In Campaign News, Charity News

Real self-care – Brain Tumour Awareness Month 2021

For Brain Tumour Awareness Month, we’re looking into the theme of self-care and how it can be transformative for people with a brain tumour. Understanding what self-care is (and what it isn’t!) can build resilience, happiness and make it easier to face the road ahead.

What do we mean by ‘real self-care’?

We’re moving beyond the bubble baths and scented candles you see advertised on Instagram. Real self-care can be transformative in helping you rest and recharge, connect to your inner self and live a life that is aligned with your values.

Having said this, we are definitely not anti-bubble bath! Making the conscious decision to take time out for yourself and prioritising your relaxation are definite reasons why bubble baths are a legitimate self-care practice. What we’re focusing on for Brain Tumour Awareness Month, however, is the self-care that dives a little deeper.

In our ‘Beyond the Bubble Bath’ webinar on 30th March, we’ll explore this topic. Together we’ll look at the science behind happiness, why so many of us feel unfulfilled and why we can end up feeling like the grass is greener on the other side. And after we’ve explored the psychology, we’ll look at practical strategies to help you discover authentic happiness when living with a brain tumour.

Check out the rest of our online events this month, curated to help you live better with a brain tumour.

Self-care is often spoken about, particularly on social media, in the context of short-term pleasure. This ‘treat yourself’ mentality puts the emphasis on making decisions that feel good right now. This could be an impulse purchase, or staying in bed scrolling on your phone after your alarm goes off. Things like this feel tempting at the time, but often they can leave us feeling guilty or disappointed. If you can relate to this, you might benefit from some ‘real self-care’.

Here, we’re talking about activities and strategies that can help improve your happiness and well-being in the long term. We’ll explore some examples of these below.

Self-care when you have a brain tumour

Self-care takes on another level of importance when you are living with a brain tumour. Below, we’ll explore some relevant self-care practices and how they can specifically benefit people affected by a brain tumour.

Living well with fatigue – establishing a night-time or morning routine

Managing fatigue is a complicated topic. Even the best habits in the morning and evening won’t eradicate it’s impact on your life. However, good night-time and morning routines can help you to minimise the impact of fatigue on your life.

You can read our guide to sleeping better here, and find our Fatigue Resource here.

Just one self-care practice you could try is limiting screen time before bed. It is well-known that blue light can impact our sleep quality. Do you often find yourself tempted by a night time scroll? Why not leave your phone in a drawer (or even in another room) an hour before bed? Instead of scrolling, listen to a podcast, read a book, chat with your loved ones or try some journalling.

Reflecting on your emotions and figuring out your needs through coaching

A brain tumour diagnosis forces you to make big changes to your life and can require you to make incredibly personal and difficult decisions.

Coaching can help you to accept the reality of your diagnosis, and help you articulate your priorities. From this place, it is easier to make difficult decisions, accept the unknown and make peace with the outcomes, because you are living a life that reflects your values and priorities.

brainstrust offer free coaching to people with a brain tumour and their loved ones. To find out more and to organise a coaching call with one of our trained support specialists, email hello@brainstrust.org.uk.

Joyful movement

We know that regular exercise is good for us for all sorts of reasons. Physical health and fitness are obvious answers, but evidence shows that exercise reduces stress and improves mental health too. If a home workout or a run isn’t possible for you (or doesn’t appeal to you, which is totally valid too!), there are other ways to reap the benefits of exercise. Dance around the kitchen to your favourite song, or take a walk in the park. When we remove the pressure of comparison to others, and focus on what we enjoy, it is far easier to build a habit and therefore enjoy the many benefits of an exercise routine!

Great exercises for people with disabilities or mobility limitations from Dom Thorpe, founder of Disability Training.

 

 

Setting boundaries

This is a perfect example of how real self-care sometimes feels uncomfortable in the moment, but can have a positive outcome for you long-term.

Articulating your needs can feel very scary and can sometimes lead to people being defensive. It can be tempting to sweep our feelings under the rug to avoid ‘causing a fuss’. We shouldn’t do this – healthy boundaries are a crucial component of self-care. That’s because “in work or in our personal relationships, poor boundaries lead to resentment, anger and burnout” (Nelson, 2016).

Here are some examples of when you might need to set a boundary with your loved ones when you have a brain tumour.

  • Say you are experiencing brain tumour related fatigue. Sometimes, friends and family don’t understand its intensity or severity. They can expect you to carry on with activities that you would have done before your brain tumour. Setting a clear boundary that when you feel the need to rest, you will rest, and that comments around what you “used to be able to do” are unhelpful, will mean that you can look after yourself, focus on your rest and recovery, and not feel pressured to live up to anyone else’s expectations.
  • Having a brain tumour can make you more reliant on your loved ones than before. Examples might be during and following treatment, or if you have to surrender your driving license. What boundaries could you put in place to maintain a sense of independence and autonomy? Articulating these to your loved ones will benefit everyone.

If you’d like some help in setting boundaries with your loved ones, come along to one of our Meetups to talk to others, or call us on 01983 292 405.

Exploring your creativity – even when you don’t feel like a ‘creative person’

It’s all too easy to spend your time making sure the people around you are OK, but you need to make time for yourself, too. In these moments where you prioritise yourself, you have a unique opportunity to check in with yourself and reflect on what brings you joy.

When we are engrossed in a hobby or activity, without even realising, we are practicing mindfulness! Stresses and worries disappear as we focus on the task at hand. Maybe you love cooking, jigsaws or painting – whatever it is, make sure that you slot time in every week to focus on yourself and the things that make your heart sing.

There are so many benefits to practicing creativity. From improving problem-solving skills, to reducing anxiety, even complete beginners can find calm and enjoyment in creative practice.

Read about how creativity has helped Lou on her brain tumour journey, here.

The Great brainstrust Create-Off is your chance to share your creativity with the brain tumour community. Find out more here!

 

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Stephen and Rob’s 24 Hour ChallengeDo your own thing, Fundraising News
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Research to support children with a brain tumour returning to schoollittle brainstrust, Research News

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 cancerous. Non-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