Living with a meningioma and remaining true to myself

Rowan is a mum of two, competitive horse rider and scientist. At the age of thirty-eight, Rowan was diagnosed with a Meningioma and her life was turned upside down. In this piece we tell Rowan’s story, from the worrying build-up to the diagnosis, to the strain of surgery, to finding her feet and her identity again during recovery.

Rowan fell in love with horses at three years old. Her mother had taken her to see them at a local riding school and once she’d set her eyes on them, she knew this was a love she would never outgrow. She worked extra newspaper rounds and waitressing shifts to afford riding lessons in her teenage years, and later pursued a degree in equine science and a PhD in veterinary preclinical science. It seemed nothing could stop her.

 

But everything paused at thirty-eight years old when she was diagnosed with a brain tumour.

 

The realisation that something wasn’t right developed slowly with symptoms of fatigue, which she quickly attributed to her two kids, high pressure job, and demanding upkeep of competing with her horse. She’d always led a busy life, and it seemed like perhaps the burnout she had been warned about had finally caught up with her.

 

But then after one weekend horse riding, her eyes started to water. She felt a bit dizzy, and her neck became stiff. There was a weird crunching noise as she turned her head, and her arms felt strangely weak. It all seemed odd, but nothing extreme.

 

Rowan took her symptoms to her GP who presumed that her symptoms could be attributed to her competitive horse riding. She was diagnosed with mild whiplash over the phone and referred to a physiotherapist, but that didn’t seem to help.

 

Over the next few months she also began to notice her right eyelid drooping. It’s just ageing, she thought to herself, but the apparent asymmetry between her two eyes had begun to bother her, and she doubled down on the expensive anti-ageing eye creams.

 

The week before Easter, she developed a headache. She could pinpoint it to right above her right eye. Perhaps this was caused by eye strain, she thought, blaming the nagging pain on the multiple screens she used for work. But later that night it had developed into a burning migraine. It felt like her eye was on fire. Somehow, she managed to continue through a full day of work, alternating between optimistic doses of paracetamol and ibuprofen.

 

It felt like a fog had overcome her right visual field. Three days passed. She continued to ride her horse, competing, jumping, living her life, but all the while, she knew something wasn’t quite right. Whatever this was, it was here to stay.

She decided to call 111, who told her that she needed to be seen at the hospital. Surprised, her partner took her to A&E. Sitting there, she “just felt like a fraud. Looking around at everyone else who appeared sicker or in more dire need of medical care.” At nearly 4am, with a burning headache and foggy vision, she was sent for a CT scan.

 

Rowan was told that the results of the CT scan showed a mass in her head, and that she would need to be sent to another hospital with a neurology department where specialists would administer an MRI scan, and that surgery would likely follow. That’s it. She thought. My life is over.

 

The moment was world ending. What have I done? She wondered. What did I do to make this happen? Have I put my kids at risk? But she quickly moved into action. How can we make this work? You need to change your mindset. Don’t get worked up.

 

Rowan was taken in an ambulance to Leeds General, where she had an MRI scan in the early hours of Easter Sunday. Her surgeon began to describe the tumour to her – it was a three-to-four-centimetre diameter sphenoid wing meningioma, and it was pushing on her right optic nerve. There was no discussion of needing to watch and wait, the surgeon asserted they would be taking it out.

 

It turns out Rowan had been living with this tumour for almost fifteen years, but only began to present symptoms due to its size and the resultant pressure on her optic nerve.

 

In the weeks leading up to the surgery, Rowan prepared for the worst. She was afraid she wouldn’t come out on the other side the person that she was going in. That she wouldn’t be able to live her life the only way she knew how. That she wouldn’t be able to be there for her kids. She was worried about having a stroke, paralysis, memory problems, speech issues. She had begun to paint this picture of a brain tumour patient and couldn’t believe that that might be her.

On the 9th of May, she was re-admitted. The surgery began with an embolisation, cutting off the blood supply to the tumour. The surgeries were successful, and the tumour was fully resected via a craniotomy on 10th May.

 

Having already been through an overwhelming few months, her recovery proved no easier. During the first operation on 9th May, her trigeminal nerve was damaged, causing her to lose normal sensation on one side of her face. She managed to retain motor control in the area, but lost all feeling, even on the roof of her mouth and her gums. After the surgery, she experienced immense swelling, dizziness, and strange sounds. Bright lights and loud noises were unbearable for weeks. The egg sized lump on her head where the surgeons had cut into her jaw muscle and skull seemed to only be getting larger, not to mention the unbearable wait for the histopathology results, which eventually confirmed that the tumour had been a Grade 1 (non-malignant) meningioma — a cause for small celebration.

 

After a few weeks, she checked herself back into A&E for testing but was assured that the swelling was normal and healing would take time. She battled on for weeks, unsure how she was supposed to learn to live like this.

 

Nearly eight weeks post-op, the swelling was relentless. Caught between dizzy spells, eyes she could barely open, and a rotating shift of ice packs, she knew something was wrong.

 

And then on 1st July, the incision burst open and fluid began pouring out. It turned out that she did in fact have an infection. It was almost a relief given how unbearable the pressure was.

 

On the 2nd of July, Rowan had an emergency craniotomy, which was somehow more terrifying than the first. If the infection was within the jigsaw-like puzzle piece of skull they had removed, she would have to wait for a custom plate to be made – meaning yet another craniotomy. But they were able to wash and save the bone, and after this second surgery, she immediately began to feel more like herself. The swelling subsided as it should have the first time, and her vision and balance were restored.

 

Looking back on her symptoms, Rowan managed to maintain an admirable level of gratitude and sense of humour. She even kept a list of things that can’t cure a brain tumour —

  1. Expensive eye cream
  2. Lubricating eye drops
  3. Sinus medication
  4. Lavender and bedtime teas
  5. Taking five hundred photos of your face and eyebrows
  6. Rearranging your office for better Feng shui
  7. Baling twine (that fixes almost anything in the horse world!)

 

It seemed easy at the time to explain away her symptoms with life pressures, busyness, and natural ageing until it became clear that something was out of the ordinary.

 

And despite her worst fears of what it meant to take on the identity of a brain tumour patient, Rowan has begun to find her way back to herself. With a quiet tenacity, she’s developed a renewed focus on family and self-care. She’s found a way to centre her gratitude on the kindness and empathy of those around her. Her patient resilience is admirable.

 

And just a few months after surgery, Rowan has returned to being a mum to her boys, working, driving and riding her horse. It turns out, nothing can stop her.

 

 

If you or someone you love has a Meningioma diagnosis you can visit our Meningioma hub for more information and support. Alternatively, reach out to the support team on hello@brainstrust.org.uk or call us on 01983 292 405 and talk to a support specialists today. 

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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