This week is Brain Tumour Awareness week. Hat maker Lina Stein tells us about her experience of diagnosis and recovery from a brain tumour and how it has inspired her work
Brain tumours are not something we generally think about until they are diagnosed — then we can’t think about anything else. Around 400 people in Ireland are diagnosed with a brain tumour each year, of which there are 120 different types and carry a startling array of names — astrocytomas, craniopharyngioma, medulloblastoma, subependymoma.
Five years ago, hat maker Lina Stein — originally from Sydney and now a long-term resident of Westport, Co Mayo — suffered from a brain tumour called a meningioma. She made a full recovery and is now involved in Brain Tumour Awareness Week (October 30 to November 6) which includes the annual Wear A Hat Day national fundraiser on November 5.
Lina was inspired to create a series of hats based on her experience, a collection she named Brainwaves. She has donated one of her designs to the fundraiser, which will run in conjunction with a medical research conference at Beaumont Hospital, as well as a Hats Off To You themed initiative called Hats Off Heroes. This offers those affected by brain tumours a chance to nominate someone who helped them, with Brain Tumour Ireland thanking them on their behalf.
Lina tells me about her experience, which began in 2016. “It happened on September 18, on a Sunday,” she says. “I was giving a hat making workshop in my studio, a one to one, when I had a seizure. I remember nothing. I was taken to A&E in Castlebar and after a scan that showed up something large, I was sent to Beaumont Hospital.” She was placed under the care of neurologist Stephen McNally, and later neuropsychologist Mark Mulrooney. Her brain tumour was a whopper — 6cm by 6cm, in her left hemisphere behind her eye.
“I had to cancel work obligations and call my mother in Australia and say, ‘hello, mum, I’ve got a brain tumour’,” she adds. “My old life felt like a boat that I could see sailing off without me. I was on a new boat, one that I could not control. I couldn’t fight it. Yet I had no sense of panic.
“I took control of my healing by taking photographs of my medical records, so that I could see how I was progressing. I haven’t got much memory of my stay at Beaumont, but I was lucky that I didn’t feel too much fear. There was a one-week wait before surgery, where I was treated with steroids to shrink the tumour. It was in the brain lining, but I wasn’t bedridden. I was walking around buying coffee and newspapers and being visited by family and friends. I also had a day release. It felt mad. Quite a mad situation. Very surreal.
“I’d had no physical symptoms prior to the seizure, apart from every now and then there would be a tingling feeling and I would forget a word and be unable to get it out. I learned how to mumble my way around this. I was 49 and thought it was connected with menopause. I was going to get a brain scan done privately, but didn’t bother in the end — and then I had the seizure.
“I had surgery on October 4 and the tumour was successfully removed. I was in hospital for just over a week and then sent back to hospital in Castlebar to heal — I was lucky that I had a lot of allies and support. My mother is a psychologist, she came over from Australia and gave me a diary and pen to keep an account of my recovery.” Lina was also supported by her daughters, Nora and Sadhbh.
“I had high sensitivity to noise and to smell, and I slept a lot. I was advised to focus on nothing except getting better slowly. And to touch my head every day and acknowledge the scarring and swelling, although I didn’t look in the mirror for quite some time because I was black and blue. It was a big shock for my family.
“I did make a full recovery. After a while I could walk, talk and move properly. I had some psychotherapy, too, because I had PTSD, and did exercises and crosswords to help my brain recover. Initially I had huge mood swings, panic attacks, screaming fits, even the theme tune of Coronation Street stuck in my head. I’d be manically happy, then my mood would drop, and sometimes even talking would be difficult.
“I learned to acknowledge how everything is legitimate — angry, happy, sad, scared, they are all valid. I always knew I would come out of it, even though sometimes the misery felt comforting, like a duvet. Recovery took a long time and I couldn’t do much, but with good allies you can do anything — like weaning myself off tramadol. You don’t need painkillers because your brain doesn’t have nerve endings, but I still have numbness and tension when I’m stressed. It never really leaves you. And Mayo was a blackspot in terms of assisting anyone with brain injury.”
Instead, she attended rehabilitation sessions with Quest, the Galway-based service for people with acquired brain injury. And now Lina’s doing a hat making workshop for the medical professionals who helped her through her recovery. “It will be lighthearted and not too technical,” she says. “It comes from my desire to give something back. I will also be judging Wear A Hat Day and offering a prize to the hat that shouts the loudest. I’m ready.”
This will take place on November 5, where people are invited to pop on a favourite hat and post a selfie to Facebook, Instagram or Twitter — using #WearAHatDay — and text BTI to 50300 to donate €4 to Brain Tumour Ireland.
This will go towards funding the work of Brain Tumour Ireland, which was set up in 2012 to provide information, support and resources, not just for people diagnosed with brain tumours, but for those around them who also need care and support.
Dr Hany El Naggar, a consultant neurologist at Beaumont Hospital, reminds us that brain tumours are a broad spectrum condition. “The brain is a vast organ,” he says. “The clinical picture will entirely depend on the location of the tumour.” For instance, a large tumour in the frontal lobe could produce very few symptoms, while a far smaller tumour in the brain stem could carry a far worse prognosis.
“There are two factors in regard to outcome,” he says. “The location of the tumour in the brain and the results of tissue analysis. Lots of people make a full recovery from brain tumours after surgery and possibly radiotherapy. However, I’m not downplaying its seriousness — it’s a heterogeneous illness.”
Dr El Naggar outlines some basic symptoms which should trigger you to seek help. “Gradual, progressive headaches which worsen over time are an alarming sign,” he says. “And headaches which worsen when you sneeze or lean forward, which could suggest increased intracranial pressure.”
In other words, something pressing against the inside of your head. “Also, new onset seizures — for someone who has never had epilepsy, this could be a tell-tale sign of a suspected brain tumour,” he says. “Or out-of-the-blue loss of sensory power, loss of balance, weakness in one half of the body (although this is also connected with stroke), and visual field defect — if you’re driving and you suddenly can only see half of the road.”
If you encounter any of these symptoms, it’s worth getting things checked out. It’s probably nothing — remember, the overall brain tumour figures in Ireland are low at 400 diagnoses annually — but early diagnosis has a profound affect on overall outcome. Don’t hesitate if you are worried.
Friday November 5 is the annual Wear A Hat Day when people across the country are invited to put on their favourite hat, take a selfie, post it on Facebook, Twitter or Instagram using #WearAHatDay and then text BTI to 50300 to donate €4 to Brain Tumour Ireland. The best selfie will win a Lina Stein-designed hat, with Lina herself choosing the winner