Life after a brain tumour: ‘You think you will get back to normal – and you don’t’

“We were never told.” A sense of incredulity is audible in Daphne Cronin’s voice.

For her son Michael, now aged 23, brain injury was a result of life-saving surgery for a brain tumour at the age of 15. The cancer may have been cut out but it was several years before he and his family were to learn the hard way that there was no going back to the way things were.

“The treatment was second to none, the doctors were amazing. But nobody tells you this will cause a brain injury and this is something you will live with for the rest of your life,” says Daphne

She hesitates in saying they were "cut adrift" after Michael, the second eldest of six children, was discharged from the care of Our Lady's Children's Hospital, Crumlin, into adult services. But it's clearly how it felt.

After the trauma: ‘Don’t save me and leave me’

---

BBC criticised for failure to provide abortion advice

---

PKU: ‘At first, I thought I was the only one feeling like this’

---

On June 1st, 2011, Michael was due to give in his Junior Cert woodwork project. When he tried to get out of the car at Ardscoil Rís in Marino, he couldn't walk and, on return home, he collapsed.

"It was all very sudden – the reason for that was he had a build-up of fluid on the brain. The time from him collapsing here, getting him to hospital and being diagnosed was three hours," says Daphne sitting with Michael in the light-filled kitchen at their Drumcondra home on a recent Monday morning.

Collapsed

Michael had been having problems with headaches and dizziness, which the GP initially thought was stress-related. He was referred to a specialist who had booked him in for an MRI – due the day after he collapsed.

Within 10 days Michael had three surgeries, including removal of the tumour and the insertion of a shunt a week later because spinal fluid wasn’t draining.

“From each intervention, the brain takes up to three years recovery,” says Daphne. They know that now.

Seven weeks of intensive radiotherapy followed and then four rounds of chemotherapy over four months. “It was awful,” says Daphne simply. “Awful but brilliant treatment at the same time.”

“When you hear that phrase ‘chemotherapy’,” says Michael, “it doesn’t impact on you until you are in that position, or know somebody who is in that position. It wipes you out completely.” He lost 26 kilos.

He was in Crumlin hospital for much for that time; Daphne would go there after she got the rest of the children out to school and then her husband John, principal of Castleknock Community College, went over late afternoon, to stay until Michael was asleep.

Getting better

After the cancer treatment, the focus was very much on getting better. But in 2012, Michael’s shunt got blocked and he was back in hospital for three more surgeries. From then, “you think you are going to get back to normal – and you don’t”, says Daphne.

When Michael returned to school to start fifth year a second time, “I still was feeling I didn’t know who I was”, he says. His work wasn’t up to Leaving Certificate standard and he was often staying in bed, not wanting to go to school. However, he believes getting on to the student council for sixth year did help.

An assessment carried out by a psychologist at Beaumont concluded that the impact of the brain surgery meant he was finding it very difficult to take on and process new information. Michael "clicked" with this psychologist, who was meant to continue counselling him, Daphne recalls, but the psychologist was moved and nobody took her place.

Believing then that it was counselling Michael needed, appointments were arranged both privately and within HSE services, but they proved to be of little benefit.

Meanwhile at home, the family was struggling with a son and brother they didn’t quite recognise.

Moods

His moods were becoming a difficulty. There would be shouting, banging doors and talking to him about it just made it worse, says Daphne. “Because we didn’t have any information, we were thinking why is this happening? Why is he behaving this way? And the more we would confront it, the worse it became.”

It was a random, desperate internet search by Daphne that threw up what turned out to be a “life changer”.

"I can't remember what I put into Google but I found Acquired Brain Injury Ireland and I thought, 'oh wow'." Daphne rang the area co-ordinator that afternoon.

The co-ordinator “was the first person that understood”. She put Michael’s behaviour in context and promised that they could help. A “wonderful” counsellor was assigned to him while the family were linked in to one of their specialised social workers for support, which is ongoing.

“The person who has the brain injury is one aspect of it,” says Daphne. “The family has to relearn how to interact with this person because there are certain things that are not the same.”

Michael admits he thought going to see the ABI counsellor would be another waste of time, just retelling his story. But it wasn’t like that. “She asked the right questions, talked about the right things and did the right things with me.”

Both he and his family were helped to understand that his behaviour was a result of brain injury and given skills to cope.

Family life

This “made a huge difference to family life”, says Daphne.  “I would often say to the younger ones, if somebody didn’t have a leg, you wouldn’t say ‘run up the stairs’ because you can see that person has an injury. But because Michael has a brain injury, you can’t see it, so people just assume everything is as it should be.”

The key was “giving space”, she says. “And time,” Michael adds. He might have been in bad form for a couple of days but eventually he would process his anger. “If we had waded in and said ‘stop this nonsense’ it would have just made it worse,” she says. “It was understanding that things have changed and it’s a work in progress. To be patient.”

After doing a PLC course, Michael got a place at DCU to study international relations. Somebody from ABI Ireland who, he says wryly, “knew more than I did about me, which is a little strange”, came with him to meet the university’s access team before he started to explain what he needed, such as a little extra time for exams and assignments.

An ABI Ireland rehabilitation assistant who meets Michael twice a week is another vital support. Before he met him, Michael thought it might be “awkward”, but “I have no problem at all talking to him – it’s great. He has changed things completely.”  Like “a best friend”, he also sets goals such as setting up a credit union account and learning to drive.

Interrupted

Eight years after this all began for Michael, is life is good again? He nods: “Yeah – it could obviously get a bit better, especially from the social aspect.” But he fears there will always be certain limitations. “I don’t know if I will be able to drive and I don’t know what area of work I can go into because of my brain injury.”

But his mother is quick to point out that his formative years were interrupted; he still has time to mature and catch up on experiences. “I would say because you have come so far,” she adds, “you are capable of anything.” It’s the sort of empowering belief that all brain injury survivors need.

National Brain Awareness Week (loveyourbrain.ie), beginning on March 11th, aims to promote greater awareness and understanding of the brain and brain conditions, as well as the need for investment in services, research and prevention.For more information on brain injury rehabilitation see abiireland.ie or call 01-2804164.

Read: ‘Don’t save me and leave me’