Peter's funeral will be held at Macquarie Park Cemetery, Corner Delhi and Plassey Roads
North Ryde NSW on Tuesday 22 September 2009 commencing at 12.30pm.
I know that most of you reading this will not be able to attend, but for those of you who can do so, it would be wonderful to see you there. (This is the cemetery in which his parents are also buried.)
No flowers please, however, he would like to have found a cure for his cancer and often said that he thought within 5 years of his demise, there would be a breakthrough. So please feel free to make a donation to Cancer research.
I intend to hold a Memorial Service in Canberra in a few weeks and will advise of date and location in the blog and via email or SMS for those of you whose mobile numbers I have.
Leanne
Sunday, September 20, 2009
Saturday, September 19, 2009
The Tragedy Ends and Garpet is No More
At sometime before 2.50am today, Saturday 19 September 2009, Peter died in his sleep at the Clare Holland House hospice.
He had a reasonable week, after a brilliant weekend (which I know he really tried hard to make good for me) with a few ups and downs, including needing to have his Peg feeding tube replaced on Thursday which required a trip in the ambulance to the Angiography suite at Calvary John James Hospital. He was stressed about the Peg tube simply falling out but having it replaced is something we have done before and I was able to provide the registrar at the hospice with their phone number and details so we had an emergency appointment and got it done without too much ado within a few hours.
Over the past couple of days I had noticed Peter looked a little more tired around the eyes and also had a bit more congestion than previously but I thought that if we could get his evening sleep to be more settled he would be in a better position to respond to the events during the day. To that end we were trialling Temazapam as a little helper for sleep.
However, we had an excellent game of Scrabble on Wednesday when he thrashed me by 100 points and he also did a personal best at walking on the spot of 250 steps in one session. We also enjoyed watching parts of Series 2 of "Hamish Macbeth" on DVD.
As a measure that Peter was still keen to keep on keeping on he told the ambulance men that he wanted to be resuscitated if something happened while he was en route to the hospital. On the other hand he was fearful of passing away at night and rang me at 2.40am on Friday morning finding it difficult to breathe. I spoke to one of the night nurses and asked her to provide some saline nebuliser and assistance to calm Peter and help him breathe, so Morphine was given but he passed an unsettled night and early morning.
On Friday he was a bit sleepy in the morning but at 11.30am he had 1 and 1/2 hours of lymphoedema drainage massage with the physiotherapist and me; he read his emails and had an hour long conversation with Dr P about trialling going home for a 48 hour period to see how we would go and Peter was concerned about how we would manage but thought we might trial some things in advance of doing that. I reinforced that I didn't want him to use up his strength doing something which he didn't want to do and if he was happy in the hospice then I would continue to do what was necessary and support him there. He said he felt he was getting a bit worse and Dr P said that the XRay taken last week showed that the right lung had, once again, "white out". Meaning that the lung was congested with infectious muck and that with my care he could have a few more months, but that the path was leading inexorably to a terminal end at some stage.
Peter was worried that he would die in the night over this weekend and that I should be with him during the night, which seems very prescient. On the other hand he had expressed this fear many time over the past 5 or so years and Dr P said he didn't look as if he would die imminently and after 10 or so hours at his side during the day I just had to plead that I needed to go home to my own bed so I could be refreshed the next day.
After that, we started another scrabble game before he had a bit more trouble breathing and needed to sit up and over the edge of the bed, so the scrabble was aborted - the last word he made was "fluid" - very relevant given he had started to retain fluid in the abdomen and legs since last Sunday evening.
We watched a few TV programs and I got him settled into bed with the help of the nursing staff by 7.45pm and kissed him goodnight.
At 10.15pm I got a call from the hospice saying Peter had had a bout of incontinence but they had cleaned him and settled him down again. However, he wanted me to know that they had taken off his TED long socks because they were soiled, so that when I came in tomorrow I would know what had happened. I was a bit perplexed about the incontinence and said that I hadn't taken him to the toilet before I left but perhaps having a full 10mg of Temazepam might had relaxed him so much he wasn't as in control of his bowels as before. However, they weren't concerned and I went to sleep. At a few minutes after 3am, I received a call and thought that it would be Peter calling as he had done the night before but it was the nurses to say they had given him midnight medications and then checked and talked with him at 1.30am but when they checked again at 2.50am he had passed away.
I know that the time around 2.30am to 3.30am was always crucial for Peter and he needed support, assistance to clear his chest and airways from phlegm and medication or some other comforting aid. Clearly this proved to be the case again this morning when it proved to be one time he didn't come through.
Dr P, as usual has been superb. He was contacted by the nurses a few minutes ahead of me and when I arrived around 4.00am he was there. He sat with me for a couple of hours and we talked of Peter. He told me that he had checked for any signs of asphyxia or choking and there were no signs. I asked whether it could have been his sleep apnoea just failing to breathe after a break and he said that was most likely; the death certificate, apparently, states lung failure as a result of complications of pneumonia and cancer, but I have yet to see it.
I spent 6 hours with Peter this morning and had 2 good friends come to be with me while I did so. I didn't want to leave Peter without some other friends being with me for my last visit with him. I held his left hand for hours and kept it warm in mine. I took photos of him (which some people will find weird). However, I want to remember his lovely hands and have the photos, not for display, but for my own private need to remember how he was when I last saw him. Too many false memories can be created after times of stress and I need to remember all of him and what he was like at the end. I think it so crucial to face the full effects of things head on and there is then no room for false memories or fantasies about what might have been.
Forty days and forty nights had elapsed since he was meant to have died following his intensive care stay. He also died on the sabbath and on Jewish New Year - a fitting time for Moshe Avraham ben Leev ha Cohen (Peter's Hebrew names), given that as a Cohen, he was of the priestly tribe. As all of you know, Peter was not religious and did not tell people of his birth religion because he said he wanted people to know him as he was and not as their perceptions or views might inform them of how they thought he should be. A wise view given the sometimes continuing prejudices colour modern society.
Peter will be buried at the Macquarie Park cemetery in North Ryde sometime next week.I will post details as and when I know them.
I salute you Peter! You have been the most vexing person in the known universe at times but also the most inspiring, frank and fearless, bright, intellectually uncompromising, challenging, stimulating, strategic and ethical person I have ever met. I was lucky you found me and we shared wonderful travel times together as well as some really close, deeply meaningful and loving moments over the years and during the course of this illness. "Vale" my loved one! You will never be forgotten while I have a breath left in me. I loved you and loved you and loved you and I know that you returned that love and we were precious to each other.
Leanne
He had a reasonable week, after a brilliant weekend (which I know he really tried hard to make good for me) with a few ups and downs, including needing to have his Peg feeding tube replaced on Thursday which required a trip in the ambulance to the Angiography suite at Calvary John James Hospital. He was stressed about the Peg tube simply falling out but having it replaced is something we have done before and I was able to provide the registrar at the hospice with their phone number and details so we had an emergency appointment and got it done without too much ado within a few hours.
Over the past couple of days I had noticed Peter looked a little more tired around the eyes and also had a bit more congestion than previously but I thought that if we could get his evening sleep to be more settled he would be in a better position to respond to the events during the day. To that end we were trialling Temazapam as a little helper for sleep.
However, we had an excellent game of Scrabble on Wednesday when he thrashed me by 100 points and he also did a personal best at walking on the spot of 250 steps in one session. We also enjoyed watching parts of Series 2 of "Hamish Macbeth" on DVD.
As a measure that Peter was still keen to keep on keeping on he told the ambulance men that he wanted to be resuscitated if something happened while he was en route to the hospital. On the other hand he was fearful of passing away at night and rang me at 2.40am on Friday morning finding it difficult to breathe. I spoke to one of the night nurses and asked her to provide some saline nebuliser and assistance to calm Peter and help him breathe, so Morphine was given but he passed an unsettled night and early morning.
On Friday he was a bit sleepy in the morning but at 11.30am he had 1 and 1/2 hours of lymphoedema drainage massage with the physiotherapist and me; he read his emails and had an hour long conversation with Dr P about trialling going home for a 48 hour period to see how we would go and Peter was concerned about how we would manage but thought we might trial some things in advance of doing that. I reinforced that I didn't want him to use up his strength doing something which he didn't want to do and if he was happy in the hospice then I would continue to do what was necessary and support him there. He said he felt he was getting a bit worse and Dr P said that the XRay taken last week showed that the right lung had, once again, "white out". Meaning that the lung was congested with infectious muck and that with my care he could have a few more months, but that the path was leading inexorably to a terminal end at some stage.
Peter was worried that he would die in the night over this weekend and that I should be with him during the night, which seems very prescient. On the other hand he had expressed this fear many time over the past 5 or so years and Dr P said he didn't look as if he would die imminently and after 10 or so hours at his side during the day I just had to plead that I needed to go home to my own bed so I could be refreshed the next day.
After that, we started another scrabble game before he had a bit more trouble breathing and needed to sit up and over the edge of the bed, so the scrabble was aborted - the last word he made was "fluid" - very relevant given he had started to retain fluid in the abdomen and legs since last Sunday evening.
We watched a few TV programs and I got him settled into bed with the help of the nursing staff by 7.45pm and kissed him goodnight.
At 10.15pm I got a call from the hospice saying Peter had had a bout of incontinence but they had cleaned him and settled him down again. However, he wanted me to know that they had taken off his TED long socks because they were soiled, so that when I came in tomorrow I would know what had happened. I was a bit perplexed about the incontinence and said that I hadn't taken him to the toilet before I left but perhaps having a full 10mg of Temazepam might had relaxed him so much he wasn't as in control of his bowels as before. However, they weren't concerned and I went to sleep. At a few minutes after 3am, I received a call and thought that it would be Peter calling as he had done the night before but it was the nurses to say they had given him midnight medications and then checked and talked with him at 1.30am but when they checked again at 2.50am he had passed away.
I know that the time around 2.30am to 3.30am was always crucial for Peter and he needed support, assistance to clear his chest and airways from phlegm and medication or some other comforting aid. Clearly this proved to be the case again this morning when it proved to be one time he didn't come through.
Dr P, as usual has been superb. He was contacted by the nurses a few minutes ahead of me and when I arrived around 4.00am he was there. He sat with me for a couple of hours and we talked of Peter. He told me that he had checked for any signs of asphyxia or choking and there were no signs. I asked whether it could have been his sleep apnoea just failing to breathe after a break and he said that was most likely; the death certificate, apparently, states lung failure as a result of complications of pneumonia and cancer, but I have yet to see it.
I spent 6 hours with Peter this morning and had 2 good friends come to be with me while I did so. I didn't want to leave Peter without some other friends being with me for my last visit with him. I held his left hand for hours and kept it warm in mine. I took photos of him (which some people will find weird). However, I want to remember his lovely hands and have the photos, not for display, but for my own private need to remember how he was when I last saw him. Too many false memories can be created after times of stress and I need to remember all of him and what he was like at the end. I think it so crucial to face the full effects of things head on and there is then no room for false memories or fantasies about what might have been.
Forty days and forty nights had elapsed since he was meant to have died following his intensive care stay. He also died on the sabbath and on Jewish New Year - a fitting time for Moshe Avraham ben Leev ha Cohen (Peter's Hebrew names), given that as a Cohen, he was of the priestly tribe. As all of you know, Peter was not religious and did not tell people of his birth religion because he said he wanted people to know him as he was and not as their perceptions or views might inform them of how they thought he should be. A wise view given the sometimes continuing prejudices colour modern society.
Peter will be buried at the Macquarie Park cemetery in North Ryde sometime next week.I will post details as and when I know them.
I salute you Peter! You have been the most vexing person in the known universe at times but also the most inspiring, frank and fearless, bright, intellectually uncompromising, challenging, stimulating, strategic and ethical person I have ever met. I was lucky you found me and we shared wonderful travel times together as well as some really close, deeply meaningful and loving moments over the years and during the course of this illness. "Vale" my loved one! You will never be forgotten while I have a breath left in me. I loved you and loved you and loved you and I know that you returned that love and we were precious to each other.
Leanne
Sunday, September 13, 2009
A quick update - Is life a Greek tragedy? Yes
Peter had a CT scan on Friday, as he wanted to see if there was any improvement in the cancer that was at the base of his throat following the treatment in June and July. Unfortunately the news was bad. While there was nothing to be said about the throat there are bone metastases in the spine at C7, T1 and T11 of the vertebrae with a high risk of spinal compression. I know that those of you with medical backgrounds will know immediately that this is very bad - as it means that as it progresses, every function below that level of the spine will cease to function. At C7 and T1 that means quadriplegia. At T11 that means paraplegia.
Peter and I are, of course, appalled at this possibility. It is and has been his worst nightmare for many years. It is also ironic as the last 3 days he has been so very much better. Getting dressed in clothing for the first time in 8 weeks, doing more exercises, being brighter and cheekier and engaged. His immediate response to the news as brought in by the Registrar was to get up and do more walking exercises. Once we had seen Dr P and talked over it more with him, Peter's immediate response was to get on with our game of Scrabble because thinking about it or talking about it were just too hard. That night, he dreamt he was well and healthy and when he woke he was unsure why I wasn't in bed with him and so he tried to find me. Which meant, unfortunately, trying to get out of bed and past the bed rails. This was not, as is sometimes characterised, "being out of it". He literally had some moments where he didn't realise he was ill and in the hospice. Of course, he came crashing back to reality when nurses tried to restrain him and dosed him with Morphine. So that when I arrived he was concerned he had done the wrong thing but he was only dreaming (having not had morphine beforehand). The tragedy of life is that dreams try to sort through and repair what is troubling us and in Peter's he was well again. The despair he felt when he realised he was, in fact, in his severely compromised health situation was heartbreaking to witness. I wept as he told me.
On a lighter note, he is still very much able to direct certain things. Yesterday was my birthday (one with a 0 at the end) and as usual I arrived at the hospice for a usual day nursing Peter. Some minutes later a cake and candles arrived that Peter had organised through the volunteers to purchase for me. He also had 2 nurses and a volunteer sing Happy Birthday to me. I cried at his thoughtfulness at such a time when he is so incapacitated!
Later 3 sets of other friends surprised me with a visit, edibles, cards, a fantastic bunch of flowers and some lovely gifts. So Peter was wheeled to the sliding door to the outside world so he could be a witness to our outdoor gathering with the first fabulous spring day we have had. I wish I had a magic wand to cure him, so that we could share things more actively again. His mental acuity is still very intact and when he is feeling reasonable, he is a delight to be with and share things with him.
I still hold out some hopes of bringing him home. Eight weeks in hospital and the hospice is taking its toll on both of us. It is not easy to be at other people's beck and call and unfortunately, there is no peace, privacy or free will in institutions, no matter where you are.
Leanne
Peter and I are, of course, appalled at this possibility. It is and has been his worst nightmare for many years. It is also ironic as the last 3 days he has been so very much better. Getting dressed in clothing for the first time in 8 weeks, doing more exercises, being brighter and cheekier and engaged. His immediate response to the news as brought in by the Registrar was to get up and do more walking exercises. Once we had seen Dr P and talked over it more with him, Peter's immediate response was to get on with our game of Scrabble because thinking about it or talking about it were just too hard. That night, he dreamt he was well and healthy and when he woke he was unsure why I wasn't in bed with him and so he tried to find me. Which meant, unfortunately, trying to get out of bed and past the bed rails. This was not, as is sometimes characterised, "being out of it". He literally had some moments where he didn't realise he was ill and in the hospice. Of course, he came crashing back to reality when nurses tried to restrain him and dosed him with Morphine. So that when I arrived he was concerned he had done the wrong thing but he was only dreaming (having not had morphine beforehand). The tragedy of life is that dreams try to sort through and repair what is troubling us and in Peter's he was well again. The despair he felt when he realised he was, in fact, in his severely compromised health situation was heartbreaking to witness. I wept as he told me.
On a lighter note, he is still very much able to direct certain things. Yesterday was my birthday (one with a 0 at the end) and as usual I arrived at the hospice for a usual day nursing Peter. Some minutes later a cake and candles arrived that Peter had organised through the volunteers to purchase for me. He also had 2 nurses and a volunteer sing Happy Birthday to me. I cried at his thoughtfulness at such a time when he is so incapacitated!
Later 3 sets of other friends surprised me with a visit, edibles, cards, a fantastic bunch of flowers and some lovely gifts. So Peter was wheeled to the sliding door to the outside world so he could be a witness to our outdoor gathering with the first fabulous spring day we have had. I wish I had a magic wand to cure him, so that we could share things more actively again. His mental acuity is still very intact and when he is feeling reasonable, he is a delight to be with and share things with him.
I still hold out some hopes of bringing him home. Eight weeks in hospital and the hospice is taking its toll on both of us. It is not easy to be at other people's beck and call and unfortunately, there is no peace, privacy or free will in institutions, no matter where you are.
Leanne
Sunday, September 06, 2009
This week has seen a few changes for Peter. First he is now on a more "elemental" liquid food to try to help with his tolerance of the food (to stop nausea) and also assist with improving liquid bowel motions (sorry for the detail here...). it has been gong since Friday and there seems to have a slight improvement in the first of these but no change so far with the second.
Also he has had blood in his urine this week and so the Heparin (blood thinner) has been ceased and that has fixed that but the side issue is that he has to exercise more as there is a risk of blood clotting from inactivity. This is not easy as I need to have another person and the nurses are so focused on medication and quick tasks that they are not really easily engaged in helping me with the exercises. So Peter and I have been doing them largely on our own, which is not ideal and this was shown to be so when he nearly fell the other day while using the forearm walker for balance and there was only me to hang onto him.
Peter asked for a blood test this week as he was concerned his electrolytes would be down given his diarrhoea. The results were that they were okay but he is pretty anaemic. So another blood test on Monday to monitor how that's going.
Peter remains anxious when I leave in the evenings and we have been trialling the use of anti-anxiety medication but these have not been successful as they knock him out and leave him with a "hang-over" for several hours afterwards which sees him unable to distinguish dreams from reality. So that remains an issue.
None the less, I am undertaking almost all of the daily care for Peter. I should say I want to do this as then I can check out his condition and keep a monitoring eye on everything as I am the one person, apart from Peter who is consistently around and can advocate on his behalf. This includes showering, exercising, chest physio to assist him to expectorate the phlegm, all other personal care and comfort tasks. I also do most of the drug administration. This saves the nurses time and I am also keen to do it so that Peter gets his full dose of medication. It is also because I seem to be almost the only person who knows how to use his peg tube properly, despite Peter or I providing assistance and advice when we are able to do so.
Apart from these daily issues, we are continuing to enjoy each other's company as well as the DVD's, Scrabble and visitors. We also remain exceptionally grateful for Dr P___ who has continued to keep Peter as his patient despite his role being patients in the other hospitals at the moment. He is great and is very patient and engaged with both Peter and I. Thank goodness he has "kept the faith" with our aims to get Peter home. I am hopeful this might be able to be achieved within the next 4 weeks.
Leanne
Also he has had blood in his urine this week and so the Heparin (blood thinner) has been ceased and that has fixed that but the side issue is that he has to exercise more as there is a risk of blood clotting from inactivity. This is not easy as I need to have another person and the nurses are so focused on medication and quick tasks that they are not really easily engaged in helping me with the exercises. So Peter and I have been doing them largely on our own, which is not ideal and this was shown to be so when he nearly fell the other day while using the forearm walker for balance and there was only me to hang onto him.
Peter asked for a blood test this week as he was concerned his electrolytes would be down given his diarrhoea. The results were that they were okay but he is pretty anaemic. So another blood test on Monday to monitor how that's going.
Peter remains anxious when I leave in the evenings and we have been trialling the use of anti-anxiety medication but these have not been successful as they knock him out and leave him with a "hang-over" for several hours afterwards which sees him unable to distinguish dreams from reality. So that remains an issue.
None the less, I am undertaking almost all of the daily care for Peter. I should say I want to do this as then I can check out his condition and keep a monitoring eye on everything as I am the one person, apart from Peter who is consistently around and can advocate on his behalf. This includes showering, exercising, chest physio to assist him to expectorate the phlegm, all other personal care and comfort tasks. I also do most of the drug administration. This saves the nurses time and I am also keen to do it so that Peter gets his full dose of medication. It is also because I seem to be almost the only person who knows how to use his peg tube properly, despite Peter or I providing assistance and advice when we are able to do so.
Apart from these daily issues, we are continuing to enjoy each other's company as well as the DVD's, Scrabble and visitors. We also remain exceptionally grateful for Dr P___ who has continued to keep Peter as his patient despite his role being patients in the other hospitals at the moment. He is great and is very patient and engaged with both Peter and I. Thank goodness he has "kept the faith" with our aims to get Peter home. I am hopeful this might be able to be achieved within the next 4 weeks.
Leanne
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