Robin Elcock from South Gloucestershire was just 30 when he suffered a tonic-clonic seizure that led to the discovery of a 7cm brain tumour. Determined to return to the life he loved, the father-of-three went back to work as a farmer within weeks of a gruelling 13-hour brain surgery. Over the next seven years, he faced multiple recurrences, three major surgeries, radiotherapy, chemotherapy, and even travelled to Germany for immunotherapy.
Sadly, Robin died at home aged 37 on 13 January 2025, exactly seven years to the day of his initial diagnosis.
Here is Robin’s story, as told by his wife Aimee…
Robin was the healthiest man I knew. He worked 70-hour weeks on the farm, was up at three in the morning on the tractor and never stopped. We have three children Katie 17, George 15, and Arthur 10. Life was busy but good.
Looking back, the only signs that something might have been wrong was Robin’s bouts of anxiety. We put them down to work stress because, after all, farming is full-on.
On 13 January 2018 everything changed. We were about to go for a run when Robin said he wasn’t feeling himself. I brought him a glass of water, turned around, and he fell sideways, smashing his head on the tiles before going into a full tonic-clonic seizure.
I can still hear the sound of his head hitting the tiles on the floor.
I froze; it was like time stopped. By the time the ambulance arrived, he was semi-conscious, groggy, and acting as if he were drunk. Within an hour he was more alert, but he had no idea what had happened.
Robin was taken to the Royal United Hospital in Bath. We didn't think it was anything serious and had plans that night to meet friends for dinner and Robin was adamant that we would still make it. But then the consultant came into the room with a nurse carrying a box of tissues.
My stomach dropped. She told us there was a large mass on Robin’s brain. We were dumbstruck. Robin just said, “But I’m only 30”.
It was the worst and most awful moment of our lives.
Robin was transferred to Southmead Hospital in Bristol. The MRI confirmed a seven-centimetre grade 2 diffuse astrocytoma. We honestly thought that they would remove it, zap it with radiotherapy and chemo, and Robin would be fine. The neurosurgeon warned us there could be serious side effects to surgery, such as cognitive loss, seizures, and even death, but the tumour was so big that surgery was urgent.
They kept Robin in hospital for a week on steroids to shrink the swelling, then sent him home briefly before the operation. I drove him back on the Sunday night. The next morning, Monday 22 January 2018 he went into theatre for a 13-hour craniotomy.
It was the longest day of my life. At 7pm we finally got a call from him. When we saw him in intensive care, his head was fully bandaged, but they’d managed to remove all of the tumour. He was complaining of a sore head, but doctors were really pleased with the surgery, so I went home and planned to be back in the morning.
In the early hours of the morning, the hospital phoned. Robin had gone into cardiac arrest due to a haemorrhage and was back in surgery. They fitted a shunt to drain fluid and performed CPR, breaking his ribs.
I was horrified, everything seemed ok when I left him, and the surgeons were happy with the results. I was confused as to what went wrong.
I went back to the hospital and when I saw him, he was confused and thought he still needed to go into surgery again. Robin had to relearn how to walk, his brain knew how, but his legs wouldn’t respond. It was so frustrating for him, a week earlier we’d been running together; now he couldn’t walk to the toilet. Our lives had taken a complete turn for the worst.
By the end of January, he was home. Robin couldn't walk so it was very scary, and I was worried how I would be able to care for him but thankfully the occupational therapists came every other day. But sadly, Robin had to relinquish his driving licence. Robin was a true petrolhead, so losing his driving licence hit him hard. He had a deep love for cars and tractors, especially the brand-new tractor he’d just bought. Watching everyone else drive it while he couldn’t was incredibly frustrating. Determined not to be left behind, he set his sights on getting his licence back.
Within five weeks, he was back on the farm part-time and within two months, he was full-time and even doing overtime on the job he loved. Being productive, earning money, providing for the family, that’s who Robin was. Brain tumours can strip your sense of purpose from you so being back at work was really good for his mental health.
In a follow-up appointment, Robin asked to stop his anti-seizure medication so he could drive again. After consideration, the doctor agreed, and the medication was discontinued. In July Robin had another full tonic-clonic seizure, and his anti-seizure medication had to be reinstated.
By December 2018, Robin’s care was transferred to Royal United Hospital in Bath. The consultant recommended radiotherapy and PCV chemotherapy to reduce the risk of the tumour growing back. Before starting in May 2019, we decided to take the kids with my parents on a holiday to Cyprus, it was the best trip, full of memories.
Robin had 42 sessions of radiotherapy and six cycles of PCV chemo. He worked through all of it, only taking the day off from work for treatment. He found taking the tablets difficult and he felt sick just looking at them. I think it was psychological.
Robin got his driving licence back, he was so pleased and bought himself a new car and was back on his tractor, the weeks and months seemed to sail by. We were living our best lives thinking the worst was behind us and we were looking ahead. The routine MRI scan at Bath every 12 weeks became part of life. However, early in 2023, a scan showed a small change. We weren't given many options by the neurosurgeon, so we decided to watch and wait.
Then the doctor strangely asked the ages of our children, and said at least Robin would live to see the eldest grow up. We looked at each other, stunned. That was when we realised this was terminal.
We were told that Robin had 10 years life expectancy. It felt surreal, we were shocked into silence. We were so naive, we thought they got all the tumour out, now all it would take is treatment and recovery and we would carry on with the rest of our lives. We were gravely wrong.
Sometimes we’d talk frankly about what might happen, other times we lived in denial. It was like living with a ticking time bomb.
Robin chose to start temozolomide chemotherapy, being the farmer he is, he said: “It’s like a weed, better to get them before the roots grow”. He did well in treatment, he didn't stop work and he carried on. He wouldn't let it defeat or define him, that is who Robin was.
Before he started treatment, we decided to take the kids on holiday to Rhodes, we had an amazing time and created so many lovely memories. For a short unforgettable while we were able to forget what we were facing and just live.
In October 2023, following a routine scan, a new high-grade astrocytoma was found in a different location. Robin was angry, because he’d done everything he’d been told to do, and it had still come back.
We were both devastated and shocked, but Robin refused to let it beat him, he was a fighter. We knew what it meant, and we knew what had to be done.
On 14 December 2023, two days before Katie’s 16th birthday, Robin had a second craniotomy at Southmead Hospital in Bristol which took six hours. The wait was excruciating; this time I went home and kept the kids off school. I scrubbed the house within an inch of its life to stay focussed and busy, waiting for the call.
The tumour was smaller, but the surgery affected his reading, writing, and cognitive skills. He switched to voice notes instead of texts, which I now treasure, I have kept them all and still listen to his voice and the quirky way he would pronounce certain words.
We went back to Bristol for a follow up appointment on 20 December2023. That was when the doctors told us what we feared the most, that pathology confirmed a grade 4 astrocytoma.
When they told us the second tumour was more serious, it was like having the air knocked out of me. We’d been through so much already, and I’d convinced myself we could keep it at bay. But hearing it was now high grade felt like the ground shifted beneath us.
I knew Robin understood exactly what it meant. That day, it hit me that our time together might be much shorter than we’d imagined. I could see Robin was declining, out of desperation we sought alternative treatment.
Robin started chemotherapy, which hit him hard. Then in April, he had 10 sessions of low-dose radiotherapy, which helped for a while. But Robin was growing weaker. During a trip to The Forest of Dean with friends he was so weak and said he just felt like he was in trouble. When I think back to the amount of radiotherapy sessions and other treatments he had up to that point his immune system was just depleted. He was so broken, but even when he struggled, he never complained. He was still going to work and, looking back now, I have no idea how he managed it, but he loved his job so much to him it wasn't work.
We were beginning to feel desperate and realised that we were making no headway so we began exploring every option and left no stone unturned. We went to a private clinic in London and investigated DC Vax immunotherapy which would have cost £200,000. Unfortunately, when we contacted Southmead where Robin had his surgery, we found out his original tumour tissue hadn’t been stored in the right way and the majority of it was not saved. Only a small amount was flash frozen meaning we had nothing to work with. That knowledge could have changed everything. We were deeply disappointed and felt angry and crushed.
We then investigated immunotherapy in Germany which cost £15,000, so we decided to fundraise. With help from the farming community, including a tractor run with over 100 tractors, we raised £60,000 for the treatment, this was more than enough to fund three sessions of therapy and cover our expenses. Suddenly there was hope.
It is awful that people in the UK have to fund their own treatment and go abroad for better options. It’s not a position we thought we would ever find ourselves in.
We were preparing to go to Germany and were excited at the prospect of treatment. Robin called me from work and said he was feeling hot and wasn't feeling right. So, I picked him up from work and his speech wasn't coherent. As we entered our driveway Robin had a tonic-clonic seizure, but this one was worse than before. He began hallucinating and had to be restrained. He was rushed to Bath hospital by ambulance where he was monitored and eventually released.
We took our first trip to Germany in May 2024 where Robin had high dosage mineral and vitamin infusions. They then took his blood to make a vaccine immunotherapy DNA. Everything went well, Robin was feeling better, and we returned home.
Robin had another routine scan at Southmead in July which showed the tumour had shrunk, we weren't sure it was the radiotherapy or the immunotherapy, but we were pleased and really felt like we had cracked it.
We went back to Germany in the August, and this time took the kids with us and made it a holiday. Robin had his second treatment and although he wasn't feeling well, he pushed through and even joined us on a trip up the Alps in a cable cart. Germany became a special place for us with great memories.
Having lost our beloved dog Bailey, we decided to get another puppy. Robin picked a Labrador and named her Ada. She stayed by Robin’s side till the very end and was even with him when he went for routine treatments in the UK.
By November 2024 we took what would be our third and final trip to Germany. We were scheduled to go again in February, but Robin was far too weak to travel.
Robin’s headaches worsened and he needed daily nurse visits with high-dose steroids and morphine. As an end of care life nurse, I knew what I was looking at but just couldn't bring myself to accept it. Towards Christmas 2024 we were trying to get him an MRI scan to find out what was going on.
Robin said he knew he was dying. He needed to know how close he was.
The neuro nurse called to find out what his symptoms were. We were told to go through Bath A&E. Despite barely being able to walk at home, Robin somehow walked into the hospital. A CT scan revealed extensive fluid on the brain and, by that time, Robin was not able to speak.
Christmas 2024 was precious but it was overshadowed by Robin’s decline. Early January brought the news we’d been dreading, the tumour had grown significantly, causing a massive shift.
Suddenly, I was faced with the reality that I knew all along. I was going to lose Robin. It was never easy to digest, and you always hoped for the best, but this was the cold hard reality.
By mid January, Robin was mostly unresponsive, though he was still himself in flashes.
On 13 January 2025, seven years to the day from his diagnosis, he died at home, aged 37, surrounded by the love of his family and friends, with Coldplay, his favourite band playing.
Robin lost his independence, his livelihood, and his ability to do the simplest things, but never his spirit. He never gave up.
I want people to know that tumour tissue storage matters. If we’d known from day one how vital that was, maybe things could have been different.
Robin’s last gift to us was Ada, the dog he chose just before he died. Walking her has helped me through my grief. Some days I haven’t wanted to get out of bed, but she needed me, so we walked. In May, I took part in Brain Tumour Research’s 200k in May challenge and, with Ada by my side, we walked in Robin’s memory.
Aimee Elcock
August 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
