In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Daniel Payne, of Brackley, Northamptonshire, had already been treated for testicular cancer when, in 2006, at the age of 22, he was diagnosed with an incurable grade 2 astrocytoma. During his 13-year-long battle with the disease, he not only faced testicular cancer a second time but underwent four brain surgeries, developing an abscess and a serious infection as a result. The last three months of his life were the most difficult as his tumour progressed to a grade 4 glioblastoma multiforme (GBM) and he lost control of his body, ultimately deciding he did not want to continue with treatment. He died at home by his loving wife’s side on 23 December 2019.
Here is Daniel’s story, as told by his wife Jade …
I met Daniel a couple of years after he was diagnosed with a grade 2 astrocytoma. I do know that he developed an abscess after his first surgery which meant he had to be operated on again, but he didn’t remember much about it because he was so unwell. I just accepted him for who he was – he didn’t let it affect him and I wasn’t going to disown him because of his condition. He did say that it was only going to get worse and he wouldn’t blame me if I wanted to leave, but that was never something I considered, even at the very end when his brain tumour had turned him into someone I barely recognised.
He told me his symptoms started shortly after he had his right testicle removed to treat testicular cancer. He was getting a tingling sensation, like pins and needles, down the right side of his face, which was initially attributed to anxiety following his recent surgery. Fortunately, his GP made an unscheduled home visit and called for an ambulance to take him to what was then Oxford’s Radcliffe Infirmary. He was given scans and subsequently a biopsy, which is how he discovered which type of tumour he had.
“The doctors said the only way to reach the affected cells was by removing healthy parts of Daniel’s brain, which would have left him mentally disabled.”
“So, at the age of 22, only about one month after having had testicular cancer, Daniel was told he had an incurable brain tumour.”
He didn’t let it affect him, though – his whole attitude was ‘what will be, will be’. It sounds clichéd but he was literally so brave throughout and didn’t show an ounce of fear up until two years ago when things got really bad and, tired and frustrated that his body was failing him, he decided enough was enough.
In 2010, he had his remaining testicle removed to treat testicular cancer a second time, but he didn’t show any further symptoms from his brain tumour until October 2013. He used to make kitchen cabinets and wardrobes and noticed that when he bent down, he was getting a build-up of pressure in his head and some tingling, but it wasn’t until it got worse the following month that he finally went for a scan. His last one up to that point had been in 2007 and his consultant apologised for somehow missing him off the system for six years. It turned out there was some new growth and Daniel did need to have another surgery, but as it was only minor, he was able to delay the operation until after Christmas and it went ahead in January 2014 at the John Radcliffe Hospital in Oxford, without any complications. After that he was placed on three-monthly, and later six-monthly, scans.
It was a routine scan in July 2016 that brought us the news his tumour had grown again and on 3 August, my brother’s birthday, Daniel had another operation. I went to visit him on the ward afterwards and he was really struggling to keep his eyes open. He was never one to voice his concerns or say how ill he felt, he was very much the protector, so I was worried when he said his eyes were hurting, his head was throbbing and he felt similar to when he’d developed the abscess after his first operation. I spoke to the staff as they were doing a handover and my mum was there to back me up on how unusual it was for him to say he was in pain.
The next morning, he sent me a text and I didn’t have a clue what he meant because there were no clear words, just random letters, so I called him and he couldn’t remember sending it but complained about not having had breakfast, even though it was only 6am. I went back to the hospital and told them something wasn’t right. After carrying out a number of tests, including a lumber puncture, his consultant told him he had an infection, but they weren’t sure where it was so they gave him antibiotics and kept him in hospital for 13 days.
He seemed fine when we got home but a few days later he woke me up in the middle of the night to tell me he’d spilled a drink. I went to clear up the mess and there wasn’t any, which was odd. When we woke up later that morning, Daniel’s pillow was soaking wet. His head was sweating and I told him I thought he should go to the doctor’s but he didn’t go until the next day, at which point they sent him straight to the John Radcliffe. They discovered he had an infection in his bone flap so removed it, leaving a soft dip in his head and they didn’t replace it until eight months later when they fitted a skull plate. The next morning, he passed out whilst having a canula fitted and the doctors said they thought he’d had a seizure but they didn’t know if it was caused by the infection or the tumour so they started him on anti-seizure medication called Keppra.
“They also did another biopsy and discovered that his tumour had progressed to grade 3, which meant it was more serious and faster growing.”
He was sent home with a PICC line fitted so that we could administer his antibiotics ourselves. I had to use a stopwatch to make sure he was syringing 2ml over three minutes. We had to do that for six weeks and it was hard work. I even changed my job to be closer to home and, on the days I couldn’t help him, his sister did. Once he’d finished the antibiotics, Daniel started a six-week cycle of radiotherapy at the Churchill Hospital in Oxford, and then an 18-month course of chemotherapy. He experienced a bit of tiredness and hair loss but he didn’t lose his appetite – he would eat me out of house and home.
By the time we got married, on 22 June 2018, he was having no symptoms or pain in his head and if you looked at him you wouldn’t have known he was living with a brain tumour. Everything was going fine until the following June when a scan showed a possible growth in the middle of his brain. His consultant told him she thought it was just scar tissue from the radiotherapy and sent him away, telling him to come back if he had any problems.
“Daniel went on to have a few clumsy accidents at work, which wasn’t like him, but his sister had passed away the month before so he put it down to stress.”
In the summer he hurt his back at work and kept leaning to the left and, after watching him, I wasn’t happy with it. He would also blame our dog, Wilson, for knocking him over when he crouched down to make a fuss of him, but I knew he was falling down before Wilson even got to him. It wasn’t normal to be so clumsy and I knew in my gut it wasn’t a good sign but how do you say that to someone you love? When he did get a scan, we got the devastating news that he had four new growths. His tumour was now classified as grade 4 and he was referred for chemotherapy straight away.
He passed out at work about a week later and got sent home. He was barely walking and was dragging his feet, unable to move his legs properly. There was no way it was a side effect of his chemo so I went with him to the doctor’s where we were advised to contact his consultant, but we tried calling and didn’t hear back. By the following day, Daniel had lost the ability to walk on his own. He was 6ft 4in and I’m 5ft 1in and I was trying to pull him up to get him to the toilet because he had no bladder control – it was horrendous.
“I knew then that he was going to die – the scan on his brain in June wasn’t scar tissue, I just knew it.”
I contacted the triage team at Churchill Hospital and they wanted to see him that same day. By the time we got there, I had to change him because he’d had another accident, which the doctors put down to the side effects of the chemo he’d had the week before. They weren’t listening to what we were saying and Daniel was getting increasingly frustrated at the number of accidents he was having. When we returned home, he started zoning out, having silent seizures lasting up to 60 seconds, so I rang the triage team again and was told to call an ambulance, which took him to the Horton General Hospital in Banbury. Daniel didn’t understand why he was in the hospital and was getting annoyed with the nurses because they weren’t telling him anything.
There was a Macmillan Mobile Information and Support Service (MISS) bus in Banbury town centre so I went and spoke with a specialist nurse there. I took Daniel’s latest report with me and she went through each and every word of it and told me that Daniel had a grade 4 glioblastoma multiforme (GBM). I was heartbroken and angry that we hadn’t been told the truth by his consultant. I told the nursing staff at the hospital that either they had to break the news to Daniel or they needed to get his consultant up from Oxford to do it.
“My husband was dying and they were lying to him – he deserved to know that he was fighting a losing battle.”
He knew something serious was going on when we walked into the room because he could read me like a book. The nurse told him and he broke down and cried – I’d never seen him like that before. That night his consultant from Churchill, the one we’d been trying to contact for three weeks, rang me and said she thought we should arrange a visit.
“As they were finally being honest, I asked what his prognosis was and she said six months if his treatment was successful and three months if it wasn’t.”
Daniel didn’t come out of the hospital until 7 October 2019. We were told the chemo may or may not work and we needed to start putting our affairs in order. He wasn’t ready to leave me and was scared of dying – he was only 35 years old – but he deteriorated quickly. In November, he was trying to open the lid on his chemo tablets and, when he couldn’t, he threw them across the room and said ‘I’m not taking them anymore, I’m done’. He was in a bad place, he hated me dressing him and the carers washing him and he always said that if his brain tumour made him lose control of his body, I was to suffocate him with a pillow. He didn’t want to go that way, he didn’t want to be aware of what was going on.
His GP came round to talk to him a lot and when he was next due to take his chemo tablets again, I put them in my hand and told him to choose. He did take them but he said that was the last time. I was relieved and so proud of him because watching him deteriorate as quickly as he was and still trying to be brave to protect me was so difficult. It was heart-breaking knowing he was dying and watching him go through the pain and suffering, all the frustrations, just to prolong the inevitable. It wasn’t just his mobility that was affected, he was also losing the ability to talk.
“The next time his GP came to visit, he had started getting a build-up of fluid in one of his lungs and asked for a DNR (do not resuscitate) to be put in place.”
Towards the end of November, he had two syringe drivers fitted, one for his Keppra and the other for morphine. His hospital bed arrived on 5 December and, after we set it up in the living room, that’s where he stayed. Our home was like Piccadilly Circus with carers, district nurses, Daniel’s GP, the hospice at home care team and, at night, I often had to call the rapid response nursing team. I wasn’t really sleeping because I was constantly watching over him when we were alone. I made up a bed on the sofa next to him and when other people were around, I would nip to the shops or walk Wilson but I wouldn’t go far. I knew he was in safe hands but I was worried he would die whilst I was out. A week before he died, he became increasingly disorientated and agitated and threw his lunch at me. I was completely shocked. I knew it was the tumour talking but I was really upset because it wasn’t the first time he’d lost his temper with me that week.
“The brain tumour had turned my cool, calm, full-of-life husband into a monster.”
After we fixed a problem with his catheter and made him comfortable, Daniel told me he wanted to go and I knew it wasn’t going to be much longer. When he didn’t wake up, I opened up some Quality Streets we’d been given – we always used to fight over the strawberry ones so I unwrapped one and waved it under his nose. I knew he was aware I was there because his face changed and if I held his hand, he would try to squeeze mine back. I told him that I knew he was ready to go but at midnight we’d have been married 18 months so I begged him to hang on and not leave me before then. I woke up at 4.40am the next morning with Daniel making a horrible, strange breathing sound. I rang his GP, the rapid response team and his dad because I was frightened and didn’t want to be alone.
Daniel’s GP turned up at 7.10am, worried because I hadn’t called back to let him know what was going on. He checked him over and said his heart rate was through the roof. He couldn’t say when it would happen because Daniel was young, but we were literally waiting for his heart to stop. He gave us two more days at most. After Daniel’s dad left, I watched Wilson walk from a chair next to Daniel onto his bed and start licking his face, literally smothering him in kisses. A hospice at home nurse told me she thought Daniel would go sooner rather than later and when, all of a sudden, his eyes opened and rolled back, she told me it was time and guided me to the chair beside him. At 10.05am my darling husband took his last breath. I was heart-broken but I was glad he was gone. As much as I wished he didn’t have a brain tumour and was still alive, watching him go through what he did in those last three months, from being able to do everything himself to losing total control of his body, was terrible and not what he wanted.
“During lockdown last year, I was able to spend time working on self-healing but in many ways this year without Daniel has been much harder.”
It feels like there have been more firsts – I’ve struggled with things like his birthday and our anniversary, and it looks like I’m going to have a court battle on my hands to be able to use his frozen sperm for IVF – but I know that Daniel would feel proud of me for sharing his story. He had always wanted to join a support group to talk to others about his experience of living with a brain tumour but he was such a happy-go-lucky guy that he couldn’t cope with people who felt sorry for themselves because of their condition, so he never did it. After watching his battle, raising awareness is so important to me because a lot of people aren’t aware how serious brain tumours are and the lack of funding they get. The UK is so far behind countries like America and Germany and that has to change. Even if just one person is able to take comfort from this, I’ll have done something positive and will have kept my promise to Daniel to do all I can to help.
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