My husband was told he had a pea-sized tumour on his brain - it was so much worse

Ellie James tragically became a widow just over a year ago when her husband Owain succumbed to the brain tumour he had already beaten once before. Ellie, who is a mother to their lovely daughter Amelia, admits that without her little girl, she might not have been able to cope.

Now, driven by her daughter and a newfound mission to change the law to help others, she continues to navigate through the dark days of grief.

Owain, hailing from Caerphilly, was only 34 when a series of tests and scans revealed a tumour in his brain. Initially, the couple clung onto hope as the consultant described the tumour as "pea-sized".

However, just a few days later, they were dealt a devastating blow when a specialist consultant informed them that Owain's tumour was actually 14cm - one of the largest they'd ever seen.

In the months following Owain's diagnosis, the couple left no stone unturned. They sought additional treatments, underwent experimental procedures, travelled abroad, and even hastily planned a wedding within two weeks,reports Wales Online.

Despite their efforts, the tumour returned and Owain passed away just over a year ago.

In February 2022, Owain started experiencing mini seizures, although they didn't manifest in the way one might expect. "He just went very weird for like a few seconds and then he'd be fine again, he did that multiple times a day," Ellie explained.

Despite being incredibly fit and healthy, Owain and Ellie found themselves frequently visiting his GP. Initially, they were told it could be a heart issue, but those tests came back negative.

Ellie recalls mentioning to the GP that Owain's grandfather had passed away from a brain tumour. "I said, 'oh, you know, you hear those weird things about young 34-year-olds getting diagnosed with a brain tumour, could it be that?' and he said, no because he's not having any headaches".

The GP attributed it to anxiety, but that didn't align with his character. "Owain was the least anxious person you could meet, he was so laid back he was almost lying down and I remember saying to him, 'you must be anxious about something, tell me what it is'."

In August that year he started experiencing headaches, so returned to his GP, where he was prescribed paracetamol and sent home. But one evening his headache became so severe, he couldn't get out of bed, so Ellie took him to The Grange University Hospital and refused to leave until he had been given a brain scan.

However, the hospital's A&E became so busy, all visitors were asked to leave so Owain was alone when he was informed a tumour had been discovered.

"Owain was just completely in a daze," she said.

They were informed the tumour was malignant but pea sized. "We kind of really held on to that thinking 'it's the size of a pea, that's fine'."

They had to wait for the weekend before meeting a neurological specialist. That consultant informed them it was one of the largest tumours they'd encountered and was 14cm, not pea-sized.

Owain was devastated when he received the news, while Ellie remained strong, reassuring him that everything would be alright. "He was told he would have a few weeks to live had he done nothing, so if we had left it to the GP, he probably would've died," she revealed.

In a matter of days, Owain underwent emergency brain surgery where half the tumour was successfully removed, providing a much-needed morale boost as they felt progress was being made.

His care was subsequently transferred to Velindre, and he underwent chemotherapy and radiotherapy at the Cardiff hospital. However, the couple were adamant that they did not want a prognosis.

"That would give us the impending doom," Ellie explained. "Owain would decide when he would die. I spoke to the oncologist privately on my own and asked what would happen, was there even a tiny chance of getting rid of it? She told me it would not reduce in size, all it would do was hold it back."

When Ellie enquired if there was any hope at all that it could shrink, "she told me 'absolutely not'."

The couple then began exploring additional treatments beyond the standard ones, a decision which they felt irked the medical staff as it contradicted their advice.

Despite his condition, Owain showed no symptoms. "You would never have known he was ill. It was in the right side of brain so it didn't affect mobility, you honestly wouldn't have known there's anything wrong with them. All they said was that it would stay at 7cm until it starts to then get bigger again."

In the midst of all this, the couple, who had been together for a decade, tied the knot. Just two weeks after his diagnosis, their wedding day was largely planned by others.

They found an available venue and booked it on the spot. The bride-to-be spotted a sale dress she adored at a bridal shop and bought it immediately.

Their loved ones organised their dream day, which even included a helicopter arrival for Owain, thanks to a friend of a friend who also had a brain tumour. "It was phenomenal," she expressed.

Instead of gifts, they requested donations towards Owain's treatment, raising approximately £10,000 in their initial fundraising effort alone.

Away from the hospital, they began doing everything possible. "Owain completely changed his diet and went on a quite strict keto diet. He was taking around 100 tablets a day, a mixture of supplements and drugs that we found off label, we had appointments the whole week.

"I was injecting him with mistletoe, which boosts your immune system three times a week. He was having IV drips of vitamin C and then we found this vaccine, which basically uses your tumour tissue and mixes your tumour tissue with your dendritic cells, which is part of your immune system in a petri dish.

"It kind of educates your dendritic [immune] cells to the tumour cells and educates them that they're bad, and then when re-educated, they will then be reinjected into your body so they can find them in your system and kill them basically.

"It's a really, really clever immunotherapy but you need tumour tissue for it. We thought we had a lot of tumour tissue because Owain had had 7cm removed, but we found out when going through this process that he only had 1cm of what's called fresh frozen, the other 6cm had had a chemical put on it."

The more tissue there is, the more vaccine you can have, Ellie explained. For this one, the expectation is for six in the first year and two the years after.

Owain got three, the minimum they could do.

There was, and is, no standard conversation about tissue at the point of surgery, Ellie says. They weren't told about it and only discovered it through their own research and were, she says, discouraged from pursuing the vaccine because it is experimental.

"The problem is these brain tumour patients live on an average 12 to 15 months, so they don't have time to wait for the NHS to come through," she said, explaining why they took the approach of trying anything they could.

"I said to Owain 'I don't care if this vaccine gives you an extra week, I will sell my house to get you that extra week' Money means nothing when you're in that kind of situation."

The month following his initial three vaccines administered in February 2023, he underwent his first scan since the operation.

"The 7cm tumour that was there in September had completely gone by February, which is unheard of in brain tumours."

At that moment, determining which treatment had achieved this wasn't their primary concern - they were simply elated it had been successful.

He then enjoyed nine excellent months with a completely normal quality of life.

He could still complete a 5k run in 20 minutes and play football, his wife revealed.

"You would never have known there's anything wrong with him," Ellie said.

He underwent six additional months of chemotherapy and continued with the experimental treatment, but in December his tumour returned, detected when a shadow appeared on his three-monthly scans.

They travelled to Germany for treatment, but it proved to be an extremely aggressive tumour and by the time they arrived, it had expanded 6cm in eight weeks, so they recommended a Turkish surgeon who removed it.

They were then continuing to travel back and forth to Germany for oncolytic viral therapy.

They attempted to produce more vaccine from his tumour, but his condition declined too rapidly.

By May it had grown another 6cm, prompting another operation which saw 90% of it removed, but afterwards he was no longer the same, Ellie acknowledges.

"Within six weeks had taken over the whole left side of his brain and he died very quickly.

"I made a vow that I would stay out in Turkey to get a treatment plan, and then I would copy that treatment plan and have it done over here, so we stayed up there really until the very last minute that we could. We came home on Friday and he died on the Wednesday.

"It was horrendous. The last two weeks of his life were probably the worst. He went downhill really suddenly. It was like dementia, all in two weeks. One day he couldn't speak. The next day he couldn't walk. The next day he couldn't see. It was like sudden, daily. I do look back and think, actually, that's the way he would have wanted it. He wouldn't have wanted to have been stuck in a wheelchair for months.

"I'm pleased that he had an amazing quality of life because you do see a lot of brain tumour patients who don't. And we were really big on trying to reduce the his steroid use, which I think does impact your survival and most end stage brain tumour patients have hugely swollen faced. He looked phenomenal. I mean, I would say he looked better on his deathbed than he did when I've seen him with some hangovers.

"So I look back I think 'the doctors were wrong. What we did was the right thing to do. And who were they to tell us that we shouldn't be doing it?" Ellie acknowledges that the reality of their ordeal has only recently dawned on her.

She spearheaded the medical appointments.

"Owain didn't want to know about the tumour, so I just took over and I was I was completely his advocate. For him, that's what he needed. He needed someone to do it for him, he couldn't cope with it."

In the immediate wake of events, it was their daughter who provided her strength.

"I honestly believe if she wasn't here I wouldn't be either, but she is, so I have to get out of bed for her".

Her attention now turns to campaigning for new legislation, representing the club she never wished to join - those affected by brain tumours.

"What makes me really mad is just had we known that information about freezing chamber. I believe Owain could still be alive today had more of his tumour have been frozen he could have had more vaccine and be alive today."

She attempted to navigate the NHS complaints procedure regarding concerns she had about their treatment, but has chosen to pursue the political avenue instead, hoping to secure legal reform in Owain's memory.

Her aspiration is for Owain's law, ensuring that during surgery patients are informed about the consequences of histology and its implications, guaranteeing truly informed consent. "I also feel like any tissue that's taken out of your body, but obviously we're just talking about brain tissue in this circumstance, is yours, it belongs to you so therefore, you need to consent to what happens to it. And then the other part is the minimum amount should be used for histology, not 90% of what's there. and then the rest of it should be fresh frozen as a standard so it's preserved in the freshest way possible and you can use it then for whatever you like. So you could use it for treatment like we did or you could use it for research or more testing. It's the the patient to choose".

There isn't, she claims, any similar precedent globally, though brain tumour charities are supporting her campaign through a petition she's urging people to sign.

She has championed the cause in the Senedd, supported by her local MS Hefin David.

Yet health secretary Jeremy Miles appeared to resist the proposal.

"The introduction of a statutory requirement to fresh freeze all brain tumour tissue, in the Government's view, risks unintended consequences. Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies. Overriding that clinical discretion through legislation could compromise timely diagnosis or create conflict where tissue volume is limited, which is why the Government does not believe that the case is made for legislation," Mr Miles told the Senedd. Ellie said: "What worried me about what the health secretary said was that clinicians are there to use their discretion and by having Owain's law we're going to encourage disagreement between medics and patients.

"That's so wrong about. Using the words 'clinical discretion' in health care, I think, is scary. So one patient may have it, and another won't based on which clinical person you see and what decision they make, is so wrong."

She has been left disappointed after understanding she would be invited to meet the health secretary, that a formal meeting has been declined.

"We live in a democratic society, if I want to go out and do other stuff, I can. That's absolutely my prerogative to do that and I should be able to do that without anyone holding us back. That's just not the case in the NHS at all.

"The gold standard of treatment for brain tumours has been in place since the 90s. It's not a gold standard. and glioblastoma was found in 1926 and at the time, average survival was 12 months well, it's now 12 to 15 months average survival," she said, saying it is the cancer with the least funding, and is considered a rare cancer. "But it is actually the biggest killer of adults under 40 and children," she said.