A school-based youth worker from Llanelli in Carmarthenshire is raising money for Brain Tumour Research, in support of her 21-year-old son, who is living with a brain tumour.
Mum-of-three Michelle Griffiths, 45, is taking on the 10,000 Steps a Day in February Challenge to raise vital funds for the charity. It’s after her son James Griffiths, a mechanical engineer, was diagnosed with a grade 3 oligodendroglioma in November 2020, after suffering seizures over several months.
James with his sister Lucy.
Michelle, who also has a 24-year-old daughter and 13-year-old son, said: “James is really into his mountain biking and motocross. He was doing a competition one day in July 2019 when he fell and took a bump to the left side of his head. He had been wearing his helmet and felt OK, so decided not to go to hospital. Then, a few weeks later he was complaining of headaches and he was feeling more tired than usual. We wondered if it was the after-effects of his accident. I also noticed a slight change in his mood but it was nothing to write home about.
“Then, in December 2019, he was at work when all of a sudden he was unable to speak. He went to his GP, who said because James was young and healthy, there wasn’t much cause for concern but he was referred to the epilepsy clinic at Prince Philip Hospital for a head scan. We came away feeling reassured.”
James’ headaches and tiredness continued and months later he was still waiting for his referral when, in August 2020, he suffered a major seizure on a day out with friends in Mumbles in Swansea Bay.
Michelle, who works at St John Lloyd Catholic School in Llanelli, said: “I got a phone call to say James was at Morriston Hospital in Swansea. He’d collapsed and hurt his arm. His friends said he’d bitten his tongue and was frothing at the mouth. It was really scary.
“When James came round, he couldn’t remember anything. They took some details and referred him to the neurology department and he was sent home. I couldn’t help thinking that because of his age and the fact he’d been enjoying a day out with his mates, they were dismissing him as being drunk or drugged. That just wasn’t the case and he and I knew something was wrong.”
A couple of days later James had another seizure and his dad, Gerard Griffiths, took him back to Morriston Hospital. James had an MRI scan and was told it was all-clear.
Michelle added: “Rather than relief, James came away feeling that nobody was listening. He was convinced there was something in his head but the fact they’d found nothing was a mystery. Meanwhile, he went back to work, which involved driving and using heavy machinery. With hindsight, it was so dangerous.”
James had another seizure in September 2020, when he was in the bathroom at his dad’s house. Gerard found him collapsed in the shower, paralysed on one side and covered in vomit, so he took him straight to Prince Philip Hospital. Frustratingly, James was checked over and sent home with paracetamol.
A few weeks later, James had a call from consultant neurologist Professor Powell at Morriston Hospital, to tell him that they had, in actual fact, found some swelling on his brain.
Michelle said: “After the phone call James couldn’t recall much of the conversation, so I rang and asked to speak to somebody. The following day, I got a call from a different doctor to tell me that James had been diagnosed with a large tumour on the left side of his brain. At that point, my world fell apart.”
James was put on steroids to reduce the swelling in his brain, while he waited for his case to be discussed by the multi-disciplinary team (MDT) in Cardiff.
Michelle said: “In the meantime, James’ sister Lucy took him back to Prince Philip Hospital, where the doctors explained more about the tumour, showing them the scan images and confirming its exact size and location. I was extremely grateful for that and then they quickly got the ball rolling for the MDT meeting.
“After that we had a video call with consultant neurosurgeon Kathrin Whitehouse, who talked us through the next steps. The way she dealt with James was amazing, putting him at ease. I felt confident putting all my trust in her.”
On 20 November 2020, James had a six-hour craniotomy at University Hospital of Wales in Cardiff. His surgeon was able to remove 80% of the tumour and a sample was sent away for a biopsy, which revealed it was a grade 3, meaning he would need further cancer treatment.
Michelle said: “James has nearly finished a 6.5-week course of radiotherapy at Singleton Hospital in Swansea, which has made him feel really tired and sick. He is having a week’s break before he starts a 12-month course of chemotherapy, to try to shrink the remainder of the tumour.
“It’s been particularly tough for him to deal with, as the COVID-19 restrictions mean he can’t see his friends in between treatment. He has also had to surrender his driving licence, which has been really hard for someone who usually loves driving.”
Inspired by James, Michelle and Lucy are joining thousands of other fundraisers around the country by putting her best foot forward in February, to part in a 10,000 Steps a Day in February Challenge, to raise money for Brain Tumour Research.
Steps can be completed however and with whoever participants like, ensuring they follow COVID-19 safety guidelines. Whether it’s heading to the local park to enjoy some fresh air, discovering a new running route every day or staying at home and completing the challenge around the house or garden, the possibilities are endless. Registrants can step out on their own, with members of their household or support bubble – whichever suits them best.
Michelle said: “I think in this kind of situation you either sink or swim and I have decided to try to do the latter and do something positive. You never think this will happen to you but it has and I’m having to deal with it and try to accept it. I’ve been able to do that thanks to the incredible support of Lucy, Gerard and all James’ family and friends.
“Through James’ diagnosis I was shocked to discover that brain tumours kill more children and adults under the age of 40 than any other cancer, yet historically just 1% of the national spend on cancer research has been allocated to this devastating disease. I’ve joined the 10,000 Steps a Day in February Facebook group and have been inspired reading other people’s stories. Before our own experience, I didn’t realise just how many people are affected by this awful disease. I hope by sharing my story, I can encourage other people to recognise the early signs of a brain tumour and to push back if they’re not happy with a doctor’s assessment.”
“James is amazing, taking it all in his stride and staying optimistic. He is my motivation and I want to make him proud.”
Joe Woollcott, community development manager at Brain Tumour Research, said: “We were so sorry to learn about James’ diagnosis and wish him all the very best with the next stage of his treatment. Our thoughts are with him, Michelle and the whole family.
“What Michelle and Lucy doing in support of their loved one is really inspirational and will be with them every step of the way, helping to get us closer to a cure. James’ story reminds us that brain tumours are indiscriminate; they can affect anyone at any age. We are determined to continue in our mission to find a cure for this terrible disease, to help prevent families like the Griffiths from dealing with this devastating diagnosis.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
To donate to Brain Tumour Research via Michelle’s fundraising page, visit: https://www.facebook.com/donate/407939230416154/