Esme, a senior booking clerk and mother of three from Northampton, faced a challenging journey with her health that began with an elective hysterectomy in 2020, inducing menopause and subsequently caused her to experience unexplained symptoms. The 48-year-old had persistent headaches, leg weakness, auditory distortions, and personality changes which were dismissed by doctors and left attributed to hyperparathyroidism. In June 2023, an eye test led to a shocking discovery of a 6cm meningioma brain tumour. More than a year after surgery, Esme is living with side effects including a spinal condition and sensory loss. She is sharing her story to raise awareness of brain tumours in relation to women’s health.
Esme tells her story…
For a while I’d been ill with fibroids, polyps and cysts in my uterus. They were non-cancerous, and the best course of action was an elective hysterectomy which I had in 2020. This induced menopause, and I started to experience different symptoms over the next two years.
In September 2022 like clockwork, every time I got out of the car on the school run, I felt a sudden headache and my legs went weak. I also heard a whooshing sound as if a constant stream of lorries were passing by, all travelling the same distance and speed apart, but it was a sound only I could hear.
Two months later, I visited my GP and explained what I’d been experiencing but never felt as though my ailments were taken seriously. They did some tests and took my blood which showed I had low vitamin D, high cholesterol and blood pressure. In January 2023 I was told I had hyperparathyroidism – a condition caused by too much of the parathyroid hormone responsible for regulating calcium levels in your blood. I had a referral to the hospital for further investigation.
As well as the physical changes, people around me noticed a difference in my personality and this is something I felt too although I couldn’t see it.
I became socially devoid and almost stepped back from my role as a mum.
I didn’t watch TV and would often sit and stare vacantly. Sometimes I’d rub my fist over my forehead or gurn for no reason. For two years I felt empty. My usual get-up and go attitude was missing and it was as though I was just existing. I had no drive to do anything.
In May I had an appointment at Northampton General Hospital where I explained all my symptoms as well as what doctors had found. We discussed my high blood pressure, high cholesterol and low vitamin D as well as my headaches, sound disturbances and legs feeling like they were about to give way. The doctor was surprised and told me that only low vitamin D was a sign of hyperparathyroidism. She said she would address my blood pressure, cholesterol and vitamin D levels with my GP and see me again once I had completed a course of vitamin D.
I felt hugely dissatisfied that after GP and hospital appointments, I still didn’t have an answer to the cause of what was going on with my body. In June went to Specsavers in Central Milton Keynes for an eye test due to deterioration in my vision.
More than two decades before, my mum had treatment for a meningioma brain tumour after going for a routine eye test. Despite a recurrence five years later, she is now leading a normal life with little to no side effects.
I’d always thought, if I was unsure about anything to do with my health, I’d book in for an eye test and go from there.
Walking through Centre:MK shopping centre after my husband dropped me off, I collapsed to the floor three times. I picked myself up and held on to the shop fronts making my way to Specsavers. I thought it could be the shoes I was wearing that caused me to stumble even though I’d worn them many times before without issue. I felt unsettled and was aware my legs felt much weaker than usual.
In the eye test, they took photographs behind my eyes, and it showed that my optic nerves were not presenting as normal. No historical photos were on file so I had an immediate referral to the ophthalmology department at Milton Keynes Hospital where I was monitored for the next two months, and they could compare if it got better or worse or if there was anything untoward.
Part of the testing included an MRI scan which revealed I had a brain tumour.
The doctor told me it was 6cm which in medical terms was ‘giant’ as it was buried in my nasal cavity.
I was rushed to the John Radcliffe Hospital in Oxford and kept in for three nights. The combination of knowing about my large brain tumour, high blood pressure and cholesterol meant I was at high risk of stroke and seizures.
A week later I was admitted to hospital again and on 1st September 2023 I had a craniotomy which successfully removed the whole tumour, and the void left by the mass was packed with tissue from an unknown source.
The mass was confirmed to be a meningioma the same one my mum had been treated for decades before. I’m now monitored with annual scans.
As I lay in bed recovering from surgery, my left leg from ankle to groin was completely numb. A later MRI after discharge showed I have a degenerative disc disease on my spine.
A week after my first operation I had another full craniotomy, which saw part of the tissue from my thigh being used to fill a small hole underneath the original packing, following a cerebrospinal fluid (CSF) leak.
I have lost my sense of smell, and my taste is seriously affected. Something must be very sweet for me to taste it, and I can now handle spicy things. I sometimes get a bad taste in my mouth and only a certain kind of mint can get rid of it.
I’ve had support from a neuropsychologist as everything happened so quickly from when I was eventually diagnosed to surgery. I don’t feel I had adequate time to mentally process what was happening.
After the hysterectomy, due to menopause, the location of the brain tumour and steroids, I steadily gained four stone and weighed 14st by the time I had my first surgery. I bought myself a walking pad so I could journey back to myself which is when I saw the 99 Miles in November Facebook Challenge in aid of Brain Tumour Research.
I’m 15 months post-surgery and thought it was an amazing opportunity to get back to movement and exercise. Running and walking have always been my outlet for helping to keep me mindful. Setting myself a daily goal has helped me stay on track to complete the distance by the end of the month.
I’d encourage anyone who has concerns over their health to trust their instincts. I feel women of a certain age just get ignored or dismissed due to menopause and their symptoms are brushed off as something other than a potential brain tumour although some symptoms are alike.
My experience highlights the alarming lack of investment there is in researching brain tumours. Doctors aren’t equipped with the knowledge because of this historic underfunding so patients are being dismissed, mis-diagnosed or being diagnosed much later than they should.
Esme Morris
November 2024
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Esme’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure