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What is survivorship?

Survivorship to us means to focus on the health, wellbeing and quality of life of patients, as well as their families and carers.

WHAT SURVIVORSHIP MEANS TO US

It's not just a diagnosis that has changed. Your whole life has.

We strive to help you navigate and document the journey from diagnosis to treatment as well as the day to day management of life after receiving a brain cancer diagnosis.

The following is a brief overview of the contents of each chapter in the diary.

Chapter One: Your Diagnosis

What is Brain Cancer? Brain cancer is a complex form of cancer and is treated by a range of specialists.

This chapter will provide information on the different types of brain tumours (primary or metastatic), help you understand new medical terms, and answer some common questions you may have during the early stages of your diagnosis.

You will also find resources to assist you in keeping track of where your tumour is located and what the next steps in your treatment plan are.

Chapter Two: Surgery

Surgery is often the first step in treatment. The primary goal of surgery is to establish a diagnosis by taking a biopsy of the tumour. The second goal of is to remove as much of the tumour as possible.

In this chapter, you will find guidance on the surgical process and recovery. Additionally, there is a designated section to keep track of your post-surgery notes and there is a hospital checklist provided to ensure you are well-prepared for the day of the surgery.

Chapter Three: Radiation

What to expect from Radiation. Radiation therapy is carefully planned for each individual to ensure an accurate dose is delivered to the tumour, and the minimal dose is delivered to the surrounding brain.

This chapter covers the process of treatment delivery, including schedules, post-treatment expectations, potential side effects, and important considerations before starting treatment.

Chapter Four: Chemotherapy

What to expect from Chemotherapy. Cancer cells are defined as cells that are growing and dividing faster than normal cells, chemotherapy works by stopping the cells from growing, dividing and making more cells.

In this chapter, we will discuss the various types of chemotherapy treatment options available, along with safety precautions to keep in mind. We also explore additional medications that can help manage symptoms and the impact of the disease on the patient's overall health. Furthermore, we have included a medication management tracker where you can keep track of your prescribed medication protocols, as well as any reactions, side effects, or concerns you may have.

Chapter Five: Mental & Emotional Wellbeing

It's important to equip yourself with the best resources. Treatment and management of your brain tumour will impact on your mental and emotional wellbeing.

In this chapter we focus on how you can keep on top of your overall mental health as well as loves ones while undergoing treatments and beyond.

Chapter Six: Seizure & Neurological Health

It's common for patients to have neurological symptoms due to tumour or the treatments received.
These symptoms can differ from person to person and manifest in various ways.

This chapter discusses the symptoms that patients may encounter and how to manage different types of seizures and epilepsy. It also provides a seizure tracker to accurately document any neurological events.

Chapter Seven: Living with Brain Cancer

Diagnosis creates a whole new experience on life. It is important that patients are equiped to deal with a number of unexpected changes in their life.

This chapter discusses the importance of maintaining a good quality of life and taking care of both physical and mental health. Additionally, it includes information on helpful resources such as counselling and support services for patients, caregivers, and loved ones.

Chapter Eight: Finances

It's important to understand your financial situation. Even if your immediate health outlook is positive, planning will help you manage any future changes in capability.

In this chapter, we will discuss how to understand the entitlements that come with employment, insurance policies, financial assistance, and government funding. We will also cover how to gather information about your financial obligations and make sure your financial wishes are discussed with your family and documented properly.

Chapter Nine: Palliative Care

The discussions around Palliative Care can be difficult. Palliative Care focuses on the whole patient not just the cancer and it is known that early access can improve the patients life expectancy while assisting in the management of treatment.

This chapter discusses the responsibilities of the palliative care team and what services they can provide. Additionally, we emphasise the crucial role of the caregiver and the need to take care of them as well.

Chapter Ten: Aditional Resources

In the Survivorship Diary, we have mentioned several organisations and resources. In this concluding chapter, we will provide a summary of all these resources and their respective websites and contact details.