Syndrome and she senses that they are interested. She also senses that despite my situation I am very much ‘still in there’ as her sister. The next challenge will be to return myself to myself.
Everything that can be done has now been done and the turmoil of the past 36 hours is slowing into steady acceptance. Relieved of the immediate burden, a new journey begins for my family, mostly around waiting and hoping. In their hearts, they wonder what is going to happen next and what my real capacity for recovery will be.
Afterwards
Despite the predictions and everyone’s worst fears, I delightedeveryone with an early recovery in intensive care. Not only wasI still there, I was still the same mum, sister and daughter theyhad known. Seeing me in a light room, away from the chaos ofthe emergency department, they felt that I was now ‘in goodhands.’ But the aftermath of stroke isn’t necessarily a straightprogression. Hopes that are raised are soon dashed. Kathleen
The next morning, my family wakes to the news that I am also awake. ‘She was awake!’ says Lucinda. ‘It was so great when we got the call and so exciting when she opened her eyes. Then there was quite an improvement after the first 24 hours. We were really excited as we began to realise that she was still there.
‘At first she had tubes down her throat and couldn’t talk. She began to wave her right arm around and we realised, eventually, that she wanted to write. So we found a pen and paper and then she was writing things like her appointments, the name of different people, the need to cancel some meetings. She was back to bossy Kathleen! And we were able to say, “Don’t worry, we’ve read your diary and it’s all being taken care of.”’
The realisation that my arm waving isn’t just more physical agitation, but a poorly relayed message, leads to great hope.
While they know these early situations need to be measured in hours and minutes, they can’t help but be excited by the positive news. ‘Once she’d survived, that was everything and you just go on with hope from that point,’ says Lucinda. ‘To be honest, we presumed she was going to die, so surviving surgery was massive. Then, each little thing became exciting — opening her eyes, trying to write, telling my uncle she couldn’t move one side.’
They can’t believe that one of my first acts is to try to communicate. It makes them aware of the need to watch me carefully, to understand what might be going on. Over the next months, this awareness will be a critical part of my recovery. They will watch and notice what the medical staff, rushed off their feet, simply don’t have time to do.
The relief for me of being able to convey my thoughts is wonderful. I had been so frustrated at not being able to communicate. ‘We thought it was hilarious that she was writing instructions to us,’ Emma recalls. ‘She had looked so fragile, connected to all those things, and we’d had such trepidation about the surgery, and so many fears for her. Afterwards there was joy when she became conscious.’
My oldest friend, Liz, arrives back from Singapore, having been told of my stroke. Unaware of the severity, she heads straight to the hospital from the airport. ‘I got the shock of my life. It was about two days after Kathleen’s stroke. She was in intensive care with half her head shaved, tubes everywhere, linked up to machines. It was an incredible shock to see a woman who always had thick lustrous hair, lying there with electrodes everywhere. But, as serious as it was, when she saw me walking towards her and recognised me, her eyes lit up. She knew I was there.’ Miraculously, I also begin to speak a few words. Watching this prompts my family to put even more effort into helping me recover quickly. They stay by my side, talk to me, to the nurses and to each other. They are wonderful. Nobody could ask for more.
They also read what they can about my condition, but find useful information elusive. Often they feel they are working on their own, without the assistance they need at this critical time. Petrina decides she must spend as much time as possible with me. That way, she will hear the decisions as they’re being made and see the doctors’ faces. Her aim is to monitor the medical side of my situation. She asks the nurses many questions and, by her own admission, really grills the doctors. She knows that you might miss out if you’re not there at the times of the doctors’ rounds.
Petrina becomes the conduit between that medical information and the family, who wait for her explanations. One very good intern tries everything he can to relay what the medical team think and answer questions. But he is one person. The lack of ongoing information is a constant anxiety. What is discussed this week no longer feels adequate the next. They want to know that everyone is on the same page, that they’ve been heard, that I’m being constantly reviewed and considered in light of my changes.
And the changes appear quickly. My early burst of communication ebbs, to be replaced with silence and weak response. I am moved into a high dependency unit, one step down from intensive care, but still with full time observation and care. But to everyone’s dismay, my level of consciousness remains low. My brother-in-law Mark notices nurses having to pinch me and thump heavily on my chest to arouse me. What has happened? Petrina notices a link between my level of responsiveness and the temporary shunt, which was inserted during surgery, being clamped off. ‘Kathleen would be responding to commands such as “move your hands”, maybe even talking a little and then they’d clamp off the tube and she’d go flat as pressure built up in her brain,’ she recalls. ‘I noticed this a couple of times — it seemed very marked to me.’
She speaks to the nursing staff to find out why it is being closed off but emerges from the conversations ‘never totally sure of their explanation.’ She decides to ring the neurosurgeon directly, and soon after a second craniotomy is performed, in which a permanent shunt is installed.
‘It wouldn’t be normal to call him,’ says Petrina. ‘The only reason I could speak to him was that I was a GP, I think. Kathleen was also feverish and, after having the infectious diseases people look at her, they decided it was ventriculitis, which is inflammation or infection of the ventricles of the brain.’ After treatment with antibiotics, I start to improve.
The bed next to mine is occupied by a noisy and emotionally disinhibited man, who is testing everyone’s patience. When nurses come to ask me questions designed to assess my level of awareness, he cheerfully takes it upon himself to answer on my behalf. When they ask if I know where I am, he answers loudly through the curtains, ‘Royal Melbourne Hospital.’
All I have to do is repeat his answers, which is easy for me, but makes it hard for anyone to get a private word or sense of my true state. He also starts bombarding nurses with obscene suggestions and captures my family visitors with questions on their lives and past. One day, after some of his more trying interjections I have a rare moment of lucidity. I turn to my visitor, who happens to be my future son-in-law, Richard, and tell him, quite clearly, that he has my permission to punch my neighbour’s lights out!
But it’s a rare moment. My conscious state remains impaired — a possible side effect of the surgery they are told, or maybe my extreme tiredness is simply a part of the normal process of haemorrhagic stroke. They just don’t know.
By the time I move into the stroke unit, I am rarely speaking. My brother-in-law Mark recalls the situation. ‘We were working on the today, the here and now, working out who was going to be sitting with Kathleen. This consumed our time. And we were all doing our own homework, trying to put the pieces of the jigsaw together, talking to colleagues. Really trying to understand what the hell was going on.’
The stroke unit
