The New Cycle

Just imagine your life being regulated by the following hours, five o'clock in the morning, eleven o'clock in the morning, five o'clock in the afternoon, eleven o'clock at night, then the cycle starts all over again.

On each of these occasions Leanne has to provide me with, different forms of medication and of course, water. Since getting into a situation where it is 'nil by mouth' all of my food and all of my liquids come via the 'peg tube'. This of course applies to both food and liquids into the duodenum. Since this is smaller than the stomach, the provision of both food and liquids has to be done slowly and gently and preferably in a state which is neither too cold nor too hot.

I think that we've started to get this cycle into gear, but of course every so often things go awry. One of us is not feeling at our best, or the bodily functions do not permit easy collaborative activity. Take this morning as an example. I have no idea why, but the provision of liquids and food this morning resulted in my feeling nauseous. So I had to be provided with drugs that would counter the nausea. Alas, these do not work all the time.I sometimes wonder what it would be like closer to the end?

I suspect that I will be drugged out of my brain, and lying listlessly in a state of sleeplessness just staring at the ceiling or with my eyes closed.

If you have ever visited the hospice here in the ACT or indeed anywhere else in world, I suspect you'll find people who have drips in their arms, tubes up their noses and God knows where else. It is sad, but it's true that dying is often an unpleasant experience I'm not sure I want to experience that, but I'm not sure I have a choice. To go to sleep, wake up to go to sleep and ------------

Plagues on Peter 2

To those of you have read my plaint, thank you for your comments and thank you for your interest. I am currently using version 10 of Dragon Speaking Naturally Preferred. I forked out for the product. Can you all believe that? It's that good.

What's more, I am once again using Pete's Place as my blog of choice as this new software permits me to type quite serious and lengthy notes without too much effort.

What is interesting in this program, apart from the ability to train it to my voice and my accent is the ability to do so using its own toys. For example at present I am using a dictation box that enables me to place all of my comments quickly into a box that is most effective within the program and is most receptive to various changes in accent and volume. Then, using a simple verbal command 'transfer' it does take the text to the program I want it placed in. Generally this is a computer program that is less receptive or tuned into collaborative mode interaction with Dragon Speaking.

There is in addition a thing called 'Dragon Pad', this appears to be a light word processing program into which you can type more serious efforts and then use the command structure within the program to bold, capitalise, italicise, create dot points etc.

All in all this is more than I would normally need however I have found that this is not enough for this program. What it also seems to be able to do is to utilise some of the cheapest merchandise around for example a shareware post-it note package for the production of extremely efficient basic text and of course the word processing, while it does not do a good job in open office it certainly does a good job in Word Pro from Lotus. I wonder if this is because the Nuance people are in bed with Lotus Notes production as well as MS products?

Please note that I'm taking my general blog writing out of the oesophageal cancer space to Pete's Place again now that there is more to say and more to say it with.

I am also using my Skype and Google talk programs to chat with people, face to face if they have time to chat.

And just for good measure - my best wishes to all over the holiday season. May you all be well and then have a healthy and happy new year.

The Plagues on Peter

I have been inflicted with yet another sign which tells me to shut up. I have been deprived of the use of my right hand and instead been inflicted with pain where there was none.

The loss of a right hand to a typist is monumental and since I have also lost the use of most of my vocal cords as well I need to try out the very best of those programs that convert sound into text to see if my now sibilant offerings will do the trick and enable me to type again. If not, then this is the end of my blogging days as well. I simply cannot afford to lose the use of my other hand to typing when I need it desperately for other purposes like dressing myself.

I would now like to ask all of those who are computer literate to an extent I will never be able to reach, to help me with information.

What is currently the very best of those programs that convert conversation into typed English text. At this point I do not much care whether it is 'tuned' to an American accent or indeed any other accent. With the product from my vocal cords I do not expect to be emulating any given accent any time soon.

Advice would be appreciated so that I can give myself a belated Chrissie present or something. However if you have tried it and it works for you then this is the best recommendation if you have not tried it then please do NOT give me the recommendations of the manufacturer, just tell me it's out there and I will try and find someone who has tried it and found it to work and work well.

I do need help of the kind that the choice magazines will not provide, real personal help from people who know, because they have tried to use a product and who as a result are able to tell me all the truths, good bad and ugly.

Thanks in advance to those who make their views known. Thanks to those who will ring me, send an email or a phone message or a reply to this blog via a comment.

I really need the info folks and fast. My lack of ability to communicate is perhaps even more serious than the cancer. It can kill me, the lack of ability to communicate easily just makes the continuation of existence miserable and THAT I think is probably worse than just dying.

Amazing what I value hey?

I wonder what others value and whether being able to reach out and say G'day and then chat is valued by others as much as it appears to be by me? Whether being able to register your thoughts on a daily basis and just get them out either to no one or to a group of people who find some things of value amidst the dross?

Don't really know, but I do want to find out - especially if you are all not too busy to say the magic "G'day."

Garpet

Good News

It's not often that we get a Christmas wish provided well before the holiday, but Peter D has managed.

This is what I received in the mail this morning:

Hello all,

I am pleased to advise that after a brief consultation with my medical oncologist [Dr Desmond Yip] last Thursday I was given the all clear and told to report back in May 2009. That now entitles me to use the middle name NED [No Evidence of Disease], which I will do with pleasure!!! Next big milestone will be 05 Feb 2009, the one year anniversary of my surgery. Thank you all for you ongoing support.
--
Email from
Peter NED Davis
Canberra, Australia

What a great message to receive on a bright Sunday morning.

Thanks for making today a great day even better Peter by allowing all of us to rejoice in your battle against the beast.

Alas, not all of us have managed such outstanding success. Still, each day above ground is better than one below it, so nothing to complain about.

All the best to those others who are just heading into the maelstrom of this illness. If you are frightened by what is happening to you and most of us have been there, then sharing is one way to alleviate some of your fears. It may also be a way in which the experiences of those who have and are continuing to go before you can help with information and possibly suggestions you might like to consider. I know that both Peter and I are willing to share our experiences if you wish to ask. So don't be shy, just ask.

The Dim and Distant Past

Got a call from a long haired young fellow of around 15 or so (at least that was my memory of this chap) asking if I was the person who had been a youth worker back in the 1970's when he was last in touch with me.

You could have blown me over with a feather.

After a brief, but intensive "let's check each other out to ensure that neither of us gets hit with Internet identity scams" using Skype, I came upon a hair challenged individual with a great moustache, that bore a resemblance to the young man I had known all those years ago. I could figure that out because I still have pictures, now digitally renewed of those earlier times.

When I sent him a few of the photos, one of his comments proved how priceless the wisdom of time can be.

Here was this man, this father, being asked by his children why they could not have long hair, now surrounded by pictures of himself with long hair.

There is possibly no cure in the comments that I received from John, but they sure made me feel good to know that someone I had interacted with in the 1970's felt strongly enough about the difference our interaction had made to his life to chase me over the Internet to say as much nearly thirty years later. Wow!

I hope we can chat some more so I can learn about him and his life. It would be sad after all this time and effort if the contact was only a "one off."

Thanks John. You have made a difference in my life too. Give me more opportunities to listen to your stories, the brief bits I heard were fascinating.

The day after the day before

After a really shocking day, when I was able literally only able to get out of bed for "comfort breaks" I started today in deep fear of what the next day (ie. today) was going to be like.

Apart from an early attack of nausea that was fixed with some medication, it's been fine.

Fortunately, I hope that the change in the medication regime which started last night will continue to have the same sound effects they had from now on.

Suffice it to say that I even managed to get some work done on family genealogy AND believe it or not, even rattle the shrunken brain stem that I think I still have left, after all the medication, with a visit to some sites I used to favour when I worked (and I kid you not) in knowledge management, records management, change management and the like.

People do not seem to have advanced much, because I found the following entry on one site called BRINT which claims to be "the World's No. 1 Resource for Business Technology Management and Knowledge Management:"

Hi,

I am trying to get a view of what innovative ways people are applying tools and techniques in knowledge management.

I know the basics like Document Management Systems, Wikis, Blogs, Discussion Forums, Intranets, but what innovative ways are people collaborating/utilising these tools in knowledge management. Furthermore, what sort of techniques are people applying to both capture and disseminate knowledge (i.e. recorded lectures/discussions, presentations, informal discussion (how to capture these I am not sure) etc. )

If anyone has any ideas, or can provide me with any insight as to how they are implementing KM in their organisation I would be greatly appreciative.

Thanks

As a "Registered Affiliate" I could not resist replying with the following:

Have you thought of using the facilities provided by Google ie. the equivalent of their on line and freely available office suite, their linked application suite called "Pcassa2" - an application that stores pictures on line and more and their Google Talk application which enables you to link to users anywhere on the planet with both audio and visual web cam capability to have key conferences about anything and everything?

Personally I use these applications (and indeed other of the Google products such as their Google Earth, Google Desktop, gmail and of course their search engine) as part of knowledge sharing and knowledge management related to Genealogy.

The tools mentioned above can connect anyone with known members of their family available on line to build on individual data and photo collections and then through on line real time document sharing and discussion actually save hundreds of person hours of searching and recording.

Each person in a different country can add to the mix data which only they can easily find in their own country and then through collaboration build on the knowledge of the whole group as well as benefit new family members as they come on line to "join the party" as it were.

The beauty of this collaborative effort can then be further presented through Google Blogs or Google Web pages or for those still addicted to paper through Adobe Acrobat conversion on the fly.

Last, but by no means least, because the products mentioned enable strict security controls on who can read and who can read and edit documentation, view and edit pictures, work together in audio visual conferencing etc. etc. the combination of the products create a better outcome for users within one setting than can be found in most corporate settings where they are still mucking about trying to create networks that operate throughout their corporate structure much less throughout the whole world.

Alas I am not a shareholder of this company, but whether it survives or not is irrelevant to me as their products are FREE.

Is there anyone out there who can match this combination of tools for knowledge gathering and management at the price anywhere?

I suspect not. But, hey, it's just a suggestion"

I waiting to see what sort of thrashing I get on line.

Then I can ask Leanne for some more pain management medication. This time though, I have to confess I have no idea where she can apply it, nor what level of pain I can ascribe to the outcome.

After all, the thrashing will only be applied on line, so the pain as well as its application, will be virtual.

Then again I may have wrecked this 'on line' wonder for those of us who use it. As firms start to find their financial backs to the wall and no longer have the megabucks to purchase corporate licences for other products maybe they will have to resort to my suggestion as the way to go.

It would be interesting to see if there was a corporate take up of the ideas in my suggestion.

I hope not, I really like to see people wasting their time and our money, don't you?

After all, if they work in government, they will get their money back in taxes and if they are in private enterprise they get it back through fees and charges.

Genealogy a treatment for those who are dying

I have spent the last four days totally immersed in genealogy related work.

I have been given some information about Camden Pioneers and from this information together with my data base and a look at BDM NSW (Births Deaths and Marriages) on line, I have been able to find distant family members with the surname of Adams, Roots, Emery, Buttenshaw and all of their links to the S family and of course to each other. I have confirmed stuff I know, changed stuff where the source from BDM tells me I must and adding rounding out things that are interesting.

In other words I have been working hard, but having fun and realising that while we live one life only, by sharing stuff about ourselves we are contributing to the prolongation of memories that others have about us and also ensuring that those who have never known us can get an idea about who we were and how we lived and enjoyed our lives - or not

What's Happening?

Hi everyone, it's been a while.

I have not been writing because in all truth the material I want to share is not really suitable for this blog. I want talk about politics, about the financial crisis, change in the world and not the same old same old about me. So from today I will be going BACK to my normal and main blog at Pete's Place

Updates about my illness etc wqill still remain right here but items that I wish to comment on will be placed on the other site.

How is my illness? To be perfectly honest I have no idea.

My oncologist was surprised (hopefully delighted) that I was still around and my doctor from the Hospice was delighted that his suggestions thus far have kept me from oblivion.

I have a lot of oedema in my limbs and pain in my right arm. In discussions about this I have some reading to do about bier blocks and about having a neural block in the arm. Essentially what seems to be proposed is that by killing off the nerves in the arm and the hand the pain will go bye bye as well. Alas what this is also likely to mean is that the arm does not function at all either.

Before I have a completely dead right hand and arm I think I would like to think about the pain and my ability to tolerate it versus having no pain with a dead arm just hanging by my side.

I think I will get back to people about this when I have done all the relevant reading. Off the top of my head I am not sure I can handle a deead hand as the price for lessening of the pain.

Apart from that we have beeb busy with other matters that I wiil now discuss on Pete's Pages.

Birthdays, Friends and genealogy - what more can you want? Freedom from pain and frustration for one thing

We had a lovely time celebrating a birthday for one of the members of this group of people from l-r Nancy, Steve and Roberta. Leanne and I were both there of course , with me being somewhat worse for wear. The sunshine was very pleasant and by the time the clouds rolled in and the wind turned less than nice the afternoon was over and with it went the joys of the day

The food prepared by our gourmet chef consisted of slow cooked Moroccan veal with cous cous and vegetables, to be followed up with a spectacular desert of home made Tiramisu.

This was so nice in fact, that I actually tried to eat some of the desert and to my surprise I actually succeeded in getting a small portion down my throat. It's nice to know that Marmaduke has competition, albeit in a very small and insignificant way.

Pain is still the major event in my day and at present it requires what is known as breakthrough medication every four to six hours. It appears that the oedema in the right hand and the legs is not getting any better and the pain that accompanies this is excruciating.

I am also troubled by sleep during the night having fears about all sorts of things and being kept awake by all of these. I keep hoping that things will get better, but I suspect that this is not going to be the case.

So now, it's off to my makeshift day lounge where I can elevate those legs and try and reduce the swelling. I then look forward to being reconnected to Marmaduke and with a little luck, get some sleep after all this while the Saturday night movies drone on around me.

Yesterday I was fortunate to have a visit from a former work colleague called Salim who is also doing family research and unfortunately experiencing far more problems than I am. So if anyone knows how to get information from Turkish authorities about the populations of the countries that were part of their empire prior to the first world war, please let me know so that I can pass this on to him. Frankly I am out of my depth for both the periods and the locations of the research. Apart from the Mormons who may have been allowed into the areas that were ruled by the Turks prior to the first world war and who of course may have an office here in town.

PAIN, GENEALOGY and Cirque du Soleil

It's been a while since I last wrote. Yep, you guessed it, pain.

A couple of weeks ago I had some massage done and it was lovely. Then I had it again and once again it was lovely, then I had another session which I recall as lovely as well. At some point after this though, my right arm started aching more than normal.

We have had this looked at and we think its the pain killing drug I am taking. One of the possible side effects seems to be to cause swelling - oedema I think it's called - in limbs. Since my legs and ONE arm have swollen - its a smallish leap to make this connection. So what to do? In the interim SUFFER - that was written under pain duress - there are other drugs taken for breakthrough pain which I can take four to six hourly. I could of course stop the other drug but that would let through even more pain (go figger)

There may be a hope in the drug's earlier version which does not have the side effect.(No doubt it has others) and do I am not stupid enough to mention its name in the open.

We will see.

Meanwhile genealogy occupies my brain when it's awake and relatively pain free for both my family and Leanne's side.

On my side things are a bit slow, but on Leanne's side may I say in the words of Fats Waller, "The joint is jumpin!"

I joined Genes Reunited the other day - a pommy run site, paid my money, and even this non colonial boy is getting a lesson in organisation. I have had hot flashes from people I have never heard of who may turn out to relatives on Leanne's side. Some have been kind enough to send links to their ancestry site and I have had a wonderful time just starting to look at them and see who we have in my data base and who we need to add. It's simply fabulous!

Speaking of fabulous we went to see Cirque du Soleil - THIS is sheer magic.

It's not often that I advertise places but you simply have to check this out. Try Cirque du Soleil

We sat four rows from the front really in the thick of the action and it was fast and furious. At times I thought we would be part of the show like some poor unfortunate (probably a member of the cast) who was behind us at the start and then suddenly at the bidding of one of the clowns (if I dare call them that they were so much more) he was starting to clamber down over the seats to the end of our row (and we were in seats 9, 10 and 11) from whence action began with the clowns chasing him to do things like read the program etc with more jokes happening along the way.

There were people who did things with a trampoline we never learned at school including climbing walls that from my position must have been at least 20 - 30 feet high.

Then there were the acrobats, the fliers, the tumblers, the jugglers etc. but, what flying, what tumbling and what juggling. Amazing stuff.

Don't just read about it, get up off your well polished behinds and go and see them, they are simply magic and not in Canberra all that long.

(Yeah, go on you sceptics do check the site and just TRY and find any ways in which I am making money from this. Just once I am doing it for the lurve!

Immersed in genealogy

We are delighted to have with us Nancy, Leanne's mother and genealogist extraordinary.

So far, the visit has been wonderful. We are all enjoying it and getting better acquainted by the day. Nancy has brought with her books and books on the extended family and loads of pictures and photographs of relevance to the establishment of sufficient information to write a "book" about her immediate family so that this information can be added to the work already done on other parts of the larger extended family.

I don't know what the rest of you out there would do with such a treasure. I for one am going to use her skills and knowledge while I have the chance. In the process I sincerely hope that both Leanne and I will learn heaps about the family.

For those of you who have not tried it, DO try Picassa Web albums as a place to store pictures and Genes Reunited as a place to store and to find ancestors from the UK in particular.

Never tried them before so this will be an experience.

Genealogy - what of it?

One of my posts recently received a comment from Kathy, (see "Massage, Fishing, Genealogy and ????") someone who was a relative, for a while.

Let me explain.

Kathy finally pulled the plug on the notion that we were family, long after Leanne and I had visited England, to meet her and her family and reunite a family broken by the tyranny of distance.

England? Yes you all know the place. It's that island off the coast of France, normally our real destination, and one we usually visit, because it is filled with eye popping antiques as well as charming people, a lovely new language and good food to boot. Leanne of course would add fabulous castles, sights, markets, paintings, churches, the Tour de France, museums, etc

Alas, while this country has all these benefits, Leanne's family's name does have other connotations in France and in French that are less desirable and no, I am not going into that

Further research had apparently revealed that we were not related, Kathy wrote, after a period of time when we had returned to Australia.

Australia, a country to which alas, her ancestors had not been able to gain the 1 pound one way trip that other, more privileged migrants like those in Leanne's family had been able to acquire, a trip that cost 10 pounds for my family, probably because of inflation or because of government policies which saw Alexander Downer's father as the Minister of Immigration. (No I am not going to explore the "like father like son" nature of this portfolio.)

Furthermore she did not have ancestors who had earned a FREE trip to Australia, courtesy of the government, a 'reward' if you like, for the work they had done in the home country, not unlike some other of Leanne's ancestors.

It turned out though, that the trip to England was not wasted. All of the now, suddenly non family members, were a joy to meet and get to know. Whether they were family or not did not matter at all.

Furthermore, Kathy is a serious researcher in genealogical matters, unlike myself, who merely has pretensions in this regard, she was and remains a fabulous person to get to know. You will note her offer to assist in the genealogical research when Leanne's mother comes to stay with us for a while. Alas, you will not be able to see the blog where all of this work will be published as it is reserved and secured for family members and of course for friends who have a need to know.

But I digress, while doing some genealogical research myself today, I needed an idle moment, a happy moment, not a frustrated moment and so just for the heck of it and because you always start searching alphabetically, I asked Google to find me connections with the word Auspitz, this being the name of one of the families that make up my genealogical background.

Wikipedia led to at least at least one connections that was of the right era, the right overall location, but at first sight less than useful. Allow me to list it below:

"Auspitz's sign is the appearance of punctate bleeding spots when psoriasis scales are scraped off, named after Heinrich Auspitz. (http://en.wikipedia.org/wiki/Auspitz%27s_sign)

Heinrich Auspitz (1835 in Nikolsburg, Moravia – 1886 in Vienna) was an Austrian dermatologist. Trained at the University of Vienna, he specialised in dermatology and syphilis. He was part of the famous Vienna School of Dermatology, and studied and worked with other eminent dermatologists of the time, Ernst Wilhelm Ritter von Brücke (1819-1892), Carl Freiherr von Rokitansky (1804-1878), Josef Skoda (1805-1881), Johann Ritter von Oppolzer (1808-1871), and Ferdinand Ritter von Hebra (1816-1880). From 1863 to 1886 he worked as a professor of dermatology at the University of Vienna. He was also the director of the general policlinic from 1872 and became the chief of a clinical station upon the death of Hermann Edler von Zeissl (1817-1884).

A pioneer in tissue pathology, he described the pinpoint bleeding on removal of a psoriasis scale that bears his name: Auspitz's sign.
http://en.wikipedia.org/wiki/Heinrich_Auspitz

It is unlikely that this Auspitz was a family member though as we will see the time and place where he was born, has connotations for families with a Jewish background.

Then came the "Auspitz Family Tree" published on line. I was amazed to find this, then quickly disappointed. It was close. Once again it had the right names, the right location and even the right religion with a history of some members incarcerated in German concentration camps and so on.

Alas, still no connection to the Auspitz twig (I am now thinking of it as a mere sapling or a tiny branch of a much larger tree,) to which I and many others that have been located, do belong.

On one site there was a connection simply trawling for people who would pay big bucks to consult their 'superior' databases. As a teaser they listed some free data bases. Of these, some would not connect, others had a simple message, "no results", but then came a link to the US Social Security death index data base and this had names that were either the same or similar to those in my data base, but completely unrelated as they were in the USA and mine were not (for the same period).

Since I had neither the time nor the inclination to pay the big bucks, I kept on trawling myself and found the Lieben - Auspitz Palace in the heart of Vienna. I simply could not resist a look.

The Palais Lieben-Auspitz at the Ringstraße in Vienna, next to the Burgtheater. Former residential seat (Ringstraßenpalais) of the Jewish aristocratic Lieben and Auspitz families. The Nazis "aryanised" the building in 1938 and forced the owners to flee, many of whom died in exile or the concentration camps. The palace used to house a famous literary salon, a plaque next to the Café Landtmann points to it. http://commons.wikimedia.org/wiki/Image:Palais_Lieben-Auspitz_Vienna_June_2006_391.jpg

This was more like it, I thought, these people were the sort of relatives one would want to have. Not knowing any among them however I will have to ask the other relatives.

Sadly, but with a little more hope I scrolled on.

There appears to be a place called Auspitz in the Czech Republic at: Longitude: 16° 44' 0" East
Latitude: 48° 56' 0" North. There was mention of Jewish families in the area, but when there were references to an aristocratic family called Auspitz von Artenegg I simply knew I had probably wandered into the wrong space.

The history of the Jews in Hungary (and what is now the Czech republic) is mixed. Some people loved them, some needed them for commercial purposes and then eliminated them when things were better. Read all about it at the following link: http://www3.sympatico.ca/thidas/Hungarian-history/outline.html

So perhaps my family have a connection with a bunch of tobacco traders who started out from Nikolsburg and ended up in Pest and of course there is a mention of a Simon Auspitz who was a leading member of the Jewish community in Moravia, perhaps not.

But once again I digress, though I could go on , this period is really interesting.

The point I am trying to make is that the search for ancestors, for family can be, an exciting and absorbing hobby not to mention an exciting though often frustrating history lesson. When it really comes right down to it, I am just as interested in Leanne's family history as I am in mine.

My family history teaches me about one large chunk of European history and the start of the new lands of America and to a lesser extent Australia, while Leanne's teaches me about England at its hey day and all those places this little country managed to conquer.

All in all I learn a little more about the world through the multiple lenses of those who came before us.

When the search throws up really nice and helpful people like Kathy and her family, the experience is just fantastic.

However be prepared for rejection too.

The experience also enables me to think about how the wheel turns and about how likely (or not) it is that I may yet see the changing of the guard when what were then the new worlds of Australia and America experience what it was like for the Chinese and the Indians and others around the world who had their empires in former days, and who may now have another "go".

Iran is making noises once again, Russia is pulling together a cartel like OPEC, but with gas supplies, the Chinese have just finished their blockbuster advertising session with the Olympics and through this exercise shown the world what they are capable of. The Indians, once with an empire of their own may not be ready just yet but their turn may yet come again to be the "leader of the pack." After all, they are winning at cricket at last!

I just hope I am around to see the fall out of the current economic gloom and doom, protected in my cocoon by "Kevin 07" in 09 and on.

Recently resurrected from my archives

Some People may forget but . . . . .

Some people may forget certain photos and remarks, but then again others may not.

I only forget where I got it from. The wording on the photo is not helpful, a Google search did not give me a source, but I assume it was taken in 2000 or thereabouts and in recent times as the race for the presidency takes on a more serious bent it becomes ever more interesting and dare I say appropriate.

Massage, Fishing, Genealogy and ????

It's not often that I use these pages for an apology to one and all, but I will on this occasion.

I have been off the air now for a few days because parts of my body did not respond well to a massage I received recently. Suffice it to say that I was in agonising pain and thinking that this was neurological pain I just suffered. Stupid me.

Leanne, bless her was smart enough to seek advice. What this has achieved is the intake of some of the pain medication we have available and while not removing this pain in its entirety, it has reduced it to a dull roar, so that I could type this blog entry for example.

All I can say is fantastic and thanks to Joan at the hospice, whose advice has led to this outcome.

As my mind turns to fishing or similar outdoor activities (unlikely, but a nice pipe dream) it can also turn to other activities like genealogy not only for my immediate family on my parent's side, but also for the family of my nearest and dearest.

In other words I will be available again for consultations, visits etc sooner than expected, but will be less available when we receive an important visit from Leanne's mum who is without any doubt the most knowledgeable person in the study of the Sales and Adams genealogy.

I suspect that part of her proposed visit is to gather all the material available and put them together to produce a book. If this turns out to be the case I will be busier than a blue tailed fly!

With summer coming, THAT is busy!

Looking forward to hearing from you all just so I can stay in touch with the real world instead of the world of the past. Though I have to say that with all the sheer terror I feel coming from people frightened for their future because of the financial crisis many of you may be too busy to write or to call - try garpet on Skype instead [grin]

Kathleen and David.

David and Kathleen paid us a visit today. What welcome visitors they are. I have worked with Kathleen in the past and I hope that those times are remembered as fondly by her as they have been by me.

David, Peter, Kathleen

I honestly cannot recall all of the topics we managed to discuss, but very low among these were the elections in the ACT. Perhaps this was due to the fact that David and Kathleen live interstate from us and so the subject gripping the heart and mind of those living in the ACT did not seem to be as important in their minds as they did, briefly, in ours.

I know that Leanne and I went to the polls at around 10 am and noted that the new rules were in force, preventing anyone from handing out information about the candidates within 100 metres of the polling booths. I wonder if this caused any difficulties for some undecided voters.

Back to our guests. David and Kathleen are really two of the nicest people I know and there are occasions when I wonder how having children has affected them. You see we have not as yet met these children so I call them, 'Phantom Offspring.' I have said to Kathleen and David that I do not believe of their existence. I simply find it difficult to believe that anyone could stay as sane as they both have in the midst of a large growing family. Until I see them, and not just on photos, I choose to remain sceptical.

I think we had a lovely visit and I know that the sunny and mild weather outdoors was really a great backdrop to their visit.

Pleasant Afternoon

Leanne and I had a very pleasant afternoon entertaining Penny Sullivan, a friend she met on the work scene some time ago.

Leanne and Penny

Penny is living in the ACT now and like Leanne is interested in beading. So far, Leanne has found, or at least gathered around herself a number of people who enjoy this craft or "obsession" as Leanne commented when I asked her what to call beading in this note to you all.

I fully expect the house to be turned into a beading haven on certain days of the week when Marmaduke and I will be surrounded by women making beautiful things. Now if only Leanne would enable this to happen when Marmaduke and I are not connected

I have been engrossed with matters to do with the family Genealogy and have been handed a gold mine by one of my fellow genealogists who lives in Hungary.

He has been fortunate enough to literally bump into relatives visiting Hungary whom he recognised from the pictures that were sent to him by the grandparents. Simply amazing!

Jozsef, who features today on another blog of mine reserved for family members only, has struck a very large bit of information in one sitting so to speak. The collection of names he has sent me will keep me busy for days and it was a great pleasure chatting with him on Skype. Joska and his wife seem to be very nice people, it's sad that they are so far away.

From the BBC - an interesting story

From the BBC News on 16 Oct 2008 I managed to glean the following tit bit.

Please read this extract, then re-read it and put it into the context of the US Presidential elections in a few weeks time, the current melt down of financial institutions and perhaps even our little Territory wide elections here in Canberra tomorrow:

A US judge has thrown out a case against God, ruling that because the defendant has no address, legal papers cannot be served.

The suit was launched by Nebraska state senator Ernie Chambers, who said he might appeal against the ruling.

He sought a permanent injunction to prevent the "death, destruction and terrorisation" caused by God.

'God knows everything'

Mr Chambers sued God last year. He said God had threatened him and the people of Nebraska and had inflicted "widespread death, destruction and terrorisation of millions upon millions of the Earth's inhabitants".

What can you say to this?

In my case I say:

1. Thank God we have representatives who have not quite lost their senses
2. Thank God my father chose to come to this country rather than the USA when we were refugees.
3. Thank God we managed to land jobs in the ACT where we now have a chance to elect some sensible representatives tomorrow.
   

A sequence of "Irish jokes" provided for my amusement by my visitor on 13th October - this is the first of three

Two Irishmen walk into a pet shop in Dingle, they walk over to the bird section and Gerry says to Paddy, 'Dat's dem.'
The owner comes over and asks if he can help them.

'Yeah, we'll take four of dem dere little budgies in dat cage up dere,' says Gerry.

The owner puts the budgies in a cardboard box. Paddy and Gerry pay for the birds, leave the shop and get into Gerry's truck to drive to the top of the ConnorPass.

At the Connor Pass , Gerry looks down at the 1000 foot drop and says, 'Dis looks like a grand place.'

He takes two birds out of the box, puts one on each shoulder and jumps off the cliff. Paddy watches as the budgies
fly off and Gerry falls all the way to the bottom, killing himself stone dead.

Looking down at the remains of his best pal, Paddy shakes his head and says,

'Fook dat. Dis budgie jumping is too fook'n dangerous for me!'

THERE'S MORE...

The second in this sequence of Irish jokes sent to me by my visitor of October 13th

Moment's later; Seamus arrives up at ConnorPass.
He's been to the pet shop too and walks up to the edge of the cliff carrying another cardboard box in one hand and a shotgun in the other.

'Hi, Paddy, watch dis,' Seamus says.

He takes a parrot from the box and lets him fly free. He then throws himself over the edge of the cliff with the gun.

Paddy watches as half way down, Seamus takes the gun and shoots the parrot.

Seamus continues to plummet down and down until he hits the bottom and breaks every bone in his body.

Paddy shakes his head and says,

'And I'm never trying dat parrot shooting either!'

IT IS NOT OVER YET...

The third and final in this sequence of Irish jokes from my October 13th visitor

Paddy is just getting over the shock of losing two friends when Sean appears. He's also been to the pet shop and is carrying a cardboard box out of which he pulls a chicken.

Sean then takes the chicken by its legs and hurls himself off the cliff and disappears down and down until he hits
a rock and breaks his spine.

Once more Paddy shakes his head.

'Fook dat, lads. First dere was Gerry with his budgie jumping, den Seamus parrot shooting...and now Sean and his fook'n hengliding!'

What can you say after all that [sigh]

Snusher Meets Garpet or the other way around

Wow What a Build up!

Set out below is the article published by Peter Davis (aka snusher - something we will discuss a little later on) on his blog "Cancer at the Junction" on Monday, October 13, 2008 under the heading:

Snusher meets Garpet. Hungarian blogging guru rolls out red carpet in Gordon.

"Well at last we have got to meet the man and his wonderful partner Leanne!

Today
Lynne & I headed down the motorway 30 minutes south from Evatt, Belconnen to the far lower reaches of Canberra, Tuggeranong [disparagingly referred to as North Cooma] for a meet with Peter Garas [Garpet] and his partner Leanne at their home in the suburb of Gordon.

Peter describes his occupation in his own blogger profile as a 'blog writer', and his output is indeed prolific. It was the continuing blog http://garpet1.blogspot.com of his own experience with gastro oesophageal cancer, right here in Canberra, that gave me information and encouragement from the first days of my diagnosis in October 2007. He has had the same surgeon & oncologist as me. To meet him and Leanne was a real treat. The man himself was unchained from his feeding pole [nicknamed Marmaduke] and was free to greet us at the door. He & Leanne rolled out the red carpet for us and over several hours we engaged in free flowing
conversation across a whole range of topics. Talk of cancer & its treatment was only a small [but important] part of proceedings. We could not resist the chance to compare scars, made by the same surgeon!

The one on his stomach has healed so well that you can hardly see it!

Garpet now receives all his nutrition via a feeding tube [his oesphagus is constricted so he cannot swallow], and he patiently watched on while Lynne & I enjoyed the salmon, rye bread, capers, gherkins, dolmades, cheese & grapes that Leanne so generously provided. We in turn got to see Peter take on board a ration of fluids skillfully administered through a syringe by Leanne via his feeding tube.

Peter's voice was quiet but firm, and I could feel a real sense of engagement with this intellectual, articulate, urbane and widely travelled man. I had taken over a grab bag of books & CDs that reflected some of my interests...the usual culprits that you all know, sundials, French sundials, Captain Cook, cacti, astronomy, tarot, old maps, baroque music & family history. Lynne & Leanne also found much to discuss and several hours went by in a flash. Peter & Leanne are
gregarious and popular people; while we were there a long time friend from Sydney called in for a quick visit.

The whole episode was a delight, and well, I cannot wait until the next time...perhaps next month? This is one of the up sides of cancer..the lovely people you get to meet by force of circumstance!!

Just for the record today I had my routine 6 weekly port flush at the Belconnen Health Centre.

Thats all for now folks.

Peter Snusher Davis
Canberra, Australia
snusher@gmail.com"

Peter, I have to say that your article was so complimentary that I could do no better than to publish it to my readers as well. Thank you.

It was inspirational to be able to meet you and your delightful wife. It was a rare treat to learn that were it not for an accident of time, I might very well have met her in another capacity at the local hospice.

I have to say that I was awed by the subject matter you carried around in your Green bag. I learned so much on the day about so many things that had previously not entered my range of interests. For example, I was familiar with the Tarot being used in the telling of futures, but not with it's use as a complex card game, that you assured me, was similar to bridge. As a former bridge player of little repute (a fact that can be attested by many of those who have come to know me well since I literally stepped off the boat in 1957) I can tell you that I was completely unaware of this fact.

As for some of your other interests, like sundials, or more narrowly, French sundials, ils sont formidable, mon ami.

To learn that you speak fluent French (and probably other languages) puts you in a class that it is, if not unique, well up there with the most talented people with whom I can claim some connection.

What you may not have seen was that Leanne also very skilfully administered the medication that I had to have at that time of the day. I would literally be nothing without her these days.

Yes indeed all in all an exceptionally enjoyable visit and one that I too hope can repeated, whether in our "north Cooma" residence, perhaps yours or if the time is well chosen, (i.e. between 7 am and 6 pm) a 'neutral' scenic spot of great ambiance.

I promised my readers a brief digression about 'snusher" Apparently this is Peter's ancestral name. That is to say that people in his family once were called snusher and in his genealogical searches, Peter is searching for any connections to this name.

So dear readers, if you wish to be helpful, then please let Peter know as and when you DO come across this name. His email address is listed above.

Monday meeting with the author of Cancer at the Junction - "Snusher" aka Peter Davis

This is a photo of me taken by Leanne outside 'The Boathouse' in Canberra. Behind me is the lake and some residential units around Kingston (I think). In case you can't read the caption on the T shirt it says: "I'm not INSENSITIVE I just don't give a crap'

This certainly was and indeed is the way I have been feeling all day!

My state of my emotional health has been created by both the neurological pain in my right arm and hand as well as the headlines in the Canberra Times that make reference to "Black Friday"

All this is by way of a 'lead in' to the real story of the day, namely that I will finally get to meet "SNUSHER" aka Peter Davis, a fellow oesophageal cancer victim in Canberra who recently wrote in his blog about me and my blog and who has apparently been finding some of my scribbles (probably the earlier ones) useful in his journey with this horrible illness.

The date for our meeting is Monday next and I look forward to hearing about his journey as I have only been able to see snippets on his blog Cancer at the Junction http://www.ecsnusher.blogspot.com

I look forward to this meeting, but I sincerely hope that Peter's journey will not take the by-way that mine has taken.

It's highly likely that one or both of us will report on the meeting, so you can spend your days searching for the differences.

On the other hand, you could just go fishing or do something else that's useful right?

Hot News

This is a brief and one off announcement. Following a recent visit to the office of the dietitian I have been advised that my rate of weight gain is too high. Accordingly I am now able to advise my readers that Marmaduke and I will no longer be tethered to one another between the hours of around 7 am and 6 pm.

In short folks, while it is my intention to be with Marmaduke at my side during evenings and nights, my days will once again be free for other things.

As the weather improves and the days increase in temperature it seems that I will be free and hopefully fit enough for daytime assignations.

Seriously for a moment, it means that provided that I am well enough, I should be able do things during the day that were impossible when I had a deadline that required me to be connected to my feeding tube from 2 pm.

I can go on excursions, try fishing in the lake again, find people with similar time frame openings to play cards (just like those old fellers do on the picture post cards from Greece or southern Italy etc.) In other words to be a man of leisure.

I will not be the sort of person who oozes anxiety as I watch what is happening in our and the world's economies, nor will I display anxiety as I read the news and wonder which hell the world is heading for.

No, no my friends all those worries are already behind me.

I look forward to the good times, as well as spending time on the family history, hoping that family in Boston, re-discovered through advice about a 90 th anniversary birthday in that town, will identify at least one family member who has enough time to "download" this matriarch and send me the data that is gathered. In that way I can advance one of my pet projects, putting together as much of the family history as I can so as to provide a legacy for those who remain behind after my demise.

If friends from my past life want to use a lunch time to catch up then a phone call will do the trick to arrange a place and time. The hard part might be to arrange for Leanne to drive me there.

Still, one can but try.

Let's hear from you if you are interested in exploring these new boundaries.

PS I need someone to fish with, that someone being generous enough to help me tie my lures to the line as my right hand is incapacitated.

Saturday and Sunday revisited

This picture is of Roberta and Stephen two of Leanne's friends who came to visit us. I certainly hope to get to know them better in the near future, they are both delightful people. Alas, when they arrived on this occasion I was both exhausted by an earlier visit to another delightful couple and by something that was happening in my stomach. I know it's the last place from which to expect trouble because I have not been using it for months. Still mysterious things can happen when I am not hooked up to Marmaduke.

Saturday and Sunday were visiting days. Leanne and I were either being visited by people or in the car visiting others. It is really a wonderful feeling to be able to use the few hours when I am unhooked from the feeding tube and actually able to travel.

We were of course embarrassed to realise that we had totally missed the news about it being daylight saving and so we found we had 'lost' an hour and were arriving late on one of our visits. Egg foo yung on face is NOT the most comfortable thing to wear. Thankfully our hosts were very gracious.

Leanne's home made jams appear to be a hit, as has been her first attempt to make a cake from the Vizvari Mariska Hungarian cook book. It was apparently either a great success or people were being unusually kind. The number of pieces scoffed would suggest that the first explanation is the correct one. There is a delightful story about the acquisition of this out of print cook book. However I will not bother to write about it here - you can ask me when we next see each other.

All this lovely tucker being devoured with me looking longingly at certain items but being unable to participate. Sigh!

Actually we will have to talk to the dietitian because I am putting on weight. This was desirable, but now is becoming a pain. If she agrees that I can take less of the Ensure Plus it will mean more time free of Marmaduke - all in all not a bad outcome.

But I digress. It's thanks to all those who came to see us or who were generous enough to have us in their homes.

I have not provided photos of others either because they stated that they did not wish to appear on the blog or because I was idiotic enough to have either left the camera at home or getting so involved in the conversation that I forgot to take photos.

If there are any suggestions from my readers about successfully handling neuropathic pain I would love to hear about their experiences, my right hand and arm is in need of some new ideas.

So that's all for this entry. I sincerely hope that I can write about other world related issues in my other blogs. I am particularly interested in starting a conversation or thread about the economy and what's likely to happen to us all as a result of what is happening elsewhere. Is anyone else interested? If so let me know.

Friday

Today has been one of the more interesting days since my release from the hospice. It has been filled with fun, sun and excitement.

'Wow, I wish I had days like that,' I hear you all mumbling under your breath while I punch out the details on this page.

The day began as usual with me waking at the crack of dawn and then lying quietly under the covers waiting for Marmaduke (yes you remember Marmaduke, he is the feeding pole and pump) to complete his cycle and beep to announce that finally he had emptied the contents from the one litre flask of nutrients into my body. This was around 7 am.

Leanne, awakened by the sound, was like an athlete in training. She sprang out from under the covers, muttering something about 'coming', then rushing to my side of the bed with a single mission in life, to remove the plug to Marmaduke and then arrange to flush the peg tube with water.

A few more days like today and she will be well enough conditioned to undertake the tasks and then turn around and slip right back under the covers again and continue sleeping until her exhaustion is at least partly assuaged and she rises at another time when she is truly well rested.

Not yet though, not today. Today she stayed awake, though I suspect that every bone in her body was silently screaming at her to get back into bed and to stop playing the heroine carer role thrust upon her by circumstances and recognise that every body has limitations and that she had reached hers.

No, not today. Today meant helping me to shower, dress, receive the morning round of medication and then to take advantage of the streaming sunshine and almost summer temperatures outside in the backyard where the large outdoors umbrella had to be erected, the plastic chairs covered and a large pillow placed on the table so that I could place my big clod hopper like feet on it, well above the heart, thereby hoping to reduce the oedema, a relatively new development, that seems to have overtaken me recently.

If all this was not enough there was of course the need to get herself washed and dressed and ready for the day. This was followed by the preparation of breakfast for one washing up and then more tidying up, with winter gear being packed away and more of the summer gear being made accessible.

Are you tired yet? I am and I was just watching and getting myself underfoot when my 'role' was clear, get the hell out of the way.

Emotions are still raw. When there is something that can remind Leanne about her father and recent events they are overwhelming and require time out and an escape from the daily grind.

No such luck today.

Today we went into the hospital to try and get a lighter version of Marmaduke, something we managed to partially accomplish. Then with the long weekend being almost upon us we needed to take in supplies and so first a trip to purchase ink cartridges for our printers and then a trip to the local ALDI was indicated and we picked up supplies for one and potential visitors. (So some of you had better come and meet planning expectations by being available to eat the goodies obtained)

I forgot to mention that we had our regular weekly visit from the nursing staff of the Palliative Care program who come to change the dressing on the peg tube. I was meant to take a picture for display here tonight, but she snuck out the door before I could do the deed. Given the quality of the photos I have been taking lately this was probably a good move on her part.

Later in the afternoon one of Leanne's work colleagues arrived with a floral tribute from the colleagues at her work place. I took photos of course but they were SO bad that Leanne has forbidden my placing the results on line.



I am a bad boy, I am disobeying part of her command. I managed to save the shot of the flowers at least so that people can see how lovely they are and how much staff at her work place feel with and for her in this sorrow filled time as she continues to mourn the passing of her beloved dad.

It's now just the time to await Marmaduke completing his duties with yet another flask of goodies and then attach the last of the flasks for the day, then bed, to start the cycle again tomorrow.

Come on Down . . . .

This is to inform you all that we have more or less settled in and are generally "at home" for those of you who would like to visit. A phone call in advance would be nice just to ensure that we do not have other plans or that I am OK enough to see people without nodding off. Apparently this is disconcerting to some, as they feel it reflects on the content of their conversation when in fact it's merely the side effect of some of my drugs.

The photos above were taken this morning featuring a small portion of the backyard with Leanne,as usual, looking competent and ready for anything while I have had to crop my photo to show my best features while hiding the bald spot and other aberrations.

I have no idea what other people are doing, but we are going to soak up the sunshine and 26 degree temperatures while we can. To hell with the news from Washington and elsewhere that might even as I type, knock off substantial portions of my superannuation.

There is nothing I can do about it. I can however do something about my vitamin D deficiency by exposing my pale winter blanched skin to the suns rays for at least 20 minutes, after which a nice beach umbrella will preserve me from further harm.

All this and fresh air too.

What are you doing today?

We are told the Romans had bread and circuses to entertain them while Rome burnt, Nero had his fiddle. I guess all we can hope for is something similar if we have access to CNN, that way we can all watch the demise of the American Empire.

Now if only I had a violin, two hands that still work and some talent . . . .

Thanks for your condolences

Many thanks to those of you who have sent messages of condolence at the recent death of my father.

I cannot say how shocked and stunned we all have been. It is still unbelievable as he was fit, healthy, took no medications and this tragic accident seems as if it was so avoidable. It has robbed us of at least 15 years more with him and my family and I are quite inconsolable, as he was in such excellent health, being well on the way to beating his mother's record of 98 years.

The autopsy was inconclusive as to the sequence of events that led to his death and so there will have to be a coroner's inquest which could take more than a year before it is held. My own view is that he was leaning to pick some oranges for me (at my sister's home which is only about 50 metres from my parent's home on their property)and he either tripped and hit his head on the galvanised pipe fence post, falling to hit his neck on the electric fence, the pulse of which then caused his heart beat to falter and stop OR he hit his neck on the fence and then hit his head and then his heart stopped. What the medical examiner did say is that there was absolutely no sign of heart disease, no arterio sclerosis, no sign of an exit site for electrocution so all of them a re ruled out but there was a slightly enlarged heart. Our view is that this was due to the extremely hard physical work he did all his life including working as a blacksmith from a young age with his father, but we may never know the real reason he died.

What I can say is that I tried very hard to bring him back when I found him lying on his side in the paddock about 10 to 15 minutes after he left my mother and I cooking dinner. Unfortunately, either I was just a few minutes too late and/or my attempts at CPR were not successful or not skilled enough. I hoped to bring him back but there was no heartbeat when I found him, although the small amount of blood on his forehead was still wet and warm which would suggest I was not long in finding him.

Anyway, we gave him a very good send off with close to 250 - 300 people in attendance at the funeral and graveside. I wrote the Eulogy (with additions from my sister, mother and brother) which my brother and I delivered and my sister read dad's favourite poem "Bannerman of the Dandenong" by Alice Werner. My sister and I organised the funeral and my mother and brother organised the organist and grave digger. It was a very personal but dignified service. My sister, Narelle, organised Waratahs from the Wollondilly shire, grevilleas from her father in law's garden and other native flowers through the florist which meant the flowers were just beautiful and special.

So dad is buried at St James Anglican Church in Luddenham, only 200 metres from where he lived all his life and from where he was baptised. He knew all the graves, where the stone ridge runs through the church yard and did a lot of work in and around the church. His parents, grandparents, sister, aunts and uncles, cousin and many others are with him there and while the cemetery has been closed, my mother, siblings and I will all be there in due course too.

Thanks once more for all your support whether that's been through email messages, phone calls, flowers, visits and hugs. I appreciate it very much. You've heard it, no doubt, a million times before, but something like this really makes you think about what you want to do with and how you want to live your life, because it can be so shockingly suddenly taken away. The message I take from all this is to cling to the good people and things in life, discard the irrelevant and think about living each week as well as you can.

Salut for now - Leanne

Tethered to Marmaduke and other matters

I am writing this for Peter as he is feeling confined and frustrated by Marmaduke, also known as the IV drip pole, on which hangs his 1 litre of Ensure Plus.

Today we have been out together, albeit to undertake a few small tasks in Belconnen (northern suburbs of Canberra). The weather was sunny and still, so Peter was keen to take advantage of the softness of the climate and the few hours of freedom from the 16 hours of being tethered to Marmaduke (i.e feeding), to go out from the house. We visited an old acquaintance at her new shop in the Jamieson Centre (selling pearls and jewellery)for a few minutes and then chose some appropriate mounts and framing for a piece of needlework for my sister, from the only place in Canberra that does it properly (Antoinette's Fine Framing).

After that the leisurely 1/2 hour drive back home was punctuated with a couple of other minor stops before getting home in time for more medications and finally Marmaduke at 2pm.

The sheer delight of being out of the house on a lovely, clear and sunny spring day and of being together, rather than separated, cannot be underestimated. The freedom to go somewhere together which was not medically related, after more than 4 months of illness and treatment regimes, was a small but treasured delight.

Poor Peter was, naturally, very tired after this brief excursion and the few hundred metres of walking it entailed. However, I am hopeful that it is the start of being able to gradually reclaim some stamina and also assist in reducing the swelling he has in his ankles which appeared last week.

Trying to get the routine back into synch has been somewhat of a challenge as it is the same but different because the new peg tube we had to have inserted is less malleable and more difficult to use. Also we are unused to each other's habits and requirements at night again and need to re-establish a mechanism that suits both of us not just one or the other. On the home front,Peter is now very keen to have visitors and to see people generally. So please make contact if you are local as we would love to have you drop by. I think that we need to ensure this happens otherwise he will be left with only me for company and that is not optimal when I am so taken up with all the daily practicalities of keeping him and the house in order.

So with the milder weather coming on we may be able to spend a little more time out of doors while ever Peter feels well enough.

Enough for now. Best wishes to you all - Leanne

Days at Home

Well, back from the hospice and finding things very different. For example, I can't call a nurse when I need one. I can ring Leanne of course, but she is a problem she gets to me without a grumble, but once awake she finds it difficult to get back to sleep. Nurses do things in shifts so they are always available (mind you they can be found to grumble from time to time - it's probably because they are doing a double shift) I simply have to invent a way for getting through the night without assistance. Sigh!

Meanwhile, just for the nursing staff at the hospice, the dressing CAN be changed to a Statlock I now know this for sure because we did it today. Now all I have to figure out is how to clamp it off when required. At the moment we are trying my iron grip in a pinch.

We attended the 3 monthly review with our oncologist and he indicated that my bloods are better, not perfect, but better. That was pleasing, however when I jokingly asked if I was cured he gave me a fixed stare and advised I should be glad I am walking around. THAT was sobering!

Went to quickly meet up with one friend who works across the road at TCH and then it was home.

My hand is at present my sorest point and the drugs for keeping this pain under control are not working well, will have ask about increasing the dose or ???

We have been watching the news and seeing our superannuation going to the dogs while being amused by those ads on the TV that advise people to put their savings into superannuation. All this while at the same time we note how people in situations like mine need some hoard of cash to pay for medicines. Just two boxes of stuff are well over the $100. If those pharmaceutical companies get into problems as a result of the financial crisis I guess they will just raise their prices while we who need them, just have to pay for the privilege of staying alive. "It is always thus" says some sad voice from the ether behind me.

I think I will call it a night and get some sleep then on the other hand Marmaduke or whatever we are going to call the new pole on which hangs my feed will not be ready for hours yet. Sigh!

For those of the Jewish faith who are reading this blog Happy New Year!

Now to sleep, perchance to dream . . .

Retrospective - Part 5

You all know who you are and all I am allowed to say is "Thank You, It has been a pleasure."

Retrospective - Part 4

I have not been adding to this blog for a reason (or three). I have discovered that hospice life can be quite busy, leaving little room for little pleasures like writing a blog. No I am NOT referring to the life of the staff, although I suspect the criteria apply to them as well. I am referring to patients.

In my case I wake by at least 6:00 am. This is normal for me and is not the result of some awful tearing pain or mishap caused by medication. Though I have to say that for other inhabitants this may well be the case.

Having woken, if I am not assailed with a desperate need to clear my bronchi, nasal passages or some other part of my anatomy I find that I have time - usually only a few minutes - to rush to what is known as the Family Room where the hospice computer is located.

Here, I have just enough time to check my email and deal with it, before one of the nursing staff locates me and tells me that I have to have my early morning 'meds'.

If the timing is right then there is a chance, just a chance mind you, that the bottle of feed to which I have been attached throughout the night, has run its course and I can be unattached from it and start my favourite time of day at the hospice, the time when I am FREE from any attachments and have to endure only two more rounds of medications at 8:00 am and mid-day. Then it's a hook-up once again to the machine that feeds me, provides my drink and allows medication to be provided to me - the PEG between 1:30 and 2:00 pm. The PEG is simply a tube that has been inserted into my duodenum, (the stomach not being where it should be,) and then secured in place by some ingenious dressings.

'Henry' as I would like to call this appendage is both vital to my well being, but also a nuisance and a worry. The worry being that if it slips out and for some reason cannot be replaced I am 'cactus'.

Still at least at this point, if all is right with the world, I can look out of my window and observe the fish that are jumping (no doubt for insects) and the other water birds going about their routines. For those who are not early risers let me just say, you are missing a really lovely time of the day when all is still, until the morning madness of the rush hour starts at the very periphery of vision on the roads and at the airport.

By 8.00 am I am usually called for my main round of Meds (medications). One of the nursing staff assigned to that part of the building where I am located is the 'chosen one' for the day (and generally for a few days thereafter) to administer the medications and then when this round is completed perhaps assist me with my ablutions. Yes folks, my illness and its ramifications are reducing me to a state of disability and a state where I need help with washing my hair and the rest of my corpus as well. Sine the advent of a loss of functionality in my right hand and arm I need assistance to be able to do the things that can generally only be done with both hands and of course with things that can only be done by the right hand.

I digress.

If the computer terminal is free I can continue to record the events on the blog, until my work is interrupted in the most delightful way by one (or more) of the volunteers. It is generally a welcome interruption and one that I have learnt to take advantage of.

What a wonderful, dedicated and diverse bunch of men and women they are (or in inverse order women and men - I will not have it said that I am sexist)

There seems to be a volunteer here from most walks of life and because of this, engaging in conversation with them provides an opportunity for both parties to learn things about each other of course, but often also about things in the world that, were it not for the encounter at the hospice, I would never have encountered. Perhaps for some of the volunteers, a similar experience arises when they hear about my interests and experiences.

I don't know anything about their training by Palliative Care Society of the ACT, but I am sure that by getting in touch with the organisers, anyone who wishes to consider participating as a volunteer can find out more.

Were it not for them, staying with and just being there, I am not sure I would have survived some of the nights I have had when the effects of the illness in combination with the medication have left me feeling really out of it, scared out of my wits, helpless and very vulnerable.

I hope to be able to feature photos of just some of the wonderful people I have met during my stay at Clare Holland House when I get back home to the equipment that will enable me to undertake those functions. Anyone featured will have been asked for their permission to appear on the site and the vary fact of their appearance will indicate that they have done so. For those whose photos I have not as yet been able to take - please pop around -alas on the weekend - and I will try and get your photo included. To those whom I have encountered to date, thank you I have really valued the contact and your assistance.

If anyone out there in the public has had someone in the family for whom they have cared and who has been in the hospice, please post comments to this blog and tell us all what you encountered during that time. In this way you can also decide whether you wish to remain in touch.

I will be going home soon and I know that I certainly want or at least would like to be able to stay in touch with some of the people I have met at the hospice and if they wish to get in touch with me to write to me at pgaras@google.com or look up this web site for on going material at www.garpet1.blogspot.com .

This is all I have time for today (or at least now) as my 2:00 pm Meds moment arrives and I welcome back my connection with 'Henry'.

When you are writing these stories, sometime after the events that took place here, it can be a little difficult to raise enthusiasm for the effort required to put the fingers of one hand to work on the key board. This is especially the case when I receive feedback only from a few of you, either in person, (by means of a visit to the hospice) or in writing either by means of a letter to me as the editor of the blog or in person if you know me or as a comment to the blog. For those of you who have managed to write, thank you.

Of course occasionally I do get some really bizarre feedback, as was the case this morning, when I received a note seeking my comments on the American debate between Obama and McClain camps about American Health care.

So I will tease your interest even further than normal by including the exchange as my contribution today instead of an article about what goes on in the hospice

Herewith the exchange with my reply first to the lettter that popped up in my in tray.

Dear Marjorie,

I am an Australian.

I have little knowledge of, or interest in, your health system, I am sufficiently involved in dealing with Australian issues (including my own) to have time to to learn about, much less write about the mess in your country.

All I can perhaps add to the debate is perhaps a very tongue in cheek comment, that those who are still looking for the land of the 'free' need to find 'the home of the brave,' because their search is likely to be a bumpy ride.

I have however forwarded a copy of your note to some other people I know who may have more time to assist you even though they too are from Australia

PG
Editor
Pete's Pages
Written from Care Holland House

2008/9/22 Marjorie Saenz
- Hide quoted text -

Dear Pete's Pages, Administrator

The topic of health care in the 2008 U.S. presidential election is one that is high on the minds of Americans. However, while most people are well aware of the immense challenges facing our health system (rising costs of medical care, malpractice, high prescription drug costs, medical bankruptcies, employers dropping coverage, 47 million uninsured Americans, etc.), they have less understanding of the specific solutions proposed by Senators Obama and McCain.

We invite you to write a post about the topic of health care in '08. There are clear policy differences between the Obama and McCain plans, who come from two differing philosophies on health care reform.

"HealthDecision '08: Obama and McCain on Health Care" is an initiative by HealthCare.com (http://www.healthcare.com) to help potential voters understand each candidate's position. It is an objective comparison of the two platforms, and provides analysis as to the strengths and weaknesses of each. Most importantly, HealthDecision '08 provides an interactive voting tool that allows users to "vote" for a preferred plan. HealthDecision can be accessed at http://decision.healthcare.com/obama-mccain/.

HealthDecision '08 will provide you with much of the primary research with which to form a post. In addition, we provide you with links to third-party election coverage from Health08.org, NPR, The New England Journal of Medicine, NY Times, National Journal, U.S. News, WebMD and many other sites, that may serve as supplemental information sources.

I hope you'll join us in our effort to raise voter understanding on this very important issue. We hope that you will use our information, and also link your readers to our site in order to have their voices heard.

Lastly, if you're interested in posting real-time results of the HealthDecision '08 poll, please reply to this email for instructions on embedded our widget onto your blog.

Thank you.

To your health,



Marjorie Saenz
HealthCare.com
http://decision.healthcare.com/obama-mccain/