valuable information that can benefit those at any stage of their diagnosis.

Digital Download

Frequently asked questions:

Can I order a diary if I am not
newly diagnosed?

Although the Survivorship Diary (TSD) is primarily intended for newly diagnosed patients, you might discover that some of the wellness and future planning information contained within it could be helpful.

There aren't enough pages to get all my information down?

We value feedback from our users as we continue to improve TSD to better serve patients' needs. We provide a free digital download that enables users to print out extra pages and store them securely in the plastic pockets at the back of the diary. We are excited to offer more resources to help patients document their journey and keep their thoughts safe.

Is the diary suitable for children diagnosed with Brain Cancer?

When it comes to treating cancer in children, paediatric care may vary. Our goal is to serve more patients by providing a Survivorship Diary that is specifically designed for children in the future. We would appreciate any feedback or ideas on how we can improve our services to better meet your needs.

How many diaries can I order?

TSD depends on kind donations from the public and foundations we collaborate with to keep this resource available to all individuals affected by brain cancer. To guarantee that we can keep providing the diary to patients and their loved ones, we kindly request that you order only one diary per patient. If you are a healthcare provider and would like to distribute TSD, please reach out to us via email at - contact@survivorshipdiary.com.