In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Husband and father-of-two David was just 39 when he died. He was initially diagnosed with a low-grade oligoastrocytoma brain tumour when his wife was 31 weeks pregnant with their first child. He underwent gruelling chemotherapy and radiotherapy and also had immunotherapy in a bid to arrest the growth of the tumour which over time changed to a grade four glioblastoma. He passed away in November 2016.
“David was dying and there was nothing more which could be done. He had been in 24 hour intensive care and now I was being advised to take him home and care for him myself. How was I to do that? Although he was terminally ill, at 39 David was too young for a nursing home and, ironically, not close enough to death for a hospice.”
David’s wife Shaz tells his story …
David and I were working for HSBC at Canary Wharf when we met. We were on different teams but sat fairly close to each other and our friendship grew from there. He was just a really, really funny guy, the type of person who could make anyone laugh. David was so inclusive, no matter what walk of life you were from, and he had this rare and wonderful ability to bring people together.
We were together through terrible times in 2007 when I lost both of my parents and David proposed in December the following year. I was born into a Muslim family and David was a Methodist although, touchingly, he converted to Islam. We managed to bring elements of both of those faiths and our cultures to the day when we married at Stock Brook County Club in Essex in February 2010. David’s father, an accomplished pianist, played The Carpenters’ Close to You as I walked down the aisle.
David’s family is from Carlisle and mine from London and although we had talked about moving north we settled in Woodford Green, North East London. Within months of our marriage David started experiencing speech arrests. It was happening at work and there would be 30 seconds or a minute during which he just couldn’t find the words to speak. Our GP put it down to stress but my gut told me it was more than that, David was a fit and healthy guy, he played football every week, and things didn’t seem right.
Fortunately, we had private health care through work and he was able to have an MRI scan. Two days later we discovered he had a mass on his brain. David was a strong man who had never been ill and I had never seen him as vulnerable as when he was taken to theatre for a biopsy.
David was determined not to tell his parents and I really struggled with that. I believe in the power of prayer and knew that they would want to pray for him but of course I respected his wishes.
Tests revealed that the mass was an oligoastrocytoma brain tumour. It was stable and not cancerous although we were told things could change over five or ten years. David was prescribed anti-seizure medication to try to stop the speech arrests and was to have scans every six months.
When the diagnosis came it was a huge shock not least because I was 31 weeks pregnant with Layla, our first child. Our perspective and priorities changed; we tried to live every day to the fullest even if we were just hanging around the house and I took tens of thousands of photos wanting to capture David with Layla, who was born in December 2011, and then with Daniel who came along in June 2014.
Thankfully at the beginning, David was having clear scan results and we started to become more relaxed but when Daniel was just eight weeks old I realised that David was struggling. Layla was two-and-a-half and he found it hard to cope with the noise and with being woken at night. He started to have headaches and there were occasions when he was in agony and couldn’t stand up straight or move. I realised something was going on with the tumour and a biopsy confirmed this. His tumour had changed and was now a grade four glioblastoma.
David was put on gruelling radiotherapy and chemotherapy. We didn’t know how long he would live, it could be ten years but that felt like nothing, it wasn’t enough, Daniel would only be ten, he wouldn’t be around to give advice to Layla as she met her first boyfriend … We set up two email accounts so that David could write to the children with the intention that these would be messages which would be there for them in the future if he wasn’t around to see them grow up. I haven’t read the emails as I feel they are private between the children and their dad. When they are older they will be able to read the messages and I hope this will help them to get to know their dad a bit more.
In 2015, David’s treatment finished and we lived our life in three monthly cycles, waiting for the next scan. Every time we had good news we celebrated with a holiday and had some great times in places such as Crete, Turkey and Tenerife. It was fortunate that the kids were so young and didn’t really understand what was going on and just accepted things. We had told Layla that daddy might lose his hair but she didn’t really notice the gradual loss and only commented when he had some remaining patches shaved off.
Somehow I managed to get back to work and get on with life. At the time I didn’t realise but, looking back, I can now see that towards the end of 2015, David’s personality started to change and he became quieter.
He started to feel unwell the week before Christmas but we decided to go ahead with our plans to travel to Carlisle to be with his family. We had to take him to hospital when he was struck down with a crippling headache and it was extremely difficult to get his notes so that the local medical team could know his history. It didn’t need his consultant to see from the scans that the tumour had spread – I could see for myself. David was put on steroids to control the swelling. Our world changed from then onwards.
David was very quiet and I thought he was depressed which would be understandable of course, although now I realise that he was changing because of the tumour. It was almost like he switched off, he would sit in a chair and do nothing. David was in such a lonely place and I too felt frustrated, sad, and lonely as my role changed from wife to carer.
Although it broke my heart, I prepared the children for what to do should they witness David having a seizure. We set up role play scenarios and I explained to them they were not to worry but to hold hands and stand somewhere safe. It was heartbreaking and I felt bitter that I should have to do this with a four year old and a two year old but I was determined to prepare them.
In July 2016, David suffered his first full-on tonic clonic seizure and was taken to A&E. His personality continued to change but, despite how tough things were, he managed to look into our finances and put things in order as he wanted to make things as easy for us as possible.
From September onwards, David was having regular seizures. As we had private healthcare, he was able to have immunotherapy treatment and, although we knew it wasn’t a cure, it was invaluable to know that we were able to have the very best care available. Looking back, I don’t know if it bought us any extra time or not.
David’s mum came to stay and between us we took care of him while I went to work when I could and also took Layla to school and Daniel to nursery. There was one occasion when, unusually, he had got out of bed to wave us off and I realised he had slumped over the gate as he succumbed to a seizure as we drove away. I had to abandon the car – and the children – while I ran back to him.
David started to have problems with his speech and it was so tough to see that as he sat with the children and read The Gruffalo, as we had always done, he struggled with the words and Layla would correct him. As time went by, David became very cold and detached. He wouldn’t even sit next to me on the sofa. I knew the tumour was progressing and things were going to get worse.
In September, David was able to attend his elderly grandfather’s funeral. He was only away for a couple of days and I noticed there were changes when he returned. Early the following month he had another massive seizure which changed things once more. He found it harder than ever to walk and I struggled more than ever trying to support him around the house and to ensure he was safe.
David was a proud man and would try his best to manage on his own, turning down my offers of help as he tried to clean up when he was sick or had an accident getting to the bathroom. It became harder to look after him at home.
There was a return visit to the Harley Street clinic but David was dying and there was nothing more which could be done. He had been in 24 hour intensive care and now I was being advised to take him home and care for him myself. How was I to do that? Although he was terminally ill at 39 David was too young for a nursing home and, ironically, not close enough to death for a hospice.
I felt so abandoned and as if there was no help or advice available to me. I was desperate and phoned round to try to get him a bed somewhere, anywhere. I finally got in touch with a private nursing home where a lovely lady, a stranger, offered to help. She somehow managed to secure funding through the London borough of Redbridge and they offered him a room.
The care we received at Woodland Grove in Loughton was exceptional. David was visited at the clinic before he was moved and the staff embraced us and went the extra mile. David was able to watch sport on TV and there were even a couple of guinea pigs for the children to play with when they visited their dad. It was such a massive relief to think that we were no longer on our own and that David was receiving the care he needed for the last three weeks of his life.
Things got to the stage where David was barely able to communicate with us and he slept more and more. We were with him every single day until the end. He died on 24 November 2016 at the age of 39.
David fought so bravely and never once complained about what he was going through. He was an avid fundraiser for many charities and even after his diagnosis he didn’t let cancer stop him from taking action to fundraise. In 2015 he completed the London Three Peaks Challenge for Stand up to Cancer and, only a month before being admitted to hospital for the final time, in September 2016 completed a memorial walk for The Alzheimer’s Society.
On 6 August 2017, what would have been David’s 40th birthday, we will celebrate his life with a memorial walk in London. Setting off from the HSBC tower in Canary Wharf, our two children and I will be accompanied by many of David’s friends, family and colleagues. Those who are unable to join us in London on the day are taking on the walk wherever they are. David’s parents will be taking part in Carlisle and former colleagues will be walking in his memory in Australia. We expect around 300 people to take part in what we are calling “the world’s local walk.”
I know it will be a very emotional occasion but it is important that we mark David’s birthday and celebrate his life too. It is so shocking to learn that brain tumours kill more children and adults under the age of 40 – like David – than any other cancer yet just 1% of the national spend on brain tumour research has been allocated to this devastating disease.
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.
If you have been inspired by David’s story, you may like to make a donation via www.justgiving.com/fundraising/walk4david40 or leave a gift in your will via https://www.braintumourresearch.org/legacy.
Together we will find a cure.
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