A father-of-three with an incurable brain tumour who has just a year to live hopes this Father’s Day won’t be his last as he tries his best to make memories with his family.
Robin Elcock, from Bristol, and his wife Aimee, 36, are all too aware that Sunday, which is Robin’s 37th birthday, could also be his last ever Father’s Day, so they hope to make it extra special.
Earlier this year the father-of-three was given the bombshell news that a recurrent brain tumour means his cancer is now incurable, with a prognosis of just 12-18 months.
But he and wife Aimee are determined to make every day count and are refusing to give up easily, as they are currently fundraising for potentially life-extending therapy in Germany.
Having gone through two massive craniotomy operations to open his skull and remove the tumours, 18 rounds of high-strength chemo, and 52 rounds of radiotherapy, Robin and Aimee say their cancer journey has taught them to ‘grab life with both hands, while you can’.
Robin Elcock, from Bristol, has been told his brain tumour is incurable and has been given a prognosis of just 12 months- he’s hoping this Father’s Day won’t be his last
Farm-worker Robin said: ‘When I say I’ve got to see this as my last Father’s Day, I’m not looking for pity or a hug of condolence, I mean I want me and my family to have the best day ever.’
‘Every year we give our kids a ‘Yes Day’ when we can’t say no to their requests for fun, and this is the same – if I get to live to the next Father’s Day, and the next, that’s great, but for now, let’s just enjoy ourselves!’
‘Even before my cancer our mantra was always to live life, but this just crystallises things. I see the coincidence of Father’s Day also being my birthday as a sign to throw any caution to the wind and have the best day ever.’
Father to Katie, 16, George, 14, and Arthur, nine, Robin first’s inkling anything might be wrong was in 2016 while on a caravan holiday with Aimee and their three small children.
Robin collapsed and fainted in the toilet block, regaining consciousness an hour later. The next day he started vomiting, so booked in to see their GP.
‘I was referred to the Royal United Hospital in Bath, but all they said was I’d probably just had a migraine, did some ECG and heart monitor tests, and sent me home,’ he said.
It was 18 months later in January 2018 while out training with Aimee for the Bath Half Marathon that Robin suffered his first massive seizure.
Aimee said: ‘It was terrifying, it came literally out of nowhere. Looking back, Robin’s memory had become unusually bad and he’d been suffering headaches, but that was it.’
Robin and his wife Aimee, 36, are all too aware Sunday, which is Robin’s 37th birthday, could also be his last ever Father’s Day, so they hope to make it extra special
Earlier this year the father-of-three was given the bombshell news that a recurrent brain tumour means his cancer is now incurable, with a prognosis of just 12-18 months
Dad to Katie, 16, George, 14, and Arthur, 9, Robin first’s inkling anything might be wrong was in 2016 while on a caravan holiday with Aimee and their three small children
Robin collapsed and fainted in the toilet block, regaining consciousness an hour later. The next day he started vomiting, so booked in to see their GP
Robin and wife Aimee are determined to make every day count and are refusing to give up easily, as they are currently fundraising for potentially life-extending therapy in Germany
At the RUH, scans showed a mass in his brain, so Robin was blue lighted to Southmead Hospital in Bristol where further scans indicated the mass was likely a tumour.
‘The surgeon was very calm and relaxed about it, saying he expected the tumour to be cut out and that would be it,’ said Aimee. ‘He expected it would be grade 1, but if it was ‘a bit funky’ Robin might need some chemo and radiotherapy.’
Robin had that nine-hour craniotomy operation on 22nd January, removing a 7cm tumour.
Because of the sheer size of the tumour, as they removed it Robin’s brain collapsed and he suffered a massive cardiac arrest, requiring CPR. Robin pulled through, but because of these complications, it took him much longer than expected to recover.
Robin needed physiotherapy to help him learn to walk again and occupational therapy to help him dress and wash himself.
‘Any massive brain operation is obviously really risky, and I was so relieved to finally be left with no side-effects and the tumour seemingly having been fully removed,’ Robin said. ‘I could walk and talk fine, my speech and memory seemed ok, it was such a relief.’
Robin had that nine-hour craniotomy operation on 22nd January, removing a 7cm tumour
At the RUH, scans showed a mass in his brain, so Robin was blue lighted to Southmead Hospital in Bristol where further scans indicated the mass was likely a tumour
Robin at work as a farmer before his cancer diagnosis
Robin needed physiotherapy to help him learn to walk again and occupational therapy to help him dress and wash himself
But when he and Aimee met a different surgeon for the biopsy results just over a week later, their future suddenly seemed much less rosy.
‘The doctor bluntly said: ”We’ve given you 10 years!” with a smile on his face,’ Aimee said.
‘Robin and I felt like we’d been hit by a truck! The surgeon asked how old our kids were, and then said: ”You’ll get to see your eldest grow up, then, so that’s good news’.’
‘It was then that we realised that 10 years is about as good as it gets for a brain tumour, the surgeon was genuinely relaying what he thought was something positive in a terrible situation.’
Those biopsy results showed the tumour had actually been a grade 2 astrocytoma, a rare but aggressive mass which doctors described to them as like having tentacles going down into the brain – making it exceptionally hard to treat and almost impossible to completely eradicate.
Told to ‘watch and wait’, Robin’s care was then transferred back to the RUH in Bath. There they met a new oncologist, who asked if they wanted Robin to undergo preventative therapy to minimise the chance of the cancer returning.
With their children then just 10, eight and three, the parents knew they had to do everything possible to maximise Robin’s chances of survival.
That January Robin started 42 rounds of radiotherapy, followed by a brief family holiday away to Cyprus, then 10 rounds of chemotherapy, finishing, finally, in January 2020.
‘We threw everything we could at the cancer to stop it coming back, and genuinely thought we’d dodged a bullet,’ said Robin.
Robin had scans every six months, then every three, and the cancer seemed to have been stabilised but after ‘four quiet years’, in April last year, their worst fears came true and it was growing back
That six hour operation removed as much of the tumour as possible, but because of the invasive nature of the tumour Robin then started two rounds of chemotherapy, followed by six rounds of radiotherapy, which finished mid-April
Every so often the parents give their children a ‘yes day’ were they can’t say no to anything for the day
Robin started 42 rounds of radiotherapy, followed by a brief family holiday away to Cyprus, then 10 rounds of chemotherapy, finishing, finally, in January 2020
‘I had scans every six months, then every three, and the cancer seemed to have been stabilised. I went back to work at the farm, I even got my driving license back, and it was very easy to completely forget I’d had cancer.’
But after ‘four quiet years’, in April last year, their worst fears came true. A routine scan showed the tumour was growing back. Straight away Robin started six cycles of chemotherapy.
At first, doctors thought the chemo was having an effect, slowing the tumour’s spread and growth, but by that autumn they were told it had become ‘high grade’, the worst news.
Given radiotherapy, scans showed the tumour was now too big and aggressive, so on 14th December he underwent a second craniotomy at Southmead Hospital.
‘With the first tumour we hadn’t mentioned the ‘C word’ to our kids, just that daddy had a lump in his head and doctors were helping, but by the second tumour they were too old to not see something was seriously wrong,’ said Robin.
‘We wanted them to know everything this time – Katie was about to have her GCSE exams, and we knew my cancer along with her grandad also being terminally sick with another type of cancer might affect her concentration but George was relentlessly positive, telling me he was sure I’d be fine and the tumour would be gone forever.’
‘We just didn’t know what was going to happen, but having them onboard with us was so important.’
That six hour operation removed as much of the tumour as possible, but because of the invasive nature of the tumour Robin then started two rounds of chemotherapy, followed by six rounds of radiotherapy, which finished mid-April.
Having gone through two massive craniotomy operations to open his skull and remove the tumours, 18 rounds of high-strength chemo, and 52 rounds of radiotherapy, Robin and Aimee say their cancer journey has taught them to ‘grab life with both hands, while you can’
With the first tumour they hadn’t mentioned cancer to the kids, just saying that ‘daddy had a lump in his head and doctors were helping’
Aimee read online about a new, cutting edge treatment called Dendritic Cell (DC) therapy, making a vaccine out of the patient’s own blood and immune-boosting dendritic cells
Aimee quickly realised the new treatment which is carried out LDG Laboratories in Berg, just outside Munich, would be an expensive option so she started a GoFundMe
Robin’s already done most of the things on his wish-list – flying in a helicopter, (pictured) and seeing Coldplay at Wembley
The couple started ticking off items on Robin’s bucket list, such as taking a hot air balloon ride
The family know Robin could likely need further rounds to keep the tumour at bay and give them a chance of enjoying Father’s Day together in 2025
Setting a target of £60,000 to cover those costs as well as travel and accommodation, their GoFundMe has so raised the impressive total of £54,000 so far
‘We know this time it’s incurable, with a prognosis of just 12-18 months, but like most people I had to make sure there weren’t any other options,’ said Aimee.
It was then that she read online about a new, cutting edge treatment called Dendritic Cell (DC) therapy, making a vaccine out of the patient’s own blood and immune-boosting dendritic cells. This bespoke vaccine is then re-injected back in to attack the cancer.
Carried out LDG Laboratories in Berg, just outside Munich, Aimee quickly realised this would be an expensive option.
‘It’s £15,000 for each round, and we’d probably need at least three rounds, but we spoke to several people online who’d had the same cancer as Robin and seen great results, so I knew we had to give it a go,’ she said.
Setting a target of £60,000 to cover those costs as well as travel and accommodation, their GoFundMe has so raised the impressive total of £54,000 – but the family know Robin could likely need further rounds to keep the tumour at bay and give them a chance of enjoying Father’s Day together in 2025.
Now being treated at the Bristol Royal Infirmary, Aimee says their consultant is ‘fully supportive’ of their plan.
‘They know the only other option is death, and have even given us advice on what medication to take to maximise the chances of it working,’ said Aimee.
‘It might be 50-50 in improving Robin’s prognosis, but without that, we have nothing, this will likely be his last birthday and Father’s Day.’
‘But we are always staying positive, and as a family will make sure that whatever happens, we will create some amazing memories on the way.’
‘For the kids’ ‘Yes Day’ we all went go-karting, swimming and then enjoyed a delicious dinner at The Bull Pub in Hinton, our favourite place in the world.
We’ll likely be doing more of the same for Father’s Day, maybe with a few surprises thrown in by the kids.
‘Robin’s already done most of the things on his wish-list – flying in a helicopter, hot air balloon rides, seeing Coldplay at Wembley – so it’s hard to think of things, but we’ll make sure it’s a day none of us will ever forget.’
To donate and support Robin raise money for his treatment, go to: www.gofundme.com/f/help-robin-fight-incurable-brain-cancer