Mandy Lomax, who has enjoyed more than 20 years as a model and actor, including appearing on an infamous Pink Floyd album cover, was diagnosed with a brain tumour in 2006. She had been filming and one of the scenes included riding a horse. Mandy was a novice rider, and in between different scenes walking with the horse, he was nudging her the entire time. Then, when she got on the horse to film that scene, he rose on his hind legs and bolted.
Despite the speed but concerned for her safety, Mandy chose to jump off the horse and she tumbled to the ground. The crew came to help her and she was taken to hospital to be checked over. She had limited use of her leg as she had hit her pelvis and hips which doctors thought could have damaged a nerve. They also asked if Mandy had hit her head and she didn’t think she had done.
But a few days later, Mandy was having periods of dizziness, blurred vision and nausea so she went to see her GP. She was immediately sent for a CT scan which found a mass on her brain. It was later confirmed to be a parasagittal meningioma which had formed on the thin layer of tissue between the two sides of the brain.
Mandy said: “My initial inability to walk was the concern straight after the fall and I didn’t recall hitting my head at the time. But things like this tend to replay in your mind and I realised I had tumbled and hit my head as a secondary part of the incident. My legs and ability to walk had recovered.
“My GP sent me for a CT scan straight away due to the symptoms I was having. In fact, my head was not badly affected from the fall itself and there was no bleed. The doctor told me that I had the luckiest fall of my life. From my local hospital, my scan results were sent to a specialist neurosurgical team in London for verification that I was concussed but that I also had a rather large tumour.
“The doctors said that as it was still growing, due to its location and that it was currently the size of a satsuma – so it had to come out.”
Mandy had an MRI scan later that week and an appointment with a consultant neurosurgeon, who reiterated how the fall from the horse was incredibly lucky as I had no symptoms of the tumour. She soon had a craniotomy which successfully removed the tumour. She also took steroids for a few weeks in the immediate aftermath of the surgery to help with her recovery.
Mandy did take some time to get back to her ‘normal’ and she found that she struggled to read on occasions, her general function was slower and that her memory was a little poorer. But, over time this all improved and she has been left with no long-term impacts of the tumour to her neurological function.
As the tumour was grade 1 she didn’t require any follow up treatment so she had regular MRI scans for seven years until she was officially discharged. Mandy said that she did used to get ‘scanxiety’ ahead of the annual appointments but then, when she was discharged, she missed the comfort of knowing she was going to get checked rather than worrying what could be happening.
Mandy said: “When I was first told about my diagnosis, I had no reaction at all. I may as well have been told that I had a blister. It took a while for it to sink in and then I had a real mix of emotions from absolute shock to anger and fear but I remember always thinking that they would fix it.
“The problem is that there are so many different types of brain tumour that you’re in a bit of limbo before you find out specifically which one you have and what it means. During this time, it’s almost impossible not to flail around in concern and you’re really unable to think of anything else. For me, until I saw my consultant, any sort of normality was out of the window. I was consumed with the situation and could barely eat.
“Of course, I googled too – which was a bad idea especially before knowing what type of tumour you have. But I knew nothing of brain tumours so I felt that I had to try and find something out. I think there are some health conditions which we hope we don’t get and others we don’t even consider or imagine having until it happens to you or someone you know.”
Since her brain tumour diagnosis, Mandy has also been diagnosed with two other conditions – skin cancer and a chronic blood cancer. Doctors have told her that these diagnoses are all separate to each other. The chronic blood cancer is due to an acquired gene mutation and is completely unrelated to the brain tumour.
Mandy said: “Alongside this separate ongoing and serious illness, it is difficult to know if or how the brain tumour affects me now. I think if I was concerned about my current symptoms I would ask for another CT scan to check for no signs of regrowth.
“All this together has meant that I no longer take things for granted. The difference with the brain tumour is that, because I was discharged after many years of follow-up MRI scans, I was able to convince myself that it was all over. But I now live with a chronic health condition which demands daily medication and regular hospital visits, scans and procedures for life which can be emotionally overwhelming. To have one potentially deadly health condition is bad but you never expect to get two.
“Despite this, now, I am probably happier and more settled in myself than I have ever been. Before my health problems, we would all think we need to live our lives as we won’t be here forever and I would say the same, but I didn’t know it in my heart, soul and brain. Now, it’s so clear to me how mortality is an absolute certainty. I have to be guided by my fluctuating stamina but if I want to do nothing or I want to go and grab a coffee then that’s what I do.
“Regardless of illness, we’re all getting older and it does tend to get to a stage where we think that we just need to live life and get on with it. I really can’t stand unnecessary negativity. You can be happy today – you just need to see the better side of it. Even through the days when things have been truly horrendous, I try to laugh. Even in hospital. It’s so freeing. When I was initially hospitalised with my current condition I had to be fed through a feeding tube but now I can go have a glass of wine and eat normally, which is brilliant.
“A lot of people say to me ‘you refuse to go away, Mandy!’ but I think they mean it in a good way!”
Mandy is a patient representative and has assisted in guidelines and professional steering groups, including a published patient summary in the BMJ, and is using her experience to help improve experiences for others affected by a diagnosis. She is also supporting The Brain Tumour Charity by sharing her story to help raise awareness of the disease, to dispel the myths which surround it and encourage support for those who need it following a brain tumour diagnosis.