In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Mike Hawthorn from Ashford, Surrey, was 26 years old when a routine eye test revealed a brain tumour in 2014. He endured numerous surgeries as well as chemotherapy and radiotherapy. After exhausting the NHS standard of care he had some success with the drug Avastin, which had to be privately funded. Mike lived with his meningioma for nearly eight years, and during that time he and his wife Emily had a baby boy, Edison. But the tumour suddenly regrew in April 2021, and pushed through his skull onto the outside of his head. After suffering infections and a tripling in the size of the tumour, which pushed the mass down into his neck, Mike died in July 2022.
Here is Mike’s story, as told by his wife Emily…
Mike had been suffering for a while with headaches, but he was only 26 and we didn’t think much of it at the time. It was during a routine eye test in October 2014 when the optometrist saw something was very wrong.
Mike was rushed to St George's Hospital where they confirmed he had a tumour. He had an emergency eight-hour operation to remove it. I think because it all happened so fast and Mike was diagnosed in an emergency setting, we were all really naïve as to what a brain tumour was and what the consequences of that diagnosis would be. Mike was the most positive person you could ever meet and I think if he knew from the start how bleak the prognosis was, and how draining the journey ahead would be, he would have found it much harder to deal with.
Due to its location the surgeons could not remove all of Mike’s tumour, so he needed Cyber Knife radiotherapy to treat what was left.
We were told it was a grade 2 meningioma. The doctors never really gave a prognosis, but they did seem hopeful.
“They did say there was always a chance Mike’s tumour would regrow, but even they were surprised by just how quickly it came back.”
In 2018, following another operation, the doctors performed a second biopsy. We were told that the tumour had changed to a grade 3 so he needed chemotherapy to try to halt the growth. But later scans showed the tumour was still growing. It was applying pressure to his optic nerve and causing visual disturbances.
After exhausting the NHS standard of care, we were told about a drug called Avastin, which he could have if we funded it privately. It was about £3,500 per infusion, and he needed to have an infusion every three weeks. We started to fundraise, with golf days and things. Fortunately, this was just before the whole country went into lockdown due to COVID-19 so we managed to raise thousands of pounds to put towards this treatment.
In February 2020 he started the drug at the Royal Marsden Hospital. He was only put down for about six sessions initially but then he had a scan and it showed the treatment was really working to shrink the tumour, so they wanted to keep him on it.
“It was absolutely amazing, and there were no horrible side effects either.”
By the December, another scan revealed the tumour had stabilised, so his consultant was happy for him to come off the drug. Mike continued to have stable scans over the next few months.
Then in April 2021 I was running my hands through his hair, it was long because all the barbers were still shut, and felt a massive lump on the back of his head. He said he thought he’d bumped his head but I knew it wasn’t right. It was on his scar tissue and I thought the tumour had come back, but I didn’t want to worry him. We agreed to wait a couple of days, to see if the ‘bump’ went down. When it didn’t, he went to the doctors. I couldn’t go in with him because of COVID-19. When he came out, he told me the doctor said it was just a cyst, but I was still dubious.
He had a routine scan booked in with the Royal Marsden two weeks later anyway so I thought at least if it is more sinister we’ll know very soon. Sure enough, the consultant rang after that scan to say the tumour was back.
“Where he’d previously had surgery and the bone hadn’t fused back together properly, part of the tumour had seeped out through his skull and started growing on the outside of his skull.”
It was actually quite fascinating and in some ways it was great, because if that tumour had grown that much inside his skull it may have already killed him. The fact so much of the tumour was on the outside gave him about 16 more months of life.
However, the neurosurgeon didn’t want to risk another operation to remove the tumour because he said if he did Mike would go blind. Instead, they started Mike on the Avastin again, as well as a course of radiotherapy. The radiotherapy causes swelling, but the Avastin is an anti-inflammatory, so it counteracted that and the treatments worked incredibly together. We were so relieved when the tumour began to shrink again.
Doctors continued to monitor him closely though, because he still had a lump on the back of his head. With how thin the skin there was, if it was to break there was a high risk of infection directly into the brain.
“It felt like one thing after another, constant highs and lows, but Mike refused to let all the uncertainty over his tumour ever stop us from living our lives.”
I hate when people say he ‘fought cancer’, because he didn’t, he had to learn to live with it - and he did that amazingly well. He was brave and positive, he went to work every day and got on with life. He refused to crumble, he wanted to live. He never let it get in the way of us doing anything, in fact COVID-19 and all the restrictions stopped us doing more than his tumour ever did.
It was always Mike’s dream to have a baby, and later that year we became pregnant. He was over the moon, the news brought us so much joy. On 6 March 2022 Edison was born, Mike chose his name and he absolutely adored him. We felt complete.
The tumour continued to shrink and later that month Mike had his best scan to date, with dead cells showing as well as the shrinkage. Everything was looking up and we were so hopeful and happy.
However, all that came crashing down just a few weeks later when a routine scan in April revealed the tumour had grown again. It was unbelievable. His consultant said his tumour was stubborn, problematic and behaving unusually. He suggested we should all take a step back and decide what to do next.
“It was devastating, at the time we also both had Covid and a new baby. It was so much to take in.”
We were paying for Avastin privately and had spent about £80,000 on it by this point. But it was no longer benefitting him, so we agreed he should come off the drug. There was talk of palliative care but I just thought, ‘no, he keeps overcoming all these set-backs and he’ll do the same again, he’ll keep going’.
Then in May the skin started to split at the back of Mike’s head and he had an open wound, which is what all the doctors were really worried about. A plastic surgeon said he could remove the lump from the outside and stitch it up but Mike said he didn’t want to go through that with the tumour still inside, he wanted one big operation to remove as much of it all as possible.
The neurosurgeon had been against operating because of how Mike’s quality of life would deteriorate if he was blind. But by this point it was likely Mike would go blind anyway from the growth and position of the tumour, his eyesight was already deteriorating, so the surgeon agreed to look at doing another operation.
The surgery took about five weeks to plan, so while we were waiting we went to Brighton for the weekend. He wasn’t right though, he was doing strange things like opening the car bonnet instead of the door, and said he felt really out of sorts.
The next morning, I looked over at him and he just didn’t look well. I said ‘let’s go home’ but he didn’t want to spoil the weekend. He always put a brave face on things but I knew for sure something wasn’t right with him so we left.
“I took his temperature and it was really high, then I checked his head and the wound was oozing, and it smelt.”
I wanted to take him straight to the local hospital St Peter’s in Chertsey but he really didn’t want to go, he said he would give it one more night and see how he felt. Stupidly I agreed, but the next morning I looked at him and just thought, ‘no that’s enough I’m getting you to hospital’.
We were told he had an infection on the surface of his skin, and I asked them to speak to his consultant at St George’s in London. They kept him in overnight because they needed to get his heart rate down, and in the early hours of the morning I got a call from him saying they were blue lighting him to St George’s, but he didn’t know why. I met Mike there and spoke to his neurosurgeon who said it wasn’t a surface infection, it was inside the brain.
“Looking back now, I feel like they knew then that he was going to die but they didn’t say anything to us.”
He spent about eight weeks in hospital and had procedures to drain puss from his brain. Sometimes he looked great, sometimes he looked awful.
The week before he died he was complaining of excruciating pain. He was not one to complain at all, so I know it must have been awful. Considering the painkillers he was on, it just didn’t seem right for him to be in so much agony with just an infection. I kept raising it with his doctors, who put it down to the infection. I kept pushing and a few days later they agreed to take him for an emergency MRI scan.
“Afterwards, I was sat with Mike holding his hands, when his lips went blue and foam gathered in his mouth. He looked dead.”
I quickly put my hand on his chest and couldn’t feel him breathing so I pressed the emergency button and called for help. They tried to resuscitate him but he didn’t wake up. They just about got him onto life-support so the rest of his family could come and say goodbye.
It happened so fast, we hadn’t even had the results back from the MRI. The doctor came to see me a few hours later and it turned out his tumour had almost tripled in size.
“The pressure of it had pushed part of his brain down into his neck.”
So when he was complaining of pain he really was in absolute agony. It wasn’t just an infection; it must have been unbearable. That was so awful to hear, it was heartbreaking knowing he was in that state. They hadn’t scanned him for three weeks while they were dealing with the infection and in that time the tumour had got out of control.
I discussed options with the consultant. They said Mike probably wouldn’t survive another surgery, and if he did it may only give him a few weeks. It seemed the kindest way for him to go was to just turn the machines off and give him a peaceful death. We did that, and he passed away on 10 July, with his family by his side. He was only 33.
I can’t express just how positive Mike was. Right up to the end he didn’t want to be treated anything other than normally, as a person not a patient. He was always laughing, he lit up every room and was the life and soul of every party. He was the most amazing husband, dad, son, brother and friend.
“He touched so many people’s lives and will continue to be loved and remembered by everybody who knew him.”
When I tell people about what happened to Mike, and how common brain tumours are, they are always so shocked. I can’t believe how little funding goes to brain tumours when they’re the number one cancer killer of people under 40; or wrap my head around why treatments like Avastin aren’t available on the NHS. It’s all so wrong.
Mike’s friends are running the TCS London Marathon in April for Brain Tumour Research in Mike’s memory and I think it’s amazing. His sister Emily is also taking on the Jump for Hope skydive in June. I’m so glad they want to help other people with brain tumours. They did so much for Mike when he was alive to fundraise for the Avastin. I’m so glad they still want to make a difference even though Mike isn’t here. They just really want to help and it’s so lovely.
I believe a person only really dies when the last person living stops talking about them. We miss Mike so much but we talk about him every day and that’s how we keep his memory alive.
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.
If you have been touched by Mike’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure