night, it would be to spend my days in a nursing home, is still ringing in their ears.
That registrar had also told them he believed a tumour might have caused my stroke. They’d informed him I’d had a pre-melanoma removed a few weeks previously. Now they fear he has jumped to this conclusion, going straight to, ‘Oh she’s got brain cancer.’ They are far from convinced. They had already been told by another registrar, this one from the neurosurgery department, that it definitely wasn’t caused by a tumour and, in her view, I shouldn’t be operated on because of the size of the bleed and the danger it would pose to my life.
Everyone understands that the situation is evolving and the doctors don’t have clarity themselves. A decision that seems right one hour can tip the other way the next. But the lack of clear discussion and direction adds to my daughters’ load. They are trying to do the right thing, but feel confused and isolated, with so much at stake. My daughters are clever and caring girls: Emma the devoted and loving older sister, a wonderful mother to her three children. Lucinda filled with strong ideas, committed to social justice and passionately in pursuit of excellence. Known for her thoughtfulness when interviewing people less fortunate than herself for her work and academic writing, Lucinda would never have left people hanging in despair and uncertainty.
But despair and uncertainty for families is not uncommon. In her memoir of brain injury acquired as a result of a car accident, Doing up Buttons, Christine Durham explains a similar situation. Her husband had grappled with the medical information given to him about her after the accident and lamented that it remained unclear and incomprehensible throughout her entire hospital stay.
Amidst the uncertainty and lack of medical consensus, my family is most distressed by not knowing if I’m being monitored or assessed sufficiently. Is anyone discussing me at a senior level? If so, are they assessing me without presumptions as to the likely outcome? They may well be. But my family just doesn’t know. Nothing is being communicated. The lack of reassurance leaves them understandably frantic. One of my sisters, a neuropsychologist, puts it beautifully, ‘We needed to know that they had her best interests at heart. You wouldn’t hand over your child unless it’s to someone who absolutely cares, and Kathleen was like a child, totally vulnerable.’
Surgery
Head injuries do not happen to individuals,they happen to whole families. Tony Moore, author of Cry of the Damaged Man
As other family members arrive in the early morning, my daughters leave to get some rest. By now I’m very fearful, speaking in a drawl, neurologically agitated, and my movements are jerky. My left side is paralysed, but I’m still unaware of that. When, some weeks later, I’m told about it, I will deny it vigorously.
No sooner do my exhausted girls reach home than the phone rings. It is the neurosurgeon who tells them I need to be taken into surgery straight away. This is a new turn of events, and a critical one. Lucinda is told there is no choice: without surgery to reduce the swelling, I will die. They need to relieve the pressure in my brain and suck out the blood clot. Otherwise pressure will build up until my brain ‘cones’, which means it is pushed into the spinal canal as a result of insufficient room inside the skull.
Why now, they wonder? If surgery has suddenly become the best course — in fact the only course — could it also have been the best course earlier? Why was I not taken into surgery soon after arrival? Did the presumption of NFR compromise other decisions?
It’s something I still struggle with from time to time: if I had been operated on earlier, would I have more function today and saved myself so many struggles in the following years? We still don’t know. Now, of course, it is irrelevant, just part of what happened and I’m grateful for the surgery and the life it undoubtedly gave me.
But for my daughters, being asked to sign the consent for my surgery, these are heavy weights. They are in a poor state to make decisions and of course, no one is ready and in the right state of mind after an emergency. Only hours before, they’d been told quite clearly that surgery would kill me. The implications of what they’re being asked to do seem overwhelming. My sister Petrina was finding that even as a medico, it felt very confusing. She wondered if having stuck up for me at the meeting the day before had produced the situation where they said, ‘Perhaps we’d better operate.’
My daughters return to the hospital to sign the forms and discuss with the doctors what will be done if I have an adverse event during surgery. Now that the decision to operate has been made, it feels fraught with risk and deeply onerous. But they also feel that finally something is being done.
There is no opportunity for goodbyes. Sedated in readiness for the procedure, I am beyond knowing anything. My daughters kiss me, tell me how much they love me and urge me to hang on. But I look dreadful and they can hardly bear to look at me. Each says goodbye, thinking, ‘This could be it.’
Earlier that morning some members of my family had dropped in and been present when the surgeons made the decision that they needed to operate. My brother-in-law, Gordon, on his way to work, found me unconscious but not yet sedated for intubation in readiness for surgery. Realising that this meant he would need to deputise for the family, he kissed me goodbye, hoping that I would feel his love and hear his words of strength.
As the surgery progresses, many family members gather at the hospital, preparing for the worst. My parents, frail in their walking frames, wait with their four daughters as their eldest undergoes surgery. Seventeen years older than my youngest sibling, Petrina, I was always known as the daughter who could cope and manage everything. ‘If there’s a problem, Kathleen will solve it,’ my mother always said. Now I am the vulnerable one, to an extent they could never have imagined.
It is late afternoon when they hear that I’m in recovery. Riding the lift up to ICU, my daughter Emma clearly remembers the depth of her fear. She had spent the day consciously holding a candle of hope for me in her mind. Lucinda recalls being so shocked and tired by the whole event, so certain that I was going to die, that when told I was in recovery she only felt confusion. ‘I had to ask, does that mean Mum’s survived? Is it good that she’s in recovery?’
Two at a time, they come and stand by my bed. In an induced coma, wired up to monitors, intravenous drips and breathing apparatus, my head partially shaved, I look both peaceful and hellishly confronting. My mother holds me as much as is possible, and whispers, ‘Hold on Kathleen. You are very, very precious.’ The surgeon, who everyone remembers for his kindness, spends time explaining. My life has been saved, the surgery has gone as well as could be hoped for, but the right side of my brain was damaged by the stroke and surgery. As a result, my whole left side is paralysed. I may or may not recover. I may be in a vegetative state for life.
Exhaustion and relief that I am, at least, alive, fills my family. Tomorrow can’t be thought about right now. What matters is that I have been given a chance and am no longer captive to a grim prognosis that didn’t include a worthwhile future. Huge effort and skill have been expended to help me live. To everyone’s enormous relief, I have left the chaos of the emergency ward far behind.
Knowing that in intensive care I will be watched over by a specialist nurse 24 hours a day finally allows everyone to return home in the knowledge that I am being cared for to the fullest possible extent.
As they leave, each looks back with a private thought. Seeing the nurse, the monitors tracing my every signal and the staff surrounding me, Emma feels a wave of reassurance.
Petrina, knowing that my future is far from certain, walks over to talk to the ICU nurses. As in the first meeting with the registrar, she senses that if she can tell them about me, turn me into a person and not just a disabled body, it may help: ‘Probably I still feared there was a danger of the medical team writing
