In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Busy Hertfordshire mum-of-four Kirsty Drury thought she had conjunctivitis when she was referred for a CT scan and ultimately diagnosed with a spheno-orbital meningioma (SOM) in November 2019. Her tumour was growing into her skull and chewing muscles and, although it was recommended that she had surgery, delays brought about by COVID-19 ensured that did not happen for more than a year. In February 2021, less than three months after her operation, she began a phased return to work. With her life now resembling some sense of normality, she is keen to help others understand that there is hope after a brain tumour diagnosis, even if, like her, that means having to live with part of your tumour.
Kirsty tells her story …
When I first got told I had a brain tumour I thought it meant I was going to die. I’d only known of two people who’d had one previously, someone I used to work with who left straight after and I don’t know what happened to them and my husband’s friend who died within four years of his diagnosis.
“When you walk into the doctor’s surgery with suspected conjunctivitis and walk out with a brain tumour, you can’t be blamed for thinking the worst.”
I live my life at 100mph – I’m quite successful professionally, I’m a Programme Delivery Manager for Transport for London (TfL), I’m also a mum, a step-mum, a step-grandma, and my husband, Pete, who also works for TfL, and I enjoy travelling, so we’ve always got a lot going on. I work on railway projects, which means working a lot of weekends as that’s generally when we have rail closures and reduced passenger footfall. When I noticed my right eye becoming bloodshot, I didn’t really think much of it and just put it down to the hours I was working, but when I bumped into a friend in Tesco who told me it was also really swollen, I went to get drops from the pharmacy and was advised to go to my GP as they weren’t really sure what it was.
“I got a doctor’s appointment for 9am on 4 November 2019 and nine hours later I knew I had a growth.”
My doctor looked at my eye and did the whole ‘follow my pen with your eye’ thing and told me that it was probably nothing but my eye wasn’t moving correctly and he was going to send me to the Stoke Mandeville Hospital in Buckinghamshire. A consultant there told me that at my age – I was 43 – it would likely be something to do with my pituitary gland and sent me for a contrast CT scan. I sat in the waiting room with Pete and watched as everyone else was seen before us. As soon as the consultant arrived, I knew it was bad news, he just had that face. He told me I had a growth, probably non-cancerous, behind my eye that was growing into my skull bone and that I would need to be transferred to the John Radcliffe Hospital in Oxford.
“I didn’t understand what he told me – I didn’t know what a growth behind my eye growing into my skull meant.”
The next day, I stayed at home in Tring with Pete, digesting the news and figuring out what to tell our four kids, but after that I went back to work. I didn’t hear anything more about my referral until about a week after I’d mentioned I had private health insurance, which is when the secretary of a neurosurgeon called and asked me to come in for a private appointment. I hotfooted it from Stratford in East London, where my office is, to the hospital in Oxford and that’s the first time I heard the words ‘brain tumour’. Up until then I don’t think we’d realised that’s what it was. My consultant explained that I had three choices; I could have surgery, which he was strongly recommending, radiotherapy, although he said the tumour was too big for that, or I could do nothing, which wasn’t a good idea because by that point my eye was sticking out. He suggested we took some time to think about it.
“My attitude changed quite considerably after that because I started thinking ‘what the hell’ to everything.”
Where previously I would have perhaps been more professional about things, that no longer bothered me because I was scared I was going to die. My mental health and my emotions were talking and I didn’t mince my words, not even when I went to Australia to represent TfL at an AusRAIL conference, which was a big deal for me professionally. Fortunately, I had already told my immediate team of colleagues what was going on and they were great about it – I even cried with them.
After admitting that we were struggling, Pete and I went to our GP who referred us to a hospice in Berkhamsted. I didn’t like it there as I was busy trying to convince myself that I didn’t have a life-limiting diagnosis and that I was going to lead a normal life, but they did put me in touch with a great occupational health therapist who encouraged me to go running. I also started keeping a diary and soon realised that I had good and bad days and on the good days I was running. After my operation, the running helped me feel like me again.
“On Boxing Day 2020 I managed a 2km run and by February 2021, as I started a four-week phased return to work, I was back up to jogging 10km.”
I had expected to have brain surgery towards the start of 2020 but that slipped into March and then COVID-19 meant that only emergency operations were going ahead. As my tumour was slow-growing and probably not cancerous, I wasn’t considered an emergency. I carried on as best I could until September and then I started chasing things up because I felt like I’d been patient enough. How I didn’t go mad in that time I have no idea. I even started sleeping with the light on. Although I was coping pretty well and running was helping, my mental health wasn’t great because I was convinced that I was going to have a bad outcome, that I’d find out my tumour was growing faster than expected or that it was cancer.
“It was the first thing I thought of in the morning, the last thing I thought about at night and sometimes it woke me up too – I couldn’t get any inner peace.”
Finally, my persistence paid off and after another MRI and CT scan in October showing only minimal growth, my operation was scheduled for 8 November 2020. Within a week that too was cancelled as the second wave of COVID-19 loomed and the Oxford University Hospitals NHS Foundation Trust decided to cancel all private surgeries in NHS hospitals so as to make sure there were enough beds for COVID-19 patients. The surgeons decided to transfer my care to the NHS and my operation was rearranged for 26 November.
I went into hospital two days before my surgery, with my husband only allowed to visit for one hour a day. I kept it together pretty well until they put the anaesthetic in me at which point, I finally broke down. One member of staff on the ward admitted to me later that they had cried when I did and one of the last things I remember is a trainee nurse leaving suddenly. After a 16-hour operation, in which they removed the bulk of my tumour and the infected bone, then rebuilt my skull and eye orbit, and after I’d spent a further 12 hours on the neurological intensive care unit (NICU), I was woken up.
“I spent three days there because when I first came round, I fainted and needed a blood transfusion, and I also needed lots of anti-sickness medication.”
“My time in the NICU is the thing I think about the most because I’ve got quite vivid memories of it.”
I was being fed through a tube in my nose and I couldn’t open my eyes because my face was so swollen so I spent a lot of time lying down with my eyes closed, which I think heightened my other senses because I heard and smelt everything. I have bits of time that are missing and everything’s jumbled up but I heard at least three people being told they’d been in an accident and were in intensive care and I was lying next to a man who was unconscious and had been to the toilet which stunk and they used a really nasty air freshener to try and disguise it.
By the time I got transferred to the general ward, I’d had enough of being in hospital and was determined to leave. I got up, hobbled to the toilet, had a shower, started eating and was on a one-woman mission to get discharged. On my second day there, my fifth day since having surgery, they said I could go home and I didn’t return until 18 December, when they gave me the results of my biopsy.
After 13 months of not knowing, I finally found out that my tumour, a spheno-orbital meningioma (SOM), was grade 1 and non-cancerous. I didn’t know how to feel, but the relief came gradually. After surgery I had started to feel more like myself and I certainly did after receiving that news. It took me a bit of time to regain my confidence but I applied for a promotion after eight weeks back at work and when I got my track licence back in June, allowing me to visit my team out on the railway, I knew I was well on my way.
The surgeons told me they probably wouldn’t be able to remove my whole tumour because to do that they would have risked me losing my facial muscles so it was very much a risk versus reward situation. I’m now having six-monthly scans to monitor what’s left and so far, I’m pleased to say it hasn’t grown at all since my surgery. I know that at some point it could come back and as much as I don’t think I could go through all that again, I probably could and they’re sure we’d catch it before it got as big or grew into my skull again so that’s something.
“It would be nice, though, to not have this impending sense of doom hanging over me.”
There’s a cosmetic impact to what I’ve been through; my right eyebrow is slightly higher than my left, I’ve got a temporal hollow, I’m more reliant on my glasses now and I have lots of small ‘sticky up’ bits of hair across the scar on the top of my head, which I also can’t feel. I left the hospital in a headscarf because I wasn’t allowed to wash my hair and it was knotted, tangled and full of blood, but once I was able to wash it, about 10 days later, it was really worrying not being able to feel my head. No one had warned me to expect numbness from nerve damage and I couldn’t feel myself pull my hair or brush near my scar.
Physically I’m fine; I run 25km every week, but I get pressure headaches which don’t hurt but feel like someone is sitting on top of my head and I’m struggling with memory recall. The thoughts are there but I can’t get them out. If I don’t make notes and prepare what I’m going to say I can’t say it in a concise way – I’m just not as sharp as I used to be. I also don’t have my driving licence back yet, even though I was allowed it in May – apparently there’s a backlog – and because I technically still have a tumour my travel insurance is sky high. After surgery, you’ve come through so much that you feel like Superman and then you’re faced with the DVLA forms and insurance forms and you think ‘does this ever end’ but I guess after everything if that’s the worst that’s going to happen then so be it.
I’m at the stage now where I want to know why this happened. My consultant said it was probably hormonal, most likely progestogen, and I’m a long-term user of the contraceptive injection which is progestogen based, but unfortunately my tumour wasn’t tested for hormone receptors. I’d like to know if the injection had anything to do with it and what I can do now to give myself the best possible chance going forward.
That’s why I support Brain Tumour Research because, like them, I feel passionately about the need to raise awareness and funds for research into brain tumours. I don’t want to hear that we don’t have the answers. I also want others to know that there are lots of people living with a brain tumour. For some reason those stories aren’t talked about but I think they should be because at the beginning of my journey I would have given anything to have more hope.
“I want to put that alternative story out there; it is possible to get your life back after brain surgery.”
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.
If you have been touched by Kirsty’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/legacyTogether we will find a cure