Monday, June 29, 2009

The Better News and Views I hope

Having had those wonderful experiences on Saturday I simply cannot wait to tell you all about yesterday and today.

Yesterday I had a visit from one of the 'followers' of this blog. A 'follower', if I may add, with whom I have had the good fortune to work in the past. Through common concerns about cancer treatment in our lives, as well as personal interactions we have managed to have, what I certainly regard, as a warm friendship.

It was fabulous to see her. I am just sad that there are others, also lovely people who are kind enough to be both caring and kind and do not visit, because they have someone in their family who is possibly ill with something. When someone like me is at risk of infection, because of lowered white blood cell count thanks to the chemo therapy, their vigilance in not visiting, is also appreciated.

Visits like this from family and friends are perhaps the most welcome events that can happen for me and also perhaps for others who become more and more isolated thanks to illness. This may not appear to be the case if and when I or someone in a situation like mine becomes unable to take things in and seemingly do little more than survive from one hour to the next.

Nevertheless it's true and even if there is an impression created that there is nothing 'there' often the perception is open even for a little while and the very presence of the visitor is both soothing and welcome. That is to say this how it is with me - yet I recall almost as a clarion call that each person is different, so perhaps I should be advising that asking the ill person as well as his or her carer may be the means for clarifying what is appreciated and what is not.

Failing visits, I welcome calls on the phone or Skype when I can manage to croak with appreciation. Once again thee are many times when the body will simply not cooperate and actually prevents me from taking calls, speaking clearly and thus of course being understood. I can assure you that for someone who used to value and be valued for his communication skills - this is a development that has been almost as hard to bear as having to do without the use of the arm that was designated by our school system as the arm for writing. The great news now is that finally, after more than 50 years, I can and have started to practice writing with my left hand to ensure that it is clear enough and useful enough to be read and used in meeting the needs of daily life out there in the real world that exists outside my home. As for speaking - that's not good, but with any luck the ears are still working and I can hear what is being said to me and respond - even if it is with monosyllabic grunted 'views'.

Today and over the last few days especially, I have had the joy of people I was privileged to work with as a youth worker well over several decades ago, contact me through email or Skype to express their best wishes and their appreciation of our time together - so long ago in Sydney.

Being even remembered - much less appreciated is wonderful and simply brings tears to the eyes. For those of you who have sent best wishes and notes of appreciation - thank you. I hope yo read this blog to know how much I appreciate your notes and best wishes.

I am afraid that all or at least most if not all of the families to which I belong are scattered across the face of the planet.

So it's only in my fantasies that I can meet with them, talk with them, hug them when needed. I guess that Skype and Google talk help when available to them simply because I can see as well as hear them. It's about the closest I can get to being with them.

My most immediate family lives in New York and its environs, then there is one in South Carolina, another in Vermont. There is one in Washington state, then we have to head towards Canada if we are going north or California if we are heading south. Yep, you guessed it - very extended family relatives I grant you - but relatives none the less.

I do not miss out on Chicago Ill. and a number of other places as well.

From here I have to take the plunge and swim back to Europe and especially Hungary - from whence I came into the world and look for the descendants of as number of families all part of the large eventually extended family that remains there. Another time I can perhaps consider how I can tell you about their situation and views in the current financial recession that is reported on elsewhere.

That conversation is not appropriate for this blog.

Anyway, suffice it to say dear readers that when I could travel I did so to meet those relation about whom I was aware. Alas those trips were at a time when the data base about who could be called relations did not exist to the stage that it does today. Thus there are many, and I mean many people around the world, whose connection with me and indeed sometimes with each other has only taken place because they and I were interested in pursuing the exhilarating hunt for ancestors and family. I really wish I could meet and spend time with them. I certainly hope that they will use the genealogical material I have compiled in addition to the material that some of them have gathered and published on their own.

If they happen to contact me, when the effect of the drugs is absent from my body, when the legs work, when the brain works, when I can feel normal and really more alive than just a patient in chemo therapy I am and continue to be delighted by the contact. I am afraid that I may not be able to manage my side of it because of my condition. Today, alone I have tried to manage at least five or more connections with Skype.Some were more successful than others. All of them were wonderful.

In addition, other private, but happy events took place today and I can only report to you how pleasing it has been to be there, fully awake and fully cognisant of what's going on.

As for my health situation. In the last few days I have felt that my system has been drying up inside leaving behind only some stuff that continually expects to be expelled orally. Not really a nice feeling. It is likely that there is another infection spreading in my lungs or something - then again perhaps not. I have just finished one round of treatment - just in case it may be that another one is warranted.

In the last few days we discovered that the so called 'peg tube' that I have been using as my 'feeding station' for the last year or more had a problem. Though it was replaced in a brief procedure a few months ago, the tap we had asked to be inserted had cracked and was leaking. For those with peg tubes I hope that this comes as an appropriate and informative piece of knowledge. The good news is it can and indeed was replaced at the same place where we managed to get the peg tube in the first place.

I am not sure how many others are as restricted by such things as peg tubes - but it is good to know that assistance is available when needed.

To be honest I have so much more to scribble but time is short and I really need to rest.

I will see what I can do tomorrow - with any luck it will be as great as today has been.

Saturday, June 27, 2009

A good day Friday - today is going to be even better

Saturday, today, is going to be another good day.

I am feeling fabulous, and looking forward to getting up and about, walking, building back some leg muscle and finally spending some time with Leanne in a role that is not confined to a bed, an arm chair, a wheelchair etc.

It is amazing to me how a day without nausea can produce a feeling of well being, almost euphoria.

Yesterday, Leanne and I spent not just minutes, but hours undertaking real life activities like going into the market places near us to update bank related issues, take care of health related issues for Leanne, that inveterate favourite - medical bill related issues, clothing issues and in general getting out and about.

Such matters would not normally be within any view of a day that would be shared with others on a blog, they would merely be things you did because they were there to be done. These days, because of my situation, they are triumphs of achievement - at least for me.

My legs held up, my system actually coped with the workload and so on.

When we got home, I have to admit I collapsed into the arm chair in our lounge room and put my feet high on some cushions to try and get the swelling out of them. It took hours of course, but eventually they were being back to the sleek things they were meant to be.

I am certain that we, like the rest of the planet, were overwhelmed with the brouhaha that was made by the media concerning the death of Michael Jackson. I have to say I really enjoy and have enjoyed his music for many years and I did not expect that he would pass before I did. That said, what took place everywhere in the English speaking media world did seem to be an overkill response - was it a slow news day?

Meanwhile in Australia, we have seen a bloody fight between our Prime Minister, Treasurer and the leading lights of the opposition parties. This also is a brouhaha but one with some real impact on our lives here. The allegations, counter allegations, investigations, actions by the AFP or Australian Federal Police are all fascinating grist to the mill.

So what did Leanne and I do with all this?

What would a normal relatively well adjusted couple do, we turned to the video of course and having found the sense to borrow numerous videos from our local library, we selected the most appropriate one from among our borrowings - "Molliere".

Since this was about the playwright, actor, producer and director it served to indicate - at least to me - Leanne can speak for herself - that the bedrock of farce is not necessarily in the mind and skill of the playwright or author, but rather in the thinking and behaviour of the people that they encounter in their lives and then use with all their skills in sorry telling to bring to the attention of others..

The saddest, funniest, most complex and yet simple things that people think, say or do are the foundations of life and its intricacies as we know them.

NEW FLASH!

I am going to finally get assistance with showering, dressing and - yes - wait for it - getting up and about at last. It has been very difficult in the last day or two to keep to a schedule for not only the medications and other matters because Leanne's own medical issues have meant that she is physically less able to take care of my needs. We both hope that her pain is temporary and can be assisted with varied exercise and rest. Coming as this does at this particular time when there are some other major events in our household - known but to few others, this is not a great thing to happen.

However it is happening and I guess that the two of us will simply have to get on and cope with things or if necessary get people in to help further.

Perhaps more later today - but right now I would like to explore my physical self and not just sit at this computer desk like the public servant that I used to be. Being retired does have some real meaning and values - not least of these is not having to do the 8;30 - 4:51 (or whatever this has become)

I hope to be able to do more later.

In the interim, all you who know me please note - a phone call is not contagious so how about a call when you have the time and inclination?

Salut

Peter

Monday, June 22, 2009

Peter's View on Cycle 2 of Chemotherapy, the Universe and Everything....

Hello everyone, Peter has been well enough to type up his thoughts this week, which is quite an effort given he has only one hand that works now. He starts the 2nd week of the 2nd cycle of chemotherapy with more infusions of Taxotere tomorrow. So, enough from me and here are some of the things that have been occupying his mind over the past couple of days:

To all of those who have followed this blog thus far, I think you need to hear from me - the owner and original writer for this blog. The reality folks is that I am not at all well and this cannot be left at the door of the medications that I have been ingesting nor the simple consequences of such medication - loss of hair, lungs that are filled with crap and need to be emptied so that I can breathe and just function at some basic level. Alas my mind is clear and really quite vividly analysing the situation each blasted moment the day or night - whenever I happen to catch myself in an alert state. What does my analysis tell me?

It tells me simply that I am on my way out. There is no wriggle room out of this analysis and of course as Dr. Kubler Ross branded into my brain cells years ago in what was another life, as part of my bereavement process I really need to:
  1. deal with unfinished business
  2. say and give opportunities to others to say their good byes
  3. finalise any outstanding matters - in my case simply as an example deal with the relationship issues that of course have arisen in a small life time with the wonderful and very loving woman in my life;
  4. the details of where I am to be placed when I can really not get up for another round of the pummelling and punishment that this illness eventually takes.
As to the last matter - I have no idea what other people do. Do they simply contact a funeral director and make the necessary arrangements while they are alive or does one wait and allow a loved one to make the arrangements. Should one take into consideration religious differences that have not impacted on the pathway through life, but which may have a different meaning to the people involved when one passes on and the other remains. Does one factor into consideration that Canberra being a sort of half way house for public servants may well mean that one is left in this city while a partner remains for his or her life span but then wishes to be placed elsewhere than in this fair city - perhaps closer to other extended family members back in the location where that person was born and grew up.

All unfinished business that sadly is becoming more and more urgent with the passing of every day and all unfinished business that takes one back in time over an entire life span raising issues that once produced anger, frustration, sadness, even revulsion and violent disagreement with others.

Business of this kind is generally buried along with other garbage at some lower level of the psyche. It seems only now in the most impossible circumstances to raise its ugly head and demand some form of resolution.

I know that in my life there have been many instances in which my behaviour has been inappropriate and as a result has hurt people. For this, all I can do is to say sorry - and I do. I really wish that the situations could have been otherwise. Of course I say this now with a head that I hope is filled with changed outlooks on life, changed measures of how I look at and value others and of course how my learnt behaviours, attitudes, prejudices, abilities all mix together in this melange that calls itself me.

Each day this changes, for better or worse as internal and external stuff impacts on the what's left. I sincerely hope that it is changing for the better and that I am becoming a better person in the way that I think and go about finding those few things I can change. I also seem to recall some of my teachers telling me the wise advice that I should change what I can, accept what I can't change and just try and deal as well as I can with what is out there.

I have no idea if I can do this but I am trying.

In the interim, while I can, I am happy to have visitors - provided that they understand my levels of incapacity and levels of cell helplessness - ie the current levels to which my entire cell structure is compromised - in other words people who are in good health.

Monday, June 15, 2009

Update Monday 15 June 2009

This week has been the best week Peter has had since he started the chemotherapy - which is unsurprising given that he has had 1 week off before he starts Cycle 2 tomorrow. I could tell he was improving by his ability to speak more than a word or two and his desire to be up and about in the house. A true benchmark was that he spent half an hour each on two successive days at the computer - something he hasn't done for about 6 weeks or more. He was also quite fiesty with visiting community nurses and engaged in quite a bit of banter, which is always a good sign for him.

In the past 2 days, I have abandoned trying to get on top of all the household tasks and have spent slabs of time having a thorough thrashing at Scrabble. Peter is excellent at it and managed to get 105 points out of a very stingy assortment of letters yesterday, while of course I like to concentrate on interesting words, which is not the way to win a game. Some years ago I banned myself from playing with him because I was sick of being beaten ALL the time. But I realise that he needs to have mental stimulation and daytime television or reading is not the way to do it and he needs that kind of interaction. So I have called a truce and he has responded really well. He has also asked whether there might be a volunteer at the Palliative Care service who might like to come to play board games and cards with him during the day. But we have yet to hear if that's a possibility.

I have also "lambasted" him into doing some exercises occasionally for his legs and he walked about 75 metres down the cul-de-sac this week as well which was also a major effort.

Last week we went to see 3 Occupational Therapists who considered the issues for his right elbow, and how to alleviate recurrence of pressure sores. They gave us some good advice and we are waiting to see if there are any special aids that we can use for removing pressure. Given that Peter's right arm and hand is now entirely paralysed, we have to be very careful to avoid any consistent pressure that could result in another pressure sore opening up. Apparently skin and tissue that has been prone to a pressure sore will only ever be about 80% as strong for a year or more after it heals.

Tomorrow, Peter is due to commence the 2nd cycle of chemotherapy and he is also seeing his medical oncologist to see if he is up to undertaking the 2nd cycle. His bloods seem okay according to our GP who visited this evening. Peter didn't wish to be exposed to ill children at the surgery so he kindly did a home visit tonight.

One thing which has seemed to deteriorate is Peter's voice. It is higher and squeakier and he is more "breathy". I'm not sure what's happening there....

Anyway, if chemo goes ahead tomorrow then if things follow the same pattern as cycle 1, we expect that he will have a pretty rough 2 weeks ahead from Wednesday. So we are bracing ourselves for that. Well, that's about it for now. So much to do and so little energy to do it!!

Best wishes to everyone. Leanne

Monday, June 08, 2009

Endof 1st Cycle of Chemotherapy - Monday 8 June 2009

Apologies for the delay in writing the blog until today.

Peter had his second infusion of Taxotere on Tuesday last week. He was so weak and low on that day the nurses asked him whether he really wanted to go ahead with the second infusion and he said "What choice do I have?" to which the nurse replied "Well, sometimes it's about quality of life rather than quantity" and Peter's reply was "Just stick the needle into my arm!". A sentiment that I applauded, knowing Peter is so keen to continue to live and I am keen to continue to support him; the quantity versus quality issue seems clear-cut from a distance but when the option is to face death sooner it seems glib and irrelevant at that moment.

So the rest of the week Peter spent the majority of time in bed but seemed a little less nauseated that the week before, if that's possible. He's been keen to get up and spend time in his recliner chair in the family room while I buzz about doing all the things that need to be done. I noticed, however, that his leg muscles are getting smaller and he found it difficult to get out of his chair this evening without assistance. Apart from that, so far there has been no body rash but there is a battle with oral thrush (another side effect) which is not helped when Peter occasionally feels the need to refresh his mouth with lemonade or apple juice - as the sugars help the thrush to grow.

Meanwhile, luckily I've been able to continue his liquid food and that is keeping him in reasonable condition otherwise. Today I can see an improvement and he is watching television now. He doesn't have to start again until next Tuesday so I anticipate he will feel better each day during this coming week. He has said today he is missing human interaction again which I know means he is a little better as last week he could only point and moan for things he needed.

I have been keeping to the house for the majority of the time as Peter has been so sick, only heading out quickly to do key tasks. Also, given that the chemo makes him so prone to infections I have been keeping an informal quarantine and trying not to come into contact with people more generally. Problem is this means Peter is isolated from friends as well. But today is the last day when he is most prone to infections so I hope well friends will be able to visit this week.

Things have been bleak weather-wise with short, coldish (12 degrees C to about 15 degrees C), grey days which don't help Peter feel positive. As he always says" Why do I have to bear all this AND a Canberra winter at the same time!!" Too true Peter... we used to either work harder at work or head to Europe with the onset of a Canberra winter every second year and that was the best use of a Canberra winter I can think of, to tell the truth!

Meanwhile, I am gradually making the junk room back into a real bedroom but that has meant the rumpus room is now the junk room! Next step, is to clear the garage a bit and then move the stuff from the rumpus room to the garage so it has most of the junk! I have set a deadline of the end of this month to try to get that done but my thoughts are more active than my desire to get out into the garage.

Not much on this week apart from taking Peter to meet with 3 occupational Therapists about the pressure area on his right elbow.

Best wishes and special thoughts to our northern hemisphere friends who are on holidays or contemplating one. Our spirits are with you and I only wish Peter was healthy again and we could meet up with you somewhere warm, sunny, picturesque and historic with marvellous food!

Cheers for now - Leanne