Diary Chapter 5

I find the period between the accident on the 27 December and the move to Melbourne on the 13 January 2005 a blur. The events are correct but some of the timelines are wrong! I think I may have been a little more brain damaged than I had thought.

By the end of the first week in January, Adelaide hospital had decided that I no longer required their assistance. Sandy still did. He was asked to sign onto the SA TAC, which is a fault-based system. He refused to sue me or to authorise anyone to sue me until he understood what was happening. Thank heavens he spoke to Stef, who advised him that Victoria had a “no fault” TAC and that we could go with the police report. The police had argued that the accident was no-one's fault; it was simply an “Act of God”.

In fact we had to thank heaven for Stef and Mum several times. People didn't understand that we, especially Sandy, were brain damaged, and could not consent to anything. Even if they obtained our consent, it was illegal because of the state of our heads. We didn't know or remember about anything we had signed. What is more, Sandy could tell us nothing of what the Doctor's were telling him.

Health is divided into discrete areas and they don't seem to understand each other. The spinal unit doesn't talk to the brain trauma unit. There was no communication at all. But if our brains weren't assessed, how could people assume consent given our injuries?

Mum and Stef constantly saw Doctors and Nurses to sort this out. The Doctors' expected our consent to hold- what idiots they were. When they sent Sandy to optometrist's office, no-one in a position of consent was sent with him and he remembered nothing. We did not understand what was wrong with his eye and were never able to get him or clinicians to tell anyone with the authority to consent to make sense of it.

Even when they sent us home, the pilot coordinator decided to ignore the consenting adults (Mum and Saara), he went straight to brain damaged Sandy to make the decision. He never even bothered to ask me, even though commercial flights caused me pain due to a clipped vertebrae. The Matron caused him to pause, but he took every question from a consenting adult as an affront to his authority, as all health officials did.

What the hell happened to informed consent!

Thank God for Stef, backed up by Mum, backed up by Saara, backed up by me. In the end, Sandy and I gave our power of consent to Stef, so no one could say we had given consent. At a practical level, Stef and Mum used to follow the Doctor's around the ward from 8 am so they'd be informed. The poor things, how hard should consent be?

Stef organised everything. He consulted with the Social Worker (who could often have made it easier, but volunteered nothing). He worked through the TAC papers and then would liaise with the Matron for what he needed. Even after he and the Matron had said what they needed to, they spent till the seventh of January sorting stuff out. Between the TAC, Matron, and Ivanhoe (Victoria), it was another six days before the pilot and Qantas could be sorted to send us back to Melbourne. That is six days by two people, equalling twelve days, by however much the Adelaide hospital charged, of unnecessary money that taxpayers had to foot the bill for. And still our poor brain trauma had to wait.

Everyone in Adelaide was nice, but that last week in Adelaide was the pits. I was moved out of a shared spinal ward and shoved into a single room with the Chinese guy who could not speak English. At least the TV finally worked and Sandy sat next to me and held my hand when he could. Nina was getting more and more restless in Adelaide. They were so bored and so were we! Six days doesn't sound like much but 140 slow, slow, hours are such a drag.

The day is marked off by meals, washes and the night time TV shows. Visitors marked the day between 11 and 2ish. Poor things, they were so bored in Adelaide, I felt so sorry for them and so grateful for them too. They saw to our move between states and did everything else for us too.

After I had settled out of the ward and into the room with the Chinese guy, they came in one night at around 8 pm and moved me right down the other end with a Russian lady and no privacy. I was too stonkered by medication to complain. I have no idea why they moved me, though they shhh-ed me and hurried me down to the end. Maybe they thought it was better. The Russian lady snored worse than the Chinese man and she gossiped too. Her voice was a high pitched whine and she was extremely annoying to me. What is more, there was absolutely no TV here at all and I was forced to read newspapers and magazines from the waiting room instead.

While here, a Consultant came around with the doctors (and Mum and Stef in tow). I took the opportunity to ask about my arm. I was having it X-rayed when the Pilot Coordinator was supposed to decide the way home came around. It was while on the wheel chair to X-Ray that I realised my back was really damaged. The chair and X-ray were the most excruciating pain I have ever felt. The Pilot Coordinator, who was to see me before he decided about our mode of transport to Victoria, was supposed to see me after R-ray. Would he choose the Flying Doctor service, where I would be lying all the time and our brain injuries would be protected, or a domestic airline, which I thought would cause excruciating agony and might hurt Sandy’s brain? The Matron argued for the Flying Doctor I believe. The Flight Coordinator never came back to me. Sandy had told him (in the face of protestations by my Mum and Saara about Sandy's competence) that the commercial service was fine. When Mum and Saara had left, he came back when no family members were around to talk Sandy into agreeing to fly home on a commercial flight. So that was the way the Coordinator got us to fly home using the worst means of transport for us (and cheapest for them). Once more, the opinion of a brain damaged man was given higher credence than the opinions of people with the right of consent (Stef and I) or my pain and Sandy’s health problems. Sandy kept arguing with me about the flight as if both my pain and his head were trivial. Apparently, the commercial flight was quicker and smoother in Sandy’s opinion. My pain and his health didn’t matter to anyone at all except Mum, Saara and Stef…. and maybe the Matron. I would have felt pretty low but I had another win that day. The Social Worker announced she would council Nina.

That lunchtime, before I was X-rayed, she took Nina for about an hour. Ay the end, Nina felt fabulous. She discussed school, the accident, zombies (me and San), the rescue and the accident. She loved it and I felt great that she had unburdened herself. She was smiling from ear to ear.

Saara was a bit sad that day for a few reasons. Firstly, she couldn’t take us to the canteen as she’d have liked to because there were no wheelchairs to use. Secondly, I had had a bad day. I was tired and probably was set back a bit. Finally, she needed to return to Melbourne that afternoon and she missed everyone so much. But she just had to take care of business and she had an interview the next day. We sent her with love and our best wishes.

We were finally organised, but no, there was one last thing to sort out- the airline. By Wednesday 12 January, they had minders, TAC numbers, modes of transport and paperwork all organised. However no-one had told the airline about us and that delayed us another 24 hours. I was amazed, even though at another level, I recognised that these people were just doing jobs and didn’t realise how vital they were to us. The hospital Social Worker told me about the airline mix up, which consisted of wrong fax numbers and no-one to tell relevant people when faxes weren’t received. Nina was so sad she could not return to Melbourne yet and so were we.

During everything, Stef, the TAC, the Social Worker and the Matron were in constant contact. Stef was the core person. I’m so glad he took on this role as I was in no state to do it.

It’s actually quite interesting. Sandy seemed to combine joking around with sleeping and holding my hand. I focused on the news, either in the paper or on TV (when it was available). I watched the news about the Tsunami most closely. We had only just heard about it in Port Augusta before the accident. I was fascinated by the news and would read/watch it all night. I think I was interested by the stories of personal survival and death most.

I suppose their survival seemed as miraculous as ours and it was another way to pass the time. During this stage I also suffered from a lot of fantasies. Once I believed I was on the first floor of Flinders Street, even though I was still in the Spinal Ward at Adelaide. I thought I had to jump off a box and down an elevator to be found. By the time I had reached the corner of my bed, my head was so heavy that I kind of realised something was wrong. I called out and a nurse rescued me and my poor neck. She asked me to specify where I was. I said either in Adelaide hospital or in Flinders Street, Melbourne. She asked me to choose and I chose Adelaide.

As usual, she asked me to specify a pain level from 1 to 10. As usual I said 4 or so, but it isn’t true. I felt cold pain, but never something I could put on a 1 to 10 scale. I tried to explain, but they didn’t listen. From that time I always answered that my pain was around 4.

The next night I caught myself climbing out of bed believing I was in an art gallery. This time I stopped myself before any real harm was done to my neck.
No-one would say whether I had done any damage to myself by my fantasies. Maybe I did or maybe I did not was all they’d say.

The next day I chatted to Sandy. He had given up pain killers very early on, including morphine, because they made no difference. His head aches were excruciating. I thought about what he said. I had to work out what reality was, so I chose a curtain. If I could see that I was in hospital in Adelaide regardless of what my brain said. Its hard to see what other people do but to interpret it differently in your head.

I also refused morphine from that night. My delusions stopped. This was during our first week in the spinal ward. Shortly after I finished with the Chinese guy, say the second week, I also the stopped the Panadeine Forte because the TV put me to sleep (except twice at night) and I had no real pain. Once I joined the Russian lady, I felt the pain again and was once more using Panadeine Forte but only twice, at night, to help me nurse my arm through. It still hurts in the wrist, the elbow, the bicep and the shoulder.

When I stopped to think about it, It was so hard to believe that one day we had set off for a holiday and then we ended up in the Emergency Wards of a hospital. It seemed so unfair. It wasn't really unfair though when you think about it. All we lost is a holiday and some time and pain. Anything could have happened, like the people involved in the tsunami. We were lucky all right even if it did cost us and we were about 15 minuted from our destination.

The Russian lady left during the fires in SA and I took her bed. She had a TV and I was so happy.

The only way I understood that the TAC had accepted our claim was when they plonked down the Adelaide newspaper over the last 3 days. This was because we were private TAC patients.

The food was vomitious and I barely ate a thing. Everything- main courses, fruit, yoghurt and noodles tasted sweet. I don’t think I ever tasted such foul food in my entire life. I still can’t eat yoghurt (unless its Greek) or a compote of fruit. They are just way too sweet. Mum and Stef went to the market to get us rice paper rolls for dinner a couple of times… YUMMMMMMMM.

Sarah and Edwin came every second night with lollies. They were gorgeous and Edwin never looked bored, poor bloke. I was always glad to see them and glad of the chat.

The idea of private patients in the Adelaide hospital was a joke. A flipping morning newspaper was the only difference. There was no alteration to anything else, including access to TVs. What is more, the TVs only picked up commercial TV- I trained one in the Russian lady's bed to pick up the ABC. There was absolutely no luck with SBS. I didn’t care a hoot about commercial TV, those stations weren’t relevant at all.

It’s really funny I am throwing things into this now where I think it all fits in rather than sticking to a story motif. I may have missed stuff or people here or there. For instance, if it were not for Saara I would have no head scarf and no cosmetics at all. Bless her heart for all of them and also, the pedicures. They were so important and made me feel female, not simply human. Secondly, the night nurses were fabulous. Finally, thanks to the Matron, who really took her work seriously. She worked so hard every single time I had anything to do with her.