In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Registered nurse and mother-of-one Anne Murdy was diagnosed with a meningioma brain tumour in March 2020. The diagnosis came after several months of Anne going back and forth to her GP with a range of unusual symptoms, include urinary issues, changes to her voice, problems swallowing and increasing unsteadiness. The symptoms were initially thought to be related to the menopause but months later, when she was finally sent for an MRI scan, doctors found a golf-ball sized tumour in her brain.
Anne tells her story…
The first sign that there was something wrong came in August 2019, when I fell over in Tesco’s car park. I fell flat on my face and bled profusely. Thankfully, I was helped by some young people who saw what happened. I convinced myself I must’ve tripped over something, as I was in a hurry to collect my daughter, but something didn’t seem right about it.
Over time, I also noticed that my voice was becoming huskier. I’m a keen singer and I found that I was no longer able to sing. My emotions were all over the place. I would weep uncontrollably, even when I didn’t feel depressed or sad. I would be talking to relatives or colleagues and would burst into tears for no reason. Even the Bisto gravy advert on TV would make me cry! I was also becoming forgetful and had difficulty finding words sometimes.
“In December 2019 I went to see my GP, who told me the symptoms were hormonal, as I was approaching the menopause, and he gave me antidepressants.”
Later that month I suffered another bad fall, this time at home. I was with friends in my kitchen when I fell over backwards, smacking my head on the worktop. I had to go to Dumfries & Galloway Royal Infirmary (A&E) to treat be treated for a badly grazed head. In January, in light of my recent fall, I made a second trip to the GP, to discuss what had been happening and the fact that my antidepressants didn’t seem to be working. Five years previously I had celebrated my 50th birthday and I felt in the peak of health. Now, aged 55, I was weepy, tired, forgetful and even my gait had been affected. I had a strong sense that something just ‘wasn’t right’.
By January the voice problems were getting worse and I was also having difficulty swallowing. The following week I saw an osteopath, who noted nystagmus, a vision condition which was causing my eyes to make repetitive, uncontrolled movements. She told me to go back to my GP, which I did, later that month.
On 23 January I was finally referred urgently to the neurology department in Dumfries and subsequently sent for an MRI scan.
“I suspected they must have found something in my brain, when they took me out of the scanner after 20 minutes to inject me with contrast dye. As a nurse, I knew this was to enhance the MRI images, as they must have detected something.”
Prior to that, my main concern was that I was developing multiple sclerosis (MS). It never crossed my mind that I had a brain tumour. I hadn’t experienced double vision, headaches or hearing problems. I received the results on 2 March 2020. When my husband and I sat down, my neurologist said he was glad I had brought someone with me, before proceeding to break the news that I had a large, golf ball-sized meningioma tumour, close to my brain stem. In a strange way the diagnosis came as a relief, as I finally understood why I hadn’t been feeling like myself for so long. But it was still extremely difficult to process the news. I called my brother to tell him, ‘it’s a brain tumour’. There were a few expletives. It was very surreal.
There were moments when I crumbled. My husband John and I waited a long time to have our daughter, Star, who is now 15. After waiting so long to become a mum, the thought of not being able to see my wee girl through university and all her other milestones is unbearable. Star has taken the news remarkably well. There were no tears. Together, we named the tumour ‘Malcolm’, so we can discuss it without always having to use the words, ‘brain tumour’. Malcolm gets the blame for everything, so I’ll say to John, ‘can Malcolm have a cup of tea, please?!’ Star even bought him a ‘Welcome to your new home’ card, in which she wrote him a message saying he wouldn’t be able to stay long!”
On 23 March 2020, the day the country went into lockdown, I was back in hospital in Edinburgh for my pre-op assessment and was operated on two days later. I knew when I went in for surgery that they wouldn’t be able to remove all of the tumour because of its location within the brain but I hoped it would alleviate the symptoms at the very least.
“I was also told that there was a 10% chance I wouldn’t survive surgery or that it would have a devastating outcome. To hear that was awful and I was terrified as I went into theatre.”
I was in theatre for 10 hours and my surgeon, Mr Ioannis Fouyas, successfully removed some of the tumour. The Covid-19 restrictions meant that I wasn’t able to have visitors but at least that meant that I was able to fully focus on my rehabilitation and, let’s face it, I was hardly at my best! Thankfully, 10 days later I was home and delighted to be reunited with John and Star. I was able to manage at home, as I was provided with chair raisers and a shower chair. My brain tumour and subsequent operation meant John was furloughed for 12 weeks, having just started a new job with the local council. Lockdown turned out to be a blessing for us as a family. Star was off school and we enjoyed lots of quality time together, watching movies and getting out in the garden as much as possible. I am a woman of faith; my religion is very important to me. We had lots of people praying for us, which was really uplifting. I truly believe in the power of prayer.
I am continuing to recover well from surgery but I’ve been left with double vision, ataxia and left-sided facial numbness. I am now eagerly awaiting the results of my post-op scans. I won’t be able to return to work for at least a year. There is no way I could return to the physical nursing I was doing any time soon. In the meantime, I am keeping myself busy and distracted by organising a fundraising event to help find a cure for the disease.
When I heard about Brain Tumour Research’s Do Lunch campaign, I knew it was something I wanted to be involved in. It is Star’s 16th birthday at the end of August and we always have a big family get-together. This year will be slightly different, with the coronavirus restrictions in place, but we’re still hoping to have a socially-distanced gathering of friends and family in the garden with a buffet and some music. After I was diagnosed with a brain tumour, I was shocked to discover the lack of funding being made available for this terrible and life-threatening disease. I’m keen to do my bit to help raise awareness and increase support for Brain Tumour Research.
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 inspired by Anne’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.