In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Sean was diagnosed with a glioblastoma multiforme (GBM) brain tumour in August 2016, aged 27. He remained positive throughout three brain surgeries, chemotherapy and radiotherapy, marrying his beloved Laura in June 2018. Tragically, there was nothing which could save him and he passed away in September 2018, aged just 29.
Here is Sean’s story, as told by his mother, Jo…
Sean had always been very healthy. He and his fiancée Laura were both vegetarians, he worked out in the gym, went to gigs and concerts, kept in touch with his friends and generally had a good work-life balance
For several weeks, Sean experienced intermittent vomiting, dizziness and crippling headaches, as well as tingling down his left arm. The symptoms came and went, but he continued to struggle into work at Sky’s Now TV, where Sean was a senior software developer. Blood tests came back normal, but then the GP requested an MRI scan and other tests after Sean said he was feeling so awful.
After the initial scan, Sean was asked to go back the following day for an MRI with contrast. At the time we just thought they were being thorough, but then Sean was called back earlier than expected for a follow-up neurology appointment.
“The doctor delivered the bombshell that Sean had a tumour in the right temporal lobe which was causing increasing pressure on his brain.”
Sean had been taken to his appointment by his best friend as I hadn’t been able to go. He phoned me and his sisters to find out what time we would be home.
He came over and told us he had a brain tumour and that it needed to come out. We were absolutely devastated. On top of this, my husband Bernard was away working overseas at the time.
The next day, Laura and I went with Sean to see his neurosurgeon Mr Plaha in Oxford, who ordered more tests and investigations. At this stage the neurosurgeon said he wouldn’t know what he was dealing with until he performed the surgery and took a biopsy of the tumour. We actually felt some relief that we were being told they could actually operate.
The following week, Sean underwent five hours of brain surgery at the John Radcliffe Hospital. The brain tumour was connected to Sean’s blood supply and he started bleeding profusely meaning that Mr Plaha had to stop the surgery, having only managed to remove around 60% of the tumour.
It took a while for Sean to stabilise after all the bleeding, but he was discharged from hospital after six days. However, we soon had a phone call to return in the morning. This time the neurosurgeon was accompanied by a Macmillan nurse – they had the results of Sean’s biopsy.
“We sat there listening to the news that Sean’s tumour was a terminal, glioblastoma multiforme, which could be anything from 18 months to five years’ survival time. It was a lot to take on board.”
However, Sean, being fit and young, was determined he would be the one to defy the odds. He was always so positive and this continued to be his approach - even in the face of brain cancer.
Sean spent a lot of time talking to his neurosurgeon who explained that he would be using a dye like a sat nav to guide him through Sean’s brain to the brain tumour, whilst leaving the healthy tissue alone. When Sean went down to theatre for his surgery, he said jokingly: “Have you got the sat nav ready?!”
In the car on the way to the hospital for this second round of surgery in just over a week, Sean had spoken about the phenomenon of people with brain injuries suddenly finding themselves speaking a different language. His Dad had told him: “If you mess around after your surgery, I will have words with you!” So, we shouldn’t have been surprised when, after the surgery, Sean suddenly piped up with “Hola! Como esta?” while wagging his finger at his father.
Sean was given six weeks to recover at home before starting six weeks of radiotherapy. The family all rallied round to make sure he could get to his appointments because of course he had had his driving licence taken away and Laura needed to work. Not being able to drive had a huge impact as it meant that Sean lost his independence, but we all tried to make it as seamless as possible.
In December, Sean had his first round of temozolomide chemotherapy. He was determined to continue working even though getting to his office in Osterley near Ealing meant going into London and then taking another train out again, taking almost two hours each way, instead of a drive of 40 to 45 minutes. Sean found it exhausting, despite having been given an area to sleep at work. Eventually he had to stop, which was a real shame as Sean had been determined to keep to normality.
Fortunately, Sean was able to work from home for a while and then it turned out that a family friend Bob was travelling to his office not far from Osterley and was able to give Sean a lift in on the days he was not working from home.
In September 2017, Sean and Laura, who had been together for seven years, got engaged and started planning their wedding.
Sean was having MRI scans every three months and for almost a year everything was ok. In November, having seen no change in every blood test and scan, Sean was declared to be in remission. We allowed ourselves to think that he was going to be ok.
“However, at the end of February 2018, a routine scan dealt us all the devastating blow that the tumour was back and deeper than the last time. It was the worst news, but Sean and Laura were determined to continue with their plans to get married in June that year.”
Sean underwent further surgery, this time an awake craniotomy as the tumour was very close to his optic nerve. He joked to the surgeon that he might as well put a zip in where the scar was.
It was an unbearably long wait of eight hours for Sean to come out of theatre. While we were waiting anxiously, someone was taking photos in the operating theatre of Sean with his head clamped, sticking his thumbs up!.
Again, we were told the operation was successful. Sean had had someone chatting to him the whole time and advising that if he experienced any visual disturbances such as flashing lights, the surgeon would stop what he was attempting to do.
This time Sean was put on procarbazine and vincristine (PCV) chemotherapy, but after just one cycle it knocked out his platelets and because the next cycle was due so close to his June wedding it was decided to postpone the cycle until afterwards. Sean was looking and feeling so well.
“Laura and Sean were married on 16 June. In their vows, they promised to make each other laugh every day.”
Then the two of them went off on what they called a ‘mini-moon’ to Greece for a week. They had wanted to go to Thailand before Sean had found he was going to be on chemotherapy. On the last day in Greece, Sean had a bad headache and was being sick. He thought he had a migraine or had picked something up on holiday.
Back home he was given anti-emetics, but they didn’t help. On the car journey back to Oxford the following day, it was horrible to hear him retching while I was driving. This time he was kept in overnight. We were very concerned that this was a result of the tumour, although we were being told it was probably down to the chemo. His next scan was brought forward and it brought the news we so didn’t want to hear – the tumour had grown bigger.
We were told that more surgery wasn’t an option at that time and, until his platelets were back to a normal level, PCV chemo couldn’t be resumed. It was such a frustrating time as we all felt that the tumour was being given a free reign.
Sean and Laura moved in with us for the time being while Sean was put on steroids to try and manage the swelling. We were back and forwards to Oxford every week to check his bloods. Meanwhile Sean was getting weaker, while also putting on lots of weight. The steroids made him continuously hungry; he was even taking snacks to bed. He became very bloated and had such a round face; he didn’t look like our Sean any more.
One Sunday evening in August 2018, we had family round to look at Sean and Laura’s wedding photos and videos. Sean got very frustrated with his laptop. Looking back, he was starting to lose his capabilities. When he was eating, I would notice that he was missing his mouth, yet despite the deterioration in his coordination, Sean was determined to carry on as normal as best as he could.
By now he had a wheelchair, although he was still just taking it for a walk, but not sitting in it.
On 13 August 2018, I was looking after my eldest daughter’s twin girls. When I returned home after picking them up Sean had been sick and was lying in the front room, slumped on the settee. Laura was with me and she rang for an ambulance. It was quite upsetting when a member of the crew asked us without any compassion whether we had a purple ‘do not resuscitate’ form.
On the way to Stoke Mandeville Hospital, Sean’s pulse became very low, so he was blue-lighted the rest of the way.
He was put on IV fluids and the consultant anaesthetist accompanied him to his MRI as they were now very concerned about his condition. Sean had had a big seizure in A & E, which we witnessed for the first time – we had been aware that previously he had been having vacant episodes. During the scan Sean’s heart nearly stopped and they were about to halt the procedure, but fortunately he recovered.
“It was heart-breaking to learn that the tumour had taken over Sean’s whole brain and that there was nothing more that could be done.”
Sean was discharged to the nearby Florence Nightingale Hospice and we had no idea how long he had. We were warned that he could have another massive seizure in the next 24 to 48 hours.
Sean was admitted to a six-bed bay with only one other gentleman. Laura, her mum, Laura’s sister, our daughters and me took over the rest of the ward, including the beds, while my husband was in the day room.
All night Sean remained very agitated, but after 24 hours he started to come to.
It was sad remembering that only the Friday before, we had had a visit from a hospice nurse and Sean had said: “I am not ready for the hospice yet.”
By Wednesday, Sean was able to walk along the corridor. He put his arm round me and said: “I’m in the hospice, aren’t I? It’s not that bad really.”
We spent our time talking and eating and friends came to visit. At one point there must have been 25 of us in the garden laughing and talking. The nurses were lovely and one even remarked how amazing it was to see Sean up and walking around, remembering how poorly he had been the first night when he was admitted. A doctor came to see Sean and had to ask which one was the patient!
Sean remained in the hospice for a week on a morphine and midazolam infusion. He had a few hours out of the hospice and we were given diazepam for him in case he had a seizure. He was eventually discharged but they held his bed for 24 hours just in case he deteriorated. Sean was now under the daily care of the Palliative Community Team and district nurses to manage his infusion pump, as well as monitor and treat his pain.
Before he left, Sean asked the hospice doctor if he could have a tattoo done. He and Laura have a special song called ‘23’ and they had planned to have this tattooed on their ring fingers after their mini-moon. The doctor said it was fine so they went straight to the tattoo parlour along with his sisters Emma and Kate, who also had their own special tattoos done all at the same time.
Music was such a huge part of Sean and Laura’s life. Sean was in to heavy metal core and had been in a band. Our nephew, a music producer in Los Angeles, sorted out tickets for Sean and Laura to go to Reading Festival and a friend arranged for Sean to have access to a room where he could rest if he needed to.
It was incredible that just 11 days after his collapse, Sean was at Reading Festival with Laura, his two sisters and sister-in-law; they were there as ‘his carers’. They arrived home at 2.15 in the morning.
“We were very anxious, but had to keep reminding ourselves he was doing what he loved. Sean’s first words were: “I’ve had the best time of my life” when they all got home.”
The next day Sean was back at Reading Festival but just for the evening.
Not long afterwards, Sean wanted us all to go to Bournemouth to the seaside. He asked to come off his syringe driver and go onto oral meds so that we could all go away without having to wait for the community nurses. The Community Palliative Care consultant visited Sean at home and told him if he wanted this to happen, it would have to do be done in a safe environment, in other words, in the hospice. That was fine, so we waited a few days for an available bed.
During this time, Sean was getting noticeably slower. On the day of his admission he was adamant he wanted to shower and breakfast first, but it was taking him longer and longer to do the simplest of tasks. Finally, we got him to the hospice. I could see the concern on the staff’s faces when we arrived; but they were amazing and always went at Sean’s pace and were always encouraging in their approach with him.
He had developed a cough and was becoming agitated; he was also was very tired. They decided to reduce his steroids in an attempt to alleviate his agitation and continuous hunger. 48 hours later, he woke up with an excruciating headache for which he was given morphine. The last compos mentis thing he said was: “I’m absolutely ravenous” while his eyes remained closed.
A little later at around midday, I was on the phone and went back into Sean to find he had been sick and, according to staff, had had ‘a significant episode’. The hospice team were brilliant, they kept a close eye on Sean and all of us; they kept him comfortable with regular medication. As the day progressed his breathing became more laboured.
“At around 10.30pm on 19 September 2018, Sean died. It was very hard to watch. We couldn’t believe what had happened; we couldn’t believe we had lost our boy.”
A week before he passed away, the hospice had advised us to get Sean’s will sorted as soon as possible. Sean’s dad contacted a local firm and they came to the hospice, spoke to him and Laura and had it all drawn up on the same day. His funeral wishes centred around music and he wanted all of us to wear our favourite band’s t-shirt.
Sean’s coffin was carried in by his friends and family to music by Trivium – his favourite band. The celebrant remarked on how she had never experienced a funeral that began with a heavy metal track.
I am left with so many memories including remembering that Sean had said he never wanted to be left in a vegetative state, reliant on others. Mercifully this never happened.
“Sean’s mantra was ‘carpe diem’ – seize the day and just get on and enjoy life. He was always telling us he loved us. I remember one day he said: “This must be very hard for you, Mum” and put his arms around me.”
Sean was so kind, thoughtful, generous and funny. The day before he died, he asked the doctor whether he could prescribe sleeping tablets; not for him, but for Laura because he knew she hadn’t slept for days.
He was also incredibly strong and that helps us now when we have a difficult day.
It isn’t until someone dies, you hear all the stories about them from friends and family, often stories you never knew. I have never heard a bad word said about Sean. He was always thinking of others.
After his diagnosis, Sean was happy to do anything to raise awareness of this terrible killer of young people. In the summer before he passed away, he participated in a world record attempt called The Great Guitar Challenge to raise money for Brain Tumour Research.
Not long after Sean’s diagnosis with a GBM, we went to a symposium with him where we heard about research that was being done, as well as the shocking reality of the underfunding for research into brain tumours. Sean commented: “Not much hope for me then” which is why our family want to continue Sean’s efforts to raise awareness of this cruel disease.
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.