In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Alexander Paul from South London was 18 when he addressed the 2014 Conservative Party Conference and described his experience of policing policy. At the Conservative Party Conference in 2017 Theresa May informed her party that Alexander had died earlier that year from a brain tumour. Joanna Brown tells the devastating story of her son’s illness, the awful impact on her and the loss to society of a gifted individual who had so much to give.
“It is this sense of crushing loss, this waste of potential, that haunt my days. He did so much but could have done so much more. I did everything I could but I couldn’t save my son and our tragedy is a wider tragedy as society needs people like my son, Alexander.
I am angry and full of what ifs but we have his poetry, his humanity and his spirit as his legacy. We didn’t discuss his mortality, he didn’t leave us letters but he left us his prose and that comforts me. A book of his work was published a year on from his death and he would have been proud of that.”
Here is Alexander’s story, as told by his mum Joanna…
Alexander, my eldest son, was born on 11th October 1995. As a boy he was confident and gifted, reading by the age of three and able to write stories at five. My boys, his brother Lamar born 20 months after Alexander, were born in Cardiff but the family soon moved to South London where I grew up.
He was always Alexander, although some friends called him Alex, he allowed me, and only close family, to call him Zander.
Alexander had no problems at school. He was a spiritual person and was raised in the church although he did question things and around aged 14 developing an interest in Rastafarianism and other faiths before accepting Christianity at University.
The area the boys grew up in did have some issues with crime and Alexander used to hang out with the local kids playing basketball and knew boys who got into trouble but he was a keen footballer and was accepted into the Fulham FC Academy and that occupied much of his time. However, he knew his own mind and could be very strong willed and at 15 he gave up any idea of becoming a professional footballer. Alexander could have been anything he wanted – he was gifted that way.
In 2011, his grandmother got sick and Alexander became more reflective, even melancholic at times, and started writing poetry. My marriage to Alexander’s father had failed earlier and I felt this may have affected his mood. When I look back I do wonder if he had a form of depression. He didn’t talk things through at the time as he said he had his own way of dealing with his moods. Later, at University he became passionate about the need for men to talk more to protect their mental health – he was ahead of his time with that one!
Looking back, I wonder if the early symptoms of his brain tumour were mood related. Did a chemical imbalance cause his inner turmoil? If we had known then, what we were to find out later, could things have been different? We will never know and I try not to beat myself up with such thoughts.
The first time Alexander was stopped by the police, he was around 12. In the following five years, he was subjected to stop and search 20 times. I am a lawyer and told him that when this happened the police should provide a slip with their reasoning for this intervention. He just said: ‘They don’t need a reason’.
In 2014, the Conservative Government were reviewing this stop and search policy and a focus group visited the college in Clapham were Alexander was studying for his “A” levels. Five students, including my son, were invited to talk with the group and explain about the young, black experience of policing in South London. He was vocal and charismatic and was invited to feedback directly to the Home Secretary at the time, Theresa May. Then came a dramatic invitation for my son to address the 2014 Conservative Party Conference. I almost burst with pride watching my son address the leaders of our country, an 18-year-old black boy who had yet to vote was contributing to a review of a national policing policy.
I know his friends have half joked that he could have been the first black Prime Minister. Alexander’s talk was now of being a lawyer, a journalist, or a politician. It almost felt like it that day. He had the world at his feet.
Our nightmare was about to begin.
Alexander’s studies continued at Warwick University and he was studying Politics and International Studies. On 18 March 2016 I was in court in London and to my annoyance my phone started persistently buzzing. When I got a chance to answer the call it was a friend of Alexander’s asking if he had any allergies. When I asked why, I was told he was having convulsions. This seemed bizarre as he was always so fit and health conscious. I then spoke to a nurse who said they were going to put him in an induced coma – I couldn’t believe what I was hearing. Alexander had been due to go to Belgium that day and had got up early but he collapsed and was found by a friend convulsing in the bathroom.
If he hadn’t been found he could have died there and then.
He was in a coma for three days. and we were warned that he could be brain damaged when he was woken by the doctors. However, he woke as the old Alexander. He had a scan and a lesion on the brain was noted. There were more tests and for the first time the word glioblastoma was mentioned. Alexander left college and the plan was to defer his place for a year while he was treated. I believe the policy they were adopting was called “watch and wait” and we certainly had to wait as two proposed biopsies on the tumour were postponed due to doctor’s strikes and lack of beds. Alexander’s care was transferred to Kings College Hospital and I began to research into alternative treatments, mainly dietary (raw food, no meat). However, I felt things were stable enough for me to have a pre-booked break and I went on a holiday to Cuba as he had no headaches and appeared fine. It was there I received my second awful phone call. It was Alexander and he said: ‘Mum I’m in hospital, I’ve been having terrible headaches they are going to operate tomorrow’.
I did what any mother would, but I was in the air when they operated on my son.
I never left his side again.
I believe sugar feeds a cancer and that we are what we eat so on my return, and in desperation to help Alexander, I tried everything to influence Alexander’s health through diet and other alternative treatments. We always ate the same things, and we ate together, whether it was cottage cheese, blackseed oil or apricot seeds. I wanted to drive the badness away through good food and a Mother’s love. Alexander used to say: ‘It’s all right, Mum, I’m okay, I can eat anything’, and he used to crave Jamaican patties, which was funny as he had always been so healthy with his diet.
A meeting was scheduled to discuss the results of the surgery. We thought and hoped the tumour was benign but were told the meeting was to be with the consultant and a Macmillan nurse and this made me so wary. At that meeting the bombshell was dropped.
Alexander had a GBM – the most aggressive and devastating form of brain cancer.
Alexander’s public persona remained upbeat in the face of this colossal shock and I buried myself in research – whilst he was saying: ‘It’s okay I can beat this’, I was questioning whether chemotherapy was the right choice or a terrible poison and whether we should battle this unwelcome visitor holistically.
After six weeks of radiotherapy the scan results seemed positive and so a decision was agreed to try chemotherapy for three months. Alexander took it in tablet form, the drug was so toxic I had to wear protective gloves to hand the tablets to him. I now believe that during this three-month period the tumour regrew, it grew bigger than it had been before the de-bulking surgery. It was unbelievably painful to watch Alexander suffer from awful headaches and be incapacitated with episodes of vomiting too. He was in physical decline and looked like a stroke patient with his left arm drooped and his left side weakened.
We were now under the care of the Royal Marsden and when they offered some palliative care at a local hospice it so shocked me that I doubled my research and found out about a clinic in Germany where they delivered hydrotherapy. We went there in January 2017 and the UK healthcare professionals were not happy when they found out. I borrowed money from a friend to raise the £18K for this trip. Alexander was too proud to crowdfund.
The German clinic didn’t promise a cure but they expected to deliver shrinkage of the tumour and that meant more time. They said we needed to visit three times and to finance that we definitely now needed crowdfunding.
We raised £55K in seven days!
Devastatingly, following our first trip to Germany, our scan at the end of January showed no tumour shrinkage. We returned to London with Alexander regularly fitting and collapsing. I know not everyone may have agreed with what I was doing but I was a mother trying to keep my son alive.
A second hydrotherapy visit and vitamin infusions didn’t help, neither did Chemoembolisation (administered by a tube from the groin to the brain) and our deflation was complete by the end of February.
I had already taken the decision to stop working after the operation and was living on a tight budget.
Alexander was baptised on March 12th in a beautiful service, by this time he had to use a walking aide and eventually was in a wheelchair
He was fitting more in April and on one occasion I had to call our pastor as I thought the time had come to administer the last rites.
He pulled through but was becoming more and more prone to infections, he said no to a hospice but was bed ridden at home with me by his side constantly.
In May, we made adaptations to the house whilst he agreed to spend some time in a hospice. His morphine was increased and sometimes we ate whatever we liked. I did adopt the ketogenic diet for him and his headaches definitely subsided when I was blending his food but things were moving quickly and he was also on steroids. At this stage he was often cold whilst the rest of the country was enjoying a heatwave.
Although it wasn’t diagnosed immediately he contracted sepsis just after he left the hospice and was rushed to hospital
It was a horrible, nightmarish time to see this beautiful boy’s body and mind be so devastated and at the end of May a massive seizure ended Alexanders’ ability to speak properly. He was clearly agitated and wanted to talk to me but he was trapped in his failing body. He wanted release and was finding it difficult to sleep.
On Saturday 3rd June l – I found him gasping, the cancer had won and at around 13:30 with his parents, his friends and his pastor in attendance my son, my beautiful, gifted exceptional son Alexander Paul left us.
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.
Together we will find a cure.
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options