Feel on top of things as a caregiver

Becoming a caregiver for someone with a brain tumour can happen abruptly or creep in slowly unnoticed until one day you realise you are caring more for someone else than you are for yourself. Here you will find tips and information on how to look after yourself and create the space you need through this unexpected journey you find yourself on.

On this page you will find:

Self Care

As a caregiver, you may often feel like life is focused on your role of caring for someone with a brain tumour diagnosis. It may seem like there is no time to do things that you enjoy or you may feel like you don’t have any time to yourself.

Setting aside some time in your day to do something for yourself will give you some space from your caring role and bring some pleasure into your life.

“Self-care is how you take your power back.”– Lalah Delia

 

Make yourself a list of things that you enjoy. Maybe these are things that you used to do regularly before the brain tumour diagnosis. These can be things that you can do alone or with your loved one as well.

Below are some of our suggestions to help get you started. Keep your list somewhere you can find it easily and try and tick off at least one a day.

 

Walk the dog Bake a cake Organise a cupboard Do an exercise class
Have a bath Meet a friend Read a book Treat yourself to something new
Watch a film Go out for dinner or get a takeaway Plan a weekend away or a special day out Try some relaxation techniques

 

To be able to factor self-care into your day effectively, start off with something small and then over time you can build up to planning a longer activity when you feel ready and able.

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Find brain tumour support on your doorstep, and current brain tumour trials at www.braintumourhub.org.uk

Mindfulness

brain tumour caring and mindfulness know howAs a caregiver, you will have lots of different thoughts and emotions and may feel burdened and overwhelmed by these. By building mindfulness into a part of your day, this can help you feel more on top of things and in control.

The practice of mindfulness is about taking the time to focus on one particular task or activity, feeling relaxed yet awake and aware, and being completely in the present moment.

Read our Know How on Mindfulness for more information on how to build this practice into your life.

Download the Mindfulness Know How

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Dealing with the overwhelm


When life suddenly changes and you find yourself in a caregiver role, it is hard to know which way to turn. Suddenly you are thrown into a new routine that you weren’t prepared for. In between hospital appointments, treatment, a new role in the household and caring for yourself you may find yourself feeling overwhelmed.

Read our Know How on Dealing with the overwhelm for some tips and strategies you may find helpful.

Download the Dealing with the overwhelm Know How

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How to have a voice as a caregiver

Being a caregiver is a daunting role – you need compassion, fortitude and fierce resilience. And more often than not, you are living these values on behalf of your close person, but never for yourself.

This Know How will help you find your voice as a caregiver of someone with a brain tumour.

Download the How to have a voice as a caregiver Know How

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Living with uncertainty when you are caring for somebody with a brain tumour

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When a loved one has been diagnosed with a brain tumour, you may feel that your life is less secure, more fragile than it once was. You find yourself living in a space where nothing seems anymore. It’s a scary place to be, and it can leave you feeling out of control and overwhelmed.

This Know How will help you with some tips and strategies to help you feel comfortable with living with uncertainty.

Download the How to live with uncertainty Know How

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How to feel supported as a young carer

If you are under 18 years old and are helping to take care of someone with a brain tumour, you are a young carer. You could have a sibling, parent or relative with a brain tumour who you are helping to take care of.

This Know How will help you to feel more in control and supported as a young carer.

Download the How to feel supported as a young carer Know How

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How to prepare for medical appointments as a caregiver

When someone you love is living with a brain tumour diagnosis, they will have regular medical appointments and check-ups at each stage of their pathway. These appointments are a key part of your loved one’s clinical care and are an opportunity for you to get key information and ask questions about their condition and treatment plan.

It’s not always easy as a caregiver to find your voice in a consultation. In this Know How, we will explore how you can feel prepared for medical appointments as a caregiver, how you can make the most of the time you have with your loved one’s clinical team, and some strategies to help you feel more resilient and on top of things.

Download the How to prepare for medical appointments as a caregiver Know How

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Brain tumour support is driven by your support. We know. Click here to help us do even more for people living with a brain tumour in your area.

Did this information make you feel more resourced, more confident or more in control?

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerousNon-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php