Nobody expects to attend an orchestra rehearsal and set off a chain of events which would result in a tumour diagnosis, major brain surgery and the playing of the violin during that surgery. But for Dagmar Turner, this is exactly what happened. With extraordinary bravery and candour, she tells us how she not only survived the tumour but how her husband Mat helped in her recovery.
“I was at a rehearsal in July 2013 in a little town hall locally on the Isle of Wight and had a seizure. No symptoms, it just happened. However, the good thing that comes out of playing in an amateur orchestra in that you have doctors – in fact on that evening we had three doctors and a vet playing with us, so help was on hand and an ambulance was called.” At the time, the only information from her fellow musicians that Dagmar had was that she had fallen off her chair and bumped her head but when she tried to stand up and walk to the ambulance found that she was far too unsteady on her feet to do so. She was taken to St Mary’s hospital in Newport and having been scanned found in her words that there was ‘something in my head which shouldn’t have been there’ and so she was kept in. The next day she was seen by the doctor who was observing the overnight admittances (Mohammed Hussain) who decided that a trip to Southampton would be the best course of action for what he diagnosed as a butterfly glioma, a tumour which occurs most often in the frontal lobe of the brain and for which the life expectancy can be as little a six to ten weeks.
“My first thought was that I’d never see my son grow up – he was eight at the time and is fifteen now. Mat and I went over to Southampton with a referral and there was an amazing surgeon Paul Grundy who, after I’d had an MRI, said that ‘yes there is something that we need to have a look at’ and suggested a biopsy.” The biopsy went to plan but the surgery team felt that they couldn’t operate on it as it was a tumour which had spread irregularly and so radiotherapy was the first course of action – five days a week for six weeks. “ Mat is the real hero here – every day he took me in the morning on the ferry – at the beginning it’s relatively easy but after a couple of weeks it starts to wear you down and I couldn’t face the patient transport. We finished that course of treatment off and then it all really began – with the hair loss, which in this case will never grow back and that’s what upset me most in the whole journey, the loss of my hair on that part of my head.” The radiotherapy had shrunk that tumour and Dagmar returned to Southampton for regular scans to monitor her progress and to see what might happen next. She also got in touch with Brains Trust, a local charity which aims to ‘provide personalised support and build resources that help people with a brain tumour and their loved ones live the life they want after diagnosis’ who have provided her with amazing support throughout her diagnosis and treatment. Helen Bulbeck, one of the founders of Brains Trust visited Dagmar and suggested that she might want to get a second opinion – and that Kings College Hospital in London was the place which could give her the best opinion and treatment.
This suggestion would prove to be invaluable advice and after consultation, Dagmar was told that the doctors there wouldn’t have done anything differently to the doctors in Southampton and that they would now have to ‘watch and wait’ to see what transpired. She then met with a young consultant Omar Al-Salihi in Southampton who she found to be the most empathetic doctor that she had encountered and was interested not just in her but also in Matt and Felix and how the tumour was impacting on all of their lives. In a twist of fate Omar moved hospitals to Guys in London and Dagmar and Matt decided, after much conversation, to follow him there and so the scans continued for the next several years. In October 2019, there was bad news – everything had changed and there was an enhancement on the scan. It was decided that an operation would be the best course of action at this time – something that hadn’t been an option until now as Omar thought that by operating that there might be too much damage to Dagmar’s brain. After a multi- disciplinary team meeting, it was decided that the operation would be in London and on the advice of Helen from Brains Trust it was suggested that Professor Keyoumars Ashkan should be consulted. Interestingly Prof Ashkan is also a musician and took a particular interest and at Dagmar’s suggestion, it was decided that she would play the violin at particular times during the surgery helping the medics avoid the area of her brain used in playing the violin. Neurosurgeon Professor Keyoumars Ashkan said it was all about the ‘finer details’ of playing an instrument that they were wary of. Length of the string, pressure on the string, all those fast movements moving from one string to another, so that is what was unusual for us,” and what proved to be a fascination for the whole hospital.
“I only really met Professor Ashkan on the day of the surgery, and he came into the prep room before the operation and said ‘do you know how many people will be there today watching the surgery? Maybe 25 or 30 people – we should have sold tickets’.” Dagmar was woken up at specific times during the surgery which, as she says felt like being dragged out of bed after a night out and played the violin. In the bright light, noise, and coldness of the operating theatre, she played when required. With his own interest in music, having studied piano, Prof Ashkan had an empathy for what music means to Dagmar and so was the ideal man for the job in so many more ways than just being a surgeon. The surgery took around seven hours, three days later Dagmar was discharged from hospital and two days after that she was back at her orchestra rehearsal.
Whilst she is currently in the clear, Dagmar is pragmatic about her future. “Brain tumours have a nasty habit of returning after many years, but I am well now, and check- ups are getting longer in between – we’re up to four months now. You are never in remission with brain tumours where mine is because they are an incurable disease – some people are lucky, and they don’t return for twenty years or more but I’m well now and that’s what matters, despite being a little wobbly from time to time.” What strikes you when you meet Dagmar is how incredibly positive she is, and her conversation is full of laughter and hope – something astonishing for one who went through so much. Long may it last.
You can watch the video of Dagmar playing her violin during the operation HERE