In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Colin Burt, from Newcastle-Upon-Tyne, was 49 when he died from a brain tumour he had bravely fought for five years. Colin was happily married to Fiona and together they enjoyed a life full of love, travel and music. Colin underwent two brain surgeries and several courses of radiotherapy before his treatment options eventually ran out. He died at home in August 2019, leaving his 43-year-old wife Fiona heartbroken and facing the rest of her life without her ‘soulmate’.
Colin’s widow Fiona tells his story…
Colin and I met at Fenwick Department Store in Newcastle in 2001. He was from County Durham and I was from Northumberland. He worked as a sales manager in the Menswear department while I worked in the office in the same department. We were friends for a while before we got together and so our relationship was always based on a friendship. We weren’t able to have children, but we were happy just the two of us and we were so close. It’s a cliché but we really were soulmates, who did everything together and rarely argued. We loved the life we had together; enjoying going to gigs, foreign holidays and nights out. Life was really great.
Colin’s diagnosis came in 2014 but he had been ill for a long time before that. Having previously never had a day off sick or suffered any kind of serious illness, Colin suddenly began suffering from headaches, migraines and blurred vision. He went backwards and forwards to the GP but frustratingly, he wasn’t sent for further investigation for several months; he was just told to take headache pills for the migraines. Eventually, after his symptoms progressed to include dizziness, balance issues and nausea, in September 2014 Colin was sent to the Ear, Nose and Throat (ENT) department at the hospital, as the doctor thought he might have an inner ear infection. By the time the appointment came around he had lost a stone in weight, was being sick daily and was really struggling to even walk short distances unaided. I was frantically googling to try and find out what was wrong, as I began to fear he had something really serious.
“At Colin’s ENT appointment they referred him for an MRI scan two months later. But as he was becoming increasingly unwell, I was adamant the scan couldn’t wait and, in desperation, rang the hospital in tears, pleading with them to bring it forward, which they did.”
He went for the MRI on a Saturday and the following Monday I received a phone call at work, letting me know that they had found a ‘lesion’ on Colin’s brain and he was sent straight to the Royal Victoria Infirmary (RVI) in Newcastle. From that point onwards everything progressed very quickly. We were shown images of an orange-sized tumour in the back of his brain, one of the biggest the oncologist had ever seen. It was surreal and we barely had time to process what was happening before he was put on a course of steroids to reduce the swelling and just days later, he went into surgery for a craniotomy.
The operation, at the beginning of October 2014, lasted nine hours. They managed to remove most but not of all of the tumour, which we subsequently discovered was a grade 2 meningioma. The diagnosis offered a glimmer of hope, as my own research told me that meningioma, the most common form of adult primary brain tumour, are low-grade (non-cancerous) primary brain tumours. Plenty of people have been treated for this tumour type and have gone on to lead long, healthy lives. The doctors said he would be off work for about six months but Colin being Colin, he decided he was going back to work after just a few of weeks in spite of the fact he lost some of his eyesight during surgery. He just wanted to carry on as normal.
Colin even continued working during his six-week course of daily radiotherapy, which he began in December 2014. He was fatigued but determined to live his life and even made his radiotherapy appointments either first thing in the morning or last thing in the afternoon, to minimise disruption to his working day. His oncologist couldn’t believe it! The radiotherapy finished in January 2015 and after that we enjoyed a period of good health and stable scans, until April 2016, when a routine MRI revealed regrowth in two places. He was scheduled for another debulking craniotomy in July that year and he also received stereotactic radiosurgery on the new growth, which couldn’t be treated via traditional surgery due to its location in the brain.
The next ‘honeymoon period’ after the second lot of surgery was just a few months long. In March 2017, a scan showed another recurrence and regrowth, which resulted in him having further radiosurgery.
“Every time we received bad news it was that awful, deflated feeling of ‘here we go again’. That sinking feeling would last a couple of days but we would pick ourselves up, dust ourselves off and just deal with it as best we could. We adapted.”
Colin was classed as partially-sighted after the second operation and as time went on, his side effects increased. He had concentration problems and would get very tired. In spite of the challenges, we tried to maintain a normal and happy life. We continued going to gigs; some of our favourite acts to see live were Paul Weller, Editors and Morrissey. We carried on travelling and enjoyed holidays in New York, Croatia, Spain and Turkey. In one way, not being able to have children turned out to be a blessing, as I was able to devote myself to looking after my husband as he began to deteriorate. I can’t imagine what it would’ve been like if we had had young children to care for at the same time.
“Colin and I were relieved that he had another run of stable scans until August 2018, when our luck ran out and doctors discovered a large regrowth. At that point we were told his treatment options were few and far between. It was now about palliative care and managing his symptoms. I knew the end was coming but I never thought it would be so soon.”
Colin resolutely continued to work until he physically couldn’t manage it any more. In December 2018, on what was meant to be his last day working at Fenwick, I received a call from his manager to say a colleague was bringing him home, as he just wasn’t well enough to be there. He didn’t make it through his last day. Meanwhile, I had no choice but to continue working to support both of us but I cut my hours down to three days a week. At first, Colin managed quite well on his own at home while I was at work. My dad would call in and check on him a couple of times a week and his own dad would drop in on him weekly too. Eventually, however, the wonderful Macmillan nurses and carers got more and more involved with his care. I went down to working two days a week, as Colin was getting increasingly confused and would spend a lot of time sleeping. By March 2019, he began going to the local hospice for one day a week. Most of the people there were older than him. It was hard. By May he needed a wheelchair to get around as he became less and less mobile.
“Colin talked to some of his carers about the end of his life. He wanted to know what would happen and how it would feel. The two of us also discussed his will and funeral plans. These are not the conversations a couple in their forties should have to have.”
We are a small family; I have no siblings and Colin was an only child too. When the nursing staff weren’t there, I was his sole carer and had to deal with a lot on my own. What many people don’t realise with brain tumours is how awful things can get at the end. I had to take him to the toilet, wash him and help feed him. Colin asked me not to tell people at work what it was like. He was previously so independent and strong. Slowly he was being stripped of his dignity and it was really tough to deal with. But all the time Colin was more concerned about other people than he was about himself. He knew he was terminally ill and would ask me ‘are you going to be OK?’.
Towards the end Colin started having mini seizures. The first one happened when the two of us were in the bathroom. I remember his legs just froze then he was shaking uncontrollably. I couldn’t get him to lie down so had to muster all of my strength to lay him down myself. Somehow, I just managed to stay calm and deal with it. After that, he was put on anti-seizure medication. By this point Colin’s steroids had caused him to gain a lot of weight. He was self-conscious about his appearance and his weight gain. After another seizure he ended up being taken onto a palliative care ward, which caused him a lot of distress and confusion.
“Luckily, he was able to come home and a hospital bed was installed downstairs. His carers were coming four times a day, as it became too much for me to wash him, dress him and get him out of bed.”
One day, on 5 August 2019, I said goodbye to him, as I always did, before I left to go to work. He seemed on good form that morning and there was no real cause for concern. To my absolute shock and horror, a few hours later I got a phone call at work to say he had suffered a massive seizure. I rushed home to be with him and arrived at the house to find ambulances outside. I was too late; he had died while I was at work. I remember walking into the house and asking ‘has he gone?’ and the medics who were with him confirmed my worst fears. Having spent so much time with him throughout, I couldn’t believe I wasn’t there when he finally passed away. It was unbelievably traumatic and I am still coming to terms with the circumstances in which I lost him.
Colin’s funeral was really overwhelming; so many people came to pay their respects to him. Time and time again I received messages of condolence in which he was described as ‘a gentleman’ and friends and colleagues would talk about how he was always there with a smile and a joke. It was comforting to know just how loved he was. Colin wouldn’t have believed how many people came to say goodbye and he would’ve said they were there for me and not him! That is the kind of guy he was. He always said he wanted me to be happy, not to cry for him all the time. He said, ‘you know you won’t be single for very long after I go; you’ll be snapped up’. He loved me so much, he said those things to make me feel better.
After Colin died, I threw myself into keeping busy and tried my best to continue some of the things we loved doing together, such as visiting friends and going to gigs. Having a full diary provided a welcome distraction but in March 2020, the coronavirus pandemic put a stop to all of that and by May I had hit an all-time low. I was furloughed from my job and was spending all of my time in lockdown alone, at home in the house I should have been sharing with Colin. I am grateful things are beginning to return to some kind of normality, so I can get out and see friends again and will soon be going back to work.
When I came across the work of Brain Tumour Research, I was keen to offer my support, having discovered just how underfunded this area of cancer research is. A brain tumour diagnosis feels like a death sentence and when you consider just how many young people are affected by the disease, it’s clear something has to be done to change the situation. Last September I volunteered at the charity’s ‘Walk of Hope’ at the Rising Sun Country Park in Newcastle.
“Our employers, Fenwick Ltd, have also chosen to support the charity and even took part in a virtual Wear a Hat Day event, when plans were put on hold due to lockdown. I was so proud of my colleagues for raising more than £2,250 for the charity.”
Losing Colin left me completely heartbroken and it is almost impossible to contemplate a future without him. Colin was my future. He was my kind, caring, thoughtful husband and best friend and nothing could have prepared me for life without him. He will always be remembered as one of life’s special people, always thinking of others before himself. I can’t put into words the massive loss I feel without having him around. It still doesn’t make sense to me that he is not here and I miss him more than I could have ever imagined and always will. I will be forever grateful that I got to share 18 years of my life with him. I am never going to give up hope that at some point I can be happy again. I will try. But Colin will always be in my heart. I will never stop loving him.
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 Colin’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.