Ella's child - family stories and other

2012-02-10T22:45:00.002+11:00

Another Moving Day!!!

Ali and Andrew are deciding will they be "good"neighbours or "bad" ones - judging from all the musical equipmentthey drag about it might be noisy - she sings and plays piano and he has a fewguitars and is excellent at whatever style - self taught the pair of them.

Don and the girls had a phrase for me "the woman who gets things done" a family joke - but today I was more "the woman with the van" for all the bits the removalist wasn't allowed to touch - quietly he would have been safer than me but I managed not to break their TV's and other electrical stuff - by good luck more than anything.

A good day but no one is moving much right now.

2012-02-05T18:19:00.000+11:00

Alison and Andrew have discovered "Webber Cooking" When they finally got it put together - we had a long wait till the food actually cooked - although he has it figured out by now. In their rented place there is no backyard shade so he donned the Big hat and we stayed mostly inside - the yard is sparse and comfertless. But finally Andrew produced the nicest roast I have had in years...he is now Master of the Webber. I am going to like being close to one of our girls - wish it could be possible to be near both of them...Its strange after all the years apart to see them regularly. : )

Ali and Andrew putting the monster together on a very hot day.

SOOOOOO hungry

Looks like fun in the almost 40 degrees hot summer sun!!!!

2012-02-05T18:12:00.001+11:00

A wonderful send off last year...
I just came across these lovely photos taken late November 2011. A group I belong to which fights for farmers (and everyone's property rights held a get together for me before I left Port Macquarie. It was the best day. It was at a place called Kindee which is 40kms west of where I used to live, and reminded me of the beautiful green hilly country around Byron Bay. We had a wonderful BBQ - a really long walk down to the head of the Hastings River and then people started pulling our guitars and singing. It was so unexpected. Also unexpected was a German lady I know who started singing Irish songs...the man playing in the photo sang Australian songs from the countryside and one was a love song - I lasted one verse and had to leave the room. Later he said to me "I always get one with that song"

It was a very beautiful day and one of those days I shall always remember. Its quite likely I shall not see all of those people again, but they made me so happy that day and although I had only known most of them for a year through the group, they were kinder to me than many - sometimes strangers well met can become friends even if for only a short time.

Yet was not enough for me to want to stay. I love it here, I know I don't have the beautiful views and all of that but for me it is the people I love who are most important. All else follows. The couple who lived at this place lived amongst the most amazing beauty I have ever seen and although they constantly chipped at each other you could see how much they loved each other...It was touchable.

Saturday Arvo

2012-01-28T15:10:00.000+11:00

Saturday Arvo.
How long before I can listen to the music I have loved since I knew music existed? How many years will it take when the harmonies don't make me break down crying? Any statistics on that? I have trouble listening to anything even new music - its not the words of songs - its what the harmony does to my heart. It actually hurts.

After wars soldiers come back with shell shock or now called Post traumatic Stress disorder - What is it called when the loved ones are murdered out on the streets? No doubt years later the closest will still suffer in whatever way is unique to them. For me I have no doubt as to what I witnessed as Don was killed and no soldier on the front suffered more than he did I can attest to that - it is not possible to endure more than he did before you die. It was/ is that horrible. I read Weary Dunlop's life story (every Australian should read that!) and when he describes the torture in the Japanese POW camps - and the length of time people endured and then were killed - it resonates deeply with me.

But with us it was not enemy soldiers full of cruelty and brutality - it was his doctors and some nurses and a mongrel of a system which takes no responsibility. You can be brutalised, mocked, tortured, deprived of all your rights, kept filthy, ignored until you die in our so called health care system and no legal body in this country will stand up for you. People you know wish you would get over it soon and you can tell because its over (as was the war) and those untouched don't want to know.

So please anyone out there how long till the sweet harmonies I have always loved in music don't destroy my day? How long will it be that I can understand that Don no longer suffers and is free of all this shit? For me it is so hard to remember the thousands of good times we had because when i do laugh or joke about some memory, moments later I see his face and those beautiful loving eyes are filled with pleading for the killing to stop. He knew all the time what was going on and sometimes I wish I thought he didn't know.

Part of the reason I moved from my lovely home at Craggy Island was that he was everywhere and nowhere - but there he was happy - then my mind would travel unconsciously to the horrors that ravaged his frail body and killed him.

So here in my new home a long day's drive from my old one - I couldn't understand why I no longer "felt" anything. Then today I put some music on - I was gone - a mess on tears. Maybe the healing will come when I can bear to put it on every day - but that would mean crying till I can't see, can't breathe properly. I don't think I can deal with this, its just too much, to not be able to have music as a comfort and inspiration is to deny someone like me breath.

People untouched cannot understand and that's not their fault, I am pleased for them. Who would wish for the knowledge I carry of the pure evil the health system condones? I do have trouble with those who say or imply that it couldn't have been as bad as i witnessed and had to go public in the news locally to counter that. There were people who gossiped that I was in it for the money when I wrote my book - a process that saw me spend close on $50,000. Including that I have calculated I spent $100,000 fighting for justice for Don's medically caused killing. I feel so much older than I am now but only five years ago I felt I would live forever.

The cost has been so high, health wise - but to have music taken too... One day when I am very old I hope because I do want to live this life to its rich end - the music will make me feel as it used to do.

All I can say is Father forgive them because they do know what they do but they go ahead and do it anyway and imagine there will be no consequences. What bigger crime can there be on this beautiful planet Earth than for doctors and nurses to kill patients and then to cover it all up knowing they can rely on week arsed politicians to give it all the rubber stamp? Adolf Hitler would be proud.

One day I will be able to listen to music, when the damage is lessened by the passing of time

I owe it to the couple we were and no doubt will be again in the big hereafter.

I owe it to these two who carry the best parts of Don and I.

Mostly, most days I am a happy enough little Vegemite - but sometimes you just have to "feel" something real again and the music I had to turn off sure hit me in the heart with a thump today.

2012-01-24T11:37:00.002+11:00

Its all coming together -
but it'll be a cold day in hell before I do this again - and where did all this STUFF come from?
Finally have the computer set up properly and a keyboard i can see to hit the keys on - my youngest is moving in about two weeks so we are helping each other - she did all the tech stuff here and that was a real Godsend.

2012-01-13T10:24:00.003+11:00

I move in on Monday!
Its been a long haul...but I can't wait. Its been lovely spending time with the kids, but you need your own spot...and so do they. I am about to do the final inspection. No doubt by this time next week there will be heaps of photos and hopefully all will go well - that is the truck with my almost 80 photo albums won't crash!!!

2012-01-01T16:03:00.004+11:00

A really lovely New Years Night
The first one spent with others since 2006/2007. Don and I were usually well asleep before but then seemed to wake up minutes before to take it in together and then phone calls from the girls would come from whichever venue in Sydney or wherever they were. I was happy like that anyway as when we were kids our parents and the whole town was asleep and New Years Night was no big deal at all.
Last night I was with my youngest and her husband and at about 9.30 we walked to few blocks to a spot at Saltwater Coast at Point Cook where you could see across Port Philip Bay to the fireworks...a long way away but still really good. It had been a hot day but the breeze was cool. Then again we went at midnight the same for the midnight ones...it was amazing, out of the darkness came small groups of people, most who were not here the year before as is a new housing area...was sort of good to be amongst such a small crowd (thirty or so) a few drunks, a few dogs , a few kids. What I like about the area I am moving to is that in summer the evenings are so long people are walking about well after tea time...whereas at home as lovely as it was it got dark and was really hard to go out and then come back to the empty place by myself. I was fine if I was there but coming back was getting harder and harder.
Sure I will miss the place and when I imagine it I am brought to tears...but were someone to say "you have to go back to live there" I think I would lose the plot as two of my "loving brothers in law" (ex as far as I am concerned...claimed I had after Don was killed. Funny how they knew seeing as I hadn't seen one for decades and the other had all the sensitivity of a bull in a china shop when Don was alive and when he was dying.

Today its really hot, tomorrow will be over 40...but its NOT HUMID!!! and that is excellent.
Have a happy new Year and hopefully this year will be the best you can hope for.

Some Chrissie Photos

2011-12-30T23:36:00.001+11:00

Some photos from Christmas...
Plenty going on but will have to wait till I move in...sorting this even out for a technomoron such as i has been a feat. I move in16th Jan - a all over the shop till then

Melissa and Alison with their new Knuckle duster purses!!! Tough as!

My sister and me

Melissa and Me

Ali and me

Ali and Melissa

2011-12-04T13:19:00.001+11:00

I am reading posts and keeping up but not easily able to post much myself here as not great access to computer while I am travelling down to Melbourne. Of course had car trouble so am staying longer now in Sydney till I get tyres and oil sorted. I should be down there by Thursday now having a lovely peaceful time with my eldest daughter at her place - its a cold lazy Sunday and I need it as am sore physically and emotionally from the move - felt so tired afterwards I thought I would never move again - but gradually am recovering.

2011-11-25T19:27:00.001+11:00

These are some of the rooms and outside and on either side and across the road are the most amazing gardens of roses and other

2011-11-25T17:45:00.001+11:00

It looks old but has modern plumbing etc and a small yard with plants grass and an out door area

This is the house in Victoria that I am buying. It is not huge, much smaller than what I am used to but it is just right

I got the house I wanted

2011-11-24T15:59:00.001+11:00

Found the house and after haggling a bit and back and forth its mine (as soon as I pay for it) The removalists are coming Monday and am going flat strap now trying to sort the mountain of possessions we have accrued over the past 39 years my second skip bin is just about full and am exhausted . Next week I drive down to Sydney then on to Point Cook (Melbourne). I don't get to move in till 16th Jan so will spend a week at each of the girls places, maybe visit two of my sisters (those who still talk to me!) and have a little look about before I have to get back into it. Not able to post a lot of late as there seem to be people coming out of the woodwork now I am going and with organising the legal stuff for the other house and coping with this place - I am just exhausted. Will lose my computer for a month but have a notebook so will keep up. Hopefully by Sunday evening I can show a photo of the house. Its perfect - small but just what i wanted.

Off tomorrow to Melbourne to choose a place to live in

2011-11-13T16:41:00.001+11:00

Off tomorrow to Melbourne to choose a place to live in...will be back 19th and will do a big catch up then - have not been the most prolific bloger of late but shifting 25 years of nostalgia and love and stuff takes it out of you. Hope all are well and will check back here before I move 1st Dec

Moving down Melbourne way

2011-11-04T21:01:00.002+11:00

.The sold sign went up on my house finally yesterday. I hand over the keys 2nd November - was a bit bitter sweet coming home after being at the solicitor's office - went past our old house where we raised the girls and there is nothing there but a vacant block - the old cattle grid is all that remains. We had the best of times even after Don broke his neck in '82 -moved into that house in '85 - we all just seem to put one foot ahead of the other and after a lot of initial heartache it just worked so well. The girls had a different childhood than their friends and they tell me how lucky they were to have had the dad they did. Every single Christmas we would all dress up and enjoy our own "Mackay" Christmas - something that nothing seems to match - but each family has their own depending on the nature of that family - usually meaning if the parents have remembered how it felt to be a child...ie to be childlike and not childish in their love of fun. After 35 years here - the places remain in your head but its the people always who made those places special.

I am not doing so well lately just when I thought grief would lessen it seems to become more intense - grief so much different from "depression" - but then I never really took took time out to just cry and go with it as the fight to get justice for the death of my husband became paramount - now am only weeks away from moving away from where we spent our whole adult lives - its hit with a slam dunk and apart from crying I don't know how to deal with it - a normal death like - I was going to say my Mother's but then hers as well was not normal, not my fathers - think the family may be jinxed that way - no one dies in their PJ's -

So poor Melbournites here I come - I am a real bastard when i get involved with things I believe in - but that's how it is and for some time i hope to stay below the radar...to do some healing - am looking for a home close to my youngest near Point Cook. Sanctuary Lakes and Werribee/Hooeprs crossing but as yet don't know which way is up down there..

2011-10-30T10:06:00.003+11:00

I sent this out to my email list this morning after a suggestion from an old friend of enlisting those I know to put pressure on the NSW Health Minister.

Your help would be appreciated
30/10/11
Dear All,
Please excuse this bulk email but needs must if I am to be able to put any pressure on the Health Authorities in New South Wales to bring about an Independent Inquiry into the death of my husband Don at the hands of Royal North Shore Hospital in 2007. In the past before the change in Government, the leader of the Nationals Mr Andrew Stoner and now Deputy Premier, was very helpful to me in exposing the shocking treatment Don received in RNSH which caused his death which would never have happened had his doctors had a duty of care towards him.
Mr Stoner Andrew helped me to launch my petition in NSW Parliament . The Petition was headed:
“We, the undersigned residents of and visitors to NSW request that the NSW State Premier and Health Minister ¬ begin a full, independent and open investigation into the surgery, treatment, care and subsequent death of Donald William Mackay, as a result of the five weeks he spent in Royal North Shore Hospital between 11th April 2007 and 17th May 2007 (the day he died). We ask that those responsible if found culpable then be subject to disciplinary action. Our reasons are briefly – A RNSH Internal Investigation into Donald Mackay’s hospitalisation and death, signed by RNSH’s Dr Hoyle who in writing, admitted many failures in Donald Mackay’s care; such failures, which we believe led directly to his death after five weeks of unimaginable suffering.“
I collected 2000 names on that petition and it was not a simple “Yes” or “No” – the issues had to be explained and most people were appalled upon understanding the gross neglect and medical error he suffered.
Since the change in Government in March this year, I have written to my MP Ms Leslie Williams and as well to the Health Minister Ms Jillian Skinner asking for this Independent Inquiry. Ms Skinner replied to the Port Macquarie News 3rd August 2011, a month and half before I had her written response,
"Mrs Skinner said there would be no further inquiry into the case. The matter has been investigated by NSW Health and the HCCC, and unfortunately there is nothing to be gained by opening this case for further investigation," said Jillian Skinner Minister for Health."
I would like to ask that you might be able to take five minutes to write a short letter to Ms Jillian Skinner MP, Minister for Health and Minister for Medical Research to call for an Independent Investigation into Don’s treatment and death at the hands of Royal North Shore hospital and most importantly the process followed by the Health Care Complaints Commission which allowed that treatment and found it “ all acceptable”. The fact that I had the support of the now Deputy Premier before he came to power but have no support now they have power is predictable but it is not good enough.
I have recently written to my local MP Leslie Williams – She and Andrew Stoner both came to my book “Without Due Care” launches and spoke about the dreadful treatment and outcome which was my husband Don’s death. All avoidable.
I believe pressure needs to be put upon the Government to back up what they supported in Opposition and I would appreciate any help you can give. A simple paragraph would be helpful. If there are issues you are not clear on please feel free to contact me for explanation or have a look at my website www.withoutduecare.com
If you do write to the Health Minister could you as well email me a copy for my records. I thank you in advance.
Her contact details are below,

Mss Jillian Skinner MP
Minister for Health
Minister for Medical Research
Level 31, Governor Macquarie Tower,
1 Farrer Place,
SYDNEY NSW 2000 Jillian Skinner's email northshore@parliament.nsw.gov.au

Without Due Care

withoutduecare.com.au

2011-10-30T09:17:00.001+11:00

My own Craggy Island

A peaceful Sunday morning here. The sun is out and its so quiet. I can't even hear the trucks out on the Highway. The neighbour's cattle are out in my paddock peacefully eating or just chewing the cud - the bird song is just amazing - all sorts. I can see and hear all this from this room and know how lucky I have been to have been able to live here for this time. All going well I have a little over a month left here before I move and although I will miss this place, not the town so much but out here - I am hungry to move on - I have beautiful memories here, also some terribly sad ones as Don struggled so much health wise in the last years here - a good day for us was a day when we both woke up alive - we had near misses almost daily in the last year. You know when its time to move, because as beautiful as it is, I no longer look forward to coming home. There are many beautiful places but have learned that compared to the people in your life who you love, husbands, parents, children, friends, places are not so important. Its the people who make the difference.

Cuss and Tiger

2011-10-21T10:27:00.001+11:00

UNBELIEVABLE

Some of you know about my two cats, Cuss on the left and Tiger on the right. Cuss is a bit of the moody one - about 10 and poor Tiger never knows how she's going to be. Both were dumped cats but Cuss came here first. Tiger is a lot younger being about three.

These two NEVER sit close without Cuss hissing and spitting at Tiger. Tiger is like a big silly dufus of a kid and just wants to play with cranky.

I was on the phone yesterday morning (they act up usually when I am on the phone) and I looked out through the window - here they were both close together watching me balefully - it was cat creepy - but of course as soon as I got the camera on them they turned away.

Our family knows that this is about the only photo we ever will have of them in sync and not running or sending fur flying - maybe things are changing though.

2011-10-21T10:14:00.000+11:00

This is long - needs must - it is a response to the NSW health Minister's disgraceful decision not to investigate the Health Care Complaints Commission's (HCCC) inept investigation of my husband's medically caused death in 2007. I also asked for an Independent Inquiry into his death as mentioned in a petition launched by the now deputy Premier of NSW Mr Stoner - that is also denied. Things change when they get into Government

13th October 2011
Ms Jillian Skinner
MPMinister for HealthMinister and for Medical Research
Level 31, Governor Macquarie Tower,
1 Farrer Place,
SYDNEY NSW 2000
Dear Jillian,
I am in receipt of your letter dated 29th September 2011. I am sorry to say that the response is not good enough. Whilst in Opposition I was given excellent support by Mr Andrew Stoner and as well Mrs Leslie Williams who is now our MP. Both of these supported me by helping launch my book which outlined the series of avoidable medical disasters which led first to Don’s shocking, brutal and prolonged suffering and then his death. Obviously they thought that there was something terribly wrong in what was done to Don and wrong with the investigation. Andrew Stoner called it “disgusting” when the HCCC claimed in their letter to me that Don wouldn’t have felt the pain of having his lungs suctioned at ten times the required value for 22 hours, “because he was a quadriplegic”.
The HCCC's interpretation of an "investigation" is clearly different from any other. There was no investigation for there was no outcome. Did the HCCC report Don's investigation to the Joint Parliamentary Committee on the HCCC? If so, when? Where is it in the Hansard? What recommendations came out of that “investigation” that will ensure not one other repeat occurs? The Internal RNSH investigation found multiple areas of fault and made a series of recommendations which hopefully went some way to protecting the next poor vulnerable disabled person who travelled down from the country, but the HCCC went totally in the other direction. This is the same body, paid for by taxpayers who allowed Dr Reeves to practice when he should have been de registered and jailed years before. That in itself should be enough to bring their efficiency and neutrality into question.The medical ignorance evident in their final letter to me was breathtaking. Whoever their medical expert was, they had no medical knowledge of Quadriplegia and couldn’t even get the timeline right. It was a real dog’s breakfast.
Recently I had to have routine day surgery. I am a well person and I was given blood tests, ECG and a multiple of tests. I was pleasantly surprised at the thoroughness of the Pre Op care given. This in Port Macquarie Base Hospital. As this was being done I couldn’t help wondering that if only some of what I was receiving had been done for Don how different the outcome would have been. None of these basic Pre Op’s were done in RNSH for Don who I remind you was not an emergency, even though the HCCC for some reason tried to generate a state of urgency to explain these serious issues away. I have to wonder why they would do this if they were acting to investigate. How can the HCCC excuse this behaviour from a Cardiothoracic Surgeon who would have known better? Please explain to me how that is acceptable?
Please read the following quote which was the cover sheet of the Petition which Mr Stoner launched in Parliament in 2008,“On behalf of Don my husband of thirty-five years, our daughters, and myself, I request authorities begin an independent, open investigation into the surgery, treatment, care and subsequent death of Donald William Mackay. His death was a direct result of five weeks he spent in RNSH between 11th April 2007 and 17th May 2007 (the day he died). I request that the Cardiothoracic surgeon and team, the Spinal Ward doctors and nurses who ignored my husband’s worsening condition receive disciplinary action because of their negligence, which led to Don’s first Respiratory Arrest and inability to come off ventilation. ICU and Cardio Thoracic Specialists who withheld full disclosure of his condition from us should receive disciplinary action. Their non-disclosure led to Don being subjected to unnecessary torture, which lasted five long weeks. I request that the filthy practices and deplorable conditions he endured without choice in ICU be exposed. Legally, ethically, why and how are the medical practitioners protected from criminal charges?”Andrew Stoner was supportive when we launched the Petition outside Parliament House as well so I took it that he would have the support of the Coalition in this. I am disappointed that now the Coalition is in Government that support is not evident. I would like to know why the change?
If you as Health Minister accept that all Don’s treatment was acceptable as the HCCC claim then you must think that the dreadful treatment Don received and the covering up of their mistakes is good enough for the people of NSW.
On 11/4/07, Don arrived at RNSH at 10pm from Port Macquarie on Wingaway’s non urgent transport plane. It was not an emergency. A doctor whose English was very limited signed him up for the dangerous and unnecessary surgery within the hour that night (Pleurodesis). This doctor cannot recall what he told my husband about that surgery. We spoke with him later and had to ask a nurse to translate what he was saying. I know it was dangerous and unnecessary surgery because I spoke with Don’s Spinal Specialist after Don was killed and she was shocked he had had a Pleurodesis, as she knew his weakness – she said and I quote, “All that he needed was a simple lung drain and biopsy, and if fluid re accumulated in a few months to do the same again.”
Don’s lungs were not strong enough and a responsible cardiothoracic surgeon would have known this had he bothered to do even the most basic of pre op observations. The next morning as I was driving from Port Macquarie, Don was being given dangerous and unnecessary surgery (Pleurodesis) by the RNSH’s Cardio Thoracic surgeon who just “assumed” Don had been examined, by a cardiothoracic specialist in Port Macquarie? This was not only unprofessional but was gross medical negligence especially in such a vulnerable and defencless patient.
The HCCC say it was acceptable that there was no ECG prior to surgery although Don had Pericardial Effusion (10 months). Do you as health Minister believe that this is acceptable practice for anybody?
The HCCC say it was acceptable that Don had neither blood tests nor any pathology before surgery. Do you as health Minister believe that this is acceptable practice for anybody?
The HCCC say it was acceptable that the Cardio Thoracic Specialist who was also the surgeon saw no X-rays or Scans prior to surgery. (They were still in Port Macquarie Base Hospital.) Still acceptable to you?
The HCCC say it was acceptable that the review by the Anaesthetist is admitted by RNSH to be “limited”. He was not seen before theatre. Limited why? Don had complicated medical problems and required proper assessment. Would you expect even your dog to be treated like this?
The HCCC say it was acceptable that the Cardio Thoracic surgeon had not seen Don before Theatre and had not done a detailed examination. The person who signed him up the night before was not part of the surgical team. No one knew anything about his multiple conditions before surgery. How irresponsible and dangerous was that? Still happy with the HCCC findings?
The HCCC say it was acceptable that Ungraded Talc known to be connected to Acute Respiratory Distress Syndrome (which Don developed) was used. Since his death, they no longer use this. They were aware it was linked to Acute Respiratory Distress Syndrome (ARDS). Why was it used? Was it cheaper? If you are not disturbed by now by the HCCC finding all was acceptable I would like to know why.
The HCCC say it was acceptable that my husband’s right lung which was meant to be suctioned until all the fluid was removed at the gentle suction of 3KPA. Was suctioned (vacuumed) at ten times that value at 31KPA. This was left like that for almost 24 hours and was not spotted by Cardiothoracic Doctors, and the Spinal Unit’s nurses till 8am the next day. All RNSH staff involved are culpable as this was covered up and I did not find out for seven months after Don’s death. They knew what they had done to him and we should have been told. Instead they lessened their observation frequencies, ignored my panic as he got worse, and his lungs collapsed. This was an event Don as a Quadriplegic was never going to survive. Any lung injury is disastrous for Quadriplegics. We consider that this covering up and hoping for the best was criminal behaviour. What do you think? Is this acceptable as claimed by the HCCC?
The HCCC say it was acceptable that Cardiothoracic were ignorant of “Quadriplegic breathing” which makes it harder to breathe while sitting up when there are problems. These specialists ordered him sat up in his wheelchair. He rapidly deteriorated. I begged the Spinal Nurse to return him to bed she refused. He suffered three hours of extreme torture trying to breathe against gravity. He had a Respiratory arrest that night. Why were they all so ignorant of his condition? Jillian I still have the images of my lovely husband struggling to breathe, hallucinating, frightened only to be lectured to by a nurse that he’d have to stay in the chair for hours. If we are on the same page, surely by now you yourself must have concerns.Cardiothoracic should have known not to sit up someone with suctioning of the lungs in progress as this can cause the Pleurodesis surgery to fail and can lead to Acute Respiratory Distress Syndrome. This happened. Why did they allow this? No answers?The HCCC say it was acceptable that the surgeon was irresponsible and did not bother to see that all procedures pre and post surgery are followed. Almost none of the regular procedures were followed. There is no excuse for this? From the moment the specialist laid hands on Don, Don had no hope at all. It was such a huge botch up. All acceptable to the HCCC and any who support their claims.
The HCCC say it was acceptable that Spinal nurses, Doctors and Cardiothoracic were grossly negligent over the next days. He was treated badly as his condition became dangerous. He began to hallucinate and gasp for breath. This was extreme cruelty and shocking for him to experience.
The HCCC say it was acceptable that on the night of the first of his respiratory arrests, he called my name for three hours according to his roommate and they did nothing. They only took notice of him when he was close to Respiratory Arrest. I spoke to his roommate that day and he was really upset by what he had seen Don go through with only intervention when he was close to Arrest – he was ignored all the time he was calling out. I was five minutes away next to the hospital and had given them instructions to call me at any time if he needed me or things got worse. I was only called when he was taken to ICU.
The next five weeks in RNSH’s Intensive Care Unit were horror-filled. Dreadful images to carry, but how much worse for him? I try to see him as he was before their negligence allowed him to be filled with infection, sepsis, fluid and God knows what. I cannot. I see my beloved husband tied and gagged by tubes. Both lungs drowning and full of fluid. MRSA and Klebsiellia Pneumoniae filled them with bloody mucus. I still see him with his tongue being forced painfully in and out, as he reached yet another respiratory arrest. One time he was breathing 50 breaths per minute. He was so frightened and I could not help him. An ICU nurse stood and did nothing. “I think he’s trying to talk”, she said blithely. An ICU nurse!
It went on like this for five weeks. If I feel like I have been in a war zone how much worse for my husband? Is this acceptable as the HCCC claim?
What I have relayed here is sadly for Don just the tip of the iceberg as to the dreadful suffering inflicted upon Don. Finally, he was allowed his wish, which was simply to get out of the filth and chaos, go home and die. Even then, after all they had done to him, it depended on conforming to their demand that the home respirator be taken away as soon as he got home. Apparently, there was not one other home respirator in RNSH or at Port Macquarie or anywhere else in the Northern Areas’ Health Service. So even having a little time to spend with us here at home before he died was denied to him.
Jillian, Don was killed, he didn’t just die. It was a death caused by gross negligence, ignorance, stupidity, arrogance, filth and cost cutting. I should not have to be chasing justice on behalf of my husband, daughters and myself. Those responsible should be prosecuted and or receiving disciplinary action for killing my husband Don Mackay and robbing our daughters of their wonderful Dad. Those most responsible should not be still practising inside Royal North Shore Hospital. It would be better for NSW residents if they were not in the health system at all but Royal North Shore Hospital buries its mistakes with the approval of the HCCC who have turned a blind eye to some of the most outrageous of medical error, medical negligence and cruelty I have ever come across.
I read of medical error in the media and my heart goes out to those involved as I know what a battle they will have if they want to change things and not just be compensated. I do not know of anyone who suffered for as long as Don did and he experienced the worst medical care I have ever come across. All avoidable had they taken care of him professionally. The Spinal unit and ICU were and probably still are a disgrace. The treatment Don received was consistently bad. I can not remember their making any decisions which improved things for Don – everything they did to him from his first moments there added to his suffering and brought about his death.This is not acceptable.
The HCCC’s decision that it is all acceptable is wrong and unjust. I know what we saw and what we discovered and not once have I been proven wrong in any instance. I have to wonder what the HCCC actually exist for and how come they have been not been called to account.
If it is acceptable that in 2007 a resident of NSW, a physically disabled man who has already had more to bear than most of us can have his suffering and death as mentioned all avoidable – called acceptable by the authorities, then there is long way to go before we can call ourselves civilised. If this were any other death apart from medically caused there would already have been justice done.
Nothing I see leaves me with any hope that things will improve. As far as I can see the problems with medically caused death and injury can only get worse because no one is taking to task those who are supposed to investigate with neutrality, not in the adversarial way many of us who have dealt with the HCCC experience. For me the issue is sadly becoming clear, that the life of one frail disabled man is not worth upsetting the Medical Specialists and Health Department. I see nothing that tells me this is not true.

You have suggested that I respond to your letter to Mr Paul Russel from the North Sydney Local Health District, but as I wrote my letter to you I prefer to continue as you are the Health Minister.

2011-10-20T15:26:00.001+11:00

Lookin out my front door
- how amazing is this - It was just pouring pure golden light in through my front windows into the lounge room - I have never in my whole life seen the sunsets like I see here - must be blessed...

I signed the contract yesterday - a really odd feeling - a big lump in my throat nearly threatened to bring me undone but I got control and didn't disgrace myself - at least this person had the good common sense not to go racing off for a box of tissues like so many even before there is a tear - she just sat there and gave me time. The search and pest report are finalised and it appears everything is fine - so...just waiting for them to sign and deposit.

2011-10-17T17:05:00.004+11:00

Pretty sure the house is sold - nowhere near what I wanted but these are the times - a weird feeling sort of an anticlimax - papers still to be exchanged - but agreed on terms - may wait till tomorrow to tell the girls - I think I need to have it gel first -

2011-10-16T14:20:00.000+11:00

Looks like I may be close to a sale. I am going to miss this place very much and I know I will never be able to live anywhere as beautiful as this place, but truth is it absorbs money and money I don't have...needs a family here as even though the quiet is wonderful, sometimes it can just be a bit too quiet. I just need to move as I have marked time too long and need to be somewhere where nobody knows me well.

When we came here in 1976, Don was 26 and I was 22. I must post a story about that and shots of our first 12 a week home and you will be impressed with out 'hippy" van - it was an old - 1950's dodge van which had been the ambo for a small West Australian town called three springs .
Hopefully I will know by tomorrow but until the deposit is down I am not counting my chickens - I burst out crying after the real Estate agent told me but were it to fall through no doubt would shed a few more... its getting so I don't want to come back here and I know Don didn't want me to stay here - certainly not for as long as I have.

2011-10-09T14:20:00.000+11:00

Just back from Melbourne
I arrived home late yesterday after a wonderful week at Ali and Andrew's place - She celebrated her birthday - (by the way Foxymoron - a very happy late birthday to you too) and was pretty pleased with some of her pressies - the shoes came from her big sister - and yes she can walk in them (just) - We really splashed out and Andrew booked us into the Rockpool - (Neil Perry's for those who care - it was excellent but I am a bit of a peasant and not terribly impressed by the names of places and the chefs as long as it is cooked well that's all that matters and as long as I don't have to cook it or wash up - but can't afford too many at that price or I may have to wash up...
Some shots of Ali and Andrew and one of me with an almost empty wine glass - and no I wasn't singing - although I was pretty happy. Andrew made her the birthday cake - the first cake he has ever in his whole life made and it tasted great - he was pretty pleased with himself. Its so good to see the little family traditions being carried on such as the chocolate freckles on the icing. Off now out to Beechwood (near Wauchope) to get my cats back from the cattery -

Thanks Jin

2011-10-01T17:12:00.001+10:30

Off the Melbourne my favourite place this week
My youngest has another birthday this week so am off to Melbourne to help her celebrate - after I clean up hereabouts - a massive wind storm on Thursday which brought branches etc down and knocked out he power from 4.30pm till mid day the next day - but alls well now - no doubt I will have heaps of photos when I come back and the kids are giving me a tour of their new home so am looking forward to this.
Not an interesting post but of late these acres have been taking my every spare waking minute because of all this wild weather

I am so much looking forward to just not being responsible for a short while..
Oh and thanks Jin for your quote about "Apologising"...

"Apologising does not always mean you are wrong and that others are right, it just means you value your relationship more than your ego."
So whats the point of anyone asking for an apology - one should only be freely given without demand or how can it be genuine. But I love how the Irish got around it when the Poms wouldn't apologise to them for 800 years of bastardry - they said "we forgive you" Now that works for me

2011-09-28T18:50:00.001+10:30

Forget any prejudices about Country and Western - I love this - hear it almost every morning about 5am on the radio - there is an Australian Movie with this in it called "Prime Movers" which I am trying to track down - have learnt something with age - not to be snobbish about music - if it makes you laugh, stirs you in any way what soever, be it Mozart, Lennon, Neil young, Melanie Safka, Mick Dagger, Johnny Cash or Louis Armstrong - if it touches you its good n matter what others may think - this makes me smile because believe it true love is like this full of negatives which if endured long enough become positives...thats what i think any way.
http://www.youtube.com/watch?v=F5axlwCBXC8

I loved this one http://www.youtube.com/watch?v=AIlQsRQNIqU&feature=related

and this one
http://www.youtube.com/watch?v=fRb1h989_jk&NR=1

Take it as just fun - made me smile for some reason..old hick that I am

2011-09-26T15:45:00.000+10:30

A letter written about a week plus back trying to get some response from the new health minister - no luck - but a friend put to me the idea that if hospitals took as much responsibility in not covering up as the aviation industry does things might improve rather than get worse. A couple of horrific deaths in the weekend's news.

18/9/11
Dear Editor,
In 1995 statistics were reported that at least 18,000 Australians died as a result of medical error. None of these deaths would have occurred had there been no error. They were avoidable deaths. As well there were over 300,000 Australians injured, many permanently. It is estimated that in 2011 those sad statistics are much higher due to population increase and the general running down of the Australian public health system.

Whatever the reasons for so many tragic and avoidable outcomes, whether it’s too long hours, short staffing, laziness, attitude, lack of hygiene or an unaccountable and expensive top heavy bureaucracy, almost without exception the authorities have to be dragged unwillingly to even begin investigation. Investigation is usually begun by grieving and traumatised relatives who have to, often at huge financial and emotional cost drive any investigation by bludgeoning the authorities with evidence they have gathered order to highlight the travesty of medical care which has injured or killed our loved one.Not one other death or injury in any other “system” inside Australia is treated this way.

Compare this to the Aviation Industry and Authorities. Every single incident reported; every accident and certainly every death is meticulously investigated by the authorities. The pilots and company involved will go to great lengths to find the cause, rectify it and ensure it is not repeated and if death or injury is caused then provide justice and compensation for those killed or injured.Imagine the outcry if over 18,000 people were killed per annum in plane crashes within Australia. Imagine that on top of this, over 300,000 people were severely injured, many permanently in these crashes.

Please explain to me why the deaths caused by plane crashes - or even road accidents – are perceived as more traumatic to relatives than those caused because of the “health” system. The days and weeks of watching those we love brutalised till they are badly maimed or killed as in my husband Don’s case leaves loved ones scarred and traumatised.

Surely the Government, the Health Department, the Health Care Complaints Commission, the Australian Medical Association and the NSW Nurses Association would choose to be at least as responsible and caring as those investigating aviation issues causing death and injury and not act to cover up as they generally do. In 2008 Andrew Stoner, then in Opposition tabled my Petition in NSW Parliament. My Petition signed by 2000 local people asked that an Independent Inquiry be held into the death of my husband Don Mackay as a result of his treatment in a major Sydney Hospital.

In late July 2011 I wrote to Mrs Leslie Williams now MP for Port Macquarie asking for this Independent Investigation. Then in early August I wrote a letter to Ms Jillian Skinner the NSW Health Minister which I spoke about at the NSW Cabinet meeting here in early August in Port Macquarie asking for that investigation and also an investigation into Health Care Complaints Commission’s handling of my husband’s treatment and death. Ms Skinner responded to the Port Macquarie News that there would be no investigation. She told them she would write back to me within the month and respond.

It is now September 18th and I have heard nothing. Nothing leads me to believe that any improvements have been made and that others have not been killed as my husband was, because nothing has changed from what I can see. The same attitudes prevail and that is the crux of the problem. Without honest investigation the death and injury rate can only climb, and the cost to those such as our family is immeasurable.

2011-09-17T13:12:00.000+10:30

Happy Birthday Melissa!
Just back from Sydney and got to spend some time with my lovely eldest daughter.
MMMM Pressies to open - looks a lot but we always wrap every single thing up separately and with much ribbon and sticky tape - maybe to annoy but makes it more fun.

1st uncork the Champagne.

2nd Put the undies on your head your mother gave you???

3rd Put the hat on your head that your mother gave you.

4th have a bit of a top up - its your birthday

Melissa and Chris

Melissa and I - we didn't have a tripod for the camera so had it on books - hence heads at table level.

A happy day with good company and close to my daughter. It is our youngest's soon and will get to be with her on that day...broke but happy

2011-09-16T11:14:00.000+10:30

Back home now - I spent some days with my daughter for her birthday. But have a look at these sunset photos I took just before I left. (click on them to see them better). The whole side of the sky was just drenched in gold - its not often you see something like this from your own back yard and it only lasted for the briefest moment - need to do a bit of a blog catch up which hopefully i will get to this afternoon - am helping a friend move out of her flat - having a van always comes in handy for moving things.

2011-09-07T14:30:00.004+10:30

No Regrets.
I have no regrets in my life at all. There are no major decisions I have made, which if made differently would have affected my life to make it better. I was born under a big blazingly hot, bright blue sky to happily tolerant people. I was able to have time to be myself and loved for this, even my choice to run away from boarding school turned out for the better. I got to know my father in that last year before he was killed. A precious lifelong gift.

And there was the time when I sat above a cliff near Merewether at seventeen so depressed with what I thought was a broken heart that I determined to kill myself but didn’t and hey look at the wild ride that followed – that ride my life, my life with no regrets. I love my life. I love the happiness I feel not because of certain things but often in spite of them. The sun slithers up the curve of the horizon on the new day and despite any darkness the night time dreams may have bent my being down with, this day is new. I am on the right side of the grass. I have a life to live and it’s my duty to this Universe and the God who made it to turn my face towards that sun, walk out in the misty dawn and just be happy.
(aged about 18 - the year Don and I met - glad I didn't jump off that cliff - the car was a Hillman Minx and we bought it for $142)
I may and I do grieve for loss. I may yearn for my daughters to live closely. I may be angry at a useless unaccountable system we live under. I may wish for the light footedness of childhood but in my heart I am happy. I do not have the light-footedness of childhood but I have childhood’s light-heartedness and no regrets at all about the life I have lived up to date.

2011-09-03T09:47:00.000+10:30

The death of my own old man kangaroo.
A while back I posted some photos of a big old male Eastern grey Kangaroo who had taken up position in my home paddock. This kangaroo did not give way to anybody, neither truck nor car nor certainly not me walking about - and I sensed a bit of territorial aggression towards me from him - so was always cautious to not intrude nor go between he and the female kangaroos. Over the months I got used to him and I thin he accepted me although I didn't put this to the test - no matter how cute people think wildlife is it is wild and best left alone. Especially one with claws like this and a good six inches taller then me.

Then about two weeks ago I noticed he was eating grass while resting a lot on his front paws. He seemed to be moving closer and closer to the house and I could see his right paw looked broken. Another big male seemed to be often in the paddock with him - I never saw them fight but I think the old one lost his position. I called Fawna and they were ready to send someone around to put him down (shoot him) but he seemed to still want to eat and until he looked like he was suffering I decided to leave nature alone.

Then he seemed to improve and seemed to be upright more often. One day he was gone and I figured he had been chased away as the other big male was often seen lying exactly where he used to lay down.

On Wednesday late in the afternoon i had a call from the real Estate Agent = she was bringing people around the next morning to see the house - ok by me. I thought I had better have a look about in the sheds etc just to make sure no rats or anything had again invaded - just behind my house (close) there are two lock up sheds and two lean to's. As I got near one of the lean to's that I hadn't needed to go into for a while - I smelt something bad - Inside the lean to was the corpse of my old kangaroo - just becoming rotten and blown up.

I could see he had spend a time in there as the dirt floor was tamped down and scratched - but at least he was out of the elements - I had no idea he would have come this close to a human dwelling - but he must have felt safe there.

Dilemma - what to do? This kangaroo weighed more than many adult human beings and was not in a nice condition - potential buyers coming in the morning!! Luckily a friend called in and offered to tie the poor thing to his tow bar and drive him over into the far corner of the adjacent paddock. I warned him how wet it was over there and likely to get bogged. The smell as he started to drive was incredible about the worst I have come across in my life.

Coming on dark - you guessed it he got bogged only feet away from the dead and smelly kangaroo - nothing we did could free the car - so called another friend with a 4WD and we got out - I was very grateful!

Early next morning I though I could still smell the dead kangaroo so thought I had better check the shed out. I was nearly sick! There underneath where he had been was an enormous pile of maggots, fur and other stuff - the prospective buyers only a short while away! So my garden rake flicked most of it away into the bushes - all the while I am fighting being sick. Still there was a very damp spot in the dirt which stank to high heaven - so all I could think to do was to get a wheelbarrow and fill it with dirt to cover the spot - then flick a few leaves so it looked "natural" and smelled sweet.

Who said women couldn't do stuff??? I admit that no matter how many washes and showers it seemed to take about 2 days before I didn't imagine I could smell it on my hands, in my hair - my face felt horrible - anyone who has dealt with supper smelly dead things will know what i mean.

And it appears that these potential buyers are interested - made all the better because Don liked the husband and used to trade jokey emails - he had been out here a few times. I took straight away to his wife and I hope and pray that this couple do take it up because they are suited to the place and are nice people -something I always hoped for.

And now that I have my yard back - I realise how much I miss his presence laying out under the Macadamia Nut tree, or sprawled near the Lili Pilli we planted over Thorn (the red kelpie). Sure I can actually walk about in the front bit but it was so nice to come out in the early morning and watch him through the sun strobed mist.

2011-08-31T14:56:00.001+10:30

I just noticed this.
In photos of our girls with their Dad; with my sisters and Don and of myself and Don, a huge percentage of the photos taken even going way back to when the girls were younger have someone with their hand outstretched upon his chest. They are not there holding him upright or anything - and when we were having them taken there was no conscious thought of where to put hands - we just all seemed to fling together but someone would have their hand there - and it was only recently I realised this as i was looking though the photo albums (the power was out so had nothing else to do). I would have thought that over the 25 years since his accident Don would have made some comment - its a nice gesture - sort of one of unconscious protection fro someone who was physically vulnerable - but we never babied him because it wasn't our nature and he wouldn't have allowed it because he was first of all in control and am happy to admit that - he organised and i did and that worked so well.

Its funny to note that the older he got (and the less well) the more often it seemed to happen - and although people could see he wasn't all that well Don and I didn't speak about this to anyone. We wanted to kids to have a good life and to come hoe with anticipation not dread that something was going wrong.

2011-08-31T08:05:00.000+10:30

John O'Donohue

http://www.johnodonohue.com/news
Quite a few years ago I came across this Irish Poet and Philosopher and was quite taken by his slant on life the universe and everything. Sadly he died suddenly aged only 52 in early 2008 and his last book as far as I know was a book of verse called Blessings. The Blessings were for every facet of human life and death and as it was soon after my own husband died it really struck a chord. Especially his poem "For Grief". Only yesterday I found this and wanted to share it with you.

The Invisible Sanctuary of Memory

August 28th 2011

“In the existential biography of human subjectivity there is no threshold more creative than that between memory and possibility. Though possibility is always hovering near and experience is the arena where possibility is realised, the future of every experience is still disappearance. Transience makes a ghost of experience. Human life is a threshold where lived experience is continually falling away and vanishing. One of the key questions of identity is: where do these experiences go? As the Medievals put it: Where does the flame go when the candle is quenched? Is there a place where our vanished days secretly gather? Perhaps there is and the name of that place is memory. Experience is the continual conversion of possibility into memory.

While experiences vanish, memory remains. Indeed, the narrative of an individual life is the secret construction of this invisible sanctuary of memory. This is where all the known and unknown substance of our days and nights is gathered and selected until it finds the form of memory. This is subtle imaginative work. Memory is not merely the reception of the raw imprint of experience nor its simple storage. There is a harvesting imagination that works at the heart of memory which searches the lived substance of our days until it clarifies and settles into a form that abides. Almost without noticing it, the individual sanctuary of memory is forever finding its way further into structure and shape. This work continues until the substance of our last hours on earth is received into its deeper lived form. When at last the body falls and the visible life vanishes, the finished sanctuary of memory holds all the harvested possibility.” From an essay titled “Towards a Poetics of Possibility” by John O’Donohue that he delivered in January 2005 at Trinity College, Dublin.

2011-08-22T16:06:00.000+10:30

The other evening Melissa sent me through on the mobile phone this photo of herself and her dad taken back in free and easy 70's (1977)...the doggie was a poor silly dog called Boris - I knew when she sent it through why, without there being any words - sometimes the girls just flick a photo or something representing their time with their dad through - and it breaks my heart - those of you out there who have a good dad - and some aren't - make sure he is loved as much as this one was and make good memories - and dads - be a kid occasionally - kids love it when someone is being a bit naughty especially a dad. She sends stuff like this when she is missing him - and with others you can't keep talking about someone who is dead - people actually get sick of it - if that person were alive they would be included and talked about - for us in our family just being dead doesn't mean you don't get talked about - for better or worse.

Sometimes I wonder did the family that was us split off somewhere and not have the accident - not become paralysed and is somewhere else living a life that went that away. But them in that parallel universe maybe worse things happened to that family - I suppose better the life you know.

2011-08-22T15:59:00.000+10:30

Our "Red Dog" - I am going to see the movie "Red Dog tomorrow - have as you might know a liking for red kelpies and you can see here that our old red kelpie was a handsome one - some say its a bit sad but have at least told me its not like those cutsie doggie stories they usually do - I think I would upchuck of they made a kelpie behave like they usually have dogs do in movies. Supposed to be a pretty authentic representation of outback Australia in the 1970's -
have a look at the trailer - http://www.youtube.com/watch?v=GTExiWzvJlo
shook me up a bit to see this doggie - his eyes so much like out Thorn - barring the white bits of fur ours had - he was the most intelligent dog I have ever known and so easy to train - you only had to show him twice and he remembered - except if a cat came close by - am looking forward to seeing this - they made a few rough edged films in the 70's and 80's but not so many of later years -

2011-08-20T10:28:00.000+10:30

Agree or not politically - these cartoons about our Prime Minister Gillard are very clever and she does lend herself so well to caricature.

2011-08-16T12:20:00.000+10:30

Copperwitch (Jahteh)'s blog post about her grand daughter's formal dress and the big store set by formals for kids in year 12 reminded me of when Melissa aged about 16 had to go to her formal - it was for year 10 - Her dress cost $5 from Vinnies - the gloves also from Vinnies - she did her own hair - and she still wears that necklace thingie - hard to believe it was way back all those years ago, 1990 to be precise - Don took the photos - he'd figured out that even having no hand usage tripods and other ways worked for him and he took some lovely photos...

2011-08-16T12:15:00.000+10:30

Good cop, bad cop

No reason at all for posting this - just looking back at some photos taken in 2004 of the girls playing dressup - they were living in Coogee in those days and I would go down to see them when we could afford to hire someone to stay with don a few days - we always had fun. Still do when we get together. I just wish they lived in the same city still and that we could see each other more.

Just noticed the excessive hair growth in the last one - (underarm!)

2011-08-07T09:47:00.000+10:30

A wonderful visit with my sister ended last night - she is back home now. We had the best of times - a bit bitter sweet really with the last day being an "Open House" for the sale - but at least I get my cats back - here she is down on the floor in the winter sun early morning and the cats are in heaven - another cat in the house as she tried to handle the NSW cold - she comes from hot old Brisbane and needed her woolies - but here in this spot in the house she was in her element - Tiger and her had some fun but Tiger was not amused at her style of play - the eyes have it - it was as if Tiger was thinking - "one day I will get my revenge - I know how to wait". We went to the local wineries - the beach - the shops...cleaned the house furiously - packed - drank a little - ate prawns - and took tons of photos. Veronica has been my most constant visitor since we moved here in 1976 - and so many memories of wonderful family gatherings we both carry - the numbers diminishing year by year. She took the lovely shot of the kangaroo crossing the paddock in the late afternoon.

2011-08-04T07:22:00.000+10:30

Port Macquarie News 3rd August 2011 -
Click on the pic if you can't read the writing - I was amazed that the health Minister told the paper there would be no Inquiry before even responding to my letter to me - must be the way they do business these days

and my response for the PM News

Dear Editor,
I would like to thank the Port Macquarie news for excellent coverage in today’s (3/8/11) paper titled, “Quest For Inquiry” which explained my request to Jillian Skinner NSW Health Minister via our local MP Leslie Williams that,
“the NSW State Premier Mr Barry O’Farrell and Health Minister ¬ Ms Jillian Skinner instigate a full and open investigation into the preoperative treatment, surgery, medical neglect and subsequent death of my husband, Donald William Mackay, as a result of the five weeks he spent in Royal North Shore Hospital between 11th April 2007 and 17th May 2007 (the day he died).”
I was hopeful that Ms Skinner would notify me about her decision not to hold an inquiry, rather than my finding out in today’s Port Macquarie News. There has been no communication whatsoever between Ms Skinner, nor anyone from the Coalition and no discussion about my request for an Inquiry, just a blanket “No” via the media. It would benefit Jillian Skinner as well as Leslie Williams in her new role as “Chair of the State Health Care Complaints Committee”; the very body who declared the dreadful treatment my husband received “acceptable to speak with those who have genuine complaint about the HCCC’s bias.
Those who have a relative with severe disability such as Quadriplegia or Cerebral Palsy are afraid of leaving relatives alone whilst in hospital as often there are mistakes made, leading to complications, as in my husband’s case death. Many relatives sleep on floors or in chairs rather than leave their loved one. But finally you have to sleep.
In a truly civilised society those who are frail and aged or disabled would be treated with care by all of us – not seen as someone who’s use by date has come and gone – that way is savagery. My husband Don was treated as someone who’s use by date had come and gone and it is my duty to he and others in his situation to do my best to ensure that the system that allows and covers this up is changed.

2011-07-31T11:25:00.001+10:30

My sister is a visitin' - and house inspections/ open house. Will catchup in here when I can - enjoying myself as I always do when she comes a calling -as well my medical tests all came back clear after the surgery so that is a big relief

2011-07-24T10:16:00.000+10:30

You will have to click on this to be able to read it.
A friend I went to school with way back in the late 60's let my old home town paper know about my book and they ran it as a "Give away" in last week's paper. I didn't have to do anything - I was so pleased and suprsed. Its not often that you get something like this with no effort. Just thought to share the article.

2011-07-22T19:43:00.000+10:30

Back home all safe... I hope.
Made it through the medical system and still alive - have to admit to many tears while waiting in the trolley - not because I was afraid but because I could only imagine what Don was feeling as he was wheeled through doors like this and saw faces looking down at him - for me they were kind caring faces - as they should be... for him they were not. They didn't care less what was done to the frail vulnerable quadriplegic man who's life was in their hands and they showed that over and over. Not to worry it will all get sorted out in the great wash up. I took some photos lately about the place. We had a frost the other night and until about 8.30am the ground was white and so beautiful...the air was smelling so clean and everything had an amazing feel to it although a bit chilly. I am really going to miss my "Craggy Island" - but were I told tomorrow i was not able to move I would be really down so this is the right thing to do. To what I go forward to I have no idea but hey, when I was a teenager this would have been seen as adventure and I did not have a dollar to bless myself with. the Real Estate people were to come out here to take photos today but it was raining so they cancelled - not so good to take photos in the rain - so when the sun came out just for the moment I took these and they were happy for me to put them on a CD and bring them in so they could at least get started - these at least are not artificially widened as too many real estate photos are - we have all seen those! So took some nice piccies. In town I ran into six people in a row who i had not seen for ages and no doubt will never see again - one of them a bit of a political enemy came to me and just hugged me - so unexpected! The others all showed extreme kindness - it was bizarre. I came home physically and emotionally exhausted - but the tiredness could have been because of yesterday's surgery. I will get the results next week - crossing fingies and toes.

2011-07-20T18:57:00.000+10:30

Big day today!
I signed up with the Real Estate Agent today - a bitter sweet moment - some private tears thats for sure - Its like I am happy to leave here - the town itself has not been a kind place really - I think too many thought I should just cop it sweet the killing of my husband - but they were only the people who did not know and sadly it is mainly the more "professional" people in town who are like this - I have had too many who would once sit down with us and have coffee in town walk past me, ignore me, - but I usually step right up in their faces and Say a bright " hello" which makes me smile because I can see how it disconcerts them 0 in some way I feel and I know its not my imagination - I have stepped out of the "respectable widow" role and am seen as a shit stirrer..a role I relish because it is the shit stirrers who make change happen - and its not easy to be in this mindset -

Tomorrow I have to front up to the Port Macquarie Base Hospital for day surgery - its exploratory - as you can imagine I am sick in my guts about this after Don's last time here when they sent him down to Sydney with inadequate notes which exacerbation what was done to him - but needs must.

Its simple stuff I know but it scares me more than you can imagine - to be in their hands, unconscious - to have to trust that the right things will be done - wish i felt lucky but time and circumstance have shown me we are not "the lucky family".

Feel like a big sook - have a taxi booked already and a friend who will spend the night after with me so am lucky - the damage done out of what was done to my lovely Don runs so deep and as I pack up my house/ my life - as I go back into the world that killed him I realise how damaged I really am. And thats whats left when those of us who see those we love abused and killed in the medical system deal with. There is not body to care about this. There is no counselling for this. Nothing. Those who have had rellos killed can hopefully access some help but for those of us...over 18,000 in 1995 who have rellos killed by medical negligence there is nothing at all - but go home and go on - I figure that by now 16 years later the figures of those killed is much much higher - and add to that the hundreds of thousands of those permanently injured - you can't even contemplate. If this many planes dropped out of the sky due to pilot negligence it would be a national disgrace - It Is a national disgrace...but protected and submerged because there is no system of honest and open investigation - much needed and overlooked - No one wants to tackle this issue.

I think my home will sell quickly - it is so lovely, unique and peaceful out here. When I come out of town to here its almost as if a sigh of peace descends upon me as I drive through the gate - I just hope people who appreciate this will but it.

2011-07-16T10:41:00.000+10:30

My friend Sue's Son

This was how I heard the news of Sue O’Reilly’s son Shane’s death. My heart broke for her and the family because they also lost their Dad and husband in 2006 – a special family who gave and gave and gave – without complaint. Sometimes more is asked of some people than one can credit and those rare people give more back and you can feel the love around them – it is this way with this wonderful family who I got to know when Sue (a journalist as well as a full time carer) took on the job of editing my book and then came to the book launch in Sydney.

Shane only completed year twelve a year back but his health had worsened in recent times. He originally had his condition caused just after birth by contracting MRSA (Golden Staph) which caused the brain damage which caused Spastic Quadriplegic Cerebral Palsy. Please watch this 7.30 Report on Shane O'reilly and his family.

http://www.abc.net.au/news/2011-07-15/deceased-mans-family-calls-for-disability-reform/2796990

Sue worked hard alongside her children Jordan, Laura and Shane to better things for disabled in Australia - a badly neglected area.,

Sue was instrumental in creating the push for the National Disability Insurance Scheme NDIS and in this

http://www.fightingchance.net.au/ her son and daughter are on the Team page

http://www.fahcsia.gov.au/sa/disability/pubs/policy/way_forward/Documents/national.htm

2011-07-10T19:36:00.000+10:30

Back home again

Some photos from Bondi and the Queen Victoria Building

2011-07-03T19:38:00.004+10:30

Here is the actual book review.

http://www.newdawnreviews.com/healing-arts/without-due-care-an-australian-hospital-tragedy - and excellent it is

2011-07-03T17:12:00.000+10:30

It was just so very beautiful out here this afternoon just before sunset. Bit of a chill but some magic in the air I felt.

2011-07-03T16:11:00.000+10:30

Finally I gave away Don's wheelchair - it was very hard because he was in it for so long - but then i reasoned that he didn't love his chair - it was a means to an end and someone else will get some quality of life out of it as these days disabled people are treated like crap by the government and wait years sometimes for chairs and mobility aide - but hey.. we need that darn stupid soon to be outdated NBN broadband - think how many people suffering isolation because they haven't got a wheelchair, or can't afford a decent amount of care...garrrgh! If we were civilised these would be at the apex of the triangle of needs.

I met another long term Quadriplegic, yesterday when he and his wife came to pick up the wheelchair – He looks as tired as Don used to do and guess what! His Doc said maybe you have “Sleep Apnoea” (thats what they tell all Quads who are tired - thats what they told don and another from over near Scone -and that ignorance contributed to their deaths - I told him to post haste ask for an X ray to check the lungs – I felt so much for him because I can see how tired he is and I know that look. Hopefully he can get decent treatment.

I went out to Wauchope cemetery today as it is Don’s 61st birthday tomorrow but I will be away seeing the girls for a few days – it is so peaceful and beautiful a place...Just as I was about to leave, feeling sad – a tiny little grey bird came and sat close on the next headstone and just sat there looking at me for minutes – Don loved birds and planted trees that encouraged them – I know it was just a bird but sometimes I wonder. Mum died on the same day 4th July 91993) and we were close as she was lovely (lucky me) but is not a day to be on your own for...so the three of us and husbands will be together - didn't plan it - it just happened

Now i have decided to sell and move to Victoria the house seems to be showing me how lovely it all is. I will never have a place as peaceful and beautiful as this - outside the long blue shadows rest upon the paddocks away to the horizon and there is a feeling that there is something more here other than land and grass and sky...

but I just can not do another winter of long nights - can not be apart from my family much longer and can not really afford the upkeep of this lovely place of healing.

Some shots -
1. My favourite thinking spot at the table
2. The back room with the seldom used exercise bike - what was i thinking of?
3.Don's office spot and his computer still works - Brownie might see her "Aunty Jack" promo up there on the wall - it was our theme song along with a few dozen others
4. the view out the bedroom window
5. and out the bedroom door -
Its a house of windows and light.

2011-06-28T15:01:00.000+10:30

"Without Due Care" book review

I just bought the magazine at the newsagent's yesterday - and the reviewer has done an excellent job. Has to be just about the best review I have had to date and I am so pleased with it. I have it on pdf - does anyone know how to add a pdf here? In a couple of days the whole review will be available on line and will add it here

2011-06-26T10:48:00.000+10:30

Melissa took this late Monday Afternoon before she left - Its the clearest I have had done for a while and when i got over the shock of the extra throat wrinkles I had not noticed - the plethora of lines around my eyes!! That my eyes are about half as open as they used to be...well we did get our old Blue Roan cocker Spaniel's eyes lifted so she could see - may have to do the same here.I realised how much like Mum's side of the family I was becoming - and its okay - You can't be 57 and look 40! I don't mind getting older really - and would not go back to my youth for all the tea in China - I did some stupid things back then as we do when young and that i survived is nothing short of a miracle -

But as well this week I passed Certificate II in Business Management and will pick up Certificate III at TAFE when I move to Victoria - unless I win the lottery!!! Its the first bit of paper I have received since my School certificate in 1970 - so am pretty pleased - but the teachers did coax us along which was appreciated. The nature of exams have really changed since the 70's - There was no multiple choice and you either knew it or didn't and had to really study - especially in weak areas which were for me Maths and French (ugh!).

I had a skip bin delivered yesterday and am starting the massive job of cleaning out the sheds which I haven't done for years - then get the house valued and go from there. While I am really looking forward t a new beginning in Victoria, no doubt the place looks more beautiful as I contemplate the outlook, as if packing it away in my memories. Its been a really healing place and I have marked time here since the book was published - I think things happen when they aer meant to happen and its up to yourself to take any opportunity that seems right, and then don't look back too much. It is going to be really hard leaving the memories of my young adult life here, the children and Don - the horse we had - a taffy one called lucky whop got hit by a car, the dogs Boris, Jedda and Thorn, the cats so many we had over our forty years - but the two i take with me will represent them all I feel. Cats are like that unlike dogs.

2011-06-26T10:02:00.000+10:30

A visit from my eldest and her husband.
Last Saturday Melissa and Chris came up for a visit which was so good. They were previously coming up to be with me because I had to have some day surgery, and they know just how I feel about surgery after Don's surgical botch up. But the surgery was cancelled and i thought they wouldn't come but they did. its been a long time since any family visited up here. They just wanted to spend a quiet time after their dreadful time this year and thats what we did - nothing much for three days.

The photo of Melissa and Chris holding the number "11" sign has significance to our family - every second time we go to a coffee shop, pub or whatever we get the number "11". It comes from our home video of "Picnic at Don Rock" in which number "11" featured - and from then on it seemed to crop up with significance. More often when we are gathered.

And in our family 17 seems to be unlucky. Chris had his leg removed 17th March (St Pat's Day), his father died 17 April, Don was killed 17 the May and my father was killed 17th June - and on it goes. Whereas 11 seems to bring good things. Not foolishly superstitious but it just seems too often these numbers figure.

We spent time in the winter sun, went out to the cemetery - some tears there for Melissa, had prawns for lunch from the seafood place nearby, watched "The Black Donnellys" series and Russell Brand's latest drank some lovely Cask Shiraz, then had a dry night!! Lots of hugs and talks, and then on the morning they left, I had to leave before them as TAFE before them... as we had exams on. We sat up and had breakfast, some lovely hugs and a few tears and then I was off. I admit to some tears when I returned home that afternoon and no one was there. Melissa had changed the sheets, and cleaned my house...I was amazed - as she had a long trip ahead of her and a lot on her plate right now until Chris is more mobile. I loved having them... and Melissa said it was lovely to be home

2011-06-26T09:20:00.000+10:30

A few more wet weather photos from Craggy Island - I was able to get out finally but sort of enjoyed my isolation - As the clouds lifted and the sky returned to blue again, and the sun shone the world out here became like a paradise of birds and light. There were two black swans here for a while something I haven never seen out here before. I managed to snap one or two photos of them - but only from a distance - they were very flighty so I held back as I didn't want to scare them..

2011-06-16T09:25:00.002+10:30

Back Feb 2009 I posted similar to these

- this is my driveway and that white thing in the centre is my letter box - hopefully rain stops today or I won't have a driveway to get out of... at least I have cat food left (most important) and vino also important. I could drive through but the water is brackish due to the intermingling of salt and fresh water and won't do my precious van any good - I did go for a wade in my gumboots and its up to my knees - hence the gumboots filled up - a little chilly but good fun actually - my garbage wheelie bins were floating down near the letter box so had to take them to higher ground (out on the road) - I will retrieve the floating garbage when I am sure I won't fall into a pot hole. Thought to take my mobile out with me but was afraid of dropping it - so having no pockets in my clothes- needs must and human beings are adaptable. I am hoping it will all go down before Saturday as once again Melissa and Chris planned on coming up - last time it was an exploding tanker which stopped them on their drive up - just have to hope that the highway is cleared by then. I was really looking forward to seeing them the first time and now after being isolated for a few days am hungry for their company. I like my own company when I choose it but it is palling a bit now. So many up here have had houses flooded and equipment damaged - so I am one of the very lucky ones. The Pacific Hwy near Kempsey is planned to be closed for 6 days such is the road base damage.

2011-06-15T11:57:00.000+10:30

No Tafe for me today
The road into town is flooded - and more rain expected My own road out to the access road is slightly covered but no point in using it as it leads nowhere but to the blocked road.
The first photo is a paddock and usually dry - I actually saw two swans out there this morning and I have never seen swans any where near the mid north coast of NSW. They were swans and were a dark colour.

Some Kangaroos unconcerned by the water and yes i know I have a paddock full of Fireweed - it hasn't been dry enough in there to get a slasher in for ages

And here's my clothes dryer - costs nary a cent but it is very slow and takes up a lot of room

2011-06-14T23:46:00.001+10:30

Its flooding here - the ferries are out the roads are out and tomorrow if the rain doesn't stop I will also be out - out of town and other things - not to worry - but this afternoon when I came back home to my street out of town a tree was fallen down and although the rain was a pelting down the neighbour offered (when asked) to help me move it - in the melee - moi fell down splatt full force on my bottom in the mud and I mean mud as in a mud fight type of mud puddle...

2011-06-13T14:43:00.000+10:30

Random Thinker inspired this post ( http://whyareallthegoodblognamestaken.blogspot.com ) with her camping photo taken some years back in which behind her and unknown her husband look set to swat her with a fly swatter. It reminded me of this set of photos taken 24 years ago on my 33rd birthday as I prepared to cut my cake - the first photo is as it should be but

I was greeted by "smiles" when I went down to the Chemists shop to pick up my photos and soon found out why - I had no idea and thought Don was being affectionate - a tappin me on my head - Melissa had just reached 13 and was doing her best to look cool or sophisticated in the photo a look she wore for the best part of a year and which thankfully she grew out of. Alison was at that lovely uncomplicated age just before the hormonal tribulation begins about 12 in our family. Don was 37 and I thought I was so grown up which I was I guess having a 13 year old and 10 year old...It seemed no time between then and now and I still clearly remember my thoughts ans self at that age.

2011-06-12T13:35:00.000+10:30

Decision made.
I have been thinking for some time now of moving - we have lived here since 1976 and somehow got stuck here. Its not where I want to live my life anymore and feel like I need to see and do new things. The big issue for me was where...both girls are settled in their respective areas - and i planned to move down and live near but not too close to one of them - couldn't choose as i love them the same, but I love Melbourne much more than Sydney.

With the health issues which gave me a fright I came closer to a decision but just couldn't make it. Last Friday i went to the local hospital fro a Pre admission Clinic - as I have to have some surgery soon - (only day surgery), Turns out my ECG is abnormal and they won't do the surgery till I see a heart specialist - it is to do with the electricity in the two lower ventricles. For a long time I have had an unpleasant fluttery soreness in my chest and have told GPs about it but their comment were basically "Stress" or "anxiety" - this has been for quite some time now. I asked the anneathiatist (never can spell that bloody word) would what I was feeling relate to the abnormality in my ECG and he said yes - so after all this time and with what our family have been through with slack doctors - they do it again. My Mother dropped dead at 66 from a massive heart attack - the result of heart disease she has had since her early 50's - and I told the two GPs I went to the family history - just to be fobbed off and treated like some sort of hypochondriac - They are bloody hopeless.

At least I am onto it now - and have the appointment for next Monday - and if needing treatment will do it - you don't muck about with heart issues nor BP issues.

So made my decision and once I get the health issues sorted - I am moving down Saltwater Cove way on the western side of Port Phillip Bay - I feel now I can have some sort of direction - and something to work towards - as this place although beautiful costs too much for me to keep, and I just feel like a new start. Also the girls were concerned that something could happen here and no one would be close by - as it turns out I am following family history re heart issues but these days so much more can be done to control these things - better to know than not to know.

But as well when I think about it, Mum also had too much stress in the years before she developed hers. Our dad was killed by a drunk driver when she was 42 and had four of us still at home. The next years were awful for her as she had to keep going while grieving dreadfully - you see we were lucky in that Mum and dad really loved each other - so the death was harder. I don't think Mum ever really fully recovered. In what happened in the months before Don was killed and in the four year fight after, I think issues which may have not developed for another 10 years got a bit of a shove along...

I have decided that Don would not want me to keep fighting now - enough is enough and life is for the living. I have done what I could and who knows somewhere along the line the book may hit someone between the eyes and change may come - hopefully before many more die in the manner he did.

I feel so much at peace with my decision - and will continue on with TAFE so I can be "qualified" for something - need that slip of paper - but work towards tidying up the fences and paddocks, mending any glaring faults and them when ready put the house on the market. Sell it hopefully - put furniture in storage and find somewhere else in my own good time - something I wand and can afford with hopefully a bit left over to cover the move and those expenses.

Sometimes you need a big fat wakeup and mine is that its the people I love and who love me who are of paramount importance to me - everything else is just temporary.

2011-06-04T15:36:00.000+10:30

After reading Andrew "High Riser's" post about poor old penny Wong MP receiving an "meouw" call in Parliament the other day and listening to her pretending to be outraged - I dug into the Paul Keating (ex PM) from Bankstown's treasure chest of insults and found myself wishing for some of his argy bargy instead of the weak ineffectual posers we have in there today who are so easily hurt - what about how hurt the Australian people are these days -

There are websites devoted to Paul's http://www.webcity.com.au/keating calls but this first one is a favourite:-

On Wilson "Iron Bar" Tuckey (Liberal politician):"...You stupid foul-mouthed grub."
"Shut up! Sit down and shut up, you pig!"

"You boxhead you wouldn't know. You are flat out counting past ten."

On NSW Liberal, Rosemary Foot:
"I will be ripping her into shreds...she can go and shoot her big mouth off in the Supreme Court. We'll see how she goes there."

On Former Labour politician, Jim McClelland (over the phone):

"That you Jim? Paul Keating here. Just because you swallowed a f***ing dictionary when you were about 15 doesn't give you the right to pour a bucket of shit over the rest of us."

“The Leader of the Opposition is more to be pitied than despised, the poor old thing. The Liberal Party ought to put him down like a faithful dog because he is of no use to it and of no use to the nation.”
- On Andrew Peacock

“We’re not interested in the views of painted, perfumed gigolos.”
- On Andrew Peacock

“It is the first time the Honourable Gentleman has got out from under the sunlamp.”
- On Andrew Peacock

AND while Penny Wong is expected to be all sensitive over being cat called how about this from Juliar

PRIME MINISTER Julia Gillard tried her hand at black comedy yesterday, describing Opposition Leader Tony Abbott as ''the love child of Donald Trump and Sarah Palin''.

Seems to me the blokes can take it - so should the women - if thats how they all behave while being paid by my taxes - one in all in - maybe they could take a leaf out of the Japanese parliament and go on to fisticuffs - They are a real neamby lot in there with nary a backbone amongst them all. Throw a cat call at a female and the media goes crazy and these apologies love it - they think it makes us like them more, that they have been insulted because they are women -

2011-06-04T14:07:00.000+10:30

These are Paper Bark trees (I think) and they are amazing to look at - the patterns really draw you in. The second one looks for all the world like an agonised face trying to get out -

And this has to be the biggest cow plop I have ever ever seen - it dwarfs all the others and I almost trod in it as I was looking through the camera lens.

2011-06-04T14:01:00.000+10:30

A home day for a change.
It feels like weeks since I have had a whole day at home and it is certainly needed - just to stop and step back from the world and not have to do or be anything - its heaven. I haven't taken a lot of photos of late and went around the paddocks this morning with my camera

Nothing is straight in my place I have crooked fences -

And broken fences which have been surrounded by water for months

There is water water everywhere

and plenty more to drink

but today the sun is out and it is a most beautiful day - for the first time in ages I have a sense of peace in my heart - and it feels so good.

Cheap Flights with subtitles

2011-05-28T18:04:00.000+10:30

Watch this right through its a hoot

2011-05-28T10:37:00.000+10:30

Feeling a bit better...
Its been a funny week - nothing has been resolved re the high BP - except I have more drugs which aren't working - what is supposed to last 24hrs lasts 10 hrs so I try and spin it out to at least 12 hours and then take the new drug which also only lasts about 6 hours - Its frightening how high it can get before you feel anything - as usual with many GP's the doc is casual about it - but my sister a long time Renal Dialysis nurse has told me to get it down and to push the issue because apart from diabetes it is one of the main causes of Kidney failure - I trust her expertise more than his because my experience with the GPs who handled Don was abysmal. I wish I could do without going to them at all but sometimes you have to - am looking into natural stuff as well - any ideas - I know Beetroot juice is supposed to help and believe it or not Oat porridge - I am not over worrying about this but I don't want to go down the pill path like my poor mother was forced to do - one drug causing her to need another - and it appears we have a similar make up physically.

What humbles me is that Don lived daily with the real fact that he might not wake up in the morning for over 10 years as his condition worsened this was more apparent - he would sometimes just enjoy staring at the sky and watching the birds and trees - or other things we most of the time forget to do - and it seemed to me as if he was quietly memorising things - faces, pets - he took his time - and he never expressed that he was afraid - which he must have been. A lesson - he lived in the moment! Something I usually do - trying to shut out the "What ifs" -

The difference probably was really that he was not alone - and he knew I could act pretty fast when needed -

I am off to see Pirates of the Carribean - the new one - can't remember which one - I have to admit Johnny Depp has to be one of my favourite actors down at the wonderfully old fashioned Plaza theatre in Laurieton (NSW) - they still charge under $10 to go and the big theatre has columns, statues and lighting like they used to have when I was a kid. Funny Don and I were actually at that theatre when we heard that Princess Diana had been killed - I was too young to remember much about Kennedy - remember exactly where I was when Armstrong walked on the moon - (how many Australians remember where they were when out own PM Mr Holt drowned - HM?)

Melissa and Chris didn't make it up here as only an hour out of Sydney a petrol tanker exploded into flames before them - so I am soooo grateful they were not next to him - nobody was which was a blessing. The poor driver was taken to of all places RNSH Burns which is the next ward to where Don was when he was dying. I hope this poor bugger gets better treatment. Melissa and Chris sat there on the freeway for the next 5 hours - then had to turn back because it would have taken them another 5 hours to get here and Chris just couldn't do it as he is not recovered from the amputation yet and suffers a lot of pain.

So at the end of the week - my daughter and her husband were spared - from what could have been a real tragedy for our family and I thank all the powers that be - I am grateful that both my girls and their husbands are okay and in love. I am grateful to be living where I am - I am grateful for so many things in my life - being blessed with parents who loved each other and us unconditionally - a husband the same and daughters the same. How good is that?

2011-05-23T13:04:00.000+10:30

Bit of a fright yesterday which found me strapped to wires and beeps - I have been struggling with high blood pressure for some time now - and trouble getting it to respond to the medications the doctor has ordered - it seldom goes below 150/95 and sometimes has soared above 200/112 - even while laying in bed. The doctor keeps trying this and that then sending me home for a month or more saying"lets see how this goes" and it doesn't seem to change much - so in the past weeks I have been feeling more and more exhausted - it feels like there is a rock or weight in my chest and breathing is fast - I finally got to the end of it yesterday when I felt so unwell I became frightened and then drove myself (they were pissed off at me for doing this in A&E and I get it but don't think I was really clear headed by then.) I couldn't fill in the form properly and felt like there was a pressure in my ears which made hearing clearly hard.

Those who know our history know it would take real fear to get me anywhere near a hospital and it was dreadful to lay there where Don had laid before his transfer to the hospital which killed him - I have to praise the staff as they were excellent except for one smart arse child doctor who hasn't learned to listen, not even to the nurses far less the patient who's fee pays his living.

Luckily the nurses knew what a twit he was so i had support. I was given a small tablet to open the vascular system (Cazzie would know what this is) and then another and wonderfully my BP dropped way down and the tightness and weight in my chest eased and I thought "this is how i used to always feel - how long its been" but after a few hours it started to creep up again - first 157, then minutes later 179 then to 202 - calling for the nurse seemed not to do anything but finally she came and I could tell she was impatient for the doctor to act as the rise was pretty fast, He started lecturing me on anxiety etc and when i tried to tell him I had actually been asleep when the BP started to rise and was feeling wonderfully calm then - it was only when the BP machine woke me up that I even had any concern at all. Don had daily dangerous bouts of crazy life threatening BP so I do have a certain knowledge even tho his was caused by "Autonomic Dysreflexia" a condition peculiar to Quadriplegics see link if interested http://www.sci-info-pages.com/ad.html- but his symptoms were somewhat different from mine - but we knew the seriousness for him - which not as great for me -

I was sent home with extra medication in the wee small hours and thankfully a friend was at the house so i wasn't on my own - but what really upset me was the real fear I heard in my daughters' voices over the phone - I am doing everything humanely possible to fix the problem exercise, healthy eating, not much alcohol and now that is red wine one or two supposed to help - but they lost their Dad in such a horrible way and the damage done to us all runs too deep to be healed yet - Its like there were four of us and one was so brutalised and for so long and basically his death was an execution albeit "legal" and we carry that - it was his anniversary this week but apart from posting the blog I handled it well - and there was a bit of concern re some surgery coming up (think I am falling apart) -in June - but this is the damage people like us are left with as those responsible blithely go about their lives and probably don't even remember our names.

I tried not to let the girls know as both are so far away and couldn't get there anyway - wanted to get things settled till i spoke with them - but one of them must have had a gut feeling as she spam called my mobile and finally I had to reply with an SMS, "talk later" which did the opposite of allaying her fears - more spam calls and had to pick after the doctor left - It broke my heart to her her voice because I have always been strong and tough and have let the kids know I will be there for them what ever happens - am relatively young to have kids in their 30's - and I guess our family is so little and precious to us.

So a doctors visit this afternoon when I would really like to curl up and sleep for ages - My eldest is coming up for a couple of days to make sure I am okay till the new regime kicks in.

So that was my week! Have to hope the next is better - Good health is so important.

2011-05-14T14:13:00.000+10:30

On Tuesday it will be 4 whole years since my lovely Don was killed by gross medical negligence. I am trying so hard not to be sad and most of the time am doing well, but no matter how many people I have in my life and no matter how busy i am it is dreadfully lonely without him.

I figured out some time back apart from the love and all that stuff it is the fun we had together - all four of us. Just the flick of a tongue dripping with sarcasm would have us rolling about and Don was the Master. About 2 years ago the girls and I did another home video -a brrrrilliant send up of some pompous bastards it is our misfortune to know - something we had done on many occasions with don before - we were amazed to find we hadn't lost our touch and we laughed ourselves silly and hurt our throats at the outcome - a masterpiece. But Don was the star in so many home videos - Melissa, Alison and I were so pleased that we still had the touch - and we admitted to each other that we had been worried we couldn't do it without Don's being there.

When you lose the love of your life - (and I have to say I was so lucky to have found him - some people never do) it is hard to accept that in this life you will never see the eyeshine, hear the voice and be held in love the way you were. We are a loyal lot in our family - marriages generally make it and we have ourselves gone through some really bad times when we almost walked away - but we didn't and am so glad now.

It was on this day that the bastards admitted Don was dying . Something he had known for five long weeks of pain, indignity, downright cruelty and filth - and may I add no small amount of very lucrative research - (and I do know this for sure). Its so hard not to hate them for what they did, for what they covered up, for their lies and brutality - and I don't hate them - I don't even remember what most of them look like and have blocked that all out I feel. I hate what they did and are still no doubt doing to other poor frail vulnerable people - because nothing has changed.

I tried to change things and maybe one person who mistreated Don may have got the message - but unless I get the message to those who investigate and until they accept that they are not doing their job - what was done to my husband will happen over and over. There are those doctors like Patel and the Butcher of Bega - who finally get caught not because of the system but in spite of it - but I know from the figures they are just a few of the many - in every major town there are doctors like Patel and Reeves. There is one in this area who just gets shifted sideways when he butchers someone and then three or so years later he is back. Also I accept how hard it is for those who do whistle-blow to stay in their jobs because their peers make it almost impossible and they usually leave and work in other industries.

I have TAFE on the day and its a long day so I won't be sitting here working myself up to be miserable - but I will honour my wonderful man in the way I do - with a candle and some of the flowers he caused to be planted.

2011-05-14T13:44:00.000+10:30

Someone blogged this recently - was it you Cazzie? Joe Dolce sang "Watsa Matta You" many years ago but for those who think he just does humorous songs go to his web page - it blew me away. Have a look at his page and listen to some of his other songs

http://www.joedolce.net/ is his home page - he has talents I never dreamt of - The kids used to love Watsa matta you...because an old family friend was Italian and he played it ad nauseum for them...

2011-05-09T19:30:00.001+10:30

This is Cuss Cuss - a cat who rules the roost unless she is sleeping that is

Blow us .... what can I say about her?

And here is the glass of SHIRAZ I need to deal with this alll

2011-04-29T09:59:00.002+10:30

Raining!
Its been raining much of the last week - but just for the moment the sun came out and it was just so amazingly beautiful out here. There was even a rainbow although we have rain predicted for the next few days - everything seems to be glistening with light. Sometimes when you get exactly the right angle the raindrops in the branches show all colours of the rainbow with such an intensity one could imagine all sorts of things - what amazes me is the beauty around us that most times we don 't notice till it comes up and smacks us fair in the chops like this morning - already as I type this the clouds have covered the sun and its dark again.

Here's a thought that has crossed my mind a few times in my life - The earth, the sky all of it can be just so achingly beautiful, the flowers, the hills, the ocean, people, even buildings - can take our breath away - the earth could have been monochrome, all bleak and colourless and mankind would still be able to live I guess - but what amazes me is why? Why is it so beautiful - It doesn't need to be beautiful, there is no reason why there is so much brilliant colour on birds wings, and flowers - all roses could be yellow, all dogs black - and it is the wild splashes of colour which our eyes and hearts seek - but its not really needed for the world to function - it'd be a much poorer world and life without all the beauty, less songs might be written, less paintings - even amongst human beings - why the variety of races and in those races why the individual differences caused of course by our DNA first and then all the things that happen to us between conception and death - but where did blue eyes come from - as they say we all came from Africa - from one tribe or race - where did all the differences in colour come from and in such a short time? And why? The colour, the difference and the beauty are needed for the human heart to soar but they are not needed for any apparent practical reason really.

A thought occurred and that is maybe all sentient beings see and appreciate the beauty around - but mankind has been allowed or developed the ability to express and record and therefore share these feelings so that I can read what Robbie Burns felt about his world so many years ago, and I can hold the thoughts that expressed not just the beauty but the ugliness; the joys and sadness of people some thousand years gone. I get a bit annoyed with people who are down on mankind as if we were an alien species here on this planet... we are as much a part of the beauty and life of this planet as any river or stream - and although there has been destruction by some - often in ignorance, but just as often with malice , just so there have been wonderful and amazing feats to match - and so the balance is more than struck.

On mornings like this its hard not to feel that although we are often hammered with all thats bad on this planet, there are many more good and beautiful things - its just that we don't remember to take the moment to notice - just as on another morning I would have left the house barely noticing... just a thought train.

2011-04-23T20:48:00.002+10:30

Finally!
This is the alpha male kangaroo who guards the path to my letterbox. I have photos of his harem and they are all sweet and gentle looking - but this bastard sits back and props as I go outside down the path to the gate. Every move I make seems to be a challenge to him. Last time - he sat back so far and raised up his body by using his tail as a third leg o front paws and claws raised - as I drove in my big white van down to the gate (too bloody scared to walk) he did not move a muscle except to make himself look bigger - and he was bigger about a foot taller than me and with claws to die for - somehow this was not the Skippy I remember from my early days...

2011-04-21T15:56:00.000+10:30

I think an old hippie lives here

2011-04-21T15:52:00.003+10:30

"T'is the last rose of summer, left blooming all alone"

Outside this afternoon its still 25 degrees but is well into Autumn and this rose has been catching my eye for a day...there are others but this one is just so beautiful. Don and I had a friend Alan, who died a year before Don did - and we had known him since 1975 - he stuck after Don's accident...I can remember him all those years ago with his blonde curly mop of hair, becoming upset over a dark red rose which had fallen apart...he was comparing it to how life is...we were so young then - He was an artist who earned his pennies by window dressing store windows and self declared in the days it was a little dangerous to declare that he was "as camp as a row of tents" - He was pretty keen on Don in the beginning but sadly had to be disappointed as Don was really straight - I knew why he liked Don to look at - the way he was made -who wouldn't? I was never jealous - even if there was any risk its not part of my make up - I liked him too and many is the time he came down on my side when Don was being a bit too blokey.
Towards the latter years they would talk for ages on the phone each abusing the other, but with no malice - the day Don found out Alan had just gone to sleep and died (maybe a stroke - we never found out) he rang me - I was visiting the girls in Sydney - and he cried and cried. We have many acquaintances in life, and some friends but for some of us there are only one or if lucky two truly good friends - people you would trust your soul to. Alan was this for us...and we could talk for hours on any subject known - history, religion - (or lack of), goings on etc - like Don Alan did not suffer fools gladly - and both having the same last name there was something of one in the other - but so different in many ways. We only have one photo of him and it was taken in the early eighties -but he never seemed to change apart from a few wrinkles.A perfect rose like this always brings Alan to mind. I know Alan would like to be remembered in this way and I think he would be surprised at the preciousness of that memory for me and I don't really know why apart from the fact he was such a good decent and funny person and a stayer...
""

2011-04-18T15:16:00.000+10:30

Just back!

Just back from Sydney and Melbourne - It was really lovely spending some time with my daughters. I slept better than I have for ages and I guess hadn't realised how lonely I was feeling - it was so good to wake up in a house with other people there - more so because between the girls and I its so relaxed and I don't have to be or do anything other than just be there. I stopped at Sydney first and caught up with Melissa and Chris. He's really putting an effort into learning to walk again - by building up his shoulder strength so he can handle crutches (first) and then work on balancing on his new leg which he gets on Thursday - the first of many no doubt - Melissa seems so vulnerable of late and my heart really goes out to her. There is more I could say but not here. Then on to see Alison and her Andrew. They took me to see their block of land and even around to see it late one evening after the water was connected. They are building down near Point Cook (too expensive to buy a home in Melbourne) and I admit it that as flat as the area is, you can smell the bay and I liked the feel to it. We had bought tickets to the Tutankhamun exhibit way back, as well for Melissa and Chris who had to miss out sadly. It was something else...very crowded - but the detail on some of the statues and furniture was amazing - I doubt that we could reproduce their art today unless we use modern technology - it was amazing to be so close to artefacts which had been handmade three thousand three hundred years ago - its an odd feeling to look at things someone sat over and carved - a good thing the exhibits were encased in glass - because like most I would have loved to have touched things - no wonder the Egyptian people were pissed off with their own government for allowing the treasures to leave Egypt - I doubt this will ever happen again.

Melissa on the last morning - it was really glary and we had stayed up late talking so she was having trouble keeping her eyes open - but I begged and she relented - I think she was over having photos taken.

Melissa and Chris and their scary cat Spooky

Ali and I down at Point Cook

2011-04-07T13:34:00.000+10:30

Sarah's Last Wish
http://www.sarahs-last-wish.com

Eve Hillary author of Sarah's Last wish has paired her book with mine which is just wonderful of her - so I don't just have my website www.withoutduecare.com but also features on hers. At the book launch in September she gave a brilliant and understanding speech which she has reproduced on her site - its the tab "Speech by Eve hillary" and can be read there but will reproduce it below - in the last half she offers an insightful explanation of why the Hospitals are in such a mess -along with underfunding and attitude problems.

I will be seeing Melissa and Chris this week and then my youngest and her husband. So away for about 10 days. Hope all are well in the in between. Hoping and praying also that the docs can restore some of Chris' sight which was lost at the same time as his leg was taken... I feel positive - he needs that sight to improve

Therese Mackay's 'Without Due Care' a book launch speech at NSW Parliament

by Eve Hillary

Speech by Eve Hillary

In the free and prosperous 1970’s Donald and Therese Mackay lived as a typical Aussie couple. They rented a pretty cottage for $12 a week where they raised their two daughters, Alison and Melissa in the sleepy NSW town of Port Macquarie. Even then, Don and Therese cared about people. Their tireless community work clearly showed their humanitarian values.

‘Then one sunny day in January 1982’ - Therese writes in her book - ‘life changed’. Don broke his neck at work and became a quadriplegic. The public hospital system of the 1980’s gave him emergency care and rehabilitation. When he returned home, Therese became Don’s full time carer. Despite his severe disability Don overcame all obstacles and resumed his role as husband and father. Therese remained a devoted wife and incredibly, together they continued giving to their community. They supported social justice and access to good health care for all Australians.

In 2007, after a lifetime of social contributions, it was Don who needed help from the health care system. For 25 years, with Therese’s help, he had maintained his health and stamina despite the daunting challenges of his quadriplegia, but now fluid was slowly accumulating in his lung and it had to be drained. Medically it was a simple problem to fix, and people didn’t normally die from it. But the health care system that had treated Don so adequately for a broken neck 25 years earlier had disappeared and in its place a newly ‘reformed’ health system had emerged by 2007 which Don and Therese found unrecognizable, strange and frightening. This time a robust ginger haired Don wheeled his chair into an understaffed hospital with peeling paint and dirt encrusted floors. Instead of a simple low risk drainage procedure, doctors chose a high risk option not suitable for a quadriplegic. For the next five weeks Don suffered nightmarish complications and was reduced to a wretched state of being fully conscious but unable to breathe without a respirator. After five torturous weeks, doctors decided to withdraw Don’s ‘treatment’. This meant sending him home and without any further ado, taking him off the ventilator. Both Don and Therese knew this was a death sentence and Therese begged doctors to allow Don to have a home ventilator at least for a while longer but this was denied - the air ambulance officers were instructed to remove Don from the $500 machine that was the size of a breadbox, his only connection to life. The macabre medical arrangement was executed exactly as planned. On 17 May 2007 Don was transported back to his home in Port Macquarie, fully alert. He believed that his life no longer mattered to the health care system, and that health professionals had made the decision to ‘terminate’ his life. Those were the terms he was forced to accept if he was to be allowed to go home - and he desperately wanted to go home after what he had endured at the hospital. It wasn’t the way he had wanted to die and Therese had tried everything humanly possible to avoid such a terrible death for Don. For emotionally normal people it is agonizing even to imagine what Don’s last thoughts might have been when the ambulance officers removed from him the machine that helped him to breathe. After the medics left with the machine, Don lived for several hours longer, surrounded by Therese and his two daughters. Don was fully conscious and mentally sharp and his heart was still strong until the very end when he simply couldn’t manage another breath for himself.

Two months ago, Therese Mackay generously sent me her manuscript to preview. After reading ‘Without Due Care’, I cried for Therese and for her two daughters and I mourned for Don. After that, I wept again, this time for the hospital where I had once worked for over a decade. I had walked those corridors, worked in those intensive care units where Don had spent his final weeks - but had done so years before the ‘health care reforms’.

In 1987 I was a proud member of an intensive care health team in a public hospital with an international reputation for excellence. We attracted the best clinicians, VMOs and nursing staff in the country. We were affiliated with a top Sydney University, conducted world class research and ground breaking surgery. We pioneered transplantation and I was proud to be a part of medical technologies that helped people and saved lives. Yes, we had dying patients - most were unconscious, but we strove to give them as much comfort and dignity as possible. In my 35 years in high level health care, we had never withdrawn a ventilator from a patient who was not irreversibly brain dead, and I had never heard of a conscious patient having their ventilator turned off and be left to die because a system had deemed it. So, what happened?

I began my health care career in 1969 when the hospital system was not-for-profit and operated to serve the needs of the community. As a professional, I had an ethical code and my hospital’s regulations to live up to, but most of all I was there to serve the patient’s needs. I never considered my role as making money for a corporation.

Changes to the system began in the 1988 when the NSW Government awarded private health corporations lucrative contracts to build private hospitals on sites already occupied by public hospitals - called co-location. The corporations persuaded certain government ministers that their proposed private hospitals would take the pressure off the public system and save taxpayers money. Instead, it cost taxpayers even more, as private companies tapped a rich vein of public money through PPP’s (private public partnerships). Throughout the 1990’s the government bestowed contracts onto corporations like confetti until the NSW Auditor-General, Mr Tony Harris warned that public servants should not enter into grossly disadvantageous [to the taxpayer] deals with the private sector and that, ‘the Government is, in effect, paying for the hospital twice and giving it away [to the corporations].’ Dr Refshauge the NSW Minister for Health agreed. ‘We are not going to privatize hospitals. We believe that the public sector is important and should not be flogged off,’ he said in the NSW Parliament in 1997. The Parliamentary Member for the South Coast, John Hatton argued that deals should be transparent and revealed to the public, which has a right to know. Ironically, Donald Mackay, also spoke out against hospital privatization and joined in a campaign to return the privatized Port Macquarie Hospital back to the people of NSW. But overall, the deals continued and so-called hospital ‘reforms’ were fuelled by special interests and doctor advocates who spoke out in favour of the corporations.

I recall when the first spade of earth was turned on my hospital campus. With massive injections of millions of NSW taxpayer dollars, a health corporation built a luxurious marble and glass private hospital over the old car-park site adjacent to the public hospital. The citadel was obscured from view behind the public hospital building and nestled into a manicured enclave. By 1998 it opened to service the wealthy and well insured of Sydney’s North Shore. The health corporation ran its private hospital as a business; but with even more taxpayer funding and bequests from wealthy socialites , the corporation’s share price quintupled and investors were paid healthy dividends. With the global private sector takeover of the once public hospital systems in western countries came a new philosophy which was noted by several worried health professionals at the time. The New England Journal of Medicine (August 5, 1999) stated: ‘Our main objection to investor-owned care is not that it wastes taxpayers' money, nor even that it causes modest decrements in quality. The most serious problem with such care is that it embodies a new value system that severs the communal roots and Samaritan traditions of hospitals, makes doctors and nurses the instruments of investors, and views patients as commodities’.

By 1999 my public teaching hospital, which had loyally served the northern Sydney public since 1885, had become orphaned in its own home by the co-located intruder. As in twin transfusion syndrome when twins share the same placenta unequally, the private hospital twin received all the life blood while the anaemic public twin was barely able to stay alive. As conditions deteriorated alarmingly in the public hospital, top medical and nursing staff left in droves resulting in a permanent staff shortage, the building fell into disrepair, the top storeys were water damaged from a leaky roof, the floors were dirt encrusted, the windows grimy, the toilets disgraceful and the medical equipment had deteriorated and become hopelessly outdated. By 2005, the once world renown public hospital resembled a third world setup. Even I left the hospital after seeing where it was headed. The health system had adopted a chilling model of economic rationalism that was well beyond any one person’s ability to fix. I desperately hoped that the monstrous system that had destroyed this Australian icon would not one day claim the lives of innocent people. It would be only a few short years before my worst fears came true.

It was into this health system and into this public hospital that Donald Mackay was admitted on April 11, 2007. He required thoughtful medical assessment, adequate nursing care and a safe and simple procedure to be performed in a hygienic environment. He required his basic, human needs to be met. Once, all Australian public hospitals were up to this standard of care. But Don got none of these. The system that had destroyed this once top public hospital would also come to destroy Donald, the man who cared for people. Then it would continue to destroy lives until it became the subject of a Parliamentary enquiry in 2007. Since then, not much has changed systemically.

Honoured guests, I give you Therese Mackay’s book: Without Due Care. She writes on behalf of Don, her family and for all of us. Please read it. We need to know what kind of health system we have, and how it came to be what it is. We need to know how our Parliamentarians voted on health issues, who the special interests are and whether they have the public interest at heart. Why? Because this could happen to you or your family. Instead, this must never happen again. Please give your support to those candidates and others who genuinely strive to improve the system and work in the public interest.

Eve Hillary

Journalist, Health professional

Author of Sarah’s Last Wish: a chilling glimpse into forced medicine

www.sarahs-last-wish.com

2011-03-31T12:35:00.002+11:00

Feeling a little nostalgic today as Autumn seems to affect me like this.
Some lovely photos of Don and the girls one of them taken when they were teenagers and the others in their twenties - they are now both well into their thirties - its hard to credit all the time that has passed - but then only have to have a gander at my old licence photo to see that in that same time I have gone from being young to looking like someone else - who can she be the face in the mirror looking at me?

Good news re Melissa's husband - they unwrapped the stump of his leg and its healed nicely with no sign of infection at all and the doctor is very pleased with himself at the neat job he did...this makes it easier for them as sometimes they can look a bit rough. So now he goes to rehabilitation which will be good as there is too much time to think just lying in the hospital bed... and the quicker he gains as much independence the better for both of them. We have just got to hope and pray that the other leg stays healthy... he was doing all the right things re controlling his diabetes - but the arteries supplying blood to the leg became blocked with calcium and that was that...so hopefully the specialist will give him a plan as to how to avoid this in the future.

Its odd to think of my daughter in a similar situation as i was - although Don was much more disabled, Melissa will deal with the issue that the diabetes will have a great affect on his life quality - can't help but wish for her an easier time after what she has been through . Anyhow as long as they both pull together and are considerate of each other, both seeking to help the other in any way possible - thats what worked for Don and I. He did what he could do to make things easier for me and that attitude made me want to do the same for him. When you really love someone thats what you want to do. Not to say there weren't some beauty rows in our time together - but we always seemed to get it sorted - and as i had to sleep in the same room as him for his safety, somehow by the morning it seemed to heal.

So many women end up in separate rooms - usually starts out because the husband snores like a demon and then becomes all the time. But I always found it healing to sleep together after a fight even though you might huff and puff or be really angry - Melissa knows this and as long as he husband eases pressures off her that he can ease...they will be okay.

I don't know why our family seems to have such hits occurring over and over - not many make old bones amongst us - and I know whole families who still have multi generations of family all alive, all healthy and all living close. In my whole life the 1970's was the only decade when nothing too terrible happened...every other decade of my 5 plus seems to have had people injured badly, killed, die too young and we are all scattered to the four winds.

Yet still life is sweet and I am not complaining, just really thinking things through. Sometimes when I look at my husband's face, remembering what he went through and him still wanting desperately to live - I feel like I am not as strong as i could be. I admit quietly in here that I am absolutely terrified of something happening to the girls and am under no illusion that just because bad things have already happened they won't happen again. I don't constantly think like this and am usually really positive - just that tinge of autumn in the air doing its work...I haven't really had much time in the house of late to dwell on these things - and it doesn't hurt once in a while...maybe even good to take stock and understand and appreciate what i actually do have, rather than just blunder through life without any reflection on things around me.

2011-03-29T10:53:00.000+11:00

Back home for now
.Its such a sweet autumn day outside - a gentle sun, the birds singing all of that - its my favourite time of the year. I am thinking of my daughter Melissa and her husband and where they are right now in a small room at the hospital trying to come to terms with whats happened. I wonder how much my own mum sat in her old house in Scone and though about us when Don first had his accident in 1982... A leg is not as bad as a broken neck but I think the diabetes may be worse than they think because for someone so young to lose a leg from it means something is very wrong. I just worry about the future for them...issues such as having a family and all of that. My saving was that we had two dear little girls, and who could be serious around them - she has nothing really to keep her cheerful in the face of this, and I just hope she doesn't do what she has been doing for too long and put her own life on the back burner. There are issues I can't say here and as much as i would like to help ...she is 36 and very independent as i was as well...

So some more weeks at the hospital than the same again in Rehab (live in) - one Physio said to Chris "Your wife will have to come to see what she's in for!" Honestly - the soul of tact. What the silly twit didn't know was that at 12 Melissa was physically able and needed to get her own dad into bed from his wheelchair and undressed when i was ill - she and Ali knew which tablets to get and when and helped with the ramps to the van and all sorts of extras only those living in home with someone with extreme disability can know. Many Physios, nurses and social workers and doctors just do not understand that what they see in hospitals is not how it is at home. At home children are needed to get fathers to bed...to empty urine bags, to take blood pressures, to help so as to have as normal a family life as possible...we all pulled together.

Chris appears to be making a steady recovery and it appears that this has bought he and Melissa closer.

I had an interesting call from a doctor in Sydney who is a true patients' advocate - one of the real ones - he has just finished reading my book and we talked for some time - wants to meet one day as I offered to do whatever i could to help in this area. He said he went backwards and forwards to his wife almost at the end of each page because what i was describing - he knew was what he had seen himself. So who knows - it may end up changing things in some what...he said that one day i will be vindicated.

I told him I was going to Tafe to get some skills as I really have no marketable skills - and you know what he said - he said, "you have the most important skill needed..tenacity." So if tenacity is in the job description well then!

2011-03-19T18:39:00.001+11:00

Sadly Melissa's husband has had his leg amputated below the knee. Melissa's husband has diabetes which he controlled by diet and properly too. He lost feeling in his toe because of undiagnosed calcification of the arteries leading to the foot - hence gangrene in the big toe...they went to a horrible hospital who treated him dreadfully so their naturopath told them to leave the hospital, that she could treat gangrene - and after Don's experience and others they believed her - for a while it appeared to improve and on their own get up and go they did IV V and hyperbaric - after recommendation from an integrative medical GP - but she wheeled her way back in and started poor Melissa on doing two hourly poultices of every substance known to man - then when that didn't work she Injected into the foot which was now becoming gangrenous as well (bloody) lemon essence - non sterile and with a big need leaving big holes - - criminal as far as I see - so within a day of this the whole foot was in danger - Saturday night they didn't sleep because of his pain then finally she admitted she was out of her depth and said to go to hospital - they got straight in to St Vincents in Sydney which I have to say is a dream compared to RNSH - so clean and efficient. They took first his toes off but the next day he developed sepsis, high BP, Fever and intense pain so they unwrapped his foot in front of us...I had to try hard not to be sick right then and there... so that night they took the leg off under the knee which was in hindsight is a blessing - no amount of natural medicine can replace angiograms and the like I this case...such a shame this naturopath was just as arrogant as the doctors treating Don - both suffer the same disease... and the patient paid...I feel so much for Melissa - she is exhausted because of the demands this woman put upon her so that she slept little in the past month.
So am praying all goes well and that as he improves and learns to walk as he can - it will not be the big disability that everyone thinks it is - lots of people cope with this and I think he is strong physically but have to hope strong enough to help Melissa as it has been a dreadful few years for her....with memories of her dad's death still so fresh and now this

2011-03-16T12:14:00.001+11:00

Prayers for Melissa and her husband...he is back in hospital and its serious...she is devastated just going back inside a hospital is traumatic enough for her...am flying down tomorrow morning and hopefully back mid week next week - Just wish our family could have a normal time for a few years. Can't say too much about it as i don't have all the facts

2011-03-13T11:50:00.000+11:00

So bloody tired lately.

I am feeling a bit selfish for how I am feeling these days with whats going on in the rest of the world - but lately I have been totally exhausted, hands shaking, heart racing and not thinking as clearly as I usually do. It was all I could do the past days just to do the very basics here and fall into bed - I don't seem to have flu or anything, but am having thyroid issues which I am trying to sort out - The nightmares I have had in the past few nights are absolutely dreadful - so dreadful that even to remember them makes me feel sick - and in brilliant colour and sound which is odd - but I think that comes from being so tired and not able to renew energy by resting. One of my daughters mentioned that she had a period like this when her adrenal glands were on overdrive and I think my thyroid medication may be at too high a level and has made me hyper rather than hypo - I never want to feel like this again - our youngest was seriously ill for many years and much of her days were spent in bed or resting and I watched her go through hell, I am no way as bad as that but am unable to cope with the upkeep of this place the way I am. I was in a class at Tafe the other day and had almost the whole class on blank - things I had done before were just gone and I couldn't function...so had Friday off and in bed, as well as Saturday - am resting today as well hopefully so will be well enough for the week ahead. I can't afford to get behind as I need to get back into the workforce sometime this year as I spent a fortune publishing my book and need to earn some money fast. The thing is after having our daughters young (which was wonderful as there would have been none if we waited) and then looking after Don for most of our married life - I have no saleable skills and am unable to do heavy cleaning etc due to a couple of sets of fused vertebrae - so am trying to get some skills that i can use for the next ten or so years till I reach retiring age - While I am here in the house I feel so calm and at peace - but unless I find something I can do from home (and I might look into that) I have got to have some skills so I am employable. It worries me a bit that just when I need to be able to function I seem to have lost energy and feel exhausted all day and night. I have never felt like this for this amount of time and usually bounced back from most things -
Not much to complain about -
I have been on this product http://www.armourthyroid.com for sometime and should have had blood testing done - I had the referral but kept forgetting - so hopefully the tests will find the culprit -For those with hypothyroid conditions the following might be of use
There is a product you can take for Hypothyroid which is natural but at a pharmaceutical strength - in that it is put together by Australian Custom Pharmaceuticals and only available on prescription by a doctor - usually a doctor who practices Integrative medicine - which is combining the good parts of Allopathic and Traditional medicine - Allopathic being modern medicine. The other products are oroxine or thoroxin and are okay but do not treat the T3 part of the thyroid. Armour treats both T4 and T3 but like so many medications that work better - it is not covered by medicare and is expensive.

2011-03-06T15:48:00.000+11:00

Please visit Jules' Blog and read the February 23rd post to the end.
http://naturallyoutspoken.blogspot.com

2011-03-06T14:57:00.000+11:00

Finally!! Can access my own blogspot!

I've been locked out since I changed my email!

2011-02-27T10:39:00.001+11:00

Its Mum's Birthday!
She would have been 84 today. She died suddenly (Cardiomyopathy) in 1993 at only 66. Her photo and candle will be up there today. She actually died on Don's birthday July 4th but we didn't find out for two days. She was minding my eldest sister's house while they were away - and called me on that evening - but as it was past 10pm when I got home I decided to ring her early in the morning - when there was no answer I was worried but also knew she had an early appointment and most likely had already left. But when phone calls continued to be unanswered by her, my younger sister and I became frantic - so we called the police. She was way up in Brisbane so they could get there quicker than us. The next thing a paddy wagon came down the driveway and I knew she was dead before they told me. I had always thought I would be with her when she died as she lived near me. I knew she was on borrowed time as her condition was end stage - but for years it haunted me that she lay there all that time. But I know she is okay because I have had vivid dreams of her dancing in circles in a bright emerald green dress which flares out as she twirls around - young and beautiful. Mum loved music and to dance. For a time the scent of her soap (Sunlight soap would waft around my head and I never used that soap). I have had a similar dream about Don in which he is young and healthy and lying on a rock near a waterfall we went to once - and he is glowing as she was glowing - the colours again are bright. He has tapped me on the head more than once when I was really sad...and when i almost went to sleep driving I heard his voice loud in my head. "Wake up!" and i did and realised I was in a dangerous state on the road. So I know no one really dies - not forever. And so a bright big happy birthday to my lovely mother who was always kind and tolerant of a child like i who may have tested her patience - a mother who laughed a lot - who possessed a class and gentility that no training nor money can buy - to a mother who let me become the person I had inside me and never, not once was critical of my dreams and achievements - Mum's take on a visit was "It was such a lovely visit, we had some really good talks." I wish I could have done more for her, and understood more, but I was young - as she was young when her last parent died and she no doubt would have had the same thoughts and like me apart from mentioning them did not dwell on them. I was so lucky in life's stakes to have had parents and a husband and children who are all much the same and possessing the same qualities. I think the words I am looking for are "They have understanding hearts." And if you have an understanding heart you will know what it means.

Mum on her last birthday in our old home.

Mum with( right to left) Melissa at about 15 and Alison about 12

Mum as she often was

Port Macquarie Hastings Fluoridation begins in May

2011-02-25T15:14:00.000+11:00

2011-02-23T06:54:00.000+11:00

Prayers for those living in or who have loved ones living in Christchurch New Zealand after shocking destruction by yet another earthquake.

2011-02-22T19:25:00.001+11:00

Outrageous document from the NSW Coroners Court
reveals what Tara Norton Senior Coronial Advocate, State Coroners Court, Glebe NSW wrote in an Internal document giving her opinion of me after I had approached the NSW Coroner to have my husband Don’s Death certificate changed. That death certificate was changed to add “Treatment” as a cause of death. I recently received some documents after requesting Right to Information which has replaced Freedom of Information. It is always wise to obtain such documents. I am reproducing pages 4 and 5 of this document and after that a copy of my letter written to request the statements from the doctors involved in don’s treatment and death. None of these were released and it appears to me they didn’t even take their statements. My comments in response to Tara Norton’s outrageous claims appear in italics and red.

“...Since receipt of the expert report, Mrs Mackay has written to a number of people within the Coronial jurisdiction, requesting that a further expert report be obtained. Mrs Mackay has spoken to a doctor by the name of Dr John MARX. (Dr John A Marx MB BS, BSc. (Hons) Pressure Medicine Institute Melbourne, Australia – he is a medical aviation specialist). Evidently this doctor has written about the effects of air pressure on the human body. Mrs Mackay spoke with him about the effect transporting the deceased by air ambulance would have had on his lung capacity. From the information passed on to Dr. Marx by Mrs Mackay, he has informed her that the pressure in the aircraft could be a factor in the deceased’s death. I have contacted the Medical director of the Air Retrieval Unit of the NSW Ambulance Service at Bankstown Airport, Dr Koel HOBIG. Dr Hobig states that a patient such as the deceased with quadriplegia is not automatically a problem to transport by air simply because of his quadriplegia. He stated that the main issue is the patient’s oxygen saturation level which is an immediate indication of their lung status. He states that in some cases in fixed wing aircrafts the pilot will be instructed to fly at 20,000ft instead of the 30,000 but this is only if the oxygenation is poor and the weather conditions permit it. He stated that the pleural effusion is not really a problem unless it has compromised the deceased’s oxygen saturation level. From the medical notes, I have established that when the deceased was admitted to Royal north Shore Hospital his oxygen saturation level was 95% on room air. He had no ventilation or oxygen support and was maintaining a reasonably high O2 sat level. Following the procedure his saturation levels started to decrease but at the time of transfer were stable and not an issue. (I spoke with Kathy Sheppard who worked with Wingaways and she told me he was given Oxygen when aboard the plane – and I have those written records – sadly Kathy was killed last year when the ambulance plane she was on crashed.)

Dr Marx has evidently also commented on whether the Pleurodesis being conducted the day after he was transported was appropriate. I feel that Dr Bannon has commented on the appropriateness of the attempt to drain the fluid, and the Pleurodesis that followed. (It was the other way around –Pleurodesis first then drainage. This is of vital importance– clearly Tara Norton is confused about the whole procedure) He stated that the procedures were appropriate but also placed the deceased at high risk because of his quadriplegia and associated medical conditions. (well that explains why they went into his lungs minus ALL normal and expected pre operative procedures as noted in the chapter in my book called “A catalogue of errors” One would have thought they would have been even more careful with an at risk patient – not less careful. But Tara is convinced she has the truth) I do not see that an expert report from Dr Marx will assist in this regard. (Dr Marx is very highly qualified but he is not one of their doctors - Dr John A Marx MB BS, BSc.(Hons)Pressure Medicine Institute Melbourne, Australia)

I am of the opinion that Mrs mackay continues to struggle with the death of her husband and comments from persons such as Dr Marx, who appears to have been given a distorted picture of the deceased’s treatment by Mrs Mackay, are compounding her grief. (Unbelievable! and defamatory. Ms Norton was not in the room when Dr Marx and I talked - how would she know what was said –but appears comfortable with what appears very unprofessional comments. She was not at the hospital and appears not to have even taken statements from anyone who was there apart from me. All who visited can back my statements up –but then it was a medical death and that gets special treatment) Mrs Mackay obviously loved her husband dearly and provided an exemplary level of care to him over the 25 years he was a quadriplegic.(I did ,but again MS Norton has no knowledge at all of what our lives were like and she “assumes” what the situation was)It is clear from his medical records that the deceased had suffered with respiratory problems since September 2006 (Make that Christmas 2006 Tara – and how come it took so very long for him to get treatment? No one has answered that) He developed the pleural effusion which despite attempts to drain it, failed. (There was one half hour attempt to drain it – not attempts Tara! It was done quickly in Radiology in Port Macquarie so they could do a CT scan. They stopped because they did not want to take too much quickly – or might collapse the lung. He was sent home that day with less than half taken off – and left to our own devices TILL the Pleurodesis over a month later. It was a reaccumulation not a recurrence – a big difference.) The next treatment was a Pleurodesis which carried with it significant risk given the deceased’s medical history. (Well then why the big hurry after we had waited too long without any care at all in our home – also Don’s Spinal doctor said it should never have been done and she would know) His deterioration appears to have been one of the possible consequences of such a procedure. (BINGO! Finally they admit this – they have denied this up until this very statement) I feel that the expert report obtained by Dr Bannon shows that the treatment was appropriate, however when MrsMackay receives this report, I am sure she will read the report differently to the way in which I have interpreted it and will raise a number of issues in her own mind about the decisions made during the management of the deceased. (As it was Dr Bannon couldn’t even get the timeline in order and his report was a dogs breakfast – something which could have been corrected had anyone thought to talk to me about it. Its nice to have your reactions prejudged by someone who has never met you. The whole family and friends must have also been similarly afflicted as we all reacted the same at Dr Bannon’s badly researched “report”) I am of the opinion that, other than the cause of death that was to be slightly amended as suggested by Dr Duflou, there are no other avenues of investigation that could be conducted that might assist in this matter. “was to be “it was amended and I consider adding “treatment “to the death certificate as no small amendment – why the adjective in what should be a professional opinion) I do not feel that Mrs Mackay will be happy with the outcome of (their typo) in this jurisdiction, regardless of the enquires that are conducted, as she appears determined that the deceased died in horrific circumstances that were entirely caused by the medical system. Ms Norton relies a lot on things that “appear” assumes much and used “in my opinion” and thats all it is “her opinion about a person she has never faced, based on what? I do not consider this a responsible way for anyone working for the NSW Coroner to act.) It is never a good outcome when we fail to assist families in coming to terms with the death of a loved one, but I cannot see what else can be done at this time to assist Mrs Mackay. Further expert reviews by Dr Marx (there were none at all so how can there be “further reviews” or any other medical practitioner will no doubt just raise further questions and at the end of the day, the outcome will not be altered. (How can she possibly know this?) The deceased was at high risk when he underwent the procedure, however the procedure was necessary (not according to his Spinal Specialist) As her correspondence indicates, Mrs. Mackay continues to raise various issues in just about every aspect of the care and treatment provided to the deceased and in addition to that, is still raising new issues as potential “causes” of her husband’s death. (Please Tara Norton list all the issues I raised which have been disproven. I am sure Mr Peter Garling QC would be very interested in your “opinion” of his Garling Inquiry which gave my evidence credibility) A copy of Dr Bannon’s report should be sent to Mrs Mackay as soon as possible as she has been waiting for this report for some time now. If we were to send a 30day letter with the doctors report, I predict Mrs Mackay will send a lengthy submission to Your Honour requesting multiple experts look at various aspects of the care. (Now she is making “predictions” –very neutral and scientific of her)It is for this reason that I respectfully recommend that this matter be dispensed with.
Tara NORTON
Senior Coronial Advocate,
State Coroners Court
Glebe
14 April 2009.

I am pleased to finally receive this document and to see the sweeping lack of neutrality. Tara Norton makes sweeping statements about my actions as if I was the only one involved in pushing my husband’s case. Our whole family both sides and over 2,000 local people who signed a petition asking for an inquiry agreed with me and my actions. Every single thing I claimed I have proven – and as far as I know the Coroner has not even obtained statements from the hospital involved in the mismanagement of my husband’s care – a mismanagement which caused him a lingering and horrible suffering and death. I am awaiting response from the NSW Coroner’s office as to any statements from doctors involved in Don’s time at the hospital. I believe they do not exist. I believe they never even were asked to give statements. Such is justice in Australia in these times that the victim’s family are “judged” but those who had the care of that victim are treated with kid gloves. A medically caused death is still a death. The person is just as dead. When it is caused by “Treatment” they don’t just die – they are killed. The victim and relatives close by are left just as traumatised as if the person was tortured and killed out on the street – but have to pursue their own justice as there are no “police” to act for those who suffer medical malpractice. But just because we are traumatised doesn’t mean we are unhinged and can’t think straight and research as per normal. The research our family did during Don’s mismanagement and after his death was clearer and more succinct than that done by the Coroner’s Office and the Health Care Complaints Commission. Both bodies had a woeful idea of the timeline and an incomplete understanding of proven and admitted facts which were recorded by the doctors and nurses themselves in the notes.

Therese Mackay

12/2/2011

NSW Coroners Office – Mr Paul West
31st January 2011

Dear Mr Paul West,
I am in receipt of the documents mailed to me by you 27/1/2011. Thank you

What appears to be missing is any response from the Cardiothoracic admitting specialist and/ or from any of his staff. Also missing are any statements at all from ICU doctors and/ or the Hospital. Also I see no statement from the local GP.

It would be assumed that any investigation of gross medical error, which it was would include at the very least taking statements from the doctors involved. Were doctors approached by the Coroners’ office? If so I would like to see all that documentation. If not then there is real cause for concern for those of us who go to your office reporting wrongful death.

I now seek all documentation contained in mine or my husband’s file 107/08 - Also I request a list of all documentation generated out of both approaches to your office.

As well I am disturbed by Tara Norton’s statement 14/4/2009 – in which she gives an opinion of me; a person she had never met. I gave evidence at the Garling Inquiry and Peter Garling QC thought my evidence truthful enough to include in his report. He even went so far as to copy the crucial part of the notes where the Cardiothoracic doctor’s handwriting was so bad – a gross medical error followed and went unnoticed for 22 hours – causing a noticeable decline in his condition prior to the first Respiratory Arrest.

I think what your office got wrong was that what was done to my husband was so bad and so prolonged that it was unable to be believed. All was true as stated in my book “Without Due care” Launched in NSW Parliament House by Mr Andrew Stoner and Mr. John Hatton. They obviously thought I had a grasp on the truth. Even Dr J who had been my husband’s Spinal doctor many years ago gave credence to what I wrote after reading my book. As well Dr G my husband’s spinal specialist said to me directly that Don should never had the Pleurodesis – just a lung drain and biopsy and then if it reaccumulated to drain it again because his lungs were so fragile. Against the opinions of the above Spinal Specialists , Tara Norton and Dr Bannon cast aspersions at to my credibility because of my loss.

I would assume that when someone you love is wrongfully killed to become emotional is a sign of good mental health –but it does not mean you are untruthful, nor than you can set known facts down. As it was Dr Bannon couldn’t even get the timeline in order and his report was a dogs breakfast – something which could have been corrected had anyone thought to talk to me about it.

I hope to hear from you as soon as possible and I certainly expect to hear that the doctors mentioned above provided statements as a matter of course.
Thank you

CC Lorraine Long Medical error Action Group and Eve Hillary author of Sarah’s Last Wish

2011-02-18T18:53:00.003+11:00

I was sent this from an uncle who fought in Palestine and on the Kokoda trail in WW2 - He is quite old now but this makes Goosebumps for me - I may be crass and simple - but as bad as the Government bureaucracies have made Australia - there is still and always will be the common people - and they are waking up finally.

2011-02-17T15:24:00.002+11:00

Happy birthday to me age old (sigh) 57!!!

Some lovely pressies from my daughters and two of my sisters... a bunch of flowers and bottle of plonk! All for me and a better brand than i usually buy. And some people have a parrot on their shoulder but I prefer my cat Cuss Cuss - she is making sure I don't have too much vino! She looks very disapproving! I am going out for dinner this evening - but the birthday was the day after Valentines - everyone was away in other towns and they were all worried that I'd be upset being by my self but I actually enjoyed myself.
I have been out of touch but have just begun a full time TAFE course, and what with running this place and keeping the snakes from the door literally (only KIDDING) - I am flat out keeping up with things -Am going to set aside some time on the weekend because I really enjoy catching up with people and seeing what they haven;'t been up to or the other way around.

I wasn't quick enough getting into the photo to actually be drinking - because I was sitting down low on the floor on a pouffe (am I still aloud to call it that) -and it didn't happen as neatly as intended.

Not long now till summer is over - thank all the heavens for that.

2011-02-13T07:39:00.003+11:00

Back home now and hit the ground running. I started a full time Tafe course on Tuesday.
Enough about that. The attitude in the hospital towards Chris' diabetes was dreadful. He controls his sugar levels strictly not with insulin but by being very careful with food and testing often...so what do they do the first night he was in there but give him some food which they told him was for diabetics - Christ tested his levels a while after and they were off the planet - The next day when he quizzed the dietitian about his "diabetic" custard - she said "We don't have any diabetic custard here" and it appeared that although he was listed as a diabetic no care was given to his food...
The toe was to be chopped off on Monday but in between a natural practitioner came out and also they are seeing a doctor who practises Integrative medicine and are actively working on returning circulation, oxygenation and controlling infection by using poultices which draw out infection. The toe got worse in the one night I was there but now seems to be holding and it looks better - also his eyesight has improved after its dramatic deterioration in hospital. They have used a Hyporbaric Chamber, and IC Vit C plus Chelation therapy at massive doses this week. Amongst other things - He may still lose the toe or part...but at least the infection has stopped spreading and if he loses it it is much less likely he will lose even more because of poor circulation. We have taken photos of what it looked like the day after leaving hospital and Melissa is recording it daily. If it gets worse then its still not as bad as it was... if it gets better then surely the Doctors should be interested but pigs will fly before they admit it. For the efficacy of IV Vit C -
http://www.3news.co.nz/Living-Proof/tabid/371/articleID/171328/Default.aspx?ArticleID=171328 this is worth a look. Our youngest was using IV Vit C once a week for oover a year when she became really ill in 2002 and it really helped her. Alongside her were people who were undergoing Chemotherapy - and chose to do the IV C - not provided by the hospital nor covered by medicare. Alison said those people did much better handling the Chemotherapy than others. They didn't suffer the nausea and hair loss an other symptoms of the attack on the whole body Chemotherapy is - also the massive doses helped them avoid flu and other infections which can prove fatal to someone undergoing Chemotherapy. Why on earth this is not provided alongside Chemotherapy has me beat. Same as why are strong (practitioner strength) probiotics not porvided alongside antibiotcs which destroy the good bacteria in the stomach leading too often to systemic candida which is horrible. Don had that in the end and they refused to let us add the probiotics to his nasogastric feed. I am cynical enough from experience to believe that the pharmaceutical industry makes packets out of sick people - not out of well people and not dead people, but I also hope one day that Allopathic medicine and Integrative medicine will join forces for the good of patients - They have all the technology in the world - but not the common sense they were born with - and I feel very sorry for the good nurses and doctors who struggle to provide good care inside a system that is still worming its way out of the dark ages in to many ways.

2011-02-04T14:17:00.003+11:00

Am heading to Sydney(out Windsor way) this afternoon as my daughter’s husband has developed Gangrene in his foot – he was admitted to Hawkesbury hospital after a GP told him to go to A&E - they put a drip (antibiotics) in, in hospital and overnight he started to lose eyesight and the gangrene started to spread quicker – the hospital's comment “oh it does that some time” So this morning they fled the hospital especially after Don’s dreadful experience –he pretended to be seeing Melissa out to the lift - and are speaking with his specialist – not the people who treated him now to see what went wrong. The hospital have been spam calling them since then. He has diabetes – which I wasn’t told about till yesterday – and he had a slight condition in his eye – but he could have lost all sight in that eye as it began to get worse as the drip was fed in. I don’t know how this is going to turn out - he needs treatment asap so the gangrene does not spread! They were terrified at his rapid decline and their lack of concern

2011-02-02T20:35:00.002+11:00

Pray for North Queensland - first it was south Queensland now it is the north - Just have to hope no one is killed tonight as Cyclone Yasi crosses the area - scary stuff.