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.
“When our daughter asked ‘Is Daddy going to die?’ I told her that he was and that he had been fighting hard but the doctors couldn’t help him anymore. She ran in to tell her little brother and we all cuddled and cried together. Although Matt knew it was right to tell the children it was so sad and so difficult for him. It’s one thing talking about someone’s death but quite another when you are speaking about your own.”
Matt’s wife Gill tells his story…
Our paths first crossed when Matt and I started at a financial services company on the same day. It was 2000 and we were among a group of youngsters in our first jobs after university who hung around together. After a few weeks Matt and I were a couple, pretty much living in each other’s pockets.
Matt died in March 2016 just months after our tenth wedding anniversary. When we first met I had been struck by his wonderful beaming smile and beautiful blue eyes. It’s particularly tragic that the brain tumour which killed him robbed him of his sight. I think it’s true that your eyes are the window to your soul. When he lost his sight, his sparkle disappeared and it never came back. We were fortunate that Matt was able to spend the end of his life at home, surrounded by his family. He was in a wheelchair and had lost his independence, not really wanting to go anywhere and too self-conscious to have a meal out.
Things had changed so much from our happy, carefree holiday to Tenerife in the summer of 2014. Chloe was seven and Oscar was four and it was an age where we could all have great fun together.
Chloe went back to school in mid-August and Oscar started too. A week later, on the August Bank Holiday, our lives changed forever. Matt and I were unpacking groceries when he had a ringing in his ear and began to feel light headed. He sat down and had a sip of Diet Coke, thinking the sugar would help him, but then he froze and the can dropped to the ground. I didn’t realise it at the time, but Matt was having a seizure.
As unlikely as it seemed, my first thought was Matt had had a stroke. He was admitted to Borders General Hospital and taken to intensive care where he remained unconscious. It was very scary as there had been no symptoms or other warning signs of whatever this was. A CT scan revealed a possible cyst and there was also talk of some kind of infection but the reality was far worse: Matt had brain cancer.
Reluctantly I left the hospital to get home to the children who were being cared for by a neighbour and Matt’s parents who had rushed up to be with us. By the next morning, Matt had come round and was well enough to phone me. He was allowed out for the weekend while arrangements were made for surgery at the Western General Hospital in Edinburgh. It was great to have him back and he seemed quite normal although it was impossible to forget what lay ahead. At that stage we didn’t know if Matt had a primary tumour or if it had spread from elsewhere. Neither did we know if it was low-grade or something more sinister.
The operation took around three hours and just 48 hours later Matt came home. He had a “c” shaped scar from the top of his ear to the top of his head where the surgeon had made an incision to flip open a flap of skull in order to remove the tumour. There was also a line of very neat staples. It was around the time of our ninth wedding anniversary when we were called back to see the surgeon. Matt’s tumour was a grade 4 glioblastoma multiforme (GBM). The news was bleak; the tumour would come back and it would shorten Matt’s life.
The average life expectancy for this type of tumour, the most common and most aggressive, was 18 to 24 months after diagnosis. There were exceptions of course, we were told of patients who lived for five years or even ten. We were hoping for five years and then possibly five more. To start with we didn’t tell the family about the possible timescale. We did tell the children that daddy had cancer, it was a brain tumour, and that he was going to have treatment. They were upset but it helped that they could see for themselves that Matt, although tired, appeared to be well.
It was easier for the kids when we were at home. Oscar was young and didn’t really get what was going on but Chloe found it hard particularly when we had to attend appointments and she worried about when, or even if, we would come back. Daddy was home a lot more and the kids got to spend more time with him although it was bitter sweet of course.
Before Matt started his treatment the four of us went to Center Parcs at Whinfell Forest in Cumbria with his parents and his brother Alex and his wife. We had a great time, it was very chilled out and we arrived home on Sunday ready for treatment to start the next day. We were hopeful and pushing for as much time as possible.
After a couple of weeks Matt started to get bouts of double vision. He became extremely tired and started to get pain from the top of his neck up into his head. There was another MRI to check if the tumour had grown but, thankfully, it hadn’t. Matt managed about four-and-a-half weeks of chemo but some of his blood counts started to suffer and we were advised to stop. Radiotherapy continued until shortly before Matt’s birthday in November.
Ever since he was a kid, Matt had loved Christmas. It was the whole thing, he could remember his excitement as a kid coming downstairs to see if Father Christmas had been and he always wanted to recreate that. We managed to have a big happy Christmas and I kept telling Matt it wouldn’t be his last. A few days before we had a get together for friends and neighbours who had helped and supported us. Matt was the life and soul of the party and I genuinely felt that things were getting back to normal and we might just might be OK.
It was on Chloe’s birthday in early February when Matt had his next scan. To his doctor’s surprise, and our relief, it came back clear. Although Matt wasn’t up to the stress of going back to his job as a senior manager with financial services company Standard Life, we were able to go out and do things as a family and it felt like we were doing well.
By April, things took a turn for the worse. Matt began to feel unwell. He had a couple of falls and it frightened the life out of us when he fell out of bed one night. He was on anti-seizure drugs for epilepsy and steroids. When he began being sick I was worried that he wasn’t getting the benefit of his medication and began to think perhaps I couldn’t look after him at home. There was another scan and to be honest it wasn’t a massive shock to be told the tumour had grown back.
The surgeon was willing to operate once more but asked us to consider carefully whether to go ahead. The stakes were higher this time. The risks of infection were greater and the healing time would be much longer, Matt could end up paralysed on one side. Despite this, Matt decided it was a risk worth taking and went ahead with the surgery in order to buy as much time as possible with his family.
This time, Matt was in hospital for five weeks. He worked hard at physiotherapy and occupational therapy and we made changes at home to move our bedroom downstairs and create a wet room.
By the autumn, Matt was registered blind. Although he was in a wheelchair he could still transfer himself into a chair or the bed, it was only in the last week that he lost the ability to do this. Family life was becoming harder for Matt and it got to the stage at the end where he couldn’t cope being around the kids. The noise and bustle just became too much for him.
He did try to cuddle the kids as often as he could. It was particularly touching to see Chloe describing everything which was happening as they sat together watching TV.
While I was keen to know what lay ahead, Matt wasn’t interested knowing anything other than his death would be simple and pain free. He had two rounds of a different type of chemo drug but the next scan showed it had had no effect. He could try a third line chemo although there was little chance of success. Matt decided it was more important for him to be at home and to have as much time with his family as possible.
It was at that stage that Matt sent a long email to our friends explaining how things were. He wrote that there would be no more treatment and he was leaving it up to his body to see how long he could go on.
We had a great response and many people said how incredibly brave Matt was and they understood his decision to end treatment. This happened around our wedding anniversary. We had made it to ten years.
It was important for Matt to catch up with old school friends and work colleagues so we set off on a “farewell tour.” It was obvious what we were doing; Matt was saying goodbye. We got to Christmas and it was extremely emotional. Whereas the previous year we had been telling Matt that it definitely wasn’t his last, this time we all knew that it was. We tried to keep things as normal as possible for the sake of the children, we wanted them to remember it as a happy time.
After that milestone, it was as if Matt felt he had achieved his goal and he started to let go. We noticed there was a lump under the scar on his head and it was distressing to discover that it was caused by the tumour as it grew and pushed through the holes which had been drilled in his skull during surgery.
Right from the start we had told the children that they could ask us anything they wanted. We sought some advice on how to prepare them and one Sunday evening towards the end of February, Chloe said she had a question for me. Bless her, she said: “Is Daddy going to die?” to which I replied “Yes darling, I’m afraid he is. Daddy has been fighting for an incredibly long time but there is nothing more the doctors can do.” She went through into the other room and spoke to Oscar who immediately came in and said his sister had told him that their daddy was going to die. We all cuddled and cried together. Although Matt knew it was right to tell the children it was so sad and so difficult for him, it’s one thing talking about someone’s death but quite another when you are speaking about your own.
Matt had been on morphine for a number of weeks and we started to have daily help from a nurse. We were approaching the end and, for what turned out to be his last week, it was as if Matt hated me. He just couldn’t understand things and was taking it all out on me and would say: “Are you trying to be horrible to me?” Things were peaceful when he slept but difficult when he was awake. He went to bed on the Monday night and never got up again. One night he was given a sedative because he was becoming increasingly agitated. On the Friday, the doctor decided it was time to move from oral medication to a drip and advised that Matt was unlikely to last longer than a week once they had done this. I called his brother, Alex and their parents. They all came round.
That evening I put the kids to bed as normal at 7pm. Oscar had been down to say goodnight to his dad but Chloe was frightened by Matt’s loud breathing and snoring. We managed to have a bit of a laugh as I suggested she put her earmuffs on but as I took her up to bed she said she didn’t want to sleep.
Shortly after that, Matt passed away with me, his brother and parents at his side. Chloe was having a cuddle on the sofa nearby with her aunty and Oscar was tucked up in his own bed. It was 4th March and Matt was 38.
The grieving process for me started 18 months before Matt died as the two of us came to terms with the idea that we were not going to have the life together we planned. I spend a lot of time listening to a playlist we compiled which represented our 15 years together. There is stuff like Dave Pearce dance anthems, REM and U2 and there are happy memories of cruising around in a convertible car with the music at full blast! While Oscar likes to talk about Matt, Chloe doesn’t as she finds it too much of a reminder that he’s not here.
We have been raising money for Brain Tumour Research in Matt’s memory. In addition to donations from the funeral, Alex raised £6,200 by running 5K a day for 50 consecutive days, a great effort for someone who admits he’s “not built to be a natural born runner.” It is such a shock to discover that brain tumours kill more children and adults who, like Matt, are under the age of 40 … yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
The photo collages we made for Matt’s funeral now hang in the children’s playroom and Chloe wrote a short verse which was read out at the service on her behalf. It was very simple: Violets are purple, the sky is blue. You will always know how much I love you.
We moved up to Scotland from Leighton Buzzard in Bedfordshire four years ago. For over a year Matt had been commuting up here on a weekly basis. Now he’s gone, people ask me if I plan to move back but my commitment to Matt is that I will do my best to give the children the childhood we planned together, one where they can play in the countryside and enjoy the outdoors.