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We spoke to Anita about how she has used creativity as a tool to help her move forward following her brain surgery.

In 2018, Anita had two operations to remove two meningioma brain tumours. Like for so many others, her diagnosis came as a huge shock. She was 52, happily married with three teenage children and her beloved cat! Following these two surgeries, and learning to live with fatigue and the other consequences of her diagnosis, Anita is embracing her new reality through an emphasis on her well-being, and exploring creativity.

As she puts it, she is ‘Coming to terms with her new world as if a child – marvelling at its beauty’.

Below, Anita has shared some information about her artistic and creative journey and how this is helping her to improve her well-being and self-esteem:

I have a mission to connect old neural pathways and develop new synapses from new experiences within my accepted comfort zone. To develop my self-esteem and feeling of self-attainment. To laugh and smile at the silliest things!

Apprehension

I made a mistake. I’ve been focusing on my brain but really the true recovery is going to come from the mind! The distinction I make between the two is that the brain consists of the physical matter, which I leave up to the doctors to take care of (they do an amazing job!) but in reality there are no absolute answers to the questions I have. The mind is responsible for things like my imagination, creativity and subconscious which is up to me to develop in order to cultivate my happiness.

Resistance

What am I afraid of? Coming out of my comfort zone? I live in my own self-built cocoon… but I have been told the grass is greener on the other side.

It feels like I have been asked to complete a 100-metre hurdle race, but I’ve never jumped a hurdle! We can live in an illusion of such disbelief, especially in the pandemic, about what we can do?

My immediate response is resistance, step away as it’s all new and I don’t have the skills…

My discovery

Creative tasks have taught me to accept my apprehensions and shown me with small steps that I can discover something new and hidden in my inner self…

Accessing the right side of my brain, combining soul and consciousness with intellectual creativity to deliver an intrinsic compassionate response.

It’s a leap of faith as with each brush stroke or sentence I don’t know what is going to come out as I unlock different doors in my mind…

I concentrate my efforts with all I can muster at the time by practicing divergent thinking methods (as opposed to convergent thinking). I’m learning to not overanalyse every task – get real and focus on the task at hand. Breathe the moment, take it in steps and learn as I try.

Creativity has given me a sense of purpose in my otherwise muddled, confused mind. It’s delightful, beguiling and surprising, especially as it’s all novel to me.

My methods and what I found

  • Dry clay modelling
  • Water colour paintings
  • Decorating cakes (Christmas cake)
  • Painted glass jar (Diwali)
  • Poetry
  • Creative writing
  • Mindful art therapy

I have begun to recognise that when I am writing, creating or painting something, my mind is somewhat detached. It dissociates with what I’m doing, so I don’t have a total grip on what I’m producing. I consciously feel disconnected so it’s a surprise and a wonder when I produce something. It’s like opening an unexpected present – you just hope for the best!

I’m creating a blueprint of how my mind wishes to explore and express itself. It’s a charming, enchanting delight, a road of discovery, a mental way of massaging and soothing the mind. It’s a live meditative engagement. It acts like a medicine to the body and a fruitful remedy for the mind.

“Art feeds the brain” – May Archer

“Unlock the mystery, put into words what you feel… share your thoughts, ideas, dreams… a picture speaks a thousand words…” Anita Williams (me!)

My situation sometimes makes me feel worthless, but this is work I can do. Nobody can say it’s useless, or that I can’t do it.

I’m communicating to the world that I can do something and I’m open to intrinsic ideas, individual improvement and my hidden awareness. This is my exploration of my mind and brain to see what is there, what I am left with. I welcome a transformation of me and my mind, as opposed to just the physiological brain. And the bonus? By exploring my subconscious I’m showered with feel good endorphins.

Read Anita’s poem ‘Is resistance futile?’ here.

Plough on

When I get stuck, I stand back and re-assess the situation from a different angle. Leave it for a day or two and finally a penny might drop somewhere…

This makes it therapeutic as I mentally massage my brain. I’m connecting old neural pathways as well as reaching out to create new neuronal connectors and my reward? Feeling my endeavours were worth it, as the next time that I am faced with a creative task I have the confidence to give it a shot.

It’s daunting and scary. Can I paint like Monet straight away? Do I really need to answer that? Drop my unrealistic expectations and just give it a shot – it’s an achievement just trying… finding some of my lost self-worth and exploring a selection of my undiscovered talents.

“I create beautiful art so I can look back on the life my body fell short of in such a way that it brings me peace” Nikki Rowe

“Art can permeate the very deepest part of us, where no words exist” Eileen Miller

Try it for yourself

Anita sees countless advantages of embracing creativity:

Getting to share a part of yourself with others, teaching your mind to focus, uncluttering your mind, giving yourself some me time, letting go of the fear of making mistakes are just some of them!

Below, Anita has shared some pointers to help you get the most out of your creative adventure – whether it’s poetry or painting!

  • Stretch before you start – try yoga, breathing exercises, or just putting your arms above your head and smiling!
  • Play music that relaxes you
  • Find a place to create where you feel happy and calm
  • Early in the morning can be a good time to be creative, as the mind is less cluttered
  • Speaking of clutter! De-clutter your environment so you have an uncluttered mind
  • Keep hydrated with water
  • Wear comfortable clothing and make sure you are warm
  • Make sure other members of the household know that you are working and require peace and quiet to focus!

If you’d like to explore well-being and creativity to help you on your brain tumour journey, join us for all sorts of activities this Brain Tumour Awareness Month.

The Great brainstrust Create-Off is the perfect opportunity to share some of your creativity with the brain tumour community.

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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