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"The Brain Tumour Charity helps me feel that I am not alone."

Kirstin, a communications professional and mum-of-two, had vivid hallucinations and visual disturbances put down to an ear infection before she was diagnosed with a brain tumour.

Kirstin Gove, 48, from Aberdeen was diagnosed with a Hemangioblastoma brain tumour in October last year after first showing signs of her condition in July. Kirstin was working from home due to the Covid pandemic and she began to experience regular and persistent headaches, brain fog and increasingly disturbed vision.

This intensified over a short space of time so Kirstin visited her optician to get her prescription checked – she was told that her eyesight was fine and that she could be having visual migraines. The headaches soon got so bad that they would often keep her awake at night. She also began to have intense visual disturbances and, just prior to her diagnosis, they got so bad that she would see bright cartoon colours, jumbled up words and different textures around her which weren’t really there. It would also regularly feel like the room was spinning.

Kirstin, former journalist and news anchor at Scottish television station, STV, and now Head of Communications for an offshore gas and safety organisation, said: “Nobody really cares if you have a headache but I couldn’t even concentrate on my work anymore. People would notice things weren’t quite right on video calls, that my typing was laboured or my usual strong spelling and grammar were incorrect. Colleagues would jokingly ask if I had a glass of wine with lunch. I convinced myself that my computer keyboard was just a bit sticky. Never once did it cross my mind that it may be a brain tumour.

By the end of August, Kirstin thought that she may have depression as she was irritable, feeling miserable and she generally lost her usual ‘get up and go’ attitude. She also began to experience problems with her balance. She took a week off work in September in the hope of recovering. She also visited her local branch of Boots for her annual flu vaccination but she was refused because the pharmacist said she was too unwell to receive it.

Kirstin made a day trip to see her 19-year-old daughter Clara, who studies in Glasgow, who told her to visit the GP. The GP diagnosed Kirstin with Labyrinthitis, which is an inner ear infection and can affect balance and she was given some painkillers to take for it.

Yet, just days later, Kirstin began being violently sick. She was unable to keep any food or drink down, including the painkillers which she had been prescribed. She had another consultation with the GP, this time on the phone because she was too ill to attend an appointment in person, who once again put it down to the inner ear infection. Within days, Kirstin’s condition had worsened dramatically.

She said: “I simply couldn’t get out of bed but I just told myself to stop being a wuss. I was willing myself to get up but I know my own body and I knew that I wasn’t getting any better. I yelled at my husband to get me help - I couldn’t even walk straight to get into the car to get to the GP again and I was sick all the way down the driveway. The car journey was the worst that I have ever experienced as the motion made me feel so unwell and even more sick.”

Kirstin was given an anti-sickness injection by her GP and told to go straight to A&E at Aberdeen Royal Infirmary. She thought that she would simply be rehydrated and sent home later that day, especially as this was in the midst of the Covid pandemic. Kirstin was taken into the hospital’s A&E in a wheelchair as she couldn’t move herself.

Kirstin said: ”I remember the doctors being particularly interested in my eyes. They seemed to concentrate a lot on my eyes which, I later found out, were demonstrating “signals” of a brain tumour.

Kirstin was sent for a CT scan that night. She said: “At around 2am the next morning, two doctors came and told me “I’m sorry but we haven’t got good news. We have found a mass in your brain.” I immediately thought that I won’t get to meet the people who my children will marry or even celebrate my son’s upcoming 16th birthday. I couldn’t help but think “How did I get here?” but I knew that this was where I now belonged, which was really tough to take.

Kirstin then had a full body CT scan as medics tried to locate any primary source of the tumour, she was admitted to the neurosurgery team, put under close observation and given anti-sickness medication every six hours.

A further MRI scan confirmed the presence of a low grade hemangioblastoma on her lower left cerebellum, which is the area which controls balance and sight. One week after the MRI scan, she had a six-and-a-half-hour craniotomy to remove it.

She said: “My care was remarkable – second to none, really. I remember waking up from surgery and I felt lucky and very cared for as the surgeon contacted my family to let them know. Everything was better immediately and the visual disturbances have completely gone. I was treated as a person and not as a patient. It was a positive experience when it could have all been so horrendous.

Kirstin spent 15 days in hospital before she went home to recover. It took a few days for her to regain independent mobility and she needed to use a Zimmer frame at the start of her recovery. The headaches and nausea quickly subsided and she now has regular eye clinic checks for any signs of damage. The surgery successfully removed all of the tumour and she didn’t need chemotherapy or radiotherapy. She now has regular scans to monitor her condition and follow-up appointments have been carried out through a video call due to the Covid-19 pandemic.

Further tests have taken place were carried out by the Clinical Genetics department to find out if Kirstin had Von Hippel Syndrome, which is a genetic condition which carries one in four chance of growing tumours in other locations throughout the body including the brain and kidneys. The results of the test were negative which removes Kirstin's concern that she had of passing on the syndrome to her children.

Kirstin said: “Now, I have lots of days when I am feeling so good but I still have days when I feel pain in my head. I returned to work in January, still working from home due to the Covid pandemic, and this helps me greatly because I would have found a busy, noisy workplace too much of a sensory overload.

I have to also remember a sense of perspective because I have healed so well physically but, emotionally, I am definitely not quite there yet.

Only a short time ago, I thought that I was dying – that doesn’t go away easily. I can just be sitting and having dinner and it will hit me again. Talking to my close friends and my wonderful family really helps – we do so every day and we get strength from each other through it. Seeing my children do so well in life brings me the greatest joy. They are, quite simply, my reason to live. I am, and always will be, determined to be positive.

I was fortunate that Covid didn’t have a big impact on my experience aside from limiting visitors – but then maybe I didn’t want people to see me like that. The Covid test was just another one of the many tests I was having. The staff were under intense pressure but they still did an amazing job – I actually had a laugh with them and, for that, I am forever grateful. I owe them all so much and to my neurosurgeon, Mr Bodkin, I owe a debt I can never repay.

Celebrations will be different in the future – there’s no more alcohol on special occasions for me! The way I felt just before my diagnosis is too similar to a really terrible hangover and I never want to feel that way ever again or to even be reminded of it.

Kirstin first heard about The Brain Tumour Charity after searching online for support and information following her diagnosis. She has used the Charity’s closed Facebook groups to join the online community of people who have been affected by a brain tumour diagnosis.

Kirstin added: “I have been so impressed by the quality of information resources provided by The Brain Tumour Charity from the online information to the BRIAN app and support channels. The Brain Tumour Charity helps me feel that I am not alone.

People need to really make their voices heard if they experience any of the symptoms that I encountered and if they suspect that they may have a brain tumour. I didn’t suspect for a second that I had a brain tumour and I struggled to get a diagnosis. I definitely see myself as lucky to have got the treatment and recovery that I have had. I had all of the symptoms but I didn’t have the knowledge or confidence to ask my GP “could it be a brain tumour is it?” Hindsight is a wonderful thing.

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org