THE FARM, MARCH 2014
After celebrating the possibility of yet another reprieve with champagne (mostly me) and a special dinner, we collapse into bed early, exhausted by the emotional stress of it all. Less than two hours later David wakes me in distress. His breathing has suddenly become laboured: he’s gasping for each breath. He wants to go to the hospital; he needs help.
I drive in the dark straight to casualty. It’s not busy and they are quickly able to settle him down with breathing support. He’s unable to speak for long, so I give the medical team his full history and describe our visit to the oncologist only this morning.
Once he’s fallen asleep I drive back to the farm, tossing and turning for a few hours before returning at 7am to see if they’ve worked out what’s wrong. A chest X-ray reveals an enlarged silhouette of his heart, with what appears to be excess fluid in the pericardial sac. This is confirmed by a CT scan showing the fluid that’s constricting his heart, causing the breathlessness. This condition is called pericardial effusion.
We see the registrar, who explains that it’s not an unusual side effect of cancer treatment. We’ve never heard of it; no mention has ever been made about side effects to the heart. And yet later in the day when I google it, end stage cancer is listed as one of the major causes of fluid around the heart. I guess they can’t warn you about every possible nasty side effect – the impact of chemotherapy on the whole body is profound.
In my shock I don’t ask any of the right questions: ‘How is this problem treated? Can it be resolved?’ Most certainly I didn’t ask, ‘Will pericardial effusion kill him?’
In spite of the serious diagnosis David wants to go home. He’s desperate to get out of hospital and even though the registrar is hesitant, they allow us to leave. His breathing doesn’t seem to be as laboured as last night. Maybe it’s settling down; resolving itself.
Of course, what the professionals are seeing is a man with cancer who now has a serious complication. He is therefore dying and quite naturally wants to be at home. What I am seeing is a man with a temporary setback. Nobody said to me, ‘He cannot survive this’.
That night around the same time David wakes again in a panic and struggling to breathe. Again, we drive into casualty and he’s admitted quickly and given oxygen. It’s a frightening scenario. He settles to sleep; I drive back to the farm.
When I wake, very early, my brain goes into overdrive because I suddenly realise I’m supposed to be getting on a plane to Nepal in just eleven days. Everything has been booked and paid for – flights, hotels, local guides. I’m sure half the trekkers have already started packing their bags for this adventure. I can’t see myself going anywhere anytime soon.
I take food from home into the hospital for David’s lunch. He isn’t eating much, but he has an aversion to the hospital menu and would eat nothing if I didn’t bring in something he enjoys. I remind him about the upcoming Nepal trip, saying I intend to cancel it. He vehemently disagrees. I don’t appreciate it at the time, but David has ongoing anxiety about our financial situation and even though I only earn a modest fee for organising the treks, he’s insistent that I proceed. I had planned to have a haircut before flying out, so I quickly organise an appointment, fearing that if I continue debating the issue with David, the agitation might worsen his condition. As it is, he’s so short of breath that talking at all is a huge strain.
I don’t have the time it takes for a full appointment with colour and streaks. I asked the hairdresser for a super quick cut and colour. What colour?
‘Oh, why not make it bright red,’ I suggest. ‘I’ll just be the mad old hippie chick in Kathmandu.’ She takes me at my word and I emerge with red hair so vivid I look like Lucille Ball on acid. David yelps in horror when he sees me and even the doctors look nonplussed at my sudden change in appearance. I hope the colour will calm down after a few good washes, and laugh it off.
I stay with David into the evening, quietly reading while he sleeps. Eventually I drive back to the farm, to another restless night of worry. When I return the following morning his condition has deteriorated considerably and the next two days are harrowing. There’s no cardiac specialist who can operate in Bathurst, and we’ve been told the fluid around his heart needs to be drained away to make him more comfortable. He can have no relief from breathlessness until this happens. There are two very supportive young doctors, and they’ve been phoning various big city hospitals to get him transferred for urgent surgery. After a morning of calls, it appears they can’t get him into any of the major public hospitals in Sydney.
‘Why not?’ I asked naively.
The response flattens me. ‘It’s difficult to book surgery for end-stage cancer patients,’ I was told.
End stage? He’s dying, is that what’s happening? Nobody’s mentioned the ‘D’ word, and I’m struggling to interpret medical euphemisms. I could ask the direct question, but I don’t. Instead, I opt for being proactive.
I make two calls. Firstly, I call our old friend John, a cardiologist from the Blue Mountains. He’s the most dedicated of men, both as a physician and as a friend. For the last year he’s been conducting a pacemaker clinic in Bathurst Hospital every month and knowing of David’s condition he regularly called in for a cup of coffee and a chat. It was a great comfort to us both.
Surely John will know what to do next. I leave a message.
Next I call World Expeditions to tell them the news. There’s no way I can go with the group, they’ll just have to go without me. I was sorry, really sorry, but we’re in a critical situation and I must remain at David’s side. They understand without question. They reassure me they can sort something out; I must not worry.
John calls me back within twenty minutes. He’s found a top cardiologist – a good friend and colleague – who will accept David as his patient. He works at one of Sydney’s biggest private hospitals. David can be transferred by ambulance almost immediately and the surgery would be the following day. I’m shaking with relief.
Smiling, I dash back to the ward to tell David and the young doctors the excellent news. We have a surgeon and we have a hospital. We can leave as soon as possible.
David explodes. Despite his breathless state he’s shouting and gesticulating like a crazy man. ‘I’m not going to a private hospital! No way. Absolutely not. It will cost thousands and thousands of dollars. I’m not going!’
The young doctors look as shocked as I feel. I suggest they leave now while I sort out this ‘little hiccup’ in proceedings. I tell them to go ahead and book the transfer ambulance.
By now, David is almost hysterical and I try my best to calm him down. He has to see reason.
We’ve had private medical insurance for more than forty years but have really only used it for the extras – teeth, eyes, physio. Once we did use it when I had a lower back injury that ended in painful spasms. I was transferred by ambulance to a private hospital and the ‘gap’ payment was outrageously high. David has never forgotten or forgiven this experience, and has assiduously avoided private hospitals and fee charging specialists ever since. Talking him around isn’t going to be easy.
All the patients on the ward are staring at us. I draw the curtains around the bed and sit as close to him as possible. I take his hand.
‘Why the hell have we been paying for private medical insurance for all these years?’ I hiss into his ear.
‘I don’t care. I’m not using it. It will cost thousands and thousands. I won’t go.’
Unlike me, he isn’t whispering.
‘We’ve been paying insurance premiums just for a moment like this. It’s an emergency, don’t you understand? Without taking this fluid from around your heart, you will die!’ Now I’m sobbing.
‘I’d rather die than pay the gap,’ is his irrational response.
I lose it.
‘I don’t care what you want, you are getting into an ambulance and we are going to Sydney. You will have surgery tomorrow. John has organised it. You trust John, don’t you?’
‘Of course I trust John. I just don’t trust those other bastards.’ His last words.
By now he’s gasping for breath.
‘We are going, and that’s that.’
I leave him and go to the doctors’ station. They have called an ambulance transfer. I return to the ward, pack his stuff into a small bag and kiss him stiffly on the forehead.
‘I’ll see you at the hospital,’ I say as I leave.
He’s no longer speaking to me, his face like thunder. I make my getaway before he changes his mind and starts shouting again.
I can’t believe what’s just happened. David at death’s door and in need of urgent intervention, yet we’ve been having a screaming argument about what it might cost. I can’t believe how insane it all is. The very last thing I want is to distress him or for him to be angry with me. How do normal people cope with these situations?