In Brain News

Building Resilience in the Face of Adversity

What does resilience mean to you?  In the current pandemic this is a word that is used a lot and it’s clear that resilience is important in helping us to cope with the challenges that life throws at us.  We also know that being told that you have a brain tumour is one of the most difficult things that you can hear and presents huge challenges to our ability to cope.  Although we are told that resilience will help us to cope with these tough times, is there anything that we can do to actively try to build this for ourselves?

Sammy Taylor from Beauty in the Brain

Here Sammy, friend of brainstrust and the author of the excellent and inspiring Beauty in the Brain blog, shares with us her thoughts on building resilience when living with a brain tumour diagnosis:

The past 18 months have taught me that resilience isn’t something we choose to be, nor is it a conscious decision we make. Resilience is something that is within us all and is a trait that grows and develops the more that we endure hardships and struggles and overcome the challenges we face.

Whilst anger, grief and sadness are completely normal and justified human responses to many life events, resilience is born from our ability to cope with these hardships and bounce back from setbacks when things don’t seem to go our way.

Although we can’t always choose the situation we find ourselves in, recognizing that change is inevitable, accepting the cards we have been dealt and strengthening our ability to build resilience, means that we can cope with stress and adversity easier.

  1. Find the opportunity to grow

Being resilient means having the ability to view our challenges as opportunities for growth. Not every situation will be desirable and some of the challenges we are faced with will require tremendous strength. But each will provide a lesson, or insight or a new way of doing things, if you allow it to. There are lessons to be found in every situation, we just have to be able to see them and some of the hardest things we have to go through become the biggest catalysts for change in our lives. No matter how difficult a situation can seem, stop and question “what can I learn from this event.” Doing so will encourage you to find acceptance and gain control of your reactions towards an event.

  1. Control the controllable and let the rest go

When faced with a health crisis or unexpected diagnosis, it can be so easy to start worrying about events that are entirely out of our control, expecting the worst possible outcome. But doing so is greatly unproductive, not only because most of our worries are fictional and never materialise, but because worrying also results in the feelings of helplessness and lack of power. A lot of our worries stem from internal insecurities and lack in our self-esteem. We worry because we assume that we won’t handle whatever it is that we believe could happen. Whilst we can’t predict the future, or situations we will find ourselves in, we can choose not to worry about events that are out of your control. Instead, decide to face whatever it may be when it comes and trust that if it does, you will handle it, like you have done so with many things in your life.

  1. Expressive writing

Expressive writing and journaling is something we can do to reduce stress by using the traumatic events in our lives to explore the deep thoughts and feelings we have towards these. Through the insights and understandings we get about our emotions, anxiety triggers and thought patterns, we can confidently analyse behaviours, process events more effectively, discover underlying stressors that might still be present and move forwards through the encouragement to slow down and reflect. Practice getting into the habit of writing down your thoughts freely and uncensored to understand triggers and proactively manage any negative thoughts or behaviours.

  1. Re-frame your thinking

It can be incredibly difficult to see the lesson or reason for a situation straight away. I felt this in the early days whilst suddenly faced with a stroke and facial paralysis following brain surgery, and needing to relearn the basics at 25 whilst my friends were leading very different lives. You can’t help but catch yourself thinking “why me?”, but I’ve since learnt how helpful it is to remember all the previous versions of yourself, and the past hardships that you couldn’t imagine ever getting through. Suddenly you notice that you made it through all of those things with the strength that got to this point today. Re-frame your thinking and switch your thoughts from “why me” to “why not me.” Choose to see your negative situation from a different, more constructive perspective and notice how trusting you begin to feel about the path you’re on.

  1. Know that there’s something good in every situation

I know how impossible feeling grateful or seeing the silver linings can seem when we’re in the middle of a really challenging situation. Yet as painful as it might be, there is always something to be thankful for. Finding the positives within a situation, and focusing on those, will allow you to feel more able to cope and accept certain life events. Following my stroke, I was left with permanent nystagmus, which affects almost everything I do by giving me the illusion that the world is constantly moving around me. But despite it, acknowledging how blessed I was to still read my favourite books, watch movies and see loved ones really helped me to find acceptance and adapt to certain physical changes. Although things are much more difficult as a result of my visual impairment, gratitude for having any sight at all has enabled me to remember all the things I can still do within this moment. Challenge yourself to imagine how your situation could be worse than it is and feel encouraged by the realisation that through doing this, you will find a positive that will allow you to appreciate where you are right now. Focus on the thing you’re still physically and mentally able to do, then do more of that.

  1. Face your fears

When it comes to fears, highly resilient people understand that changes are inevitable and part of life. Whilst a little bit of fear can be a good thing and protects us from danger, most of the time it holds us back from living our lives and pushing ourselves outside of our comfort zones. But the fear of something never goes away for as long as we continue to grow, and we’re always going to experience it whenever we’re faced with something new and unknown. However, the more that we face our fears, the smaller and more manageable they become and when we tackle the things that scare us and eventually overcome them, our confidence and self-esteem skyrockets. The more we practice overcoming our fears, the better prepared we are to face whatever happens in our lives.

  1. Change self-talk

It’s so easy to immediately overthink a situation or imagine the outcome of it to be far worse than it actually is. But most of the time, this is down to our internal dialogues and the conversations we have with ourselves. The self-talk we adopt not only affects our behaviours towards events, but also our reactions during them. When you catch yourself imagining the worst possible outcomes towards a situation, instead flip it and realise that if the worst possible outcome is possible, then the best is also achievable! We can’t always change or control the events we experience in our lives, but we can control our reactions towards these and how we choose to view them.

  1. Add meaning to your life

Do something that encourages you to view setbacks with a broader perspective. Volunteering for others, taking up a new hobby or helping a local community encourages us to recharge by doing something that we’re passionate about. Usually by connecting with others through these events, we’re encouraged to put our stresses aside and learn that others are likely overcoming their own challenges and needing support, just like us.

Rather than resenting the obstacles on your path and assuming that life would be better if certain things didn’t happen, realise that life is the obstacles we are faced with. It’s our responsibility to strengthen our ability to navigate these, find calm and peace in the everyday and trust that something better is always just around the corner.

Read more about Sammy’s personal brain tumour journey, and shop her beautiful selection of jewellery (with 10% of profits coming to brainstrust) here.

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Maximus Foundation donates £2,500 to support people with a brain tumourCharity News
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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 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