My husband Owain is 34. He’s a football-loving plumber from Caerphilly and together we have a little girl who is 18 months old. In September 2022, out of the blue, Owain was diagnosed with a incurable Grade 4 brain tumour and we were told that if no action was taken, he would have a few months left to live.
At that moment, our lives were turned upside down and we made a promise to each other that we would do anything and everything to have as much time together as we could.
We have gone with everything the NHS has to offer. An incredible team of surgeons at the University Hospital of Wales have removed as much of the tumour as they could without impairing Owain. The course of radiotherapy he is having is using the full amount of radiation one person can have in their lifetime and chemo-wise, he is on the most suitable NHS-approved drug. We are desperate for more time with Owain and there are additional treatments out there that would give us more time, but sadly, they are not available on the NHS.
We have done our research, liaised with our Oncologist and there is hope. Immunotherapy (DC Vax) is a viable option for Owain. It has just completed the phase 3 trial and the clinical evidence shows some really promising results, but it comes at a very high cost. Essentially, a biopsy sample is taken and a vaccine is produced for Owain, specifically to fit his unique tumour. Then his body takes over and fights the cancer itself. The cost of manufacturing the vaccine is £200,000, with additional medical expenses on top.
Optune is also a viable treatment, and available to people in Owain’s situation, in both Germany and the US, but sadly, the NHS does not see it as cost effective. It works in a similar way to radiotherapy, but uses electromagnetic waves to target the tumour. We have an appointment to speak to someone about how much this would cost for Owain, so all we know at the moment is that it’s approximately £20,000 a month.
Brain tumours are the biggest cause of cancer deaths in the under 40’s as there are such limited treatment options available. Not only do we want to have Owain for as long as we possibly can, we also want to make the case for why immunotherapy and Optune should be more readily available in the UK. It may not be deemed as cost effective for the NHS, but to us, he means everything.
Any donation you can make – no matter how small – will get us one step closer to these additional treatments for Owain. Every day is so precious to us, we just really hope we can have more.
Since we got married on 8 October, I've called upon family, friends and the community to donate, fundraise and spread the word about Owain. I am so grateful for the support we have received so far but we need so much more.
Thank you from the bottom of our hearts for taking the time to read this.