In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Gill Edwards discovered she had a meningioma after collapsing whilst out dog walking near her then home in Brentwood, Essex, in February 2013. She was 44 years old and had been experiencing tiredness, which she had attributed to myalgic encephalomyelitis (ME), a condition she was diagnosed with in her 20s, as well as headaches and dizziness. She underwent a craniotomy and a year later radically transformed her life to create the idyllic one she had always dreamed of having, giving up her busy job as a business consultant to set up a candle-making company and moving from the edge of London to the peaceful Suffolk village of Brome.
Gill tells her story …
Before everything happened I was working full-time as a business consultant, looking after the whole of the East of England. It was a job I’d done for about 20 years in various guises and involved doing a lot of training and presentation sessions with MDs and senior business people, developing business and HR plans, basically everything that was needed to support a business. I was also living in Brentwood on the edge of London, so my life and what I did then was quite different compared to now.
Looking back I can’t say I noticed many symptoms. I had been getting very tired but, having been diagnosed with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) in my early 20s, I was aware I got more tired than other people and attributed it to that. I had also been getting more headaches and was generally feeling a bit off; there are two incidents I remember very clearly that highlight this.
In January 2013, about a month before my diagnosis, I was asked to drive to Leicester to meet my boss at our head office. It was really early and foggy and I can remember phoning him from a service station and saying: ‘I don’t feel right, I don’t think I can get there’. He suggested I grabbed a coffee and carried on, which I did but probably shouldn’t have. The second incident is bizarre and took place in my home office when I crouched down to remove some files from the bottom of a filing cabinet. I became really dizzy and rolled backwards onto the floor and remember laughing to myself about it at the time.
My parents, who lived nearby, knew something wasn’t right and my dad started coming to workshops that I was running. He’d say he fancied a day out and travel with me in the car, only to go off and do his own thing once we arrived. I thought he was just getting a bit stir crazy from being cooped up with my mum but after my diagnosis I found out it was because they knew something was wrong and were worried about me. My husband, Geoff, was in the police and working shift patterns at the time.
Where we lived, our daughter, Grace, used to take the bus to school. She was about nine at the time and I always used to walk Ruby, our golden retriever cross, to meet her at the bus station. On this particular day in February 2013, I had walked Ruby around the playing field and was making my way down a lane when I felt as if someone had attached ropes to my left-hand side and was pulling me to that side of the lane. I felt really dizzy and the next thing I knew I was on the floor with people around me.
“Ruby is a very sweet dog and I’d dropped her lead but she sat next to me howling until the people in the nearest house came out to see what the noise was and found me.”
hen I came around my phone was ringing. Someone else had met my daughter off the bus and called my husband who knew it was only a 10-minute walk and that I’d left an hour earlier and not made it. I tried to tell him where I was but gave him a different place entirely and I think the people who had found me took my phone and told him where I really was. He appeared with my parents, followed by first responders and then an ambulance. I spent most of my time in the ambulance saying ‘I have low blood pressure, this is all a fuss over nothing’.
I was taken to the Broomfield Hospital in Chelmsford where, after I woke up, one of the nurses said ‘have they told you?’ to which I replied ‘no’ and was told I had a brain tumour. I don’t think she was supposed to tell me but I don’t mind at all that she did. Unfortunately, when I was pregnant with Grace my uncle died of a brain tumour and we were incredibly close. The father of one of my best friends had also died from the disease and a very close friend of my dad’s had died of one just a few months earlier.
“Brain tumours were something that were in my realm of experience but all three of the people I’d known to have one had died.”
After a couple of days I was transferred to Queen’s Hospital in Romford, which has a specialist neuroscience centre, and sent home with high-dose steroids to reduce the swelling around my tumour, which was such that they couldn’t operate. I was given a date to go back for a craniotomy and advised to prepare for the worse, although I was reassured by my surgeon that if he had to have a brain tumour, a meningioma like mine was the one he’d choose.
“Even so, being Catholic my parents asked our local priest, who’s a family friend, to come and talk to me.”
There were nights I’d lay awake in bed composing letters in my head to different friends, outlining the influence I’d want them to have on my daughter if I died. I was 44 at the time and I began asking myself if I was where I wanted to be in life, if I was living where I wanted, doing the job I wanted and if I had the lifestyle I wanted. Only one of those was a yes; I adore my husband and daughter and there was never any doubt that’s what I wanted for my life but it was like a clock was suddenly ticking and I knew I needed to make changes.
My craniotomy took place on Geoff’s birthday, 27 February 2013. I remember coming round from the anaesthetic and thinking they hadn’t actually operated. I was in surgery for about seven hours and it was an anxious time for Geoff who had been told there was the possibility of major changes to things like my speech and memory.
“We never told Grace the darkest possible outcomes but we involved her throughout as we thought she had a right to know and didn’t want to hide it from her.”
I was in intensive care for about two weeks before being given the option of going home, where I was told there would be less risk of infection. As a mum, a wife and a daughter, I thought everybody would feel things were better once I got home, but it was horrendous and at times I wished I’d stayed in hospital for longer. I was in an awful lot of pain and had severe problems with my bowels and, despite having the best of intentions, there were so many people wanting to pop round that I couldn’t cope with them all. I don’t like needles, blood or anything like that and had to deal with pus running down from my wound as a result of multiple infections. It’s like I went into some kind of parallel universe and didn’t want anyone there except Geoff and Grace, so if anyone came over I would soon go and lie down in bed.
We just got through it a day at a time, with Geoff’s employer giving him an unending period of leave to look after me, which was really helpful. There was a lot of medication and follow-up appointments, including an excruciatingly painful one involving having my 30 staples taken out. I also struggled with my hair; at one point a porter wheeled my bed into a lift and I saw my hair in the mirror for the first time since having surgery. It had been shaved across the crown but left long all around the edges and looked awful. I initially said to my friend, who is a hairdresser, to shave it all off but ended up using headscarves and hats to cover it up instead.
On one occasion my parents took me for tea and cake in a village near where I live and it was a really warm day so I decided to take my hat off. A little girl there, probably about four years old, kept pointing at me and whispering to her mum, which made me feel awful. Things like that would send me down the road to distress but luckily I had friends who were really supportive.
At the time, we had a holiday home on the Suffolk coast, near two of my closest friends so Geoff would drive me up there when he could. I remember going to Joules in Aldeburgh to get something to wear to a commendation ceremony Geoff was being awarded a medal at. The staff there spent hours with us and found a dress for Grace and a headscarf for me that was part of their range and had wire in it and they taught me how to put it in to cover up my scars. I was still really bloated from the steroids but I just wanted to feel a bit better and they were so generous with their time and gave me so much confidence that, even now, when I go to Aldeburgh I still visit that shop.
My surgeon was happy that they got as much of my tumour as possible. It was actually about the size of an egg and sitting between my brain and the inside of my skull so they scraped out as much of it as they could. There were some cells remaining but I had three-monthly MRIs for the first 18 months and then they became less frequent, every six months, then annual and I haven’t had one now for two years, which I’m glad of. You get the all-clear and are on ‘cloud nine’ but then you gradually come down and are in a state of anxiety as you approach your next scan, so it’s a complete roller-coaster. At my first one I was so anxious that I just sat in the car crying.
“At this stage, unless we notice any worrying symptoms or a marked deterioration, I’m fine to just keep going as I am.”
We moved from Essex to Suffolk in June 2014, so we didn’t really wait long to make changes and my parents followed us up there about a year later so still live just down the road from us. There was an element of not wanting to be that mum at my daughter’s school who’d had a brain tumour and I was determined to have a country cottage with ducks and chickens. We now live in a 400-year-old cottage in Brome, which is heavily beamed and has low ceilings and wobbly floors, and we love it. Brentwood was great but it’s very busy and, although I couldn’t drive for a year, when I could, I could no longer cope with it; I just couldn’t process things quickly enough.
I did go back to work but I never managed more than three days and couldn’t perform like I used to; I’d lose track half way through a presentation and not know what I’d already told everyone and handling spreadsheets and databases was no longer possible either. Eventually I was offered voluntary redundancy, which I was thrilled with and I used the money to go on some courses ahead of setting up my own candle-making business. The Ruby Grace Candle Co is pretty much a full-time job for me now and since Geoff retired from the police, he’s been working with me for two or three days a week, so we’ve been very lucky.
“After 20 years of telling other people how to run a business, it’s great to finally be doing it for myself, but I wouldn’t have had the courage to leave my job before.”
I’m aware that not everyone has the happy outcome I have but when I was going through everything I didn’t know of anyone who’d had a brain tumour and survived, so I want people to know it’s not always so black and white. I’m a different person to who I was before, not just in attitude but in ability too. I struggle to find the right words to explain things sometimes and my emotions aren’t as controlled as they used to be. I cry easily and find that my filters aren’t as good as they should be so I have been known to say things I shouldn’t. My memory’s not as good either and I do get a lot of headaches, which, when they set in are there for a few days, but I’m on medication to keep them under control.
“I do have a lot of side effects that aren’t going to go away but I’ve come to terms with that.”
It sounds like something off a greeting card but my brain tumour really made us look at what’s important and that’s being together as a family and actually having time for each other. We’d thought about moving before and were nervous but after everything we just said: ‘what’s the worst that can happen?’ It made us realise that nothing’s guaranteed and you can’t keep putting things off. Besides, they say if your dreams don’t scare you they’re probably not big enough. We don’t regret any of our life changes. Giving up a good salary was a worry but there are more important things than money.
“We don’t have a really extravagant life but we have a really happy one.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure