And now for something completely beautiful -early morning from the home paddock at Craggy Island
Saturday, May 31, 2008
Response to the NSW Government's laughable 9 pages of crap received last week
This is a long post and will not interest everyone - I was going to try and condense but ran out of will - how do you just print out about a paragraph and then have a link "more" so that only if you are really interested do you wade through the lot?
Preliminary analysis of the NSW Health Care Complaints Commission’s refusal to investigate the death of Donald William Mackay after his surgery and treatment inside RNSH between 11th April 2007 and 17th May 2007 the day he died.
We are just starting to look over the letter and attachment sent to me from the Health Care Complaints Commission. Already we have queries and statements which show that the Health care Complaints Commission have put their name to documents with flaws in them big enough to drive a truck through.
For us the response of the HCCC, verges on the edge of corruption and it appears evident in their so called investigation that they have more than bent over backwards to ensure that no one is ever to be called to account for my husband’s dreadful neglect and lack of care inside Royal North Shore hospital.
To start with… almost without exception the HCCC have covered up every instance of neglect in Don’s pre op care and post op care. RNSH Internal Inquiry in early Jan ’08 shows clearly the many areas of inadequacy in Don’s hospitalisaton. The HCCC seem hell bent on ensuring that no one from RNSH is accountable and have left no stone unturned in seeking to absolve RNSH and the Doctors involved that they have written their response to me in the vein that all was well and nothing was done wrong, which is in direct opposition to the findings of the Internal RNSH Investigation.
We have to on behalf of the shocking suffering of my husband and our father ask why they would do this.
1. Pleurodesis – They have glossed over the fact that RNSH in their Internal Inquiry admit that the use of Ungraded Talc is a problem and can lead to Acute respiratory Distress Syndrome, as happened to Don. They now no longer use this ungraded Talc because of Don’s death. I would have thought that this would have had some relevance to the HCCC but all they say is “The use of talc fro Pleurodesis is common in Australia.” RNSH always had available to them the talc they now use (I hope they are still not using ungraded talc) and it is and has been for some time established in the literature that ungraded talc has dangers. Why were they using this product on patients, armed with that knowledge?
2. They say “Time was limited but it appears appropriate assessments were undertaken. Ideally further assessments would have assisted with post operative rehabilitation.”
Why was time limited when Don had travelled down from Port Macquarie Base Hospital, “alert and orientated” and totally breathing independently? There was no emergency. The fluid in the Pleural lining had built up since before Dec 2006 – was still in April (when he went to RNSH) a moderate Pleural Effusion and it was not recurrent as they like to repeat… it was only a reacummulation of the some of the fluid which was drawn off in March 2007. There was no history of recurrent effusion. I had had the care of Don in our home without medical help in the months before and nothing happened to him to cause what happened to him in only three days after they went into his lungs without all the Pre op procedures that any Australian Cardiothoracic Surgeon would have followed. All this is admitted by RNSH in their January Report and directions to avoid a repeat listed in their RCA but the HCCC have said there was no significant departure from the expected standard of care. How can both things be true?
3. The HCCC’s expert advised them that there would be no adverse outcome from having the lung of a Quadriplegic man suctioned at ten times the pressure for almost 22 hours. Please can some one tell my how this can be true? If there would be no adverse outcome from having the lung suctioned at this measure what is the measure which would cause the Pleurodesis to fail as it did? Bear in mind that the suctioning of the pleural lining was not to remove fluid as that should have all been removed prior to the Pleurodesis, the suctioning was to suction the pleural lining together like suctioning a plastic bag to stick the walls together so as to ensure the Pleurodesis worked. It failed. Their expert basically told them that suctioning Don’s lungs for 22 plus hours would only have caused him pain…nothing else. He was a Quadriplegic with limited respiratory reserves…and lung injury, as we knew at home from a simple cold to flu could prove fatal…we knew this. Their expert who remains nameless says nothing would have come from suctioning his lungs at 10 times the value. Therefore I have to ask why don’t they suction all lungs at 10 times the value and be done with it. Nothing happens. No harm is done. They say that “the failure of staff (these are Cardiothoracic doctors we are talking about) to realise that the pressures were too high is a departure from acceptable standards of care, however given the expert advice there would not appear to be sufficient grounds to warrant disciplinary; action to be taken.”
So it is fine in NSW to suction a very ill Quadriplegic’s lungs at 10 times the value recommended… and being a Quadriplegic as mentioned in their “report the pain would be minimal (see Internal report” this all beggars belief and knowing Don’s heightened sensitivity to pain in that area, I therefore question the capabilities of their expert. Do they not comprehend the seriousness of unrelieved pain in any Quadriplegic, especially my husband who suffered daily bouts of Autonomic Dysreflexia which meant that any unrelieved pain caused his blood pressure to skyrocket? He was hypersensitive to internal organ pain. On this statement alone the HCCC show their shocking ignorance.
What is being said here is that their expert believes Don would not have felt much pain because of Quadriplegia. I believe that the Human Rights Commission would be very interested in this declaration by the HCCC. Don had been on opiates Fentanyl at first and then Physeptone) for years with special provision from the authorities because of the intense levels of pain he suffered. His life was still pain filled as the medication was unable to cover it. Some days his face would be almost grey with pain. On a rare day he would come out smiling and say “There is no pain right now – it’s wonderful”
4. Item “6” on page three is astounding. Titled “Alleged failure to discuss with family the failed Pleurodesis”
They say “For example the medical records on 15th May 2007 Mr Mackay was noted as being in ‘a stable but critical condition’. The use of words such as these would not be construed to mean that medical staff at this point felt it was not possible for your husband to recover.”
This is a statement to makes me feel sick with the memories. On the Monday 14th May 2007 I was called to a so called conference…not a family conference… just me and them… and told with box of tissues always at the ready that Don was dying and what did I want to do. This was 2 days before he died! I was relieved as was Don because finally he was going to be allowed to die something he had tried to make happen since 15th April 2007. How can the HCCC state the above in light of this? We were from then on in the hands of Palliative care…Who does the research for the HCCC?
They say that “there are many notes in the records stating that the family was kept aware of the situation.” While the people writing those notes may say that this was not the case. Not once were we told that they had suctioned his lungs at 31KPA in Spinal in the first day. Not once were we told that the Pleurodesis had failed and that he had developed Acute respiratory Distress Syndrome. I could go on and on here about the things we were not told which we discovered only later in the notes. We were only told what they wanted us to know and we did ask Cardiothoracic a direct question about the Pleurodesis and one of their Doctors became quite aggressive with me in avoiding answering. My daughter Melissa and my husband witnessed this. That doctor returned and said he was sorry which my daughter and Don also witnessed but still he never told us the truth. But the HCCC is satisfied. Once again I have to defend what I saw and knew and later found out.
5. They also mention here the “multiple extubations” Don was forced to endure. The torture I mentioned to the HCCC was what I witnessed. ICU left him far too long after extubating him. He was allowed to come to the point of Respiratory Arrest more than once in ICU and they did not act till we the relatives, shocked by his suffering made noise. He at one time got up to 50 breaths per minute, his tongue going in and out in an obviously painful sort of reptilian manner as he tried to breathe…no one did anything…till we erupted as a family and forced them to act. None of this is of course recorded. But Physio recorded my concerns, unlike nursing staff. Physios were always excellent. That’s the recording of notes is done inside RNSH – its up to them what they record and they almost never record their own failures to act.. That time he was off the ventilator from 10am till about 5pm and he suffered, he suffered shockingly and the HCCC thinks this is normal practice. My sister (a renal Dialysis nurse of over 25years ) said his treatment was appalling and was sickened by this and she had never seen a patient treated as Don was treated at her hospital. She, along with a family friend and myself witnessed that day when the nurse ignored his distress till he got up to 50BPM (also unrecorded)
5. The removal of the ventilator at home… There were a few of us in the bedroom at the time. Three of us who witnessed the events to do with the removal of the ventilator. My eldest sister a senior Renal Dialysis Nurse, and our youngest daughter and I witnessed this event. Don caught and held the GP’s eyes flung his arm out backwards onto the top of the Ventilator (that’s how he would move his arm because of his earlier accident. He did try to retain the ventilator. The GP removed his arm and pointedly tucked it under the bedding.
For a start the “agreement” HCCC mentions was not the family’s decision nor mine, it was entirely Don’s decision. His aim was to get out of the filth and chaos and die at home. He had always held a terror of dying at RNSH and the thought of this and of going to their morgue caused him so much distress. He would have walked on hot coals to avoid this. He was an autonomous human being and held the rights to his own life right up to the end. No “agreement” to die within a given time frame to serve the fact that RNSH could not provide him with one small bit of machinery can take this away. Again this issue is one for the Human Rights commission and the courts.
No matter what was agreed in RNSH and they cannot get around this issue. Don had the right to have that ventilator on him till he was ready for it to be removed. That is a simple human right. Any deviation from that is a killing. I have spoken to Alison and my sister and examined myself, and I know at that time I felt like I was moving through pea soup. The shock of the five weeks ordeal was almost too much to bear and it was all I could do to at that stage to be upright. We have talked about it and we all felt the same - reporting numb faces, inability to act or think fast, like events were moving around us in a surreal manner, chest pains etc…but we remember clearly this event and for the HCCC to assume that they know what happened and to assume all was done properly is criminal. Don had that right to the end to say when exactly he wanted that, machine removed. We and he knew because of the medication he had been given that there were only hours left but he was entitled to be the judge of how many hours were left. That was taken from him and I feel that this was a criminal act.
It is bizarre to downplay this issue. Three of us saw this which they deny and it was accepted that he put his arm out because of pain – I don’t think so - considering the amount of pain killers he had on board at this stage in the syringe driver which was attached to his body. The GP was being pressured by the Ambulance to remove the Ventilator. I am still endeavouring to find out who that ventilator belonged to and have lodged a FOI with NSW Ambulance, as I was under the impression that that ventilator came with him and was attached to him before the ambulance arrived. My youngest sister was with him all this day and she would be able to remember this.
My sister has just responded with this “Ventilator that travelled with Don came from the hospital. He had been on it hours before the ambulance people came.” Why would the HCCC go to such lengths defend the removal of the Ventilator if they were not sure who owned it.
7. In the doc marked “Internal medical Advice” (page 7)
They say that “The critical issue here is that Mr Mackay’s eventual outcome had not been anticipated. Had it been anticipated then most clinicians would not have proceeded with Pleurodesis.”
This is a crucial point. This statement is the crux of the matter. With proper pre op assessment which they had time for it is clear that they would not have proceeded with a Pleurodesis. They themselves have made this statement. Why did they not anticipate what for Don in his condition would have made the operation more dangerous than for able bodied people? How could they not anticipate this? So for Dr ? to proceed without adequate Pre Op assessment (as admitted in the RNSH Internal Inquiry in Jan 08), what does this say about Dr ?’s capabilities? He should have anticipated and thus ensured all care was taken. It was not an emergency. He had travelled on a cold night out of Port Macquarie Base Hospital to the airport then flown to Sydney, then travelled to RNSH all without Oxygen, all without incident. They considered him well enough to give his consent almost upon arrival which is another issue to deal with, but yet the HCCC appears to be trying to drum up some critical time problem. A good doctor, wise doctor, a competent doctor would have taken the time to ensure that because of Don’s complex medical problems a full and proper assessment involving both Cardiothoracic and Spinal specialists was done. They can not excuse the inexcusable.
As to Don’s being adequately informed prior to consenting to the surgery. I know, because I was with Don all day on the long day while we waited for the Air Ambulance to arrive – he and I believed he was travelling to RNSH to have a simple lung drain and biopsies done. That’s it.
A Pleurodesis takes some explaining. It also carries the very real risks of failure and when it fails it can be fatal and has been for others. When it fails people can go on to develop Acute respiratory Distress Syndrome (ARDS) and some people never recover from this. In Don’s case this outcome was more likely than for others because of his marginal respiratory reserves due to Quadriplegia of 25 years duration. I lived with my husband for 35 years and we almost finished each others sentences. I have spoken with my two daughters and my sister Veronica who was closely involved. Don always had a great fear of surgery. There is no way he would have ever consented to that surgery had the risks been explained to him properly. I know that. We know that and that is certainty. It just would not happen. He would have consented to surgery if it was explained to him in a manner which downplayed risks or never even mentioned them. Dr Huang can not recall what he said but the HCCC say “No procedures are without risk and this was discussed in the consenting process. In view of this it was reasonable to proceed.”
I was told by RNSH Internal Inquiry that Dr ?? could not recall what he told Don about the operation. How can the HCCC be so sure he was warned of the risks? Once again they are bending over backwards to protect the medical profession regardless of the death of their patient.
My husband would never have gone ahead with any surgery with such risks unless I was there. When he was signed up he was exhausted from the long day awaiting the Air Ambulance, and debilitated because of his breathing problems. Dr ?? signed him, up well before 11pm. He had only arrived on trolley at RNSH by 10pm, how could adequate assessment have been done in this time. I know what it takes to get Don into a settled place for the evening; s I knew what I was doing when I got Don settled and in a relaxed condition for the night at home and it would usually take about a good hour just to do what needed to be done. The scenario suggested by the HCCC is impossible. Again I have to query their willingness to constantly defend the doctor and hospital. I thought their role was to INVESTIGATE, not to defend.
The HCCC goes on to say in this section to do with Pre Op “There is no criticism of the surgical work up prior to Pleurodesis”. This flies directly in the face of the Internal Royal North Shore Inquiry which found many instances when the treatment was unacceptable how can the HCCC then state what they have. Their complaisance is odd. The whole document before me is odd and questions need to be asked.
8. Respiratory Assessment prior to surgery (page 8)
My husband’s Physiotherapist at Port Macquarie Base Hospital wrote on the report which travelled with Don in the discharge papers that “Mr Mackay has a lung age of over 100 years” This was not some throwaway comment as the HCCC says. This was a professional opinion from someone who had worked up the report, based on their knowledge of the capabilities of my husband’s lungs. If I were that Physiotherapist I would be very alarmed to see my professionalism downgraded to be “simply comments” as the HCCC states. So the Physio’s professional opinion holds “no insight into surgical fitness”. I think that had they considered this professional opinion the outcome would have been very different. This is shocking indictment on the HCCC’s Independence, and skills at neutral investigation.
Again the HCCC in this section tries to “work up” (for the benefit of those doctors who did and have admitted inadequate pre op assessment) almost a state of emergency, such that any time wasted would mean Don’s life. If it was all such an emergency, his slowly building up “moderate right pleural effusion” which Don and I coped with for months at home while the doctors dithered about in port Macquarie, as they state then where is their proof for this? They were not there. Waiting one day, allowing time for adequate assessment so that they did not proceed blind into his lungs may have saved his life. Acting conservatively as opposed to aggressively because of the state of his health would have been what a good doctor would have done, a wise doctor, a competent doctor. Here he was, finally in RNSH with all the emergency equipment available which we did not have at home, and they could not afford him the duty of care to assess him properly before destroying both his lungs.
Three days after this dangerous surgery both his lungs collapsed. Please explain how this was allowed to happen somebody?
In Para three on this page the HCCC again contradict themselves. They state that a respiratory physician was consulted later (in ICU) but that it was unlikely that surgery would not have gone ahead had this speciality have been consulted prior to surgery. Why? I spoke with Dr ??? who is a Spinal Specialist attached to RNSH and had dealt with Don previously. This was after his death. She had been away and was shocked to hear he had died. She was also shocked to hear he had been given a Pleurodesis and she expressed this to me. She had assumed he was travelling to RNSH for a simple lung drain and biopsies. She also expressed the thought that for Don the conservative treatment might mean that he may in the future have to have the odd lung drain if the fluid built up again but that this was acceptable and more designed to keep him comfortable. Don and I and also Dr ??? knew well that Don would not live for many more years because there were so many problems (he had complex medical issues as stated many times). We accepted this. We can not accept what RNSH inflicted on Don and the HCCC should hang their heads in shame. Please can someone speak to Dr ??? about this conversation? After all she was the Spinal Specialist but apparently she was away on four weeks holiday when Don was in RNSH for the five weeks. It would have been really good if someone like her from Sinal had become involved when Don was admitted, but as the NUM from Spinal told me the day of his respiratory and with some attitude, when I queried how he had been allowed to come to arrest after all my warnings - “He was lucky to get a bed in here as he wasn’t admitted under Spinal”.
It is odd here to see that Spinal physician was consulted in ICU. From my understanding, although the ICU and cardiothoracic doctors requested Spinal’s input on more than one occasion, I was told that Spinal refused to become involved. Who exactly was the Spinal Physician and when and what did he or she achieve please?
9. This next statement from HCCC is bizarre. They say “Input of either physician in the pre operative stage would have assisted in the post operative management but Mr Mackay’s post operative course would still have been stormy. In view of this there has been no significant departure from the standard of care expected.” “Stormy” This is unbelievable. Just unbelievable. RNSH and the HCCC have gone to great lengths to downplay the seriousness of Don’s surgery. They sent him out of theatre basically vacuuming his lungs, not suctioning – They hid that when discovered. Instead of then watching him very carefully and taking note of all our concerns which we expressed in the days up till the Respiratory Arrest, they dropped back his observations to six hourly which is criminal, and they ignored our increasing concerns (Cardiothoracic''s statement that they were “unconcerned”) and here they say “Mr Mackay’s post operative course would still have been stormy.”
He would have had better care in a nursing home compared to the negligent lack of care and attention he received in Spinal. So again they contradict themselves. If his post op was always going to be stormy why did they not do a proper pre op assessment and have a duty of care towards my husband Don?
10. Again (bottom page 8) they give the hospital the all clear by saying in relation to pre op assessments “appropriate assessments were undertaken.” RNSH Internal Inquiry flies totally against this statement. They admit a plethora of problems and their RCA recommended systemic changes be made to avoid what happened to Don reoccurring. Yet the HCCC says there was no problem and that there “has been no significant departure from the standard of care expected.” Maybe this is the case inside NSW public hospitals and maybe the HCCC is accepting that the standard of care they expect is dangerously low and that whatever happens inside RNSH is fine because no one will ever do anything about it. Who else can we the patients and relatives turn to if the Investigative body, has become an apologist for a broken down and dangerously corrupt health system in which no one is safe any longer, much less an old Quadriplegic who’s use by date it appears they considered had expired. That’s how my husband was treated, exactly that.
11. And to cap it all off (page 10) re that dropped suction tube (the culprit who I could not recall because inside RNSH no nurses and doctors had ID badges which is dangerous in a hospital on its own – could be anyone – re the suction tube being dropped “there has been no significant departure from the standard of care expected.” . So because our mouths are not a sterile environment its fine to reuse the tube without cleaning and if one drops to the floor its not a disciplinary matter to pick it up and put it back in a morbidly ill patient’s mouth. That’s the acceptable state of health care which the HCCC thinks is appropriate in NSW in 2007 and now 2008.
When you are the wife or daughter (etc) of someone who is severely disabled, the relationship is different, if there is real love between you. It is a total immersion into the being of each other. Don was emotionally a strong man and he cared for and protected us all and we, as much as we were able to, cared for and protected him. But we weren’t able to protect him in his last five weeks because of the lies they told us and because of the covering up of mistakes which killed him. His brutalisation and degradation was beyond imagining and still, haunts us all. He deserves the justice that a fair, open and full inquiry would bring about. "
Not long now till the almost 2000 names are lodged with Parliament and hopefully by then the NSW Coroner will have come to a decision to Investigate. -
This is a long post and will not interest everyone - I was going to try and condense but ran out of will - how do you just print out about a paragraph and then have a link "more" so that only if you are really interested do you wade through the lot?
Preliminary analysis of the NSW Health Care Complaints Commission’s refusal to investigate the death of Donald William Mackay after his surgery and treatment inside RNSH between 11th April 2007 and 17th May 2007 the day he died.
We are just starting to look over the letter and attachment sent to me from the Health Care Complaints Commission. Already we have queries and statements which show that the Health care Complaints Commission have put their name to documents with flaws in them big enough to drive a truck through.
For us the response of the HCCC, verges on the edge of corruption and it appears evident in their so called investigation that they have more than bent over backwards to ensure that no one is ever to be called to account for my husband’s dreadful neglect and lack of care inside Royal North Shore hospital.
To start with… almost without exception the HCCC have covered up every instance of neglect in Don’s pre op care and post op care. RNSH Internal Inquiry in early Jan ’08 shows clearly the many areas of inadequacy in Don’s hospitalisaton. The HCCC seem hell bent on ensuring that no one from RNSH is accountable and have left no stone unturned in seeking to absolve RNSH and the Doctors involved that they have written their response to me in the vein that all was well and nothing was done wrong, which is in direct opposition to the findings of the Internal RNSH Investigation.
We have to on behalf of the shocking suffering of my husband and our father ask why they would do this.
1. Pleurodesis – They have glossed over the fact that RNSH in their Internal Inquiry admit that the use of Ungraded Talc is a problem and can lead to Acute respiratory Distress Syndrome, as happened to Don. They now no longer use this ungraded Talc because of Don’s death. I would have thought that this would have had some relevance to the HCCC but all they say is “The use of talc fro Pleurodesis is common in Australia.” RNSH always had available to them the talc they now use (I hope they are still not using ungraded talc) and it is and has been for some time established in the literature that ungraded talc has dangers. Why were they using this product on patients, armed with that knowledge?
2. They say “Time was limited but it appears appropriate assessments were undertaken. Ideally further assessments would have assisted with post operative rehabilitation.”
Why was time limited when Don had travelled down from Port Macquarie Base Hospital, “alert and orientated” and totally breathing independently? There was no emergency. The fluid in the Pleural lining had built up since before Dec 2006 – was still in April (when he went to RNSH) a moderate Pleural Effusion and it was not recurrent as they like to repeat… it was only a reacummulation of the some of the fluid which was drawn off in March 2007. There was no history of recurrent effusion. I had had the care of Don in our home without medical help in the months before and nothing happened to him to cause what happened to him in only three days after they went into his lungs without all the Pre op procedures that any Australian Cardiothoracic Surgeon would have followed. All this is admitted by RNSH in their January Report and directions to avoid a repeat listed in their RCA but the HCCC have said there was no significant departure from the expected standard of care. How can both things be true?
3. The HCCC’s expert advised them that there would be no adverse outcome from having the lung of a Quadriplegic man suctioned at ten times the pressure for almost 22 hours. Please can some one tell my how this can be true? If there would be no adverse outcome from having the lung suctioned at this measure what is the measure which would cause the Pleurodesis to fail as it did? Bear in mind that the suctioning of the pleural lining was not to remove fluid as that should have all been removed prior to the Pleurodesis, the suctioning was to suction the pleural lining together like suctioning a plastic bag to stick the walls together so as to ensure the Pleurodesis worked. It failed. Their expert basically told them that suctioning Don’s lungs for 22 plus hours would only have caused him pain…nothing else. He was a Quadriplegic with limited respiratory reserves…and lung injury, as we knew at home from a simple cold to flu could prove fatal…we knew this. Their expert who remains nameless says nothing would have come from suctioning his lungs at 10 times the value. Therefore I have to ask why don’t they suction all lungs at 10 times the value and be done with it. Nothing happens. No harm is done. They say that “the failure of staff (these are Cardiothoracic doctors we are talking about) to realise that the pressures were too high is a departure from acceptable standards of care, however given the expert advice there would not appear to be sufficient grounds to warrant disciplinary; action to be taken.”
So it is fine in NSW to suction a very ill Quadriplegic’s lungs at 10 times the value recommended… and being a Quadriplegic as mentioned in their “report the pain would be minimal (see Internal report” this all beggars belief and knowing Don’s heightened sensitivity to pain in that area, I therefore question the capabilities of their expert. Do they not comprehend the seriousness of unrelieved pain in any Quadriplegic, especially my husband who suffered daily bouts of Autonomic Dysreflexia which meant that any unrelieved pain caused his blood pressure to skyrocket? He was hypersensitive to internal organ pain. On this statement alone the HCCC show their shocking ignorance.
What is being said here is that their expert believes Don would not have felt much pain because of Quadriplegia. I believe that the Human Rights Commission would be very interested in this declaration by the HCCC. Don had been on opiates Fentanyl at first and then Physeptone) for years with special provision from the authorities because of the intense levels of pain he suffered. His life was still pain filled as the medication was unable to cover it. Some days his face would be almost grey with pain. On a rare day he would come out smiling and say “There is no pain right now – it’s wonderful”
4. Item “6” on page three is astounding. Titled “Alleged failure to discuss with family the failed Pleurodesis”
They say “For example the medical records on 15th May 2007 Mr Mackay was noted as being in ‘a stable but critical condition’. The use of words such as these would not be construed to mean that medical staff at this point felt it was not possible for your husband to recover.”
This is a statement to makes me feel sick with the memories. On the Monday 14th May 2007 I was called to a so called conference…not a family conference… just me and them… and told with box of tissues always at the ready that Don was dying and what did I want to do. This was 2 days before he died! I was relieved as was Don because finally he was going to be allowed to die something he had tried to make happen since 15th April 2007. How can the HCCC state the above in light of this? We were from then on in the hands of Palliative care…Who does the research for the HCCC?
They say that “there are many notes in the records stating that the family was kept aware of the situation.” While the people writing those notes may say that this was not the case. Not once were we told that they had suctioned his lungs at 31KPA in Spinal in the first day. Not once were we told that the Pleurodesis had failed and that he had developed Acute respiratory Distress Syndrome. I could go on and on here about the things we were not told which we discovered only later in the notes. We were only told what they wanted us to know and we did ask Cardiothoracic a direct question about the Pleurodesis and one of their Doctors became quite aggressive with me in avoiding answering. My daughter Melissa and my husband witnessed this. That doctor returned and said he was sorry which my daughter and Don also witnessed but still he never told us the truth. But the HCCC is satisfied. Once again I have to defend what I saw and knew and later found out.
5. They also mention here the “multiple extubations” Don was forced to endure. The torture I mentioned to the HCCC was what I witnessed. ICU left him far too long after extubating him. He was allowed to come to the point of Respiratory Arrest more than once in ICU and they did not act till we the relatives, shocked by his suffering made noise. He at one time got up to 50 breaths per minute, his tongue going in and out in an obviously painful sort of reptilian manner as he tried to breathe…no one did anything…till we erupted as a family and forced them to act. None of this is of course recorded. But Physio recorded my concerns, unlike nursing staff. Physios were always excellent. That’s the recording of notes is done inside RNSH – its up to them what they record and they almost never record their own failures to act.. That time he was off the ventilator from 10am till about 5pm and he suffered, he suffered shockingly and the HCCC thinks this is normal practice. My sister (a renal Dialysis nurse of over 25years ) said his treatment was appalling and was sickened by this and she had never seen a patient treated as Don was treated at her hospital. She, along with a family friend and myself witnessed that day when the nurse ignored his distress till he got up to 50BPM (also unrecorded)
5. The removal of the ventilator at home… There were a few of us in the bedroom at the time. Three of us who witnessed the events to do with the removal of the ventilator. My eldest sister a senior Renal Dialysis Nurse, and our youngest daughter and I witnessed this event. Don caught and held the GP’s eyes flung his arm out backwards onto the top of the Ventilator (that’s how he would move his arm because of his earlier accident. He did try to retain the ventilator. The GP removed his arm and pointedly tucked it under the bedding.
For a start the “agreement” HCCC mentions was not the family’s decision nor mine, it was entirely Don’s decision. His aim was to get out of the filth and chaos and die at home. He had always held a terror of dying at RNSH and the thought of this and of going to their morgue caused him so much distress. He would have walked on hot coals to avoid this. He was an autonomous human being and held the rights to his own life right up to the end. No “agreement” to die within a given time frame to serve the fact that RNSH could not provide him with one small bit of machinery can take this away. Again this issue is one for the Human Rights commission and the courts.
No matter what was agreed in RNSH and they cannot get around this issue. Don had the right to have that ventilator on him till he was ready for it to be removed. That is a simple human right. Any deviation from that is a killing. I have spoken to Alison and my sister and examined myself, and I know at that time I felt like I was moving through pea soup. The shock of the five weeks ordeal was almost too much to bear and it was all I could do to at that stage to be upright. We have talked about it and we all felt the same - reporting numb faces, inability to act or think fast, like events were moving around us in a surreal manner, chest pains etc…but we remember clearly this event and for the HCCC to assume that they know what happened and to assume all was done properly is criminal. Don had that right to the end to say when exactly he wanted that, machine removed. We and he knew because of the medication he had been given that there were only hours left but he was entitled to be the judge of how many hours were left. That was taken from him and I feel that this was a criminal act.
It is bizarre to downplay this issue. Three of us saw this which they deny and it was accepted that he put his arm out because of pain – I don’t think so - considering the amount of pain killers he had on board at this stage in the syringe driver which was attached to his body. The GP was being pressured by the Ambulance to remove the Ventilator. I am still endeavouring to find out who that ventilator belonged to and have lodged a FOI with NSW Ambulance, as I was under the impression that that ventilator came with him and was attached to him before the ambulance arrived. My youngest sister was with him all this day and she would be able to remember this.
My sister has just responded with this “Ventilator that travelled with Don came from the hospital. He had been on it hours before the ambulance people came.” Why would the HCCC go to such lengths defend the removal of the Ventilator if they were not sure who owned it.
7. In the doc marked “Internal medical Advice” (page 7)
They say that “The critical issue here is that Mr Mackay’s eventual outcome had not been anticipated. Had it been anticipated then most clinicians would not have proceeded with Pleurodesis.”
This is a crucial point. This statement is the crux of the matter. With proper pre op assessment which they had time for it is clear that they would not have proceeded with a Pleurodesis. They themselves have made this statement. Why did they not anticipate what for Don in his condition would have made the operation more dangerous than for able bodied people? How could they not anticipate this? So for Dr ? to proceed without adequate Pre Op assessment (as admitted in the RNSH Internal Inquiry in Jan 08), what does this say about Dr ?’s capabilities? He should have anticipated and thus ensured all care was taken. It was not an emergency. He had travelled on a cold night out of Port Macquarie Base Hospital to the airport then flown to Sydney, then travelled to RNSH all without Oxygen, all without incident. They considered him well enough to give his consent almost upon arrival which is another issue to deal with, but yet the HCCC appears to be trying to drum up some critical time problem. A good doctor, wise doctor, a competent doctor would have taken the time to ensure that because of Don’s complex medical problems a full and proper assessment involving both Cardiothoracic and Spinal specialists was done. They can not excuse the inexcusable.
As to Don’s being adequately informed prior to consenting to the surgery. I know, because I was with Don all day on the long day while we waited for the Air Ambulance to arrive – he and I believed he was travelling to RNSH to have a simple lung drain and biopsies done. That’s it.
A Pleurodesis takes some explaining. It also carries the very real risks of failure and when it fails it can be fatal and has been for others. When it fails people can go on to develop Acute respiratory Distress Syndrome (ARDS) and some people never recover from this. In Don’s case this outcome was more likely than for others because of his marginal respiratory reserves due to Quadriplegia of 25 years duration. I lived with my husband for 35 years and we almost finished each others sentences. I have spoken with my two daughters and my sister Veronica who was closely involved. Don always had a great fear of surgery. There is no way he would have ever consented to that surgery had the risks been explained to him properly. I know that. We know that and that is certainty. It just would not happen. He would have consented to surgery if it was explained to him in a manner which downplayed risks or never even mentioned them. Dr Huang can not recall what he said but the HCCC say “No procedures are without risk and this was discussed in the consenting process. In view of this it was reasonable to proceed.”
I was told by RNSH Internal Inquiry that Dr ?? could not recall what he told Don about the operation. How can the HCCC be so sure he was warned of the risks? Once again they are bending over backwards to protect the medical profession regardless of the death of their patient.
My husband would never have gone ahead with any surgery with such risks unless I was there. When he was signed up he was exhausted from the long day awaiting the Air Ambulance, and debilitated because of his breathing problems. Dr ?? signed him, up well before 11pm. He had only arrived on trolley at RNSH by 10pm, how could adequate assessment have been done in this time. I know what it takes to get Don into a settled place for the evening; s I knew what I was doing when I got Don settled and in a relaxed condition for the night at home and it would usually take about a good hour just to do what needed to be done. The scenario suggested by the HCCC is impossible. Again I have to query their willingness to constantly defend the doctor and hospital. I thought their role was to INVESTIGATE, not to defend.
The HCCC goes on to say in this section to do with Pre Op “There is no criticism of the surgical work up prior to Pleurodesis”. This flies directly in the face of the Internal Royal North Shore Inquiry which found many instances when the treatment was unacceptable how can the HCCC then state what they have. Their complaisance is odd. The whole document before me is odd and questions need to be asked.
8. Respiratory Assessment prior to surgery (page 8)
My husband’s Physiotherapist at Port Macquarie Base Hospital wrote on the report which travelled with Don in the discharge papers that “Mr Mackay has a lung age of over 100 years” This was not some throwaway comment as the HCCC says. This was a professional opinion from someone who had worked up the report, based on their knowledge of the capabilities of my husband’s lungs. If I were that Physiotherapist I would be very alarmed to see my professionalism downgraded to be “simply comments” as the HCCC states. So the Physio’s professional opinion holds “no insight into surgical fitness”. I think that had they considered this professional opinion the outcome would have been very different. This is shocking indictment on the HCCC’s Independence, and skills at neutral investigation.
Again the HCCC in this section tries to “work up” (for the benefit of those doctors who did and have admitted inadequate pre op assessment) almost a state of emergency, such that any time wasted would mean Don’s life. If it was all such an emergency, his slowly building up “moderate right pleural effusion” which Don and I coped with for months at home while the doctors dithered about in port Macquarie, as they state then where is their proof for this? They were not there. Waiting one day, allowing time for adequate assessment so that they did not proceed blind into his lungs may have saved his life. Acting conservatively as opposed to aggressively because of the state of his health would have been what a good doctor would have done, a wise doctor, a competent doctor. Here he was, finally in RNSH with all the emergency equipment available which we did not have at home, and they could not afford him the duty of care to assess him properly before destroying both his lungs.
Three days after this dangerous surgery both his lungs collapsed. Please explain how this was allowed to happen somebody?
In Para three on this page the HCCC again contradict themselves. They state that a respiratory physician was consulted later (in ICU) but that it was unlikely that surgery would not have gone ahead had this speciality have been consulted prior to surgery. Why? I spoke with Dr ??? who is a Spinal Specialist attached to RNSH and had dealt with Don previously. This was after his death. She had been away and was shocked to hear he had died. She was also shocked to hear he had been given a Pleurodesis and she expressed this to me. She had assumed he was travelling to RNSH for a simple lung drain and biopsies. She also expressed the thought that for Don the conservative treatment might mean that he may in the future have to have the odd lung drain if the fluid built up again but that this was acceptable and more designed to keep him comfortable. Don and I and also Dr ??? knew well that Don would not live for many more years because there were so many problems (he had complex medical issues as stated many times). We accepted this. We can not accept what RNSH inflicted on Don and the HCCC should hang their heads in shame. Please can someone speak to Dr ??? about this conversation? After all she was the Spinal Specialist but apparently she was away on four weeks holiday when Don was in RNSH for the five weeks. It would have been really good if someone like her from Sinal had become involved when Don was admitted, but as the NUM from Spinal told me the day of his respiratory and with some attitude, when I queried how he had been allowed to come to arrest after all my warnings - “He was lucky to get a bed in here as he wasn’t admitted under Spinal”.
It is odd here to see that Spinal physician was consulted in ICU. From my understanding, although the ICU and cardiothoracic doctors requested Spinal’s input on more than one occasion, I was told that Spinal refused to become involved. Who exactly was the Spinal Physician and when and what did he or she achieve please?
9. This next statement from HCCC is bizarre. They say “Input of either physician in the pre operative stage would have assisted in the post operative management but Mr Mackay’s post operative course would still have been stormy. In view of this there has been no significant departure from the standard of care expected.” “Stormy” This is unbelievable. Just unbelievable. RNSH and the HCCC have gone to great lengths to downplay the seriousness of Don’s surgery. They sent him out of theatre basically vacuuming his lungs, not suctioning – They hid that when discovered. Instead of then watching him very carefully and taking note of all our concerns which we expressed in the days up till the Respiratory Arrest, they dropped back his observations to six hourly which is criminal, and they ignored our increasing concerns (Cardiothoracic''s statement that they were “unconcerned”) and here they say “Mr Mackay’s post operative course would still have been stormy.”
He would have had better care in a nursing home compared to the negligent lack of care and attention he received in Spinal. So again they contradict themselves. If his post op was always going to be stormy why did they not do a proper pre op assessment and have a duty of care towards my husband Don?
10. Again (bottom page 8) they give the hospital the all clear by saying in relation to pre op assessments “appropriate assessments were undertaken.” RNSH Internal Inquiry flies totally against this statement. They admit a plethora of problems and their RCA recommended systemic changes be made to avoid what happened to Don reoccurring. Yet the HCCC says there was no problem and that there “has been no significant departure from the standard of care expected.” Maybe this is the case inside NSW public hospitals and maybe the HCCC is accepting that the standard of care they expect is dangerously low and that whatever happens inside RNSH is fine because no one will ever do anything about it. Who else can we the patients and relatives turn to if the Investigative body, has become an apologist for a broken down and dangerously corrupt health system in which no one is safe any longer, much less an old Quadriplegic who’s use by date it appears they considered had expired. That’s how my husband was treated, exactly that.
11. And to cap it all off (page 10) re that dropped suction tube (the culprit who I could not recall because inside RNSH no nurses and doctors had ID badges which is dangerous in a hospital on its own – could be anyone – re the suction tube being dropped “there has been no significant departure from the standard of care expected.” . So because our mouths are not a sterile environment its fine to reuse the tube without cleaning and if one drops to the floor its not a disciplinary matter to pick it up and put it back in a morbidly ill patient’s mouth. That’s the acceptable state of health care which the HCCC thinks is appropriate in NSW in 2007 and now 2008.
When you are the wife or daughter (etc) of someone who is severely disabled, the relationship is different, if there is real love between you. It is a total immersion into the being of each other. Don was emotionally a strong man and he cared for and protected us all and we, as much as we were able to, cared for and protected him. But we weren’t able to protect him in his last five weeks because of the lies they told us and because of the covering up of mistakes which killed him. His brutalisation and degradation was beyond imagining and still, haunts us all. He deserves the justice that a fair, open and full inquiry would bring about. "
Not long now till the almost 2000 names are lodged with Parliament and hopefully by then the NSW Coroner will have come to a decision to Investigate. -
Paranoia.
I had some moments of pure paranoia a bit over a week back - this is understandable as I have been treading pretty heavily on some toes and its not my way to back away from a fight - I may go sideways, or retreat but if something is wrong then I have never felt it was someone elses' place to sort out my problems.
I do admit to sitting in the car on the drive out of town to home, and wishing that there was a White Knight - and then I come to the realisation that my own conscience is my White Knight - and I am sure I am getting help from somewhere outside of this dimension - I spent 35 years with a White Knight - and now its my turn to be his.
I had booked my VW van in for a full service etc, something I do because its 1996 and I know things are getting worn - as it was that set me back over $1,000 which I am still reeling from - there were a lot of things wrong with it - new brake pads, new fan belts, door seals to stop the rain from pooling etc etc -
then the mechanic who has worked on this car for some time said that my brake cable was almost severed. I asked him how this could have happened and he said he'd never seen anything like it ans it was all caught up in the workings of the inside of the wheel. I was on my way home from the street stand I have been on gathering names for my petition and I am always emotionally shaky after that - he jokingly added "You don't have any enemies do you?"
I don't know if anyone has any mechanical knowledge out there but is it possible for the brake cable to get tangled in the workings of the wheel and to be almost severed...?
If so then that has to be a design flaw, but these VW's are pretty safe vans with a lot more care in their design than others - If it can happen accidentally then just unlucky and sooo pleased it was discovered before I got out on the highway - but then a thought snakes its horrible way in and I wish I wasn't having that thought - I sort of hold to the thought that when you are giving individuals and the Government a ;lot of curry that it is the done thing to give you a bit of a warning to lay off - so I figure that someone was not trying to make me run into a telegraph pole - then I am not sure -
I had some moments of pure paranoia a bit over a week back - this is understandable as I have been treading pretty heavily on some toes and its not my way to back away from a fight - I may go sideways, or retreat but if something is wrong then I have never felt it was someone elses' place to sort out my problems.
I do admit to sitting in the car on the drive out of town to home, and wishing that there was a White Knight - and then I come to the realisation that my own conscience is my White Knight - and I am sure I am getting help from somewhere outside of this dimension - I spent 35 years with a White Knight - and now its my turn to be his.
I had booked my VW van in for a full service etc, something I do because its 1996 and I know things are getting worn - as it was that set me back over $1,000 which I am still reeling from - there were a lot of things wrong with it - new brake pads, new fan belts, door seals to stop the rain from pooling etc etc -
then the mechanic who has worked on this car for some time said that my brake cable was almost severed. I asked him how this could have happened and he said he'd never seen anything like it ans it was all caught up in the workings of the inside of the wheel. I was on my way home from the street stand I have been on gathering names for my petition and I am always emotionally shaky after that - he jokingly added "You don't have any enemies do you?"
I don't know if anyone has any mechanical knowledge out there but is it possible for the brake cable to get tangled in the workings of the wheel and to be almost severed...?
If so then that has to be a design flaw, but these VW's are pretty safe vans with a lot more care in their design than others - If it can happen accidentally then just unlucky and sooo pleased it was discovered before I got out on the highway - but then a thought snakes its horrible way in and I wish I wasn't having that thought - I sort of hold to the thought that when you are giving individuals and the Government a ;lot of curry that it is the done thing to give you a bit of a warning to lay off - so I figure that someone was not trying to make me run into a telegraph pole - then I am not sure -
Sunday, May 25, 2008
Brand new day.
I was down the street yesterday and there was an old woman and her son (?) he was about 40 and in an electric chair just like Don’s was. He looked as if he had Muscular Dystrophy or MS or something. Intelligent eyes above a severely twisted body. She was giving him his lunch, and it took ages for him to be able to swallow…each swallow was an effort. She was in no hurry. It was all calm and quite beautiful in its own way. You could see the love between them. Then he had a drink and almost couldn’t catch his breath. She was helpful but not panicky . It made me cry and I had to leave. People have no idea of the love that grows like this. Life is more precious because it can go at any time, any day. And no doubt people assume as friends of ours did assume that it was all “suffering” when I was not. We had so much fun and no doubt this pair did also.
A person I know here wrote a letter to the editor in support of our cause, after the Medical Anon letter. She was too late to have it printed but she gave it to me anyway. One paragraph was just so beautiful. I had not realised that people assumed our lives must be ones of suffering but obviously people did. This is what she wrote,
"Anyone who has visited the Mackay home would have seen on walls and dressers, a living testament of the loving family life the Mackay's shared - letters, funny drawings, handwritten poems by the children, photographs of special occasions, the dressing up games and plays they put on, and family gatherings. Dozens of them all so clearly showing a family at peace with themselves and so creative in having fun despite Don's Quadriplegia. The loving bonds between them and the strength and
supportiveness of that family was a revelation to me and would be to anonymous too I imagine. I had always thought that a tragedy like Don's accident and subsequent Quadriplegia could only lead to a life of suffering. Now I see how strongly it can unite a family. Don was the wise elder of the clan with still a bit of the larrikin in him. His life was of great value... "
I felt so humbled when I read this, but what really surprised me was that people thought we must have suffering sorts of lives. This thought never occurred to me in the 25 years of Don's injury.
And the funny thing is that when you or a family member has a severe disability its sort of as if you become public property... in that people make assumptions about how it must be in the privacy of your home, when I know with my few married couple acquaintances the thought has never really occurred to me. I may have thought that he or she was a bit of a mongrel bastard or something and I wouldn't want to be married to them, but the inner workings of their lives never crossed my mind.
Our complete lack of privacy rankled us both... but it was something we had to accept, as it was impossible for us to exist without outside nursing help. The cost of staying sane for me, met I had to accept that bit of nursing care which got Don up in the morning while I had a bit of quiet time.
At times it felt like we were living in a fishbowl, having to accept that nurses we employed, came to the house for two hours each morning and that they would bring all their emotional shit with them and lay it about our shoulders before many people had even gotten out of bed. Poor Don would be trapped in the shower while they rattled on about their aches and pains, about their kids problems ect etc... and in the middle of this I would hear his quiet voice talking to them and telling them good things as almost a sort of older brother...
He would come out and look at me sometimes exhausted already from their shit... cross his eyes and pull faces that they couldn't see but I could...
It just all came to me watching that mum and son or whatever... I also shouldn't assume what they are to each other... but I can assume about the great love between them because it was as visible as if they were tied together with a golden cord.
It is morning now again. The nights are too long these days. The angel of the morning has strobed its light amongst the dark tree tops and I know I will be okay again. Its a one day at a time thing for me.
I had some really bad news yesterday from the Health Care Complaints Commission which I may post about some time or not...I also had a very disturbing email from my youngest sister in New Zealand, who couldn't be bothered returning my calls, but could take the time to email to me something which obviously she did not have the courage to say to me. I will no doubt be dealing with the consequences of her onslaught today. She's the family's "golden child" still at 45. I used to be so close to her once. Its still worth saving but I am not in the frame of mind to do to much about it right now...just flat out getting through these days.
I was down the street yesterday and there was an old woman and her son (?) he was about 40 and in an electric chair just like Don’s was. He looked as if he had Muscular Dystrophy or MS or something. Intelligent eyes above a severely twisted body. She was giving him his lunch, and it took ages for him to be able to swallow…each swallow was an effort. She was in no hurry. It was all calm and quite beautiful in its own way. You could see the love between them. Then he had a drink and almost couldn’t catch his breath. She was helpful but not panicky . It made me cry and I had to leave. People have no idea of the love that grows like this. Life is more precious because it can go at any time, any day. And no doubt people assume as friends of ours did assume that it was all “suffering” when I was not. We had so much fun and no doubt this pair did also.
A person I know here wrote a letter to the editor in support of our cause, after the Medical Anon letter. She was too late to have it printed but she gave it to me anyway. One paragraph was just so beautiful. I had not realised that people assumed our lives must be ones of suffering but obviously people did. This is what she wrote,
"Anyone who has visited the Mackay home would have seen on walls and dressers, a living testament of the loving family life the Mackay's shared - letters, funny drawings, handwritten poems by the children, photographs of special occasions, the dressing up games and plays they put on, and family gatherings. Dozens of them all so clearly showing a family at peace with themselves and so creative in having fun despite Don's Quadriplegia. The loving bonds between them and the strength and
supportiveness of that family was a revelation to me and would be to anonymous too I imagine. I had always thought that a tragedy like Don's accident and subsequent Quadriplegia could only lead to a life of suffering. Now I see how strongly it can unite a family. Don was the wise elder of the clan with still a bit of the larrikin in him. His life was of great value... "I felt so humbled when I read this, but what really surprised me was that people thought we must have suffering sorts of lives. This thought never occurred to me in the 25 years of Don's injury.
And the funny thing is that when you or a family member has a severe disability its sort of as if you become public property... in that people make assumptions about how it must be in the privacy of your home, when I know with my few married couple acquaintances the thought has never really occurred to me. I may have thought that he or she was a bit of a mongrel bastard or something and I wouldn't want to be married to them, but the inner workings of their lives never crossed my mind.
Our complete lack of privacy rankled us both... but it was something we had to accept, as it was impossible for us to exist without outside nursing help. The cost of staying sane for me, met I had to accept that bit of nursing care which got Don up in the morning while I had a bit of quiet time.
At times it felt like we were living in a fishbowl, having to accept that nurses we employed, came to the house for two hours each morning and that they would bring all their emotional shit with them and lay it about our shoulders before many people had even gotten out of bed. Poor Don would be trapped in the shower while they rattled on about their aches and pains, about their kids problems ect etc... and in the middle of this I would hear his quiet voice talking to them and telling them good things as almost a sort of older brother...
He would come out and look at me sometimes exhausted already from their shit... cross his eyes and pull faces that they couldn't see but I could...
It just all came to me watching that mum and son or whatever... I also shouldn't assume what they are to each other... but I can assume about the great love between them because it was as visible as if they were tied together with a golden cord.
It is morning now again. The nights are too long these days. The angel of the morning has strobed its light amongst the dark tree tops and I know I will be okay again. Its a one day at a time thing for me.
I had some really bad news yesterday from the Health Care Complaints Commission which I may post about some time or not...I also had a very disturbing email from my youngest sister in New Zealand, who couldn't be bothered returning my calls, but could take the time to email to me something which obviously she did not have the courage to say to me. I will no doubt be dealing with the consequences of her onslaught today. She's the family's "golden child" still at 45. I used to be so close to her once. Its still worth saving but I am not in the frame of mind to do to much about it right now...just flat out getting through these days.
Saturday, May 24, 2008
A gift from my sister
My sister gave me a lovely gift when she left. She always finds something for me each time she visits here. She does this after being here for a few days and sees things she would like me to have in my kitchen which I would never think of buying for myself. 
My sister gave me a lovely gift when she left. She always finds something for me each time she visits here. She does this after being here for a few days and sees things she would like me to have in my kitchen which I would never think of buying for myself. 
This time it was a set of dessert bowls...we are not a dessert type family but the bowls are lovely, very 1950's and the Kookaburrs loved eating out of them.
My eldest sister is generous where many are not and she can't afford to be generous. Sometimes it is those who have so little who give proportionally so much more. I wish she wouldn't really but it would be hurtful to stop her.
EC has tagged me...
List 5 things in my bag:
Bach Flower Rescue remedy Spray, Headache tablets, small book of family photos, One brush and many combs, my purse which spews small change when I open it.
List 5 favorite things in my room:
My books, ( I love my books ahhha!); A horseshoe shaped wooden desk which has my treasures in it; A pair of glasses worn by my maternal great grand mother born in the 1850’s; A mother of pearl hand mirror used by my maternal grandmother – I look into it at times and imagine her looking into it, and then my own mum and now me and some favourite photos.
List 5 things I've always wanted to do:
Lob a bag of fresh cow shit at all politicians, just to make them smell better.
Have cups of tea bought to me as I lay on pillows out in the winter sun.
Travel back to where my own mum and dad were buried and not tell the rellies who live there.
Be able to live over a certain day back 12 Jan 1982 when I could have easily stopped Don from going to work.
Have four or five kids… Happy with our two but would have loved more. I loved being just a mum more than anything.
List 5 things I am currently into:
Blogging with you lot and loving it just for PLEASURE
Painting and drawing just for PLEASURE!
Fighting a non working Gov system to gain justice for what my husband suffered and what my small family still suffers.
Holding myself in a hug at night so I can get some sleep.
Revenge… pure and simple folks. No explanation needed.. just for PLEASURE.
Now who can I tag?
http://noaccuser.blogspot.com/
Sara
http://team-gherkin.blogspot.com/
Team Gherkin
http://pittedwindshields.blogspot.com/
CS’s spot
http://naturallyoutspoken.blogspot.com/
Jules
http://www.blogger.com/profile/21683033
Cazzie
List 5 things in my bag:
Bach Flower Rescue remedy Spray, Headache tablets, small book of family photos, One brush and many combs, my purse which spews small change when I open it.
List 5 favorite things in my room:
My books, ( I love my books ahhha!); A horseshoe shaped wooden desk which has my treasures in it; A pair of glasses worn by my maternal great grand mother born in the 1850’s; A mother of pearl hand mirror used by my maternal grandmother – I look into it at times and imagine her looking into it, and then my own mum and now me and some favourite photos.
List 5 things I've always wanted to do:
Lob a bag of fresh cow shit at all politicians, just to make them smell better.
Have cups of tea bought to me as I lay on pillows out in the winter sun.
Travel back to where my own mum and dad were buried and not tell the rellies who live there.
Be able to live over a certain day back 12 Jan 1982 when I could have easily stopped Don from going to work.
Have four or five kids… Happy with our two but would have loved more. I loved being just a mum more than anything.
List 5 things I am currently into:
Blogging with you lot and loving it just for PLEASURE
Painting and drawing just for PLEASURE!
Fighting a non working Gov system to gain justice for what my husband suffered and what my small family still suffers.
Holding myself in a hug at night so I can get some sleep.
Revenge… pure and simple folks. No explanation needed.. just for PLEASURE.
Now who can I tag?
http://noaccuser.blogspot.com/
Sara
http://team-gherkin.blogspot.com/
Team Gherkin
http://pittedwindshields.blogspot.com/
CS’s spot
http://naturallyoutspoken.blogspot.com/
Jules
http://www.blogger.com/profile/21683033
Cazzie
Saturday, May 17, 2008
My sister arrived on the bus at 5am this morning for the anniversary. We went for the walk down the front to the gate and she took these lovely photos...note the daggy clothes I drove into town in hoping I didn't break down.. i didn't...it was cold and I had slept inI've written about the amazing mists we have every mornine...we are low lying and near a river...it is like a fantasy world early on... and as the sun rises it sprakles...
The dam near the gate
Out the back doorFriday, May 16, 2008
A year tomorrow.
Its so hard to believe but tomorrow 17th will mark a whole year since Don was finally allowed to die by those monstrous people who abused him so dreadfully at Royal North Shore Hospital.
I have a sense of the rightness and achievability about things I am doing. I timed my petition to end on 17th. Gathering those petitions has been the hardest thing I have ever done and not said lightly. I would come home after wards and many times it took a while for my hands to stop shaking, although out on the streets I must have looked the picture of confidence and control. It was the loneliest time. Its done now and I am waiting for the petitions which many people took away to come back in the mail box.
I collected, just by talking well over a thousand names...almost each name meant going through the whole story which became more harrowing as time passed strangely. I placed in shops and gave to people who wanted to take some home quite a few and opened my mail box yesterday to see about 10 returns, which was wonderful...hope for more in the passing days. I am hoping to get close to 2,000...call me ol positive.
The most disappointing ones have been from so called friends and relatives, most of who had to be prodded along just to put their own names and post them back although my sister Joan managed 60 which is no mean feat. She just got a clipboard and went out on the streets and did it. But then she has been injured by the medical people who failed for years to diagnose advancing breast cancer.
Its funny, all the tears at Don's funeral more so once the booze flowed, and I remember wondering "where were you all in the years before when he was so ill and we were so isolated?" all his old "mates"... not to worry. That just how it is.
How I feel now is that I have two loving daughters and although it seems we have lost the cornerstone of out little family, we haven't really. We are united because of what we saw down through all the years of his Quadriplegia, good and bad, and because we knew what a wicked and funny person he really was... something outsiders never even considered. Apart from a couple of my sisters and one friend - hey I am fifty four and I have one solid friend... and I consider I am lucky with my little group of people...I know they are all real and solid. Not everybody can claim that.
I am trying not to think of the "this time last years"... but this time last year was the last day I got to sit with my lovely man, for moments in that pigsty of a hospital, in peace, in between all the flurries of activity and excitement which surrounded his vacating that precious bed. The only way they would release him by Air Ambulance to fly home to Port Macquarie was if I drove up ahead - and for some bizarre reason it had to be me, if I would arrive there and notify them I had arrived and all was ready. Then and only then would they release him. So instead of being allowed to be with him on that last long day as I should have been, even then they had no compassion.
So on the last day we sat in the house waiting and waiting... he was supposed to arrive before lunchtime. My youngest sister was with him at least. He had known her since she was 9 in 1972 and they had some healing to do over their last visit... so that was a good thing.
On that last day I was told he may not make it on the trip, that if he died on the plane they would keep going and deliver him...
It was the strangest day...Don and I were together almost 24 hours of the day seven days of the week for decades, and on this last day he arrived surrounded by officialdom and at the house there were people everywhere.
To this day Melissa and Alison and I wish we had had the will to tell them all to piss off, which they should have known to do... and we didn't seem to be able to act. I think that may have been shock really. I recall my face feeling prickly and numb.
Anyhow, Melissa arrived last night which is wonderful. I was dreading doing these few days alone. Alison who lives a very long way away in Melbourne had been quite sick again lately, so she will be with us in spirit. One of my sisters is coming from Brisbane...
Just sometimes it really hits me, and this is the same for those who have loved as we did/do... "How can he be dead?" Simple. I know he is dead but my mind can't imagine a world in which he is not somewhere... that (if I am lucky) I will most likely live the next 20-30 years without him.
Its not like I haven't lost close family... but nothing prepared me for the rawness of how I feel inside . I can only imagine a worse thing would be the death of a child and I don't want to even go there today..
Sorry folks...couldn't sleep just had to vent. I think I will spit at the next person who uses the words "healing process"... "closure"... "letting go"... Soft PC words to cover our modern inability to just grieve, raw and black, hopefully less and less as the years pass, as we humans have done for hundreds of thousands of years...
This photo was taken about 6 months before Royal North Shore Hospital brutalised him.
Don always had these "projects" going. This one was to cover the plum tree with bird netting and safe the plums for us to eat instead. It was a stinking hot day and I am actually pleading to be released from the slavery. Jim (friend) knows this will never be allowed. Anyhow we got a frame around the tree and after hours covered and anchored a bird net around it... and the plums were huge and dark and beautiful...those the fruit fly didn't get to first... when I see shots like this I can recall how "at home" and underneath "happy" I felt most of the time. When someone like him dies its as if the foundations of the world have been suddenly booted out from under you and you are left in an insubstantial place
Its so hard to believe but tomorrow 17th will mark a whole year since Don was finally allowed to die by those monstrous people who abused him so dreadfully at Royal North Shore Hospital.
I have a sense of the rightness and achievability about things I am doing. I timed my petition to end on 17th. Gathering those petitions has been the hardest thing I have ever done and not said lightly. I would come home after wards and many times it took a while for my hands to stop shaking, although out on the streets I must have looked the picture of confidence and control. It was the loneliest time. Its done now and I am waiting for the petitions which many people took away to come back in the mail box.
I collected, just by talking well over a thousand names...almost each name meant going through the whole story which became more harrowing as time passed strangely. I placed in shops and gave to people who wanted to take some home quite a few and opened my mail box yesterday to see about 10 returns, which was wonderful...hope for more in the passing days. I am hoping to get close to 2,000...call me ol positive.
The most disappointing ones have been from so called friends and relatives, most of who had to be prodded along just to put their own names and post them back although my sister Joan managed 60 which is no mean feat. She just got a clipboard and went out on the streets and did it. But then she has been injured by the medical people who failed for years to diagnose advancing breast cancer.
Its funny, all the tears at Don's funeral more so once the booze flowed, and I remember wondering "where were you all in the years before when he was so ill and we were so isolated?" all his old "mates"... not to worry. That just how it is.
How I feel now is that I have two loving daughters and although it seems we have lost the cornerstone of out little family, we haven't really. We are united because of what we saw down through all the years of his Quadriplegia, good and bad, and because we knew what a wicked and funny person he really was... something outsiders never even considered. Apart from a couple of my sisters and one friend - hey I am fifty four and I have one solid friend... and I consider I am lucky with my little group of people...I know they are all real and solid. Not everybody can claim that.
I am trying not to think of the "this time last years"... but this time last year was the last day I got to sit with my lovely man, for moments in that pigsty of a hospital, in peace, in between all the flurries of activity and excitement which surrounded his vacating that precious bed. The only way they would release him by Air Ambulance to fly home to Port Macquarie was if I drove up ahead - and for some bizarre reason it had to be me, if I would arrive there and notify them I had arrived and all was ready. Then and only then would they release him. So instead of being allowed to be with him on that last long day as I should have been, even then they had no compassion.
So on the last day we sat in the house waiting and waiting... he was supposed to arrive before lunchtime. My youngest sister was with him at least. He had known her since she was 9 in 1972 and they had some healing to do over their last visit... so that was a good thing.
On that last day I was told he may not make it on the trip, that if he died on the plane they would keep going and deliver him...
It was the strangest day...Don and I were together almost 24 hours of the day seven days of the week for decades, and on this last day he arrived surrounded by officialdom and at the house there were people everywhere.
To this day Melissa and Alison and I wish we had had the will to tell them all to piss off, which they should have known to do... and we didn't seem to be able to act. I think that may have been shock really. I recall my face feeling prickly and numb.
Anyhow, Melissa arrived last night which is wonderful. I was dreading doing these few days alone. Alison who lives a very long way away in Melbourne had been quite sick again lately, so she will be with us in spirit. One of my sisters is coming from Brisbane...
Just sometimes it really hits me, and this is the same for those who have loved as we did/do... "How can he be dead?" Simple. I know he is dead but my mind can't imagine a world in which he is not somewhere... that (if I am lucky) I will most likely live the next 20-30 years without him.
Its not like I haven't lost close family... but nothing prepared me for the rawness of how I feel inside . I can only imagine a worse thing would be the death of a child and I don't want to even go there today..
Sorry folks...couldn't sleep just had to vent. I think I will spit at the next person who uses the words "healing process"... "closure"... "letting go"... Soft PC words to cover our modern inability to just grieve, raw and black, hopefully less and less as the years pass, as we humans have done for hundreds of thousands of years...
This photo was taken about 6 months before Royal North Shore Hospital brutalised him.
Don always had these "projects" going. This one was to cover the plum tree with bird netting and safe the plums for us to eat instead. It was a stinking hot day and I am actually pleading to be released from the slavery. Jim (friend) knows this will never be allowed. Anyhow we got a frame around the tree and after hours covered and anchored a bird net around it... and the plums were huge and dark and beautiful...those the fruit fly didn't get to first... when I see shots like this I can recall how "at home" and underneath "happy" I felt most of the time. When someone like him dies its as if the foundations of the world have been suddenly booted out from under you and you are left in an insubstantial place
Sunday, May 11, 2008
Mother's Day... I was out of the house by 6am and down to the markets where I had my stand gathering petitions for the Inquiry into Don's killing at the hands of the good folk at Royal North Shore Hospital...
but when I got back home about 2.... here was a lovely gift from Alison of some wooden Russian dolls... I love them
And some so beautiful flowers from Melissa and a bottle of plonk all tizzied up in gauze and topped with a balloon...mmm
I bought myself some South west Rocks (just up the road) king prawns and a doz oysters and plan on having a beano for tea...
Mothers day by any other name can be as sweet...
Melissa will be home next weekend for Don's first anniversary... and my youngest would be but its so far from Melbourne and she has been quite sick of late... I feel for her more... when you feel as well as I have of late...you know... health is all... (with a pinch of common sense!)
but when I got back home about 2.... here was a lovely gift from Alison of some wooden Russian dolls... I love them
And some so beautiful flowers from Melissa and a bottle of plonk all tizzied up in gauze and topped with a balloon...mmmI bought myself some South west Rocks (just up the road) king prawns and a doz oysters and plan on having a beano for tea...
Mothers day by any other name can be as sweet...
Melissa will be home next weekend for Don's first anniversary... and my youngest would be but its so far from Melbourne and she has been quite sick of late... I feel for her more... when you feel as well as I have of late...you know... health is all... (with a pinch of common sense!)
Thursday, May 08, 2008
John O'Donohue passed away unexpectedly and peacefully in his sleep in the night of January 3-4, 2008.
He was 52 years old.
The Family of the late John O'Donohue wish to thank all those who have so generously offered their condolences on the passing of our beloved John. We are overwhelmed by the expressions of sympathy and support we have received from all over the world and we wish to express our sincere appreciation.
In response to many requests, memorials are being organised in North America and the UK in the near future.
There is a memorial planned for May 3, 2008 in Santa Monica, California and another planned in London, 15th June, 2008. Plans are still developing for services on the east coast of the US. Details will be posted as they become available.
Through his life and works, John touched the lives of an enormous number of people across the globe. The Family hopes that his memory will be carried in the hearts of those who knew and appreciated him during his all too short time with us.
Go raibh maith agaibh go léir agus beannacht.
On the death of the Beloved
Though we need to weep your loss,
You dwell in that safe place in our hearts,
Where no storm or night or pain can reach you.
Your love was like the dawn
Brightening over our lives
Awakening beneath the dark
A further adventure of colour
The sound of your voice
Found for us
A new music
That brightened everything.
Whatever you enfolded in your gaze
Quickened in the joy of its being;
You placed smiles like flowers
On the altar of the heart.
Your mind always sparkled
With wonder at things.
Though your days here were brief,
Your spirit was live, awake, complete.
We look towards each other no longer
From the old distance of our names;
Now you dwell inside the rhythm of breath,
As close to us as we are to ourselves.
Though we cannot see you with outward eyes,
We know our soul’s gaze is upon your face,
Smiling back at us from within everything
To which we bring our best refinement.
Let us not look for you only in memory,
Where we would grow lonely without you.
You would want us to find you in presence,
Beside us when beauty brightens,
When kindness glowsAnd music echoes eternal tones.
When orchids brighten the earth,
Darkest winter has turned to spring;
May this dark grief flower with hope
In every heart that loves you.
May you continue to inspire us:
To enter each day with a generous heart.
To serve the call of courage and love
Until we see your beautiful face again
In that land where there is no more separation,
Where all tears will be wiped from our mind,
And where we will never lose you again.
John O’Donohue
sorry people...this is where I am at as the 17th May draws close... am reliving every moment of this time last year...will improve... but this all helps
here is his bibliography
http://www.jodonohue.com/books/
He was 52 years old.
The Family of the late John O'Donohue wish to thank all those who have so generously offered their condolences on the passing of our beloved John. We are overwhelmed by the expressions of sympathy and support we have received from all over the world and we wish to express our sincere appreciation.
In response to many requests, memorials are being organised in North America and the UK in the near future.
There is a memorial planned for May 3, 2008 in Santa Monica, California and another planned in London, 15th June, 2008. Plans are still developing for services on the east coast of the US. Details will be posted as they become available.
Through his life and works, John touched the lives of an enormous number of people across the globe. The Family hopes that his memory will be carried in the hearts of those who knew and appreciated him during his all too short time with us.
Go raibh maith agaibh go léir agus beannacht.
On the death of the Beloved
Though we need to weep your loss,
You dwell in that safe place in our hearts,
Where no storm or night or pain can reach you.
Your love was like the dawn
Brightening over our lives
Awakening beneath the dark
A further adventure of colour
The sound of your voice
Found for us
A new music
That brightened everything.
Whatever you enfolded in your gaze
Quickened in the joy of its being;
You placed smiles like flowers
On the altar of the heart.
Your mind always sparkled
With wonder at things.
Though your days here were brief,
Your spirit was live, awake, complete.
We look towards each other no longer
From the old distance of our names;
Now you dwell inside the rhythm of breath,
As close to us as we are to ourselves.
Though we cannot see you with outward eyes,
We know our soul’s gaze is upon your face,
Smiling back at us from within everything
To which we bring our best refinement.
Let us not look for you only in memory,
Where we would grow lonely without you.
You would want us to find you in presence,
Beside us when beauty brightens,
When kindness glowsAnd music echoes eternal tones.
When orchids brighten the earth,
Darkest winter has turned to spring;
May this dark grief flower with hope
In every heart that loves you.
May you continue to inspire us:
To enter each day with a generous heart.
To serve the call of courage and love
Until we see your beautiful face again
In that land where there is no more separation,
Where all tears will be wiped from our mind,
And where we will never lose you again.
John O’Donohue
sorry people...this is where I am at as the 17th May draws close... am reliving every moment of this time last year...will improve... but this all helps
here is his bibliography
http://www.jodonohue.com/books/
One of my favourite philosphers died recently aged only 52...
This is John ODonohue's poem
"For Grief.
When you lose someone you love,
Your life becomes strange,
The ground beneath you gets fragile,
Your thoughts make your eyes unsure;
and some dead echo drags your voice down
where words have no confidence.
Your heart has grown heavy with loss;
And though this loss has wounded others too,
no one knows what has been taken from you
When the silence of absence deepens.
Flickers of guilt kindle regret
For all that was left unsaid or undone.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief
It becomes hard to trust yourself
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
John O’Donohue"
Ahhhhh! That is just so lovely and wonderful and sad... but good to read..so sad he died so young.
This is John ODonohue's poem
"For Grief.
When you lose someone you love,
Your life becomes strange,
The ground beneath you gets fragile,
Your thoughts make your eyes unsure;
and some dead echo drags your voice down
where words have no confidence.
Your heart has grown heavy with loss;
And though this loss has wounded others too,
no one knows what has been taken from you
When the silence of absence deepens.
Flickers of guilt kindle regret
For all that was left unsaid or undone.
There are days when you wake up happy;
Again inside the fullness of life,
Until the moment breaks
And you are thrown back
Onto the black tide of loss.
Days when you have your heart back,
You are able to function well
Until in the middle of work or encounter,
Suddenly with no warning,
You are ambushed by grief
It becomes hard to trust yourself
All you can depend on now is that
Sorrow will remain faithful to itself.
More than you, it knows its way
And will find the right time
To pull and pull the rope of grief
Until that coiled hill of tears
Has reduced to its last drop.
Gradually, you will learn acquaintance
With the invisible form of your departed;
And when the work of grief is done,
The wound of loss will heal
And you will have learned
To wean your eyes From that gap in the air
And be able to enter the hearth
In your soul where your loved one
Has awaited your return
All the time.
John O’Donohue"
Ahhhhh! That is just so lovely and wonderful and sad... but good to read..so sad he died so young.
Sunday, May 04, 2008
Re "Anon" letter a few posts back -
As mentioned the PM News took the defamatory letter off the website...but they allowed replies to be posted... so it was a win
here's the link to those replies
http://portmacquarie.yourguide.com.au/displayops.asp?class=your%20say there are twelve of them including mine... I do know most of the writers ; )... and the letters are all from different individuals... so I count this a win...
also they did a story along with photo of my street stand... here's the link to the story...the photo isn't there but it was a shocker so no loss there...
http://portmacquarie.yourguide.com.au/news/local/general/widows-campaign-for-dead-husband-builds/1235849.html
Any other anon medical professional care to write in... please do so
As mentioned the PM News took the defamatory letter off the website...but they allowed replies to be posted... so it was a win
here's the link to those replies
http://portmacquarie.yourguide.com.au/displayops.asp?class=your%20say there are twelve of them including mine... I do know most of the writers ; )... and the letters are all from different individuals... so I count this a win...
also they did a story along with photo of my street stand... here's the link to the story...the photo isn't there but it was a shocker so no loss there...
http://portmacquarie.yourguide.com.au/news/local/general/widows-campaign-for-dead-husband-builds/1235849.html
Any other anon medical professional care to write in... please do so
Saturday, May 03, 2008
Melanie was it for me circa 1970 till now...I listened to this song stoned to the eyeballs in a place long ago and far away before our daughters were even a twinkle in our eyes... ahhh... 'twas a lovely time...it was an innocent time really.... made us the wicked bastards we ended up becomming.... but not so wicked as those who have lost their way and see no longer the dream of better things but of self....
Melanie is all... enjoy!
Melanie is all... enjoy!
Subscribe to:
Posts (Atom)
