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In Hope

Just 1% of the national research spend has been allocated to this devastating disease

The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.

Recently published stories

Kelly Ann Alexander

Devoted to her husband and her horse, Kelly Ann was turned away from A&E when her brain tumour symptoms were dismissed as the effects of too much drink. Eventually diagnosed with a low-grade tumour, Kelly Ann has been through surgery and had part of her skull replaced when a serious infection threatened her life. Now 39, Kelly Ann knows that her tumour may return but for now, she is back in the saddle and making the most of each day.

“My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face. My tumour was ‘low grade’ so, in many ways, I have been lucky. Although I have been through a very traumatic experience and have been left with mild weakness on my left-hand side, many others fare far worse.”

I don’t suppose there is ever a “good” time to be told you have a serious illness. The news that I had a brain tumour came just after I moved to Aberdeenshire to take up a dream job as a professional groom at a yard producing show jumpers.

My husband Kevin’s job as a lorry driver took him away a lot. I was busy, looking after around 15 horses every day, driving them to competitions, and looking after my own mare Aliyana, a wedding present from Kevin.

I would often be working 8am – 5pm at the yard and, by the time I had tended to my own horse as well, it would be 9pm before I got home. An Irish sports horse, Aliyana was four years old when I first got her. She’s now eight and, over the years, we have forged an unbreakable bond. In a way, my brain tumour story is inextricably linked to her and, along with Kevin, she is the one I am determined to live for. We competed in our first ever dressage competition just weeks before I was diagnosed in October 2015. There was a moment during the test in which I felt my brain had frozen and I just forgot everything but despite this we came first and I was ecstatic.

Although I had been feeling tired and was becoming forgetful, nothing could prepare me for the shock that was to come. Within days of the competition I had a seizure and the next thing I was aware of was coming round in an ambulance as we headed towards Aberdeen Royal Infirmary. My speech was slurred, my face had started to droop and my left hand side was lifeless. Despite this, I was discharged and told to go to get an out of hours appointment or see my GP when I had “sobered up.” It was outrageous, I hadn’t had a drink for weeks and weeks prior to that.

The next day I had a full convulsive seizure. This time, Kevin wasn’t there to come to my rescue but I managed to contact my sister-in-law who lived over the road. This time I was prescribed the anti-epilepsy drug Keppra. After that I was back and forwards to the doctors and, as Kevin needed to get back to work, I moved 200 miles back to be with my parents in West Lothian.

Things were clearly not right, I was having 14 or 15 seizures a day which were always preceded by a horrible metallic taste and smell. This time, I was admitted to St John’s Hospital, Livingston, where I was given the news that I had a brain tumour which was later identified as a slow growing oligodendroglioma.

I was advised that the best course of treatment was surgery, a procedure called an awake craniotomy in which I would be woken up after my skull had been opened. This meant that by talking to me and asking me to follow basic instructions they could ensure as much of the diseased tissue could be removed while minimising damage to the healthy areas.

Looking back a year on, I can remember very clearly being brought round while I was on the operating table. I talked about my horse and got cross with the nurse when she repeatedly mispronounced Aliyana’s name. At first, I started to recover well but things took a turn for the worse when I contracted a serious infection. I was back in hospital just before Christmas. It didn’t help that Kevin was away but there was little choice but to go ahead with surgery. As I balked at signing the consent forms I was given the stark news that, without another operation, I would probably die within 24 hours.

I was devastated and there was worse to come. In order to get rid of the infection which was threatening my life, a piece of skull was removed from the side of my head. There was no other option and I came out of surgery with a hole in my head which was covered in surgical tape with the words “no bone” written across it in marker pen. The flap of bone was eventually replaced with a special type of plastic which was made in the States. Just five weeks after the procedure I was up and walking and at the Royal Highland Show, an event I attend every year and was determined that a brain tumour wasn’t going to mean I missed out.

By October, I was well enough to compete again on Aliyana. It felt quite scary and, although it didn’t go as well as I had hoped, it was a big achievement for me.

My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face and make the best of every day. My tumour was “low grade” so, in many ways I have been lucky. Although I have been through a very traumatic experience and have been mild weakness on my left hand side, many others fare far worse.

We organised a cabaret night at Seafield Community Centre to raise money for Brain Tumour Research as I wanted to help raise awareness of the disease and to fund scientific research. Brain tumours 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 disease. This is unacceptable.

Kelly Ann Alexander
December 2016
Kelly Ann Alexander In Hope resized

All stories

Kelly Ann Alexander

Devoted to her husband and her horse, Kelly Ann was turned away from A&E when her brain tumour symptoms were dismissed as the effects of too much drink. Eventually diagnosed with a low-grade tumour, Kelly Ann has been through surgery and had part of her skull replaced when a serious infection threatened her life. Now 39, Kelly Ann knows that her tumour may return but for now, she is back in the saddle and making the most of each day.

“My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face. My tumour was ‘low grade’ so, in many ways, I have been lucky. Although I have been through a very traumatic experience and have been left with mild weakness on my left-hand side, many others fare far worse.”

I don’t suppose there is ever a “good” time to be told you have a serious illness. The news that I had a brain tumour came just after I moved to Aberdeenshire to take up a dream job as a professional groom at a yard producing show jumpers.

My husband Kevin’s job as a lorry driver took him away a lot. I was busy, looking after around 15 horses every day, driving them to competitions, and looking after my own mare Aliyana, a wedding present from Kevin.

I would often be working 8am – 5pm at the yard and, by the time I had tended to my own horse as well, it would be 9pm before I got home. An Irish sports horse, Aliyana was four years old when I first got her. She’s now eight and, over the years, we have forged an unbreakable bond. In a way, my brain tumour story is inextricably linked to her and, along with Kevin, she is the one I am determined to live for. We competed in our first ever dressage competition just weeks before I was diagnosed in October 2015. There was a moment during the test in which I felt my brain had frozen and I just forgot everything but despite this we came first and I was ecstatic.

Although I had been feeling tired and was becoming forgetful, nothing could prepare me for the shock that was to come. Within days of the competition I had a seizure and the next thing I was aware of was coming round in an ambulance as we headed towards Aberdeen Royal Infirmary. My speech was slurred, my face had started to droop and my left hand side was lifeless. Despite this, I was discharged and told to go to get an out of hours appointment or see my GP when I had “sobered up.” It was outrageous, I hadn’t had a drink for weeks and weeks prior to that.

The next day I had a full convulsive seizure. This time, Kevin wasn’t there to come to my rescue but I managed to contact my sister-in-law who lived over the road. This time I was prescribed the anti-epilepsy drug Keppra. After that I was back and forwards to the doctors and, as Kevin needed to get back to work, I moved 200 miles back to be with my parents in West Lothian.

Things were clearly not right, I was having 14 or 15 seizures a day which were always preceded by a horrible metallic taste and smell. This time, I was admitted to St John’s Hospital, Livingston, where I was given the news that I had a brain tumour which was later identified as a slow growing oligodendroglioma.

I was advised that the best course of treatment was surgery, a procedure called an awake craniotomy in which I would be woken up after my skull had been opened. This meant that by talking to me and asking me to follow basic instructions they could ensure as much of the diseased tissue could be removed while minimising damage to the healthy areas.

Looking back a year on, I can remember very clearly being brought round while I was on the operating table. I talked about my horse and got cross with the nurse when she repeatedly mispronounced Aliyana’s name. At first, I started to recover well but things took a turn for the worse when I contracted a serious infection. I was back in hospital just before Christmas. It didn’t help that Kevin was away but there was little choice but to go ahead with surgery. As I balked at signing the consent forms I was given the stark news that, without another operation, I would probably die within 24 hours.

I was devastated and there was worse to come. In order to get rid of the infection which was threatening my life, a piece of skull was removed from the side of my head. There was no other option and I came out of surgery with a hole in my head which was covered in surgical tape with the words “no bone” written across it in marker pen. The flap of bone was eventually replaced with a special type of plastic which was made in the States. Just five weeks after the procedure I was up and walking and at the Royal Highland Show, an event I attend every year and was determined that a brain tumour wasn’t going to mean I missed out.

By October, I was well enough to compete again on Aliyana. It felt quite scary and, although it didn’t go as well as I had hoped, it was a big achievement for me.

My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face and make the best of every day. My tumour was “low grade” so, in many ways I have been lucky. Although I have been through a very traumatic experience and have been mild weakness on my left hand side, many others fare far worse.

We organised a cabaret night at Seafield Community Centre to raise money for Brain Tumour Research as I wanted to help raise awareness of the disease and to fund scientific research. Brain tumours 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 disease. This is unacceptable.

Kelly Ann Alexander
December 2016
Kelly Ann Alexander In Hope resized

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