This Giving Tuesday – a global event that aims to celebrate and encourage generosity in all its forms – Andy Tudor, 60, from Waterlooville in Hampshire, tells us about the myriad ways in which he’s giving back to the brain tumour community after receiving his own life-altering diagnosis…
When I received my brain tumour diagnosis in January 2017, I was thrust into a world I knew nothing about. I’d been suffering from mild headaches, flashing lights, tiredness and weakness in my left leg for six months. I’d occasionally take the wrong turn while out driving or walking, too. But I’d simply put the symptoms down to growing older.
When the headaches intensified and I began vomiting uncontrollably one evening after work, I was rushed to hospital. There, a scan revealed that I had a large grade-2 meningioma.
Steroids helped to stabilise the tumour and during a six-hour operation a month later, the surgeon was able to remove it completely. But life – and my approach to it – had altered irrevocably.
Today, I still live with the impact of my brain tumour. Extreme fatigue, ongoing headaches, continual tinnitus and occasional issues with spatial awareness are just some of the daily challenges. But I’ve learned ways to manage it. And, thankfully, my wife, Jane, and three grown-up children – Ben, 30, Owen, 28, and Ellen, 25 – are very supportive and endlessly patient (I can be grumpy, too!).
In January 2022, a routine scan detected a second meningioma, this time successfully treated with radiotherapy. It was another reminder that I’m one of the lucky ones. It’s that thought that has driven me in the volunteering work I’ve taken on since my original diagnosis.
I feel a sense of obligation to be a voice for those who no longer have one. And since taking early retirement at 55 due to the overwhelming fatigue, it’s helped to give me a sense of purpose. I’ve had some truly amazing experiences I wouldn’t have otherwise had.
Because of this, recently my daughter asked: “Dad, are you pleased you had your brain tumour?” It was a strange question, and my initial answer was “No!”, not least because of the trauma it has put my family through. But reflecting later, I realised my answer was a bit more nuanced than that. On good days, when the after-effects are under control, I’m so glad of the opportunities it has opened for me.
The medical help I received during my treatment was excellent, but once I returned home, I found there was little support for my mental health.
Luckily, I found hope online, joining several closed Facebook groups for people who had experienced brain tumours. These little communities became a lifeline when I needed it most.
So, when the opportunity presented itself to become an Online Peer Supporter for The Brain Tumour Charity, responding to others seeking help, I jumped at the chance to give back. Eventually, I became an Involvement Champion. I was asked to advise on online articles, help launch a new strategy and create a podcast that is now on Spotify – which suddenly made me cool in the eyes of my kids!
When you’re told that you have a brain tumour, your life flashes before you. You want to leave a legacy. To have people tell me that the podcasts I’ve created have helped them has given me that. It’s something I would have loved to have had access to when I was diagnosed.
As a result of all this, in 2023 I received an award for the charity’s Volunteer of the Year. It felt amazing to get suited and booted and take my family to London for the event, knowing I’d made them proud. And it was validation that I was making a difference. I was also shortlisted in the charity industry’s Third Sector Awards in the volunteer’s section, for which I was Highly Commended.
In addition, I’ve offered Peer Support for brainstrust, a charity which provides support, information and advocacy for people living with a brain tumour and their carers. Patients can look through profiles and reach out for support from someone they feel a connection with, be it that they’re a similar age or from a similar background. It’s a bit like Tinder for brain tumour patients! They’re then put in touch.
It’s a small thing, but people are really appreciative. One young lad reached out recently feeling anxious, having been told that although his brain tumour had been successfully removed, his life expectancy was now lower. We chatted and I told him that it was just a matter of probability; by having been through this, he would probably now eat better, exercise more, and live a healthier life, negating the negative impact of the lifestyle he might have otherwise had! He said it was just what he needed to hear.
Since having my second brain tumour, I’ve become heavily involved with Radiotherapy UK, too. There, I’m part of a Patient Engagement Group, helping to write and provide a voiceover for patient videos, advising the charity on what patients want to hear and how they want to hear it. I’m proud of my involvement. The UK is severely lagging in its radiotherapy treatment pathway compared with other comparable countries.
I ended up speaking at the All-Party Parliamentary Group for Radiotherapy (APPGRT) at the Houses of Parliament about my experience of brain tumour treatment.
There, I met someone who works for Brainlab, the company that produces the radiotherapy equipment used to treat my own tumour. I was invited to visit the headquarters, and Jane and I were flown out to Munich, where we were treated like royalty.
Radiotherapy UK has recently extended its Board of Trustees and I’m now a member, helping to drive forward cancer treatment. I never imagined for a moment I’d become a trustee. Or lobby the Houses of Parliament. Or co-host a podcast, for that matter. Many people choose to help drive change in the brain tumour community by taking part in fundraising challenges, and I’ve done a few of these too. But there are people that are much better at that than me – this is my way of giving back.
My hope for the future is that I stay healthy enough to keep helping. When someone gives you that feedback, ‘That really helped’, during the worse time of their life, there’s no better feeling.
Oh, and it would be great to be a little less grumpy for my family, too!
If you’ve been inspired by Andy, there are so many ways to get involved. Help change the story for brain tumour patients and find out more about donating, fundraising, or campaigning for our cause here.
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