Brain tumour aftermath: ‘I was in complete shock for a whole year as one thing after another happened to me’

Two photographs of Clare O’Connor and her partner Derek Walsh on hiking trips sit on the shelves of their home near Rosslare, Co Wexford, as stark reminders of their active life before O’Connor was diagnosed with a brain tumour in January 2022.

Sitting with them at their kitchen table, we are surrounded by mobility aids that 46-year-old Clare uses daily to help her move around the house and take short walks in the housing estate where they live. Her formerly preferred pursuits – swimming, running, hiking and cycling – seem like a distant memory.

Clare had been getting ready to go out to her full-time job at the Eoin O’Connor Gallery in Gorey, Co Wexford, when she suddenly turned around and went back into the house and slumped in a chair.

“I knew something was amiss but I couldn’t explain it. I felt dazed and nauseous with a very strong feeling of deja vu,” she explains. Her GP advised that she go to a hospital emergency department, but after some inconclusive blood tests, she was sent home. A few days later, she felt unwell again with similar symptoms. Her eldest daughter drove her back to the same Dublin hospital, where she was taken in for several tests and scans.

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One week after her first experience, she was told two abnormalities on the brain had been discovered. Thereafter began two weeks of tests to see whether these abnormalities resulted from a tumour in another part of the body (secondaries or metastases), or whether the brain was the primary area of concern. During this time, Clare was transferred to Beaumont Hospital, where she was given a diagnosis of glioblastoma multiforme brain tumour on the right temporal lobe of the brain. This is the most common form of brain tumour.

[ Life after cancer: ‘Every day I was saying I should be back to normal, and I wasn’t’ ]

“I had a craniotomy during which the neurosurgeon removed 50 per cent of the tumour. The strange thing is that, after the operation, I woke up fresh as a daisy, feeling like nothing had happened when I had expected to be badgered with severe headaches,” she explains.

Looking back now, Clare realises that she had experienced morning headaches for a few months before her first “out of body” experience. “I felt like I had a hangover every morning going to work. I would need two coffees to get me going,” she says.

Four days after her surgery, Clare was sent home, but asked to return to the hospital five days later to plan further treatment. Thereafter followed seven weeks of radiotherapy and chemotherapy at St Luke’s Hospital in Dublin, during which time Clare and Derek stayed in accommodation in the grounds of the hospital. She was given more medications to take when she got home. This whole period coincided with the latter stages of the Covid-19 pandemic, making contact with family very restrictive.

“It was two to three weeks later that I was floored with tiredness. I was pinned to the bed. I felt the weakest that I’ve ever felt in my body,” explains Clare.

I never had the second surgery and I decided I wouldn’t have any more chemotherapy after I reacted to the second medication

—  Clare O'Connor

A scan seven months after the initial diagnosis revealed that the tumour was growing again. A second operation was scheduled to go ahead in November 2022, but it never did. “I was very stressed about the surgery, even though I was well prepared. The neurosurgeon decided not to go ahead with it,” she explains. The fact that one month earlier a blood clot in her lung was discovered following very severe chest pain might have influenced this decision.

Back home for Christmas, Clare began to suffer a lot of pain in her lower back. This time, her doctor sent her to Wexford General Hospital where a small fracture in her back was identified. Transferred to University Hospital Waterford for further tests and more medication, she arrived home just in time for Christmas.

On December 28th, 2022, she returned to Beaumont Hospital to begin treatment with a different oncology medication. Within days her legs became very swollen and she was treated in Wexford General Hospital, and a hospital-grade bed was installed in her home for her comfort.

In January 2023, she was taken by ambulance to Wexford General Hospital, where she was diagnosed with pneumonia. “It was horrific. I could barely move. I felt like a pig on a spit. Every hour, the nurses had to turn me over.”

She remained in hospital until the end of February.

Looking back now, Clare, who has the help of carers on weekday mornings and evenings, feels like much of what she has experienced are complications of illness and treatments. “I feel like I was in complete shock for a whole year, as one thing after another happened to me. I never had the second surgery and I decided I wouldn’t have any more chemotherapy after I reacted to the second medication.”

Recent scans have shown no further growth in the tumour, but Clare remains on several medications to stabilise her condition. She had a second bout of pneumonia last August, which knocked her back further. Since her first operation, she has put on more than 18kg (40lb).

Meanwhile, her partner has stayed by her side throughout this nightmare experience. “I felt like I had to try to stay positive for everyone,” says Derek, who worked from home for the seven months and is now taking some time out from his job.

They have been very loving, caring and supportive. They have had to do things for me that you would never expect a daughter would have to do for a mother of my age

—  Clare O'Connor

Stephen MacNally, a neurosurgeon at Beaumont Hospital, says there has been a rise in brain tumours – both of those originating in the brain, and those metastasising (spreading) to the brain from other parts of the body. “This is due both to population increase and people living longer, as well as better treatments for primary cancers [breast, cervical, colorectal, ovarian, etc] which has resulted in people living longer with these original cancers for secondary brain tumours to arise,” he explains.

Standard treatment involves removal of as much of the tumour as possible, combined with six weeks of radiotherapy and oral chemotherapy. “Oral chemotherapy drugs are then given for six months as part of this world standard protocol treatment,” says MacNally. “Fifty per cent of patients make it to two years, but the outcomes are worst for those over 65 or over 70,” he says starkly.

For Clare and Derek, life continues at a slow pace. “I feel like I moved from someone with a very active, busy life to someone who isn’t able to do anything for myself. It has been very upsetting, but I have had to come to terms with it,” says Clare.

She is very grateful for the support from her partner, her parents and her three adult daughters who she says, “had to grow up overnight and do everything for themselves”.

“I’m extremely proud of them. They have been very loving, caring and supportive. They have had to do things for me that you would never expect a daughter would have to do for a mother of my age.”

She has received counselling, and attends online support groups linked to Brain Tumour Ireland. “It’s good to hear other people’s stories and where they are at. It’s different for everyone.”

International Brain Tumour week runs from October 28th until November 4th, and Brain Tumour Ireland will hold a webinar on Tuesday, October 31st at 6.30pm. Speakers include Conor O’Donohoe, a member of the band Wild Youth.

O’Donohoe’s mother Jackie died from a brain tumour in 2011 when he was aged 17. On Wednesday, November 1st, at 6.30pm, researchers will discuss ongoing work to identify new treatments for glioblastoma at an event (also online) in the Royal College of Surgeons of Ireland.

Meanwhile, Clare is finding it beneficial to write about her experiences in a journal. “My message to other people is that while it is very hard to adapt to change, it’s best not to look at the bigger picture.

“Take one day at a time and accept any support you are given.”