Before anyone used words like glioblastoma, terminal, incurable or treatment pathway, Louise was simply Louise: working, helping, living, and trying to rebuild her life after years of illness had already taken so much from her.

She worked as an NHS Operating Department Practitioner, part of the surgical world most people never see: the rooms, the preparation, the pressure, the handovers, and the moments when a patient is frightened but the team around them must remain calm.

Throughout COVID, Louise was ever-present, wearing PPE and a face shield and helping others through one of the most frightening periods the NHS has ever faced.

This campaign is not about a statistic. It is about a woman who worked, loved, laughed, looked after others, and deserved the chance to get her life back.

Long before her brain tumour, Louise had already been forced into frightening medical territory. In 2019, she was diagnosed with an 8.5 cm ovarian cyst after a period of fear and uncertainty, including the possibility that it might be cancer.

Keyhole surgery was planned, but the surgeons discovered that the endometriosis was far more extensive than expected and could not continue as intended. A major laparotomy — open abdominal surgery — was required.

During the operation, several affected areas were removed, including her appendix, omentum and reproductive tissue damaged by the disease. It was major surgery, followed by another difficult recovery, and Louise once again had to fight hard to regain her health.

In 2022, Louise faced another major operation. Her bowel was found to be twisted and severely affected, resulting in a bowel resection. By the time 2025 arrived, she had already endured years of illness, pain and recovery.

Graphic medical image — click to view

In April 2025, an abdominal MRI showed that the endometriosis had returned, alongside adenomyosis. After everything Louise had already been through, it was another cruel blow.

Louise did not collapse into defeat. She did what she had always done: she pushed back. Determined to take control of what she could, she began eating more healthily, returned to the gym and used her bike wherever possible — rebuilding her strength, restoring her confidence and trying to feel like herself again.

For a brief moment, it felt like she might finally be moving forward.

Then, only two months later, the headaches started.

On 4 August 2025, Louise underwent brain surgery. It is impossible to explain what that kind of day feels like unless you have lived it: the waiting, the fear, the hope, the silence, the desperate need for news.

Louise came through surgery. But the family was still waiting for the full truth.

On 15 August 2025, the devastating diagnosis arrived: glioblastoma, stage 4 brain cancer. The words no cure and terminal did not just describe a disease. They landed in the middle of ordinary lives and changed everything.

This was not the end of the fight. It was the start of a new one.

Graphic medical image — click to view

Louise began the standard NHS first-line treatment pathway. Chemoradiotherapy — radiotherapy given alongside chemotherapy — started on 17 September 2025, followed by a break and then maintenance temozolomide (TMZ), the chemotherapy drug routinely used in glioblastoma treatment.

But glioblastoma is not a diagnosis where families can comfortably sit back and wait. It can return at any time. Every month matters. Every MRI matters. Every delay can close a door.

The family quickly discovered that not every hospital has the same systems in place. Louise's hospital did not keep frozen tumour tissue and did not provide the broader genomic testing available in some other centres. Other hospitals in the country can store tissue differently and offer different testing routes. That reality creates a postcode lottery at exactly the moment families most need clarity.

Owain's Law is campaigning to change this. The petition calls for consistent standards so brain tumour tissue is stored correctly and patients are not denied opportunities for advanced testing, research or personalised treatment because of where their surgery took place. Read and support the Owain's Law petition.

Going beyond the NHS pathway was not about rejecting NHS care. It was about trying to keep Louise ready for every possible opportunity while there was still no visible regrowth and while she was well enough to act.

After surgery and chemoradiotherapy, we had to decide what could be done next while Louise was on maintenance temozolomide.

Hyperthermia — treatment using carefully controlled heat with the aim of making tumour cells more vulnerable to chemotherapy — was not chosen because it was easy. It was chosen because it was one of the few options that could realistically be integrated alongside monthly TMZ, had a scientific rationale in glioblastoma and could be delivered under the supervision of Professor Paul Mulholland, one of the UK's leading neuro-oncologists.

That mattered. This was not a random private treatment chosen from fear. It was a reasoned decision based on timing, evidence, expert involvement and Louise's position at that point in the pathway.

It meant travelling backwards and forwards to London every month. It meant treatment sessions, hotels, transport, fatigue and cost. The full hyperthermia phase, with travel, came to around £30,000.

Germany was not a holiday. It was not luxury medical tourism. It was what happened when we realised that if Louise was going to access personalised options, we had to move quickly.

Every piece of research pointed toward the same practical reality: with personalised vaccine approaches, timing matters. The best opportunity is likely when there is no visible regrowth and low tumour burden.

So while hyperthermia and maintenance TMZ were happening, tumour sample was sent to Germany for whole-exome sequencing and personalised analysis through CeGaT.

The first trips to Tübingen were exhausting, frightening and hopeful all at once. The first vaccine marked the start of that personalised treatment phase. The seventh vaccine showed how far Louise had already come. Now, on 21 July 2026, she has received her eighth personalised vaccine. This is not a one-stop treatment: it is an evolving journey of repeated travel, monitoring, research and decisions, with Louise still pushing forward at every stage.

This is the emotional reality that is hardest to explain from the outside.

Life becomes measured in scans. Every two months, everything tightens again. You wait for the MRI. You wait for the report. You wait for the phone call. You try to live normally while knowing one sentence could change every plan.

Relief is temporary. Fear returns. Then the cycle starts again.

That is why the campaign cannot simply stop because one stage of treatment has been completed. With glioblastoma, the fight is not one event. It is ongoing readiness.

If the next MRI changes, we need to be able to pounce. Not research for months. Not wait for a funding target to crawl forward. Not lose time to hesitation. We need to be ready to act when the opportunity appears.