Richard Orna, 37, was diagnosed with a glioblastoma (GBM) in December 2022, following agonising headaches which left him incapacitated. After exhausting the NHS standard of care including surgery, radiotherapy and chemotherapy, Richard and his wife, Maja, began to research other options. Through his health insurance the Bristol-based managing director acquired a £250,000 Tumour Treating Fields device. He is also under the care of a private oncologist in London, who is offering alternative therapies including repurposed drugs and cannabis oil. Richard is now fundraising to pay for immunotherapy treatment in Germany.
Richard tells his story…
In November 2022, out of the blue, I started getting very bad headaches. I didn’t know what it was, but a colleague said I should get my eyes tested. I booked in for a test, but before that the migraines got much worse, to the point where I was completely struck down with them. One day I was on all fours, unable to think or function. I was also very nauseous, basically hugging the toilet, and feeling really peculiar, all the while with this terrible pain in my head.
My wife, Maja, and I tried 111 and our GP, and basically just said ‘help us’. But we got the impression they didn’t really have a protocol for dealing with this type of thing. In hindsight, I feel that’s a massive oversight, and anybody calling with extreme, frequent, or debilitating headaches should be considered as having a possible brain tumour. But just they didn’t seem to know what to do.
“It was so painful that I had a really strong feeling something very serious was wrong, and I was keen to have a scan.”
So, in early December we decided to go to A&E at Southmead Hospital Bristol. I told them how extreme the pain was and fortunately they took it seriously. They did a CT straight away, and saw a mass immediately, so I was sent for an MRI. At that point they said this was likely to be a malignant glioma. They told us about glioblastoma (GBM) and the treatment protocol, which was chemotherapy and radiotherapy. That wasn’t the best news, and it didn’t fill us with hope.
“They didn’t offer a prognosis at this point, and I was too terrified to ask.”
Thankfully some of my family, my brother, sister, and my wife, were there to hold my hand. It was incredibly difficult news to hear, and I imagine they were on the internet straight afterwards, reading some awful stuff they will never forget. From the start we’ve being tackling this as a team, which is I think the best way to deal with something like this, and we’ve been supporting each other as best we can.
I do think ‘hat’s off’ to Southmead though, they got straight to action. The lead surgeon was phenomenal. He dragged his team in on a Sunday to do a de-bulking surgery straight away. It took about nine hours, and they removed about 95% of the tumour. They were just a wonderful team, but sadly it was confirmed to be a GBM.
Unfortunately, I did go on to have another three surgeries during December, because I developed hydrocephalus - a build-up of fluid on the brain. I had a few false dawns with surgery; I had two shunts fitted either side of my brain but then needed more surgery to correct them because they became blocked. For so long it felt like the pain was never going to end, but once I had the shunts cleaned up and corrected, the pain cleared. It felt like a whole new world.
“It was extraordinarily life changing; the pain had taken over everything, so for it to be gone was momentous.”
Then I started radiotherapy for six weeks from December. I remember when it started and I was just lying on a table, I thought ‘oh is this all it is?’ but it was only down the line that the side effects really hit. Funnily enough, it felt like somebody had been zapping my brain with radiation. It was the most awful experience of my life, and I felt utterly brain dead. It was my last session on Valentine’s Day 2023, and I had also been taking oral chemotherapy at the same time.
Around mid-April I had a scan at Bristol Haematology and Oncology Centre and the whole experience was really negative. The team got my results through and one of them sat my wife down and started talking to her about end-of-life care, which was a massive shock. I felt it was grossly inappropriate, but I guess people all deal with pressurised situations differently.
Then my oncologist said ‘the chemo isn’t working, so we’re going to stop it’. Maja and I both said ‘what?’ – if anything we needed to do more of it, surely.
“We both panicked and felt like they were about to send me home to die.”
It transpired the oncologist wanted to move me onto a stronger chemotherapy, which makes perfect sense, and actually that’s a fairly positive message – there was more to be done to treat me. However, it was all just very bizarrely communicated.
Maja and I have always carved our own path with this. My wife is the most unbelievable person on the planet and did so much research from day one of the diagnosis. We sought out other things to give me a better chance, rather than just what is currently on offer from the NHS. With a terminal condition you must act quickly, and with as much efficacy as possible. There’s no time to hang around. I feel the NHS has a very relaxed position with such an aggressive brain cancer.
Fortunately, I have private medical insurance through work and I was able to access an Optune, or Tumour Treating Fields device. It’s something you wear on your head for at least 18 hours a day, and it uses electric fields to disrupt cell division in cancerous cells, resulting in cell death. They have been shown to be effective for solid type tumours, including glioblastoma, and can help to prolong life by another five months, on average.
However, when I brought it up with my Bristol oncologist he completely dismissed it. He said it had too great of an impact on quality of life, because patients have to shave their heads, wear it most of the day, and carry its battery around with them. At that point Maja and I looked at each other in disbelief, and pulled faces. When the alternative is a sad death, I don’t consider any of those things a hardship.
“I’d do anything, I’d wear anything on my head, I’d shave whatever, to have five more minutes with my wife. I’d do anything.”
I don’t know if NHS staff are told not to talk about other treatments, which aren’t available on the NHS, but it baffles me how dismissive he was about something which could give a person more time. He also said it was expensive, which I imagine is the main barrier. These devices are about £250,000 each. It was a very special day in the Orna household when the insurers confirmed they would cover it. We were doing a little jig to that news. We are enormously grateful to my employer for that, I’ve been using it two months now and it’s potentially extending my life.
I felt I wasn’t getting the support I needed from my oncologist, so on 22nd April I saw a private oncologist through my health insurance. Dr Matthew Williams at Imperial College London now leads on my treatment, and what a wonderful human being he is. He has completely changed our lives. He was balanced but positive and put me on a new combination chemo of temozolomide and lomustine. He’s very open to clinical trials and trying things – especially when the alternative is not good. He also set up a more comprehensive treatment plan, including repurposed medications and prescribed cannabis oil with tetrahydrocannabinol (THC).
I’m having scans every three months, and we’re also now looking at the dendritic cell vaccine. There is a company in the UK, Advent, which does it and we put forward a case to my insurers for that too, but they won’t cover it as it’s an experimental treatment.
However, we have started a fundraising page to try to get the money together to start this immunotherapy abroad, which will cost at least £250,000. Preparations are underway and I’ve been out to Cologne in Germany for some preliminary treatment. They’ve done a range of blood tests and a liquid biopsy to ensure I’m suitable for it, which I am. I’ve also had some heat treatments - localised hyperthermia. I’m just waiting for chemo to finish, and to get the money together to start the vaccine. Hopefully I can begin the treatment towards the end of the year. I’ve jokingly been saying that could be my Christmas present.
I’m shocked and disappointed with how little investment there is in brain tumours, both in research and treatments. So I’m now campaigning alongside the charity Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, in the hope of prompting a parliamentary debate.
I think the petition is a wonderful idea, and certainly the way to get change is to go down the political route. I’ve spoken to my MP, Jack Lopresti, to try to put additional pressure on. He didn’t seem too familiar about brain tumour issues, but he was certainly interested, and I was very impressed. He seems like a good guy and really keen to help bring about change, support research investment, and look at other treatment options which could eventually be available on the NHS.
I feel Brain Tumour Research is doing phenomenal things and I want to help people in whatever way I can. When you’re fighting something like this, you really do need a supportive team around you. It’s impossible to shift through all the data and options out there on our own.
We’ve been through a tricky time, but I’m actually very lucky because of my supportive family. I have an amazing wife; we still laugh and giggle and have fun, it’s not all doom and gloom. That’s what’s getting us through.
Richard Orna
September 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Richard’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
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