In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
After the tumour returned for a third time with a vengeance, Matt was told nothing more could be done and sadly he lost his fight in September 2014 aged only 33.
“Even though there is still no cure at present for Matthew’s type of brain tumour, we were absolutely devastated to be told when the tumour came back this time that there were no more treatments available to try.”
His wife, Georgina, tells Matthew’s story…
When I met Matt six years ago, he had been in remission with his brain tumour for four years and you would never know from looking at him just how much he had been through with his health. He always had a smile on his face, a positive and grateful outlook on the challenges he had faced, and the ease to make people laugh wherever he went in life. He was a true inspiration and loved by so many people.
Back in 2006, Matt was working as a pheasant rearer and mechanic in North York-shire, and in his spare time indulging in his passion for pheasant shooting. He was 25 years old, fit and healthy, but one day after returning home from a day out with his Mum, he suffered an unexpected seizure.
An ambulance was called, but the paramedics initially thought it was nothing more than a sodium imbalance. When he had a second seizure a few weeks later, they took him to A&E where he had an MRI scan and was given the shocking diagnosis of a grade 2/3 astrocytoma brain tumour.
Matt underwent an immediate craniotomy under general anaesthetic to debulk the tumour followed by 30 fractions of radiotherapy. This left him with chronic fatigue, and he was unable to return to his job for six months, but otherwise the treatment was a complete success.
They kept an eye on him with MRI scans every six months, and after two years this was reduced to annual scans, as there were no visible signs of the tumour during that time. He was prescribed anti-epilepsy medication but otherwise he led a pretty normal life.
I met Matthew in 2010 and it was love at first sight, resulting in us moving in together a year later, we were so incredibly happy and in love. At the time, I was working as a physiotherapist in the hospital where Matthew had received all his treatment, Hull Royal Infirmary, while Matthew continued to work in his new role as an engineer.
He had started to suffer with some concerning symptoms prior to us moving in to-gether such as slurred speech, vacant episodes, and left arm weakness which didn’t seem normal, even though they only lasted a few seconds each time, so I asked him to go and get a checkup with his GP for advice.
The GP decided not to refer Matt for further investigations, and instead increased the dosage of his anti-epilepsy medication as he believed that Matt’s body had probably become resistant to the dosage, but the symptoms persisted.
Matt went for his annual MRI scan at the end of 2011, where, devastatingly, it was realised that the symptoms were actually due to a second recurrence of the tumour and this time it was worse. The tumour was now a grade 3 oligoastrocytoma, and he was referred immediately for further surgery at Hull Royal Infirmary.
Two weeks later, Matt underwent another craniotomy, this time awake. Everything was going well, and they had managed to debulk the tumour significantly, when Matt suddenly suffered stroke-like symptoms during the surgery. The procedure was immediately stopped, but Matt was left with complete left-sided weakness in his arm and leg as a result of the complication. It was later diagnosed as a rare ventricular spasm within the brain by his surgeon, Mr. Achawal, who was devastated that this had happened and was unsure how effectively the weakness would recover.
Having expected to be in hospital for only five days, Matt ended up not leaving for nearly a month. Although his movement began to return, it came back in fits and starts as the neural pathways began to repair. He had to learn how to walk again, at which point he was discharged from the hospital using crutches and waiting to start the next gruelling chapter of his recovery and treatment: chemotherapy.
With half of the tumour still in his brain, Matt was prescribed oral Temozolomide chemotherapy, to be taken for five days out of every 30. After 11 cycles, it was de-termined that his white blood cell count was too low for the final cycle of 12 treat-ments, but by then he’d had three MRI scans to gauge the effect of the chemothera-py and there was no visible sign of the tumour.
Matt made an amazing physical recovery from the weakness and the chemotherapy, with additional physiotherapy for about three months after his surgery, and, of course, his own personal physio at home! He regained about 95% of his previous mobility, and began doing some voluntary work around his chemo cycles, looking after children at a special school in Hull while he was recovering and unable to work.
In June 2012, Matt proposed to me at the top of the beautiful moors in North York-shire. It was one of the most special days in my life. We had a favourite bench over-looking the village of Rosedale Abbey which held great significance for us. Every time we went up the moor to sit on the bench, there was always someone there, and we would constantly joke that one day our time would come. Finally, on the day he asked me to marry him the bench was free. It truly was fate.
Over the next year, Matt’s health was great, and it made us hopeful for the future. He was still having scans every three months, and we planned our wedding with such great joy. We had the most beautiful wedding day on 23 August 2013 at Row-ley Manor in East Yorkshire surrounded by friends and family. The sun shone down on our love that day and filled it with memories of my husband that I will cherish forever.
After the wedding, we decided to make a fresh start. Not quite knowing where we wanted to live, but having a great love for the countryside, fate intervened again and brought us to Hope Cottage, a perfect fit in every sense of the word in a beautiful village in North Yorkshire that felt like home instantly. Matt and myself often turned to the word hope to give us comfort and strength no matter what life threw at us, so we felt that living in Hope Cottage was truly meant to be.
As we were now living quite a distance from Hull, Matt was transferred to the care of Leeds General Infirmary for his ongoing scans. He was still in remission, and seemed to be doing well. He had complained a little of some new signs of weakness in his left knee, but we had put that down to a muscle problem and didn’t think any more of it at the time as there were no other symptoms.
However, following his next scan in May 2014 we were sadly told, once again, that the tumour had returned. He was not experiencing any of the same symptoms as before. We knew it was only a matter of time before it would likely come back, but we always lived in hope, hope for a cure, hope for a new treatment or drug trial and hope to live our life together to the full.
Because of his two previous craniotomies the hospital advised that further surgery to debulk the tumour again would be too high risk. With the previous success of the Temozolomide, Matt went back onto this chemotherapy regime as the best recom-mended treatment approach.
This time, however, he started to deteriorate immediately following the first cycle of treatment, and the left lower limb weakness started to escalate. With each cycle the symptoms continued to increase rapidly, and it seemed like nothing could be done to stop it. As Matt deteriorated, we sought further medical advice and support, but were told his worsening symptoms were due to swelling on his brain due to the tu-mour recurrence so they just increased his steroid dosage.
By this stage, Matthew was on crutches again and having frequent falls at home. I hated having to go to work and leave him on his own at home, wondering if he was okay. On a couple of occasions, he had lost his balance so badly that he was una-ble to get up, so our two Labrador dogs, Poppy and Orca, lay across him until he felt strong enough to get up on his own. I knew that I couldn’t leave him in the care of the dogs, and with his Mum an hour away, I made the decision to take leave from work to become his full-time carer.
Within eight weeks of starting the new chemotherapy regime, Matt was restricted to a wheelchair. I had tried to adapt the house as best I could to help him stay mobile independently, with some additional equipment at home, but it was becoming so hard. We carried on in the belief that the doctors were managing his treatment effectively, but as he got worse and worse, I eventually had to call the GP to our house. His jaw dropped, he couldn’t believe the state Matt was in, and got in touch with the consultant to arrange an urgent MRI scan.
By now it was August, and in the short three months since the tumour had returned, it had continued to spread at a rapid rate. Matthew was so unwell by this stage that he was unable to attend a hospital appointment for the results. It was the GP who delivered the heartbreaking news that the tumour had now spread to his brainstem, the cancer was now terminal, and there were no further treatment options available, giving him just a few short weeks left to live.
Matt always used to say there were people out there worse off than him, and it is this quality that I admired him for the most. He was the most courageous person I have ever known. In his final few weeks we decided to set a challenge to keep me going after he died and continue with our passion for fundraising. As I was well known for my lack of loving fitness at the time we decided I would change that and take up running! And run I did. I completed my first half-marathon in September 2015, in honour and memory of my incredible husband.
Matt died on 3rd September 2014. We had been married just over a year, barely any time at all as husband and wife. But I am so grateful to have met him, to have had four years with my soulmate, the love of my life and such an incredibly special per-son in every way. He has been my greatest teacher in life and I will love him always.
Following the success of the half-marathon, I have developed such a love of running and fitness that I am now in training for the London Marathon. After Matt died, I did the Great North Run to honour his memory as my promise to him, but this time I know he would want me to run for as many people as I can that have been affected by a brain tumour, and so that is what I am going to do. On the day of the marathon I will wear angel wings filled with the photos of beautiful souls that have suffered with a brain tumour, both in memory and in hope. I am sure my husband will be looking down on me and still be having a good giggle at his wife in her running gear, but also really proud of me for everything I am achieving.
My husband is one of the shocking statistics; he is one of the adults under 40 that are killed by brain tumours. It cannot be right that only 1% of the national spend on cancer research has been allocated to this devastating disease, because the sense of helplessness you feel when you’re told there’s nothing more they can do is wrong, and it should not happen.
Matthew and I never stopped loving each other, so we still had hope and joy even on the darkest of days. And now I carry Matthew’s love in my heart always to share with the world in the hope that, one day, a cure for brain tumours will be found.