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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.
Anon

You are forever in our hearts.                                                         

David Leatherbarrow

Dave was just 34 and with two daughters aged five and two when he died from an aggressive glioblastoma multiforme (GBM) in January 2015. Previously fit and healthy, his wife Diane felt he was taken away from them bit by bit as radiotherapy and chemotherapy changed him physically and mentally.

“Jessica was just a baby but it was so hard for Charlie and I tried to explain that daddy’s medicine was to blame. It got to the stage where not only was he behaving like someone else, he looked like someone else too. Dave was a big man, 6ft 1ins tall and toned. During his treatment he put on around five stones in weight and ballooned to around 19 stones. He needed all new clothes and even then wasn’t comfortable in anything. Despite this, he was still the person I loved more than anything and it was so hard to see him struggle with the physical and mental changes when, other than be there when he needed me, there was nothing more I could do.”
 

David’s wife Diane tells his story …

Dave and I were like the flip sides of one coin, we had so many similarities that it was as if we were meant for each other. Despite living on opposite sides of Liverpool, we had met as children at inter-school events a number of times and eventually swapped numbers when we bumped into each other again on a night out.

We talked for hours and Dave wished me luck for the new job I was starting the next day. I walked into the office only to find that he was sitting at the desk next to mine and we both laughed.

It was only natural that we should start out as best friends. We enjoyed each other’s company so much and I think we were afraid to take things further as neither of us wanted to risk losing such a great mate. Eventually, Dave invited me out for a proper date and, within months, he took me to Paris and got down on one knee to propose at the top of the Eiffel Tower. It was a grand gesture particularly for someone so shy and who would never do anything to draw attention to himself. I was so happy and, hours later and with a new ring on my finger, I burst into tears as we wandered hand in hand along the Champs Elysee.

At the time I was living with my nan and it makes me laugh to think how we all accepted that Dave just moved in without any discussion. We got back from Paris, he had his suitcase and that was that, we were engaged and living together.

We were married in June 2008, six years after we met as adults. It was the most magical day of my life and we spent our honeymoon in Mauritius.

About six months after the wedding I was feeling exhausted and would come home from work and fall asleep on the sofa. A test confirmed I was pregnant. We were so, so excited and our baby girl Charlie was born in August 2009. I had spent many weeks in hospital prior to the birth with a septic gall bladder and lost five stones in weight. When I went into labour my body shut down and I was unconscious for more than five hours. As a result, Dave remembered more about the labour than I did!

We were delighted and more excitement followed when we found out another baby was on the way. Jessica was born on 12th July 2012. After everything that has happened since I feel now as if I was given the girls as a compromise; I wasn’t expecting to have children because of earlier health problems but I got them because Dave was taken away.

By the time Jessica was 18 months old, Dave had been promoted and was working for Nat West at The Plaza in Liverpool city centre. He called me from work one day to say he thought he had an ear infection and as if “waves were washing over him.” He was fit and healthy, went for a run every day and had rarely, if ever, had a day off sick. The sensation went on for three or four weeks and at the beginning of November 2013 he had an episode where it took him half an hour for his head to stop spinning after he had been playing with the girls. He was sent to A&E after seeing an out-of-hours doctor and then admitted to hospital for a scan. We were devastated to be told that Dave had a brain tumour and spent that night crying together with little or no idea what the future might hold. 

Dave came home and we spent the next week in shock. A bombshell had been dropped on us and we felt as if we had been left on our own to figure out what all this meant. An operation to remove the tumour was scheduled and then brought forward by a week as Dave’s symptoms worsened. 

As he arrived at the hospital the day before the op, he was stunned to be told there was a change of plan. It was now felt there was no point in trying to remove the tumour and he would have a biopsy instead. On several occasions, Dave was alone at the hospital when the worst possible news was delivered to him and it seemed very cruel that this couldn’t have happened in a more caring way. 

There were many occasions where we felt we were kept in the dark or told conflicting things and this only served to make the whole experience so much worse. 
A week after the biopsy the consultant delivered the news that Dave’s tumour was a grade 4 glioblastoma multiforme (GBM), the worst possible type. We had dreaded the idea that there was nothing they could do so it came as a relief to be told that he would start radiotherapy and chemotherapy straight away.

There was no prognosis as such, we weren’t told how long Dave had left and would have to wait and see because “everybody reacted differently” to treatment. Radiotherapy started and, by Christmas, Dave was very tired. The steroids he was taking made his face, belly and legs swell up. There were times when Dave would vomit all night. We told Charlie that daddy was sick and was seeing a special doctor who was giving him medicine which we hoped would make him better.

Things changed a lot for all of us. We had always loved being together, just the four of us. The kids had only been used to seeing Dave at home at the weekends and in the evenings but now he was here all of the time. His personality changed too and I lost the kind, laid-back, loving, thoughtful and active man I fell in love with. It was particularly hard when Dave lost his temper very quickly and would snap at us. With the help of his parents, Dave went to hospital for treatment every day for six weeks.

We discovered the tumour had started to grow again after Dave suddenly lost his sight and his hearing. Terrified, we took him to A&E where he had a massive seizure. I was horrified to see him hooked up to all sorts of machines and covered in blood. Thankfully, his sight and hearing came back and he had no memory of what had happened. Dave had had a massive bleed on his brain, possibly caused by a decrease in the dosage of steroids he was taking. 

He started the chemo and began to sleep more. He found it hard to bear noises and would shout really loudly at us all. Jessica was just a baby but it was so hard for Charlie and I tried to explain to her that daddy’s medicine was to blame. It got to the stage where not only was he behaving like someone else, he looked like someone else too. Dave was a big man, 6ft 1ins tall and toned. During his treatment he put on around five stones in weight and ballooned to around 19 stones. He needed all new clothes and even then wasn’t comfortable in anything. Despite this, he was still the person I loved more than anything and it was so hard to see him struggle with the physical and mental changes when, other than be there when he needed me, there was nothing more I could do. 

Because no-one at the hospital wanted to tell us how long we might have, we turned to Google to discover that the average survival for this type of tumour was 12 to 15 months after diagnosis, with 25% living for two years and 25% surviving for five. We tried to remain as positive as we could but the nightmare continued as a scan showed the tumour had grown despite all the treatment. Instead of having a three-month break from chemo, Dave was straight back onto it in September 2014, this time with a different drug. We were in and out of hospital every day or so as he struggled with sickness, a rocketing temperature and infections. I felt as if once people saw Dave’s diagnosis they gave up on him. He had a terminal brain tumour and there wasn’t much point trying too hard. As his condition, deteriorated Dave became agitated and argumentative, especially with me.

After blood clots were found in his lungs, Dave was put on the blood thinning drug heparin although there was no warning this could cause further bleeding in his brain. Towards the end of November it was so good to hear his doctor say Dave was looking the best he had all year but any optimism was short-lived when the vomiting came back and he contracted yet another infection.

There was an awful stage where we felt we were being bullied into signing a Do Not Resuscitate notice. Dave himself didn’t feel he was at that stage and neither did I. He was adamant he wanted to come home and did so, with a plan for palliative care, a few days before Christmas. 

Dave managed to get out of bed for around 15 minutes on Christmas day but he couldn’t eat anything. He told the kids that he loved them and it was as if he was saying goodbye. He went to bed and refused any food except chocolate – that was so unlike him. Dave began to hallucinate and he became irrational. He tried to climb out of the window and, at one stage attempted to break down the wall saying that Charlie was trapped inside. It got to the point where I didn’t feel it was safe for the kids to be in the house so I sent them to stay with family. Despite all this, Dave remained brave and showed so much courage and dignity.

At the beginning of January, Dave was taken to Woodlands Hospice. It was hard for us all to accept but I knew it was the right decision. By the time his 34th birthday came, he had lost his sight and his hearing. Night times were the hardest and he would become extremely confused and upset, needing sedation for his own safety.

Dave had made it clear that he hadn’t wanted the girls to see him like that but Charlie asked to be taken to him. Although he was slipping in and out of consciousness, Dave managed to haul her up onto the bed, give her a hug and tell her that he loved her. 
It felt as if Dave was fighting to stay with me and the kids. I hated to see him like that and, although it was the last thing I wanted, I told him that we were going to be alright and I would look after the kids. I fell asleep on his arm and, when I woke in the early hours of the morning, he had passed away.

I think the worst thing is that when someone you love has this tumour you lose them before you lose them. They are continually diminished by this dreadful disease and taken away from you bit by bit. 

Despite everything they have been through our children are happy and grounded. They have every right to be little monsters but they have continued going to school and doing the things they love. They are making us both proud.

Things have been very hard but I am concentrating on making new and happy memories for the three of us. Last year we went to Lapland. It was an amazing experience, enough to restore anybody’s belief in Father Christmas. I feel as if, after the previous unhappy time, it has helped me to get Christmas back for our children.
I am keen to do all I can to help other families. The kids’ school has been very supportive and we raised £100 for Brain Tumour Research by doing Wear A Hat Day in March. I am also planning an auction of power tools thanks to a generous donation via school.  It is so shocking to learn that 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 devastating disease.

Diane Leatherbarrow
March 2017

 
David Leatherbarrow

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