Iorwerth (‘Yog’) was diagnosed with an apple-sized brain tumour in 2012, after doctors initially mistook his symptoms for migraine. In October 2022, he took to the roads of London as part of Team #BrainResearch, and has kindly agreed to share his story.
Around mid-summer 2011 I started to get prolonged dull headaches. It wasn’t a major concern at the time, just annoying and inconvenient. As the autumn dragged on I started to get more intense headaches, feeling particularly unwell. I did eventually go to the doctors, but they were convinced I was suffering from migraines and should just take higher doses of pain-killers. Even when describing my symptoms and the doctor describing classic migraine symptoms, there were obvious discrepancies.
In the spring of the following year, and following several other visits to the doctor, I started to keep a basic diary of symptoms to inform the doctors. By now I was having quite severe episodes that caused early morning vomiting and particularly painful headaches. In spite of my diary, the doctors were still convinced it was migraines, even though I had never suffered from them previously.
During this time, my memory was getting progressively worse and I was exceptionally tired. This led to me being much more grumpy than normal, which was not a great thing for my close family who were forced to live with me. My memory started to affect my speech as I would lose track of what I was saying half way through sentences and sometimes just stop, then have to be reminded about what we were discussing. As I’m sure you can imagine this was frustrating, but probably more annoying for those having to put up with me!
Diagnosis and treatment
Eventually, after keeping my symptoms hidden from wider family members, my sister cottoned on to the problem when I started to feel ill during a car journey together. As an ex-nurse, her medical training, and obvious knowledge of me, piqued her attention and without me knowing she booked me in for an emergency appointment with a private specialist. In spite of the specialist also believing my problems to be migraine-related, my sister insisted on an immediate MRI scan and the rest, as they say, is history. I had a Meningioma tumour that was roughly the size of an apple, so wasn’t difficult to see on the scan!
Within hours the NHS machine kicked into action and my case was given urgent status. Within ten days I had further MRI scans, and a craniotomy to remove the tumour. This was followed by a short spell in hospital, before being let out early to be cared for by my sister (initially) and then partner.
During this time my daughter was just five, so we were keen to keep as much of this away from her, but when I had to go into hospital we had to be honest and also try to play down the risks. Initially we called my tumour my brain baby, but continued scans have revealed that I now have two new brain babies. Treated by two further operations, these are currently not growing or causing me any obvious problems. Whether the naming of the tumour/s has helped or not, is up for debate, but not getting hung up on something that ultimately you have no personal control over and rely on the skills and generosity of others to solve, does help give perspective.
One of the most unexpected problems of my treatment was the obvious impact upon my appearance. Having half of my hair shaved off and a huge scar, meant my daughter’s friends were quite frightened and couldn’t cope with my new ‘look’. So wearing a hat most of the day became the obvious solution. I’m still not completely sure what my daughter was thinking at the time, but the calm persona of my partner (now wife) obviously helped as she never really showed any outward signs of concern. You have to be honest with children, but there is a fine line between keeping them informed and telling them too much.
Giving something back
I was extremely lucky in the end and ran the Cardiff half marathon the year after my op to raise additional funds for the neurological department at Derriford Hospital Plymouth. My way of saying thank you.
The work of Brain Research UK and the practitioners in the various specialist neurological hubs around the UK is amazing and saves lives on a daily basis. As I approach fifty and have just marked the tenth anniversary of my craniotomy, I felt it was fitting to try and contribute more to the cause.
All the money going into further research has the potential to improve our understanding of what is essentially a massively complicated bit of biological machinery. Without the continued research we cannot make further strides forward that will help others be diagnosed earlier and have better and better treatments available.
Funding research into brain tumours
Brain tumours kill more people under the age of 40 than any other cancer, yet research into brain tumours is underfunded relative to research into many other cancers. This is reflected in the lack of progress in treating these tumours and the continued poor prognosis for patients.
This is why we are focusing our research funding on brain tumours as one of our three priority research areas. We want to improve the outlook for people with brain tumours by funding research that takes forward our understanding of the mechanisms underlying tumour development, and helps develop better ways to diagnose and treat these tumours so that people like Yog have the best possible outlook.