attenuation is consistent with chronic small vessel ischaemic change.’
Stroke occurs four times more frequently in the left cerebral hemisphere than the right, and 83 per cent of strokes are ischaemic, that is, caused by a blood clot blocking the blood and oxygen flow to the cells. So the fact that I have a right side haemorrhagic stroke, with blood flooding into the brain from a ruptured blood vessel, means that my stroke is significantly more serious and less predictable than most.
By the time my sister Petrina, a general practitioner, arrives, the other family members have been taken into a room with the neurology registrar. This is the long awaited moment, when answers are expected. What they hear shocks them. Petrina explains:
I arrived to a number of people sitting in a meeting with the neurology registrar. He was midway into explaining to the family members, that Kathleen had had a stroke, that it was haemorrhagic and they weren’t going to operate. He showed us the scan so we could see where the haemorrhage was. I knew, as a doctor, that this was not good news. If it had been a blockage, they would have been able to give her medication to dissolve the clot.
To our shock, the registrar then started to have a NFR (Not For Resuscitation) discussion with us. I was very surprised. It was not really a discussion but presented to us as a fait accompli. He told us that given the size of the haemorrhage, should she survive, Kathleen would be unlikely to have any quality of life. She would either be very dependent and live in a nursing home or else live the rest of her life in a highly vegetative state.
We were not being consulted at all. It sounded like a decision had been made somewhere and it was being presented to us – like he was paying lip service to us in the consultation. I felt totally disempowered by the way he put it.
Petrina realises that this is a critical moment in my care — as indeed it turns out to be. Unable to speak for myself, she feels the need to speak on my behalf, saying, ‘I don’t suppose this will make any difference, but Kathleen is a very strong person, connected, warm, loving, intelligent, resourceful. She’s still young and I don’t think she’s finished living yet.’ And he did seem to take a step back at that point, but he certainly didn’t say we’ll take off the NFR.
NFR, in this circumstance, means that if there are any further adverse medical events, perhaps a heart attack or another stroke, they will not resuscitate me. I will be looked after, but my life will not be actively saved.
Petrina’s words halt the registrar’s flow. For the first time, the family’s voice is heard — who I am, who we are, what we think. I’ve been brought into the room as a person and not just a medical event.
A collective sigh of relief flows through the room. Petrina has voiced what they were all thinking. The registrar naturally knows nothing about me, other than medically. It may have been just a hope they’re clinging to, but my family know me well enough to know I’ll never give up. Ever. But I need to be given a chance. And that means I need to have full attention focused on my recovery and not to be sidelined by a prognosis that precludes the concept of meaningful recovery.
‘At that moment, I was definitely speaking as a sister and not a doctor,’ Petrina recalls. ‘I felt non-medical when I said that about Kathleen. It was bringing in an emotional aspect, but I was also trying to draw on any medical authority I could muster. I don’t think I’d seen her yet, just scans and doctors’ opinions. I was thinking it was a terrible scenario but I also thought it was very early days and you could not put a prognosis on her at this stage.’
From that moment, my family sensed an invisible gear change. ‘It was like everything ramped up. The system invested in her at last,’ recalls a family member. The situation remained confused, but during the night, as my condition deteriorated, I was reassessed for surgery.
Advocacy is a major theme of this book and one of the reasons I wanted to write it. This was my family’s first act of advocacy, standing up for a sister who could not do it herself. I think over and over that their request was a simple one, but had they not asked, I’m not sure I’d be here today. They were really asking: Can we stop and talk and think about Kathleen? Can we please not rush to conclusions too early? Please talk to us.
Confusion
We were all in shock. That morning we had an incrediblyvibrant and independent woman, and suddenly we are beingtold that she is unlikely to live and that if she does, she may bebedridden, a vegetable. Lucinda
As the hours pass, my family starts to assimilate the new reality brought by this hideous day. But beyond the fact that I’m seriously unwell, what is this reality? Will I be operated on or not? Should I be operated on? What are the doctors thinking? Answers are hard to come by, but they keep trying from inside their daze, helping each other as best they can.
I’m still in the emergency ward, and they don’t know why. The noise never stops, day becomes night and they struggle with despair and fear, unwilling witnesses to the human grief and drama all around. The staff shuttles past from one cubicle to another, busy and preoccupied. There is no place for family here. It was not designed for the people who naturally want to stay close to the bedside of a loved one.
The situation doesn’t seem right for someone diagnosed with a stroke. My family’s fear is that leaving me here might be part of the medical decision not to resuscitate. After all, why would you bother putting a patient you weren’t intending to resuscitate into intensive care? My daughter Lucinda recalls an overwhelming sense that I just wasn’t being looked after.
Some family members leave to get sleep, so they can return in the morning. There is little more that can be done or said, other than to stay in touch and make sure I’m not left alone. My elderly parents have yet to be told and one of my sisters departs to share the terrible news with them. The real world is making its brutal way back into everyone’s lives.
On hearing the news, my mother, who described me as her beautiful and fun loving eldest daughter, was overcome with grief. ‘Not the same grief that overwhelmed me when this vital, lovely daughter left home at 22 years of age. That grief was sprinkled with the joy of sharing, from afar, the new excitement she was finding daily. This grief was overwhelming.’
In the emergency ward, my two daughters, Emma and Lucinda, settle in to stay by my side for the night.
Lucinda recalls, ‘It was a horrendous evening. There were not many doctors around by then. There were some nurses, but we had this overwhelming sense of Mum not being looked after. She was vomiting and choking and we had to keep running out of her cubicle and shouting for help. What if we hadn’t been there? Once, we were asked to wait outside the cubicle while a nurse was in with mum and another nurse came along and started shouting at us. What were we doing? We explained why we were there, and then he apologised, explaining that they get people who snoop around. I know there’s a lot of stress in those departments, but it was cruel on us.’
Emma says, ‘We felt so helpless. We felt something urgently needed to be done. Instead we were waiting … waiting. The inactivity was a distressing contrast to our sense of urgency and emergency. We told Mum everything was OK, reassured her that she was in good hands, while knowing full well that wasn’t the case. Mum was in a great deal of pain, asleep, awake, then confused. At one point we realised we didn’t know if Mum’s contact lenses were still in, or had been removed and I found myself adding to her distress as I poked around in her eye, endlessly apologising.’
Adding to Emma and Lucinda’s burden of shock is their confusion about what was going to happen to me. They’d heard several conflicting assessments about what the best course of action might be. The registrar’s
