In August 2023, our lives took an unexpected turn. On a Thursday evening, Samuel’s hand slipped off the steering wheel while driving. He mentioned it had happened before, but he’d managed to put it back and carry on. By Friday evening, he couldn’t lift a spoon to his mouth, and by Saturday the GP sent him to A&E, suspecting a stroke. He was placed on blood thinners straight away and a scan seemed to confirm the stroke diagnosis. But by then, his hand wasn’t working at all, and he was admitted to the stroke ward.

On Sunday, an MRI told a different story – it wasn’t a stroke, but a tumour. From there, everything moved very quickly. Our son and nephew stepped in, and thankfully Samuel had private health insurance. By Wednesday, he was in London for a PET scan, and on Thursday we met the incredible surgeon who told us he’d operate the very next day.

The surgery went ahead, and Samuel spent a week in hospital receiving intensive therapy for his hand and arm. The staff were just amazing. After that, we met an oncologist who recommended radiation and temozolomide, but said Samuel wouldn’t qualify for the Optune trial.

That’s when we were referred to Dr. Williams – something we remain endlessly grateful for. Dr. Williams recommended radiation, lomustine and TMZ together and in January 2024, Samuel began wearing Optune.

Sue, our Optune nurse, has been with us every step of the way. She’s incredibly helpful and patient, and we appreciated her introducing us to the documentary Rare Enough – we found it very inspiring. Those first few weeks were tough. Samuel’s skin became extremely sore from the arrays and he stopped wearing the device for a while, convinced it wasn’t going to work for him. But then we saw Dr. Borysiewicz, who helped us find the right creams and lotions. Since then, things have gone much more smoothly.

Has it been easy? Not completely. The machine can be heavy to carry, and the headgear can get itchy, but Samuel returned to teaching just three months after surgery, still on chemo and wearing Optune. His pupils, in true childlike fashion, have taken it all in their stride. While he’s reduced his teaching hours due to fatigue, he still teaches daily, studies, and handles his usual routine – with an added knack for battery management and making sure everything is charged and ready.

Tips for others using Optune

✅ The beginning is always the hardest. Give yourself 2-3 months to truly get used to Optune – it does take time, but eventually, it becomes part of daily life. Initially, changing the arrays could take over an hour, but now, after 15 months, we’ve managed to cut it down to 20–30 minutes.

✅ We’ve learned to adapt. For example, the white netting that holds the arrays in place felt too “bandage-like,” especially for the classroom. On Sue’s advice, we dye it a skin tone using tea bags – and it works really well. In the summer months, when it’s warmer, we change the arrays 4-5 times a week, but in colder weather it’s usually 2-3 times.

✅ At night, Samuel uses a cooling pillow and ceiling fan, which help keep his head from overheating.

✅ Travelling with Optune seemed overwhelming at first. I remember when Sue showed us the suitcase designed to carry the equipment, we wondered how we’d ever manage. But we have – on many occasions – and we’re quite used to it now. Like that old White Horse Whiskey ad said, “You can take a White Horse anywhere” – we’ve realised you can take Optune just about anywhere too.

Support from family, friends and the Optune community

We couldn’t have done this without the support of our children, who have stepped in and helped wherever needed. Because of Samuel’s weaker hand, I take care of the array changes, but we’re never alone in this.

The Optune Support Group has been an incredible resource. We’ve learned so much from others’ experiences and found comfort and hope in the stories shared. It’s heartening to hear good things happening within this community.

Our wider circle of friends and community have also been wonderfully supportive. Most of them know what the device is by now, and when we travel, we’re happy to explain it again when needed.

Final thoughts

Looking back, it’s been a journey filled with uncertainty, learning and growth. We’re immensely thankful to Dr. Williams, Dr. Borysiewicz, Sue, and everyone who has supported us – from medical professionals to our family and friends.

Optune hasn’t been the easiest adjustment, but it’s become a part of our lives – and a part we’re grateful for. If you have the opportunity to use Optune, we would definitely encourage you to give it a real try. Allow yourself those first few months to adjust and you might be surprised how capable you become.

Thank you to Hannah for sharing their story.