Thursday, December 31, 2009

Peter Spencer has been on the hunger strike now for 38 days!
Most people in the urban areas are not even aware of his plight and that of hundreds of farmers in the same situation. Please if you are overseas or have overseas connections this shameful story needs to get outside Australia. Prime Minister Rudd and co. have no idea of the anger out here in rural Australia. Local radio has been reporting 24 hours a day on this with the stations being overwhelmed by callers...but Sydneysiders have not even heard of this man.
just type in "Peter Spencer property for more"

Dying for a chat with Kevin Rudd


Protest ... Peter Spencer won't come down from this tower until he can talk to PM Kevin Rudd. Source: The Daily Telegraph

AS HIS health begins to fail, protesting farmer Peter Spencer swore yesterday he would die before giving in to a Federal Government decision to make his farm a carbon sink.

That vow came as his four children and newborn grandchild arrived in Canberra from the US to support the 58-year-old on day 37 of the protest.

Mr Spencer, who is chained to a wind tower more than 20m above ground, claims the government declared his property in Shannons Flat, north of Cooma, a carbon sink without offering any compensation. He says the move has left him unable to earn a living because he cannot clear land and redevelop the farm, and he is demanding a personal meeting with Prime Minister Kevin Rudd to discuss the issue.

Aaron, Emma, Kahn and Sarah Spencer, who were all raised on the property, arrived home on Christmas Day and intend to stay until January 8. Sarah, 30, a registered nurse in her adopted home of Grand Rapids, Michigan, planned to examine her father yesterday after introducing him to her four-month-old son Saxon.

"I've got my stethoscope and blood pressure cuff so I want to assess him," the farmer's daughter said. "I want to listen to his lungs, check his blood pressure and look at the swelling on his ankles. The problem is even if I tell him that I think he's coming down with pneumonia or that his kidneys are weakening ... he won't come down.

"It's heartbreaking ... but he's still very much with it mentally and is the same father we've always known. I just don't know how quickly he'll deteriorate. We're going to support him. He will come down if [Mr Rudd] makes an agreement or he'll die waiting."

Aaron and Kahn climbed the tower to give their father warm clothes and helped set up a tent to protect him from heavy rainfall.

A spokesperson for Mr Rudd yesterday said the Government had "urged" Mr Spencer to stop the protest.

"The Agriculture Minister responded to Mr Spencer's letter on the Prime Minister's behalf, however the Government believes this matter should be settled through the legal system and urges Mr Spencer in the strongest possible terms to end his protest and seek medical attention," the spokesperson said. "The Government sets policy in the national interest. This policy will not be changed by threats of violence or self-harm."

Part one recorded on day 16

Part two recorded on day 16

Saturday, December 19, 2009

Have a happy Christmas y'all. I will be away till after Christmas and hope all have a good time, see family and or loved ones, eat too much, drink enough if you drink, stay safe.

I'll be seeing our two daughters and their driving down soon...any time we are together is a good time and we always did make the best of those times.

Tuesday, December 15, 2009

Peter Spencer now into the 23rd day of his hunger strike...
Just type in Peter Spencer Hunger strike on google. Australian traditional farmers have become over the past generations more green than the chattering classes would admit, whilst enjoying the comforts of urban life. For Australian family (as opposed to company) farms the suicide rate is phenomenal. I fully understand the extreme frustration of the Peter Spencers of Australia and support him but hope and pray he does not starve to death.

For our Prime minister and his 100 plus entourage over in wonderful wonderful Copenhagen, Peter Spencer won't matter at all. And if I see another photo of Rudd coming out of a church as a photo opportunity I think I will throw up.

(I have a first cousin called peter Spencer, but this is not him. ) this website covers Peter Spencer's fight, letters written etc and worth a read.

The Land
Alan Jones pleads for end to Spencer's hunger strike
10 Dec, 2009 12:20 PM
SYDNEY broadcaster Alan Jones has pleaded with defiant Monaro district grazier, Peter Spencer, that he end his hunger strike, while bringing national attention to the cause.

Mr Spencer was in the 16th day of a hunger strike over government failure to compensate him and other farmers for the cost of land clearing restrictions when he spoke to Mr Jones via mobile phone.

Mr Spencer, “Saarahnlee”, Shannons Flat, has already fought unsuccessful court battles to win billions of dollars in “just terms” compensation for the 87.5 million tonnes of carbon emissions he says were saved through land clearing restrictions.

He said he had been unable to use a large section of his property effectively because of government land clearing restrictions.

He began the hunger strike at his farmhouse on November 23 and last week chained himself to a 90 metre wind monitoring mast on his property, where he is drinking, but not eating.

He has vowed not to end the hunger strike until the Prime Minister, Kevin Rudd, meets the terms of his submission demanding compensation for himself and all other farmers affected by land clearing restrictions.

The lawyer representing Mr Spencer, Peter King, said he had urged Mr Spencer to come down from the tower “for the sake of his health, friends and family.”

It is not clear at what point or if his supporters will intervene if he is close to death.

Cobar district grazier, Alastair McRobert, who is watching over Mr Spencer at “Saarahnlee” said if Mr Rudd did not meet Mr Spencer’s demands there would be “blood on the wattle”.

Former federal treasurer, Peter Costello, conceded in 2007 that Australia had put a stop to large scale land clearing so it could meet its Kyoto Protocol carbon emission targets.

While Mr Spencer may have a moral case, he had been unable to establish a legal case despite many attempts in court.

He said he had made about 200 court appearances in his bid to achieve the goal of compensation but governments usually get his case struck out before it is heard.

In a letter to Mr Rudd dated November 23, Mr Spencer said: “I have tried the protocol of being reasonable for 10 years. That opportunity has passed.”

He said farmers had paid the entire carbon tab for Australia “while you rewarded the polluters and power stations and the coal industries and lied about our role”.

Mr King said there was an application to have the case heard in the High Court but it awaited a decision in another case on water rights.

Meanwhile, Queensland-based landholders' group Property Rights Australia has today reinforced its support for Mr Spencer's plight.

PRA has long been arguing for the rights of landholders who have lost access to their land without reasonable compensation under land clearing bans designed to deliver Kyoto greenhouse commitments.

"Everyone with remnant timber and now regrowth in Queensland is making a contribution to Rudd’s claimed carbon sequestration and this fact now comes into stark relief," PRA said in a statement to Rural Press this morning.

"Environmental law experts here and overseas are taking a keen interest in the flouting of all recognised legal principles in the administration of law in this country and pressure will build to have this rectified."

But the group says "we have to collectively convince Peter Spencer that his efforts have highlighted the situation and he has started a groundswell that won’t be stopped".

Sunday, December 13, 2009

Anyone know a good publisher or three?
Its a long wait and still hopeful that out of the 18 manuscripts sent out with six returned I am still in there with a chance.

Two publishing companies said they were too small to take on this sort of book…they were two man operations… Simon and Schuster said “We found it gripping, shocking and moving, as well as well written. Unfortunately, though, we have decided not to pursue this for our present publishing list as we feel the market for this book would be restricted to NSW…” so I am going to try to downplay the NSW bit and use the word Australian more.

Wakefield Press wrote, “Thank you for your submission. This is a powerful and tragic story and I offer you my sympathy. No one should have to suffer as you and your daughters have done. And sadly I know that the issues addressed in your story are not yours alone. It has been assessed and unfortunately does not suit Wakefield Press’s publishing list.”

Penguin was not accepting unsolicited manuscripts. MacMillan just wasn’t interested apparently and sent out a form letter. Random House suggested a book and told me where to get it and the book lists all the world's publishers and what genre they accept...advice which i will take. I don't give up easily, but especially not on something as important as this. I think apart from being a mother, and loving Don and family this is the mopst important think I have and probably will worth sticking with.

I have enclosed a chapter here....the manuscript is 266 pages long...and a lot had happened and been done to Don before this chapter. Some medical terms were explained in previous chapters, so if medical issues don't make sense they will when the whole thing is read. This chapter only covered a couple of days in ICU...Don was there for over five weeks to put things in prespective. It is not a nice read, and I suggest if you are feeling a bit down or sad not to read it... any feedback appreciated. It has clear paragraphs etc but the format was jumbled a bit when i pasted it in here...still learning


Chapter Eleven

ICU early days

When the phone call which should have been made hours earlier came at about 4am, I rushed up to ICU. As I made the short walk, I called Melissa and Alison and then my sister Veronica. I wasn’t allowed into see Don straight away, so I phoned his brother’s house and spoke to his wife. They live in Brisbane, as did my sister and Don’s nephew Rod, who arrived later that day.

Don was in ICU from 15 April until the afternoon of 17 May 2007, when he was ‘discharged’ on a ventilator. We were told the ventilator would be taken away as soon as he arrived home and that he would die a few hours later. This provision was the only way they would work towards getting him home. As Don knew he was dying and had a horror of dying in RNSH, he took the offer.

I have spoken with our daughters and my sisters about this five-week period, and especially that dreadful last day, and we agree that it was as if we were all just going through the motions in a state of shock, such that it all felt unreal and surreal. Some things which happened in those last days are only just starting to sink in for us. I had whole periods when the surface of my face felt either numb or prickly, and at night when I looked at myself in the mirror, I felt like I was looking at a stranger, a robot who had my face. It was bizarre. The atmosphere in our part of ICU was that of total chaos. There seemed to be a shifting sea of faces, with nobody wearing any name badges. It seemed almost like a sensory assault at the time. My sister Veronica likened it to the painting by Hieronymus Bosch ‘The Temptation of St Anthony’. (See photos)

No matter what happened to Don in Spinal, and it was an awful few days, the five weeks he spent in ICU was the stuff of nightmares. He suffered dreadfully. I watched my husband’s sister Judy die painfully from cancer over a three-month period, which even the palliative care nurses involved described as a ‘disaster of palliative care’. That experience was graphic and shocking. But this was different. It was so impersonal; dehumanised. Everything followed a set process, and it seemed the process was much more important than the person suffering. There was little compassion shown to my brave husband. At least the people surrounding Judy were filled with love for her. The nurses were kind and the doctor caring, as they should be.

Don would not have ended up in ICU at all if he had had, as a member of the Spinal Outreach team which once visited us in Port Macquarie told me she expected he was being sent to RNSH for, “a simple lung drain and biopsies”. She spoke at some length about this to me soon after Don died.

There is not one bit of doubt what caused Don’s respiratory arrest. Most of the ICU doctors and respiratory doctors mention failed pleurodesis in their notes. When I asked and asked them over those five weeks, not one of them would tell me the truth. Yet their notes are damning as to the cause.

Don’s suffering in these five weeks was so shocking to watch, so awful, that I have trouble remembering a lot of details. What I do remember is hard enough to bear. It was as if it was just one long, continuous, never ending day; a day full of filth, cruelty and the unbearable pain of watching my lovely husband suffer more than I thought anyone could. Judy’s son Rod summed it up in a recent email where he described his impressions of ICU and Don’s treatment. It all just flooded back in a wash of what I can only call horror. Somehow, maybe for my own sanity, I had forgotten the worst things.

Rod wrote:

“I recall arriving at the RNSH approx 10.00pm Sunday night… after talking to Melissa that afternoon I could tell that things were not good, this why I flew down from Brisbane on the next available flight. I strolled through the hospital after visiting hours with a backpack with not one security check reaching the ICU ward, this alone sticks in my head, that was only the beginning; once I reached Don’s bed I found my uncle’s arms strapped to the bed and his mouth gagged holding in two plastic tubes, the tension on each corner of his mouth was painful just to look at. After greeting Don with “G’day mate”, I had to hold back the tears thinking, “You poor bastard what are these people doing to you?” I actually said to Don, “You are a brave bastard”, to try and give him some extra strength, even well knowing that a Mackay will fight to the very end to live. They have an inner strength. I stayed for an hour or so.

When I returned the next morning I remember I was actually appalled by the state of the hospital, it was filthy. The floors, the walls, the toilets, the elevators you actually felt you were in a third world country, I clearly remember thinking this. Then there were the nurses, one man (this is in ICU!) who could hardly speak English. Not one was helpful in explaining Don’s condition. The doctors, well they seemed non-existent, apart from one tall doctor; however she would not even acknowledge you were in the same room. The next couple of days all I tried to do was be with Don and talk about old times. Not once did a nurse or doctor try to comfort Don or explain what was going on with him.”

When I read this, it all flooded back. No one explained anything. They thought they did, as I read in the ICU notes that we ‘understood’ everything they said, but their so-called ‘conferences’ were a joke. We were not informed when Don contracted MRSA and he was moved to another part of the ward. I had to find where they had moved him to. I was not told when the MRSA and then the infection Klebsiella Pneumoniae went to his lungs until about four or five days later when a nurse happened to mention it because I noticed her suctioning up bloody mucus from his lungs. ICU at RNSH felt like a madhouse with the inmates running the show. I sometimes felt that the patients and relatives were the only sane people there. There were many times and incidences too numerous to mention when I was kept uninformed and Don, who could hear and understand, was just entirely bypassed. He had no rights at all. The reasons for the extreme agitation he displayed in there were never explained to us. There was a certain amount of juggling about with his medication for extreme pain and his anti-anxiety medication, which would not have helped, but we were not told about that either.

All the time Don was in ICU, even though I asked many times, I was never told the cause of his original respiratory arrest in Ward 7D, and never told why he was unable to manage off the ventilator and had to be reintubated five - or was it six? - times. I lost track. A good quarter of ICU notes, from both doctors and nurses, are illegible, which is dangerous as a day or two after being written it would be impossible for other staff to really get the full gist of what had happened and what had been written. This just added to the lack of continuity. But now I have read their notes, or the ones which are readable at any rate, it is clearly evident that the doctors and nurses, and most importantly the respiratory doctors, knew exactly why Don had his first arrest and remained reliant on a ventilator until finally he was so diseased, so septic with their infections, full of fluid, his lungs full of hospital infections, that he was ‘discharged’ to die. Unbelievably, Don does not appear in the death rate of that diseased hospital; he was classified as a ‘discharge’, not a death.

Frequently the notes say his respiratory arrest followed a failed pleurodesis, or words to that effect, and that he had developed ARDS following an inflammatory reaction to the talc. They all knew. Yet when I asked one of the respiratory doctors if the pleurodesis may have caused my husband’s condition, he became aggressive and told me I was spending too much time worrying about this and should worry about other things. I said to him that he had no reason to speak to me like that and if it were his wife or child in here like this, how would he feel? Later he came back to say he was “sorry I felt that way”. Not exactly an apology. Melissa and Don watched this exchange. She was very angry and I have no doubt in the world that if Don could have raised himself out of that bed he would have laid that unctuous doctor flat for talking to me the way he did, with hands on hips and pelvis thrust forward in a very aggressive and intimidatory stance. Not one you would expect a doctor to use in front of a dying man and his family. But in the notes, this doctor wrote exactly what had happened to Don. At the time I asked him, he knew the truth. He refused to answer me. He should be called to account for that.

I thought it was a legal requirement that doctors fully inform patients about the cause of their condition and every relevant bit of treatment decided upon, every infection. In fact, we are meant to be kept fully informed at all times. But as it was, they only included us when they wanted a signature on a bit of paper or if we demanded to know so often that they would call one of their damn conferences as if they were doing us a favour. Just having loved ones in Intensive Care shattered relatives, without this sort of treatment. One day I asked a young man, whom I found in tears in the waiting room, what was wrong. His mother had been badly burnt and he seemed to be always on his own. He was terribly worried about her and, like me, in shock. He said that when anyone tried to get information out of them about a relative, “they act as if you are trying to steal their lunch.” This was spot on. It was as if you had committed an offence, or needed placating. There were few exceptions to this that I saw.

Furthermore, the duty doctors seemed to all disappear after about a week and a new set would come in. As the notes were so poor and illegible, mistakes in times and dates were made and perpetuated by sloppy record-keeping. In the notes, Don went from having a diving accident in 1982, which was fact, to a driving accident in 1988, to having a driving accident in 1982. Then they got it right, as a diving accident in 1982, until the last doctor flipped it back to his being a quadriplegic for only 15 years. Even in sorrow, you have to laugh. In between the tears I would find myself starting to laugh like a crazy woman. They made so many and such stupid mistakes, and even tried to tell me (incorrectly) when the accident had happened – as though I wouldn’t know! This is just one minor example. The HCCC later stated that much of the information we requested was passed on ‘verbally’, but we experienced little of that – and anyway, how does the HCCC know that, I wonder? Maybe because the doctors and nurses involved said so.

Don became what they did to him, and by the end not one of the staff had any idea of the original person who entered that place.

One nurse, the soul of tact, even said to me over his bed, when he was wide awake and could hear, “Is he always like this?” I don’t remember my answer, but when you muck about with ventilators and drugs, bugger up fluid and take so much blood the haemoglobin levels were too low most of the time, why would an ICU nurse not have the common sense to comprehend what had been and what was being done to him? It’s got me beat.

Not good enough for a ‘modern’ Intensive Care Unit in 2007. It’s probably still the same in 2009. Nothing I have seen, understood or been told gives me any faith that a patient in the same condition as Don would not be treated in the same disgraceful manner today. As far as I know things as bad as those that happened to Don have happened since then, are still happening now and will continue to happen - because there is no one to stop it. There is no effective body to make the hospital and its staff accountable. No will to comprehend what it is they are doing to people and their lives inside that dark metropolis.

I have also noticed that when I go through the notes, I can’t find Don’s ward and bed changes noted. He had four position changes in ICU and yet there seems to be no mention of when these happened and to which bed he was taken. There’s no real central nurses station which serves all of ICU, so when you turn up to see anyone in Intensive Care and they’re not where you last left them, the first horrible thoughts are accompanied with a sinking feeling, “Has he died and they haven’t told me?” - which is entirely possible in that place, based on past experience.

I am sure most staff in ICU had no idea that when Don was admitted to Royal North Shore he was ‘alert and orientated’. Some of them expressed genuine surprise when they asked what he did and I told them that until earlier that year he had directed his own company and successfully run and maintained a large commercial building which we owned. Not that that should matter at all, but it showed me what their attitudes were. If he hadn’t been so physically disabled I doubt this would have been so pronounced. There was one male nurse from somewhere whom none of us could understand. I had asked the other ICU nurses what on earth he was talking about and they thought it was funny because they couldn’t understand him either. Yet he was looking after critically ill people who could die at any time. He annoyed me particularly because he wouldn’t back away when I was with Don and went into these laborious and unintelligible explanations of Don’s quadriplegia to me – as if I needed it explained! I’d be trying to talk to and be with Don and there he was in our faces, doing nothing but listening to everything and constantly interjecting his vast knowledge in his strangled English. He was so ill-informed he frightened me.

One time, when a nurse was suctioning Don a part of the equipment fell onto the floor. Melissa and I saw that nurse pick it up and put it back in my husband’s mouth, bold as brass. This was only days before the bacterial infections MRSA and Klebsiella Pneumoniae invaded his lungs so disastrously. Later, friends of ours saw another nurse do exactly the same thing, not too long before Don died.

Another time Melissa and I noticed that Don was very nauseous. We saw a lot of clear fluid coming out of his mouth and running down into his beard. We called his nurse over to suction him so he didn’t choke. She was quite begrudging and on her way over complained that she’d just suctioned him. She did it again and then just walked off, leaving us to clean Don up as best we could. Then we saw it happen again and had to call her over once more. He was her only patient, but she was quite angry. We told her he was really sick and asked if she could give him an anti-nausea medication that worked well for him at home through his drip. By this time he was wet from this fluid from his mouth running down his neck, behind his head and underneath his shoulders. He was cold and shivering, feeling really ill. He had so many tubes, we asked her to help us clean him up because we were afraid of disconnecting something. She told us he’d have to wait for the lift round. That was that. We cleaned him up and got under him as best we could and he watched our faces with the saddest eyes. Poor Don. How could she do this to him? How could she act so horribly towards a suffering and dying man? Who knows what her name was? Melissa remembered that she was “a harshly spoken English nurse”. Melissa's words. This nurse was horrible to Don and very slow to act in any direction. Some of them seem to even resent being at work at all.

Here again, my sincere apologies to those nurses who cared. They carried the others, and did their best to be compassionate inside a disgracefully run, run down public hospital. I remember a small fair-haired nurse who always sorted out the cables and tied them together and got the room in order first. I remember a dark-haired one who wrote lots of notes and really took notice of what was going on. There was a tall slim one who wore her long pants on the hip and was excellent and another who covertly told me about the ‘Top Secret’ pressure area.

The staff had hidden from Don and me that a pressure sore had developed under his scrotum, but this one nurse had the decency to tell me, after her shift caring for Don ended. Why they thought it acceptable and correct not to tell us is hard to decipher. Any pressure sore developed in hospital is caused by bad nursing practices. That’s it in a nutshell. No excuses. If I, basically alone in the house with Don for all those years, could ensure he never had a broken area of skin, or pressure sore, even when he spent six months straight in bed, how on earth could this happen in Intensive Care, with shifts of nurses and one nurse to each patient? And what purpose and whose purpose did it serve to hide it from me?

There were others too over the long five weeks but I am sorry, I can’t put any names to faces because none of the staff had name tags. How they work in that system cleaning up the messes and mistakes others leave for them is a miracle.

As I go through the notes for each day, almost all the nurses have written that Don was ‘agitated’ or ‘extremely agitated’. The cause was never explained. As a C5/C6 quadriplegic, when Don was upright in his chair he had a little arm movement, no hand movement and little strength. Confined to bed, Don’s arms were even weaker. But almost every day, Don’s arms had to be tied to the bed, and he would be constantly pulling on the restraints. Sometimes the agitation was so extreme he would be able to lift his back off the bed by pulling on those restraints and this would go on for hours, often all day. He had never been able to do that in the whole time since he became a quad in 1982, and then he was a young healthy man. This went on for five weeks, and it was awful to watch.

Even I had to tie his arms down on the really bad days, every time I left his bedside because he tried many times to pull out the ventilation tube and he would get his hands all tangled up. I hated tying his arms down. I tried to do it as gently and loosely as possible so he didn’t feel so restrained.

I knew his agitation had many causes. A lot of it was just uncontrollable movements, and he was on so many drugs often he was not truly with it, although he understood me and we had a lot of eye contact. But I know also that he wanted those tubes out. He knew the consequence of this was death - full stop. He had asked me some months before that if ever he was unconscious and on a ventilator, I was to make sure he was taken off. No quadriplegic was going to survive the massive damage done to Don’s lungs and he knew it. I knew it. The staff knew it too. I am stumped as to why they would not admit it. He did not want to be like this. Being a quad, a slight flu is enough to kill. Don was never going to recover from the massive damage pleurodesis did to his lungs. I know – not believe; know – he knew that and that he had made his decision and wanted out. Removing a ventilator from a morbidly ill person is not euthanasia. Euthanasia is actually introducing something which actively causes death. There is a huge difference.

Don had the right. But they kept doing what they were doing, holding out little slivers of hope, in a hopeless situation. Some of them knew what he was doing too. But I saw almost nobody medical give him any comfort for the misery of his dying. There were a few notable exceptions.

At this time NSW Health was not just broke, but deeply into the red. After his death I was told by the North Sydney and Central Coast Area health Service’s representative that it would have cost over $100,000 to keep him alive in ICU. None of this makes sense to me. He was dying. He was ventilator-dependent and had no hope of ever being able to breathe independently. He had accepted from the first arrest that he was dying, and actively tried to bring that about.

RNSH is well known for its high level of “bed to bench” research. Something Prime Minister Rudd has rewarded financially at a time when NSW health is in debt to suppliers of services right across NSW. As of September 2009 (ABC News 14 September 2009) NSW Health is in debt to suppliers for over $70million and suppliers are considering stopping supplies of bandages and other things, yet there is a billion dollars for research on top of what they already have.

On 10 March 2009 the Sydney Daily Telegraph reported:

Prime Minister Kevin Rudd is to approve a $1billion rollout for a network of medical research units across Sydney in what would make the city the world's research capital.

A mass bailout of the hospital system now appears to be unlikely with the PM said to be unwilling to throw money at the NSW Government to fix its Budget problems.

Instead, sources in Canberra claim that Mr Rudd was "disposed" to a $1billion submission from NSW Health for funding of eight medical research institutes across Sydney.


Don’s agitation was often accompanied by hallucinations and I would see him follow things around the roof of the ward, and fixate on something as if it was moving or alive. He was obviously terrified of whatever he was seeing – always in the same area of the room. I would quietly pat his shoulder, say his name softly and he would look at me and drop his shoulders in relief. For that moment he would be not seeing anything but my face or Melissa’s but soon he would be back in the nightmare world he alone could see. There were weeks of this. It was especially appalling for him and for those who visited. There was nothing we could do to stop it. But during those days when I sat with him with my hand under his neck, warm and touching, he and I knew. There was a lot of very deep and lucid communication. Remembering the days spent like this brings tears. I wonder to myself, why didn’t I just stamp my foot and demand to see the head of ICU and ask that he go to Don during his good hours and ask Don what he wanted? How many nights have I dreamt that this is what I did? I don’t even recognise the ‘me’ that was there at times. Having to come to terms with this has been the hardest internal battle I have ever fought. Writing this now in 2009, my heart breaks open again for Don, Melissa, Alison and for myself. I have learned to deal with shocking memories which crawl out of my brain like maggots. Going to sleep each night, I pray it will be light when I wake. The long nights bring too much thought and suffering. This is the legacy I have been left with. I have no doubt that my girls also suffer. But I hope not to this degree.

Much of the time, the tube in Don’s mouth was tied around the back of his head to hold it in position. The edges of his mouth were red raw and sore at times and the skin of his mouth was all sloughing away from the Candida Albicans(or thrush) infection which was throughout his digestive system as a result of the very strong antibiotics he was on.

The only tooth left in the front of Don’s mouth had been knocked out of position at the time of the first respiratory arrest, presumably when doing the emergency ventilation, and left in a sharp dagger in the front of his mouth. (Don had lost all his other teeth due to the medications he was on, and had false teeth.) He lacerated his lips and fingers from this razor sharp, broken tooth. His body became so swollen it was horrible to see, the skin stretched so tight with excess fluid I thought it would just split open. Don’s reaction to unrelieved pain was Autonomic Dysreflexia, and one blood pressure reading I noticed was 214/110, which for a quadriplegic is shocking as they sit usually on 80/50. Don felt intense pain internally, and with all the swelling he had to be suffering. Although he’d only had a moderate right-sided pleural effusion when he left Port Macquarie, the pleural lining of both lungs now had fluid in them. But it was not just fluid; they were also full of infection, which was blood-tinged from the pneumonia and the MRSA. His lungs crackled with these infections.


Don’s disastrous treatment – which I have only touched upon up until now, just the tip of the iceberg – was a horror story. It plays almost continually in my mind. Even when sitting around a table with people, there is little ease from these pictures. It feels like I’ve become two different people. One, the public face, is trying to hold calm. The other is private, one I can’t share. This person will sit on the floor howling with inconsolable grief. Not because of Don’s death. We all die. It’s the manner of that death. At present I feel so terribly damaged, as if I’ll never really be myself again. Occasionally I’ll find something so funny that I start to laugh out loud like I used to do so often. More often than not, the sound of myself laughing in the quietness brings tears and I end up a mess. If I found something funny or interesting, I’d come tearing to wherever Don was already talking or laughing and he’d listen and be interested or tell me where to go in his unique style. Sometimes we laughed so long together we’d have to try not to look at each other because it would set us off again.

I feel emotionally wrecked. Just wrecked.

Not one bit of this would have happened if Don had received the right treatment when he came to RNSH and been accompanied by his scans and x-rays and comprehensive discharge notes. And why include the word ‘pleurodesis’ in discharge papers when the only doctor to raise that issue had never seen Don and had no idea of what state he was in? It’s all one huge mess. It feels as if they murdered him, except that would imply intent.

Don’s death was the result of people being disconnected and disorganised, I realise, and not intentional. But once the damage had been done for whatever reasons, it appeared that those who knew covered up what had happened and extended his suffering with extreme lack of care and cruelty, not intentional I realise but it still caused Don such a level of suffering it has to be mentioned.

Thursday, December 10, 2009

I've been a drawing -

usually on my "Quick Whipped up Faeries" blog but this one I based on Don and I, many years ago. He had just come home from work and we were sitting out in the back steps on a hot evening. Our kids were playing in the yard...and the camera which I had been taking photos of them with - a cheap Instamatic - was at the bottom of the stairs when our eldest asked to take the photo I based this drawing on...she was six, Its a favourite

will post the original photo when I find it but this captures the reality of our life at that time
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Tuesday, December 08, 2009

Wonderful Wonderful Copenhagen - for some

This guy has more talent that the tens of thousands of freeloading Government officials and bureaucrats and hangers on that the taxes are funding to go to a predetermined outcome of a gab fest that is being held at mentioned on a comment to Sling - it could have all been done by the net and much carbon Dioxide and other crap was spewed out and is being spewed out to make this happen. Its enough to make you sick to think of the waste when too many have no warm home to go to, no tucker on the table and no hope.

They are pretty good telling the rest of us what not to do...but no doubt the airconditioning and heating is always blowing on full in all the embassies, parliament houses, minister's offices and government cars.

Its all been decided whats going to happen... this is being done to give it legitimacy and it stinks to high heaven. Gaaarrrgghh!

Sunday, December 06, 2009

Is Foxymoron still out there???

if so have my email address let me know alls well okay?

Friday, December 04, 2009

Here I am aged 20, with four month old Melissa...

outside my mother's old house in country NSW
unashamed... it was the 70's after all - what was there to be ashamed of?
in love with her dad...

My amazing mum, actually practised what her religion preached...unlike too many others from the religious communities... who worried more about what the world would think of them... and not about what god would think of them.

She had said to me aged about 15, "if ever you get pregnant you can always come home and you will be welcome as well as your baby" That sticks in my brain...A precious gentle blanket to cast on any daughter's shoulders. If more of the world was like my mum we would live in a wonderful way... she was too busy laughing, giving and loving to mind anybody's business.

Mum had nothing really financially...Dad had been killed leaving her with four of us still at home. Her old house needed paint and much more as well...but she taught me the lesson that just because you have nothing, doesn't mean you have to be mean minded and a victim. But as well i learned that often its those who have the least who are the first to help and offer help without a cost being put on it.

I did come home for many holidays, but just to show mum my amazing treasure and she was as besotted as any proud Grannie. Don and I married four years later after I asked was the 70's...

When Don had his accident in was mum who minded Melissa in the early months of his 7 month hospitalisation. She had to go to school and i was living out of a suitcase at the time not knowing where I would be the next week...Mum provided stability for Melissa and peace of mind for me. Melissa said she was so happy there, and that my mum told her stories and played on the floor of the lounge room with tents made out of sheets and chairs...

Sometimes when it appears to others that you are not lucky... life gives you the gifts of good people about you to ameliorate your condition...and so a balance is struck.
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Wednesday, December 02, 2009

I just scanned in some old photos
from about 1978-80 and emailed them to our daughters. These were taken about a year before Don's accident and I don't think the girls would remember too much of the time before. our eldest remembers bits, but our youngest only remembers the odd image of the house but not her dad before he was injured.
The house we rented was old on the outside but really comfortable inside and close to the beach. it cost us $12 a week at a time when our friends were paying about$ we were pretty happy little Vegemite's. The owners were going to pull it down to build a block of flats (which never seemed to happen - we were there 5 years and it stood for about 3 more years after 1982 when we had to leave.
They told us we could do what we liked to it and we did...every room was painted differently...our artist friend Alan (who died just before Don sadly and was a lifetime mate of his) painted the kitchen all with hibiscus and other tropical flowers...the back bedroom was dark blue with orange stripes.
Remember straw grass matting - everyone had it in those days who could not afford any other sort of covering.
(Melissa 6, me, Alison 3 and Don. )

Polaroid cameras... it was what we had...Don's patiently counting down the seconds it took to develop photos right there in your own home!!!Modern technology!

Don and Melissa on Don's horse Lucky in the huge paddock behind the house. We had as much land as we needed and Don planted rows of vegetables as well as a yard full of chooks, some ducks, cats, and at one time a doggie.
Somehow we managed to feed all of them and us and even tho no money in the bank it was a time when you didn't worry too much.

I made sure Alison got this one as well as she would not remember her dad ferrying her about like this, just for fun... I remember this day and he even put in an old worn out bit of cloth for her to not have to sit on the dirty wheelbarrow - I think it was an old work sloppy joe...or something - he had a big rag bag collection for his work...
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