Living with a meningioma and accepting the new me

Hi, I’m Ann. I live in South Wales with my partner, and I have a son who lives with his wife in Bristol. I enjoy spending time with friends and family, walking on the beaches and cliffs of the Gower Peninsula or in the many beautiful parks near where we live. When at home I like to cook, particularly curries or Greek dishes, and do craftwork: sewing and embroidery and generally making pretty things. I don’t watch much TV, but do enjoy a good crime drama if it’s not too violent or complicated!

My diagnosis

I was diagnosed with a meningioma in November 2018, after having a seizure. I was reminded of my Mum having a brain tumour when I was six years old; she had surgery in 1968. My first thought, when I was diagnosed, was that if she got through it, having had surgery 50 odd years ago, then so can I.

I didn’t really let my mind wander from this thought – it’s what saw me through until surgery, and I tried to focus on that, not on what could go wrong. It threw me a bit when, in December 2018, seeing my neurosurgeon in Cardiff, he said the tumour was in a challenging location on my skull base. My partner Pete was and is very supportive. The mantras he repeated to me leading up to surgery included “there’s no reason why this surgery can’t be 100% successful”, and “your surgeon has to sleep at night – he wouldn’t be doing the operation if he didn’t think there’d be a positive outcome”. I could tell that the skull base news caused Pete to wobble a bit, but I found the strength – we were, and still are, a team. In hindsight I think I was in denial, to an extent, about the magnitude of what was happening in the period between my diagnosis and surgery. It was my way of coping.

Having surgery

After I had my surgery in March 2019, I had a follow-up appointment with my surgeon four months later, and was trying really hard to be the perfect patient – I wanted to come off Keppra, the anti-seizure medication I was put on! Being told that I had to be on the drugs for two years at least, as my tumour was small, but in an area associated with seizures, devastated me. Everything caught up with me. It was the identity shift that was difficult – I wasn’t prepared for going from a ‘surgery survivor’, to ‘epileptic’.

Finding brainstrust

Shortly after this news, I rang a nurse specialist in Cardiff, but because she emphasised how I was “lucky to have this type of tumour”, and she used the word “benign” a lot (when it felt anything but!), I didn’t feel like she had much time for me. She did, however, give me brainstrust’s number, and I rang up in August 2019. I spoke to a fantastically supportive person on the phone, who sent me a brain box and signposted me to some places, the Maggie’s Centre in Swansea being one, and the brainstrust website the other.

This started a journey of support from brainstrust which I’m very grateful for. I’ve been to most of their webinars relevant to meningiomas, including ones about neuroimaging, fatigue, and so on. They’re always brilliant and very informative. The Meningioma Matters meetup group has also been a great source of support. I first joined in the autumn of 2020, and although I didn’t say much, other people were telling their stories, and it was a moment of revelation. They were just like me – they looked well and fine, and you wouldn’t guess they’d had surgery, but when they talked about the things I’d experienced, like fatigue, memory loss, cognitive issues, friends and family not understanding, etc, there was so much shared understanding and support between us. I felt like I’d been fighting it all, but joining the group made it easier to accept and come to terms with my experiences.

Once when I was on the group I mentioned having had MRI results that left me with more questions than answers. Helen was on the call, and after explaining how anxious and overwhelmed I felt, she recommended I try coaching. I ended up having fortnightly coaching sessions for a few months that year, and it really changed my perspective. Coaching helped me to understand I wasn’t being a ‘bad patient’ for asking my surgeon questions, and that it was ok to do this and get answers. Because of the support I got from coaching, I was able to decide not to spend the next year worrying, after I got some MRI results in September 2021. I would enjoy and make the most of the year ahead. brainstrust’s coaching gave me the confidence to ask the questions I needed to ask, and have open conversations with my neurosurgeon; and the webinars helped me to stay resourced and informed.

Accepting the new me

Hearing and reading other people’s stories has really helped me not feel so alone with the lifechanging nature of this diagnosis. I’ve learnt to accept the new me, and know that while I’m different to how I was – there are certain situations I now find difficult, and I don’t have as much energy as before – that’s ok. A brain tumour affects different people in different ways. Accepting this, and accepting help from everywhere it’s offered, plus talking about it and telling your story, can really help.

My advice if you are in a similar situation

My advice to others is to give yourself some slack – you will have bad days or moments, and it might be hard to adjust relationships according to how you’ve changed, but don’t be too hard on yourself. It may take a while, but it’s more than possible to find a new life that might be even better than before because you prioritise things differently. I’m now more aware of my needs and wellbeing, and I don’t waste time on things I don’t want to do, or that I know will take a lot out of me.

Write a lot – if you write down how you’re feeling, you can look back at some point and realise how far you’ve come. Be proud of yourself for getting through the dark days to a life that’s different, but still worthwhile.

 

If you are living with a meningioma diagnosis like Ann, brainstrust is here to support you. Visit our dedicated meningioma hub today for more information and advice. Call 01983 292 405 or email hello@brainstrust.org.uk to speak to a support specialist today. 

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