To My Friends Collated
To Mikes Friends
31 January 2008
Mike
died at 4.30 on the afternoon of Friday 25th January in
Christchurch.
He had been gradually weakening over the previous few weeks and all his family came in the last time.
A vigil and then a funeral, on the Wednesday, were held the following week.
700 people atttended.
Mike built relationships in many settings. One community had this farewell from him:
A fortnight before he died Clare Elizabeth asked that the following message be sent to the ANZ psychodrama community in which he is well loved and that he worked to build. "Mike's condition has significantly deteriorated and he is nearing the end of this life. At this stage he is not in pain. Julie, his wife, would like to send her heartfelt thanks to all those in the psychodrama community who have provided loving support to both Mike and her over the last 12 months or so. Unfortunately the time for personal communication with friends has passed. However, Mike would like to pass on this message to everyone:
' There remains in me the sure and sacred knowledge that spontaneity is the only thing that will save the world. Thank you very much to the whole psychodrama community for what you have given me over 30 years.' "
He had been gradually weakening over the previous few weeks and all his family came in the last time.
A vigil and then a funeral, on the Wednesday, were held the following week.
700 people atttended.
Mike built relationships in many settings. One community had this farewell from him:
A fortnight before he died Clare Elizabeth asked that the following message be sent to the ANZ psychodrama community in which he is well loved and that he worked to build. "Mike's condition has significantly deteriorated and he is nearing the end of this life. At this stage he is not in pain. Julie, his wife, would like to send her heartfelt thanks to all those in the psychodrama community who have provided loving support to both Mike and her over the last 12 months or so. Unfortunately the time for personal communication with friends has passed. However, Mike would like to pass on this message to everyone:
' There remains in me the sure and sacred knowledge that spontaneity is the only thing that will save the world. Thank you very much to the whole psychodrama community for what you have given me over 30 years.' "
|
To My Friends 11
02 November 2007
To My Friends 11.(2nd November 2007)
It seems a long time since I’ve written anything at all except the odd poem but when I look at the dates its only about 6 weeks. Much has happened in that time:
On Monday, Tuesday and Wednesday of this week I had the last round of my chemotherapy. Indications after the first three rounds are that there was a reduction in the size of the tumours in my liver. This was good news. Not a cure but a little more life. We have no idea what the situation will be this time and will probably will not find out until the end of November. In the meantime there are more small tumours on my face and head. I suspect that nothing further will be attempted until there is a full evaluation of the effects of the current chemo. In the meantime we wait and live from day to day.
The main side effects are pretty much the same as they were before. Dry mouth, a return of restless legs, An increasing stiffness in the scar tissue in my face, neck and shoulder and tiredness. All of these things seem to have been cumulative, that is they are worse now than they were at the beginning of the chemo. The tiredness is very interesting. I think that in some sense a significant amount is mental. This of course is not true for everyone. Sometimes I just sit in a chair and do not want to move. If I surrender to this feeling I will do nothing except doze and occasionally read or watch TV. However, if I make a real effort to get going with some little project I discover that although the tiredness is not completely gone I am quite capable of getting going and doing lots of different things.
Since I last wrote my youngest brother, Noel, has gone on dialysis .This was a great shock for both Noel and his wife Veronica. They had a donor lined up and it all looked set for a transplant but at the last moment the doctors would not go ahead. So now he is undergoing what I endured 6 years ago. That is going to the Dialysis Training Unit 4 days per week to dialyse and train so that he can do it at home. Often, as part of my effort to overcome tiredness campaign, Julie drops me off in town and I walk down to the Hospital and spend some time with Noel before walking back about 45mins through the park. The park and the gardens are often a source of inspiration particularly in the line of writing poetry.
Another event recently was a two week visit from my son in New York. This I loved – to have Nathan whom I see so seldom staying with me for two weeks. We had lots of talks and drew closer in repairing some of the hurt that had been done in the past. During this time I discovered that it is necessary often to double someone before that person can accept any mirroring. During this time also Anna and Seth came from Wellington and Auckland respectively and so we had some good times together as well as the resurrection of some old patterns. Fortunately some greater maturity had developed.
Lately I’ve been reading some rather thought provoking books. The first was James Hillman’s ‘A Terrible Love of War’ .This is a very good read in which basically Hillman explores our ambivalent relationship with war under four headings. War is Normal, war is inhuman, War is sublime and Religion is war. The book certainly brings forward some interesting and powerful data.
The second book I have been reading is ‘Psychodrama – Advances in theory and practice’ edited by Clark Baim, Jorge Burmeister and Manuela Maciel. This is a compilation of work from 28 different authors or practitioners, including Sue Daniel. It is published in two parts the first focuses on ‘New Perspectives in Psychodramatic Theory’ and the second on ‘Developments in psychodrama practice and research’. Many of the chapters I have read are interesting. Sue takes us back to our roots in role theory and the cultural atom. And there is a very good chapter by Peter Felix Kellerman on mirroring. Some other chapters seem a little too academic for me but overall the book is well worth a read.
A third book I have been reading is called ‘Jesus for the Non Religious’ by by John Shelby Spong. This book strips away and demythologises some of the biblical stories that are a bit hard to swallow. He links it all up with the Jewish background in which the bible is set, relates New Testament to Old Testament as well as pointing to the lack of adequate language for conveying what the writers wanted to convey, namely, their experience of Jesus.
I’m still living in some fear that the end of the chemo will be the last medical intervention and that now I will just have to sit it out. The fear is not great and so far I am managing to live a relatively normal life – tired but still able to get things done.
I’ll finish with a poem.
Pounamu
Cold hard dark
keeping its own shape
and feel remembering
its own journey over
many years – millions
beyond all understanding;
now here with me
it sits very still
its green stone song
fading as it allows
itself finally to rest
claiming a shape
that is now and always
its own. Such beauty
is seldom sung.
Time is as time is
a green space filled
with that which developed
toward this alone,
remembering now its
true nature given
and love from a hand
that has caressed its beauty
oven five fruitful years
now passing on
her own soul
as part of this giving
and we become one
the stone merging
in its fullness
to bring healing.
Mike Consedine
14th October 2007
It seems a long time since I’ve written anything at all except the odd poem but when I look at the dates its only about 6 weeks. Much has happened in that time:
On Monday, Tuesday and Wednesday of this week I had the last round of my chemotherapy. Indications after the first three rounds are that there was a reduction in the size of the tumours in my liver. This was good news. Not a cure but a little more life. We have no idea what the situation will be this time and will probably will not find out until the end of November. In the meantime there are more small tumours on my face and head. I suspect that nothing further will be attempted until there is a full evaluation of the effects of the current chemo. In the meantime we wait and live from day to day.
The main side effects are pretty much the same as they were before. Dry mouth, a return of restless legs, An increasing stiffness in the scar tissue in my face, neck and shoulder and tiredness. All of these things seem to have been cumulative, that is they are worse now than they were at the beginning of the chemo. The tiredness is very interesting. I think that in some sense a significant amount is mental. This of course is not true for everyone. Sometimes I just sit in a chair and do not want to move. If I surrender to this feeling I will do nothing except doze and occasionally read or watch TV. However, if I make a real effort to get going with some little project I discover that although the tiredness is not completely gone I am quite capable of getting going and doing lots of different things.
Since I last wrote my youngest brother, Noel, has gone on dialysis .This was a great shock for both Noel and his wife Veronica. They had a donor lined up and it all looked set for a transplant but at the last moment the doctors would not go ahead. So now he is undergoing what I endured 6 years ago. That is going to the Dialysis Training Unit 4 days per week to dialyse and train so that he can do it at home. Often, as part of my effort to overcome tiredness campaign, Julie drops me off in town and I walk down to the Hospital and spend some time with Noel before walking back about 45mins through the park. The park and the gardens are often a source of inspiration particularly in the line of writing poetry.
Another event recently was a two week visit from my son in New York. This I loved – to have Nathan whom I see so seldom staying with me for two weeks. We had lots of talks and drew closer in repairing some of the hurt that had been done in the past. During this time I discovered that it is necessary often to double someone before that person can accept any mirroring. During this time also Anna and Seth came from Wellington and Auckland respectively and so we had some good times together as well as the resurrection of some old patterns. Fortunately some greater maturity had developed.
Lately I’ve been reading some rather thought provoking books. The first was James Hillman’s ‘A Terrible Love of War’ .This is a very good read in which basically Hillman explores our ambivalent relationship with war under four headings. War is Normal, war is inhuman, War is sublime and Religion is war. The book certainly brings forward some interesting and powerful data.
The second book I have been reading is ‘Psychodrama – Advances in theory and practice’ edited by Clark Baim, Jorge Burmeister and Manuela Maciel. This is a compilation of work from 28 different authors or practitioners, including Sue Daniel. It is published in two parts the first focuses on ‘New Perspectives in Psychodramatic Theory’ and the second on ‘Developments in psychodrama practice and research’. Many of the chapters I have read are interesting. Sue takes us back to our roots in role theory and the cultural atom. And there is a very good chapter by Peter Felix Kellerman on mirroring. Some other chapters seem a little too academic for me but overall the book is well worth a read.
A third book I have been reading is called ‘Jesus for the Non Religious’ by by John Shelby Spong. This book strips away and demythologises some of the biblical stories that are a bit hard to swallow. He links it all up with the Jewish background in which the bible is set, relates New Testament to Old Testament as well as pointing to the lack of adequate language for conveying what the writers wanted to convey, namely, their experience of Jesus.
I’m still living in some fear that the end of the chemo will be the last medical intervention and that now I will just have to sit it out. The fear is not great and so far I am managing to live a relatively normal life – tired but still able to get things done.
I’ll finish with a poem.
Pounamu
Cold hard dark
keeping its own shape
and feel remembering
its own journey over
many years – millions
beyond all understanding;
now here with me
it sits very still
its green stone song
fading as it allows
itself finally to rest
claiming a shape
that is now and always
its own. Such beauty
is seldom sung.
Time is as time is
a green space filled
with that which developed
toward this alone,
remembering now its
true nature given
and love from a hand
that has caressed its beauty
oven five fruitful years
now passing on
her own soul
as part of this giving
and we become one
the stone merging
in its fullness
to bring healing.
Mike Consedine
14th October 2007
To My Friends 10
18 September 2007
To my Friends 10
Its about 9.00am on a frosty but beautifully sunny morning and I have just returned from a fantastic walk through the gardens and the park. Julie dropped me there for a scan at 7.00am (for Gods sake) and as I came back through the Oncology department the receptionist said to me are you going to walk through the daffodils. I said where are they? She said about 50 metres from here, just through that path over there and you will see them. I had not been intending to go through the park but I went where she had indicated.
A rush of emotion takes over me. Tears briefly, but mainly an overwhelming sense of a great beauty. Totally unexpected. Stretched in every direction as far as I could see, daffodils. Many of these already in full bloom and others waiting their turn. Scattered throughout this field of promises are small clumps of Jonquils and much bigger scatterings of snowdrops. I stood there for some time not thinking and not wanting to think until the words of Wordswoth’s poem forced their way into my consciousness. This poem starts ‘I wandered lonely as a cloud’, but it was the last eight lines that really impacted.
I gazed-and gazed-but little thought
What wealth the show to me had brought:
For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
For the first time I think I really understood what this poem was all about. The experience without the intellect has an immediate effect which now informs our being in such a way that it becomes a resource which unconsciously affects future and past. We are never the same again.
10 days later
I am fortunate. I am still able to walk through the daffodils just about every day. Sometimes by myself, sometimes with Julie. Its still special as more and more flowers bloom. Perhaps I see all beauty differently and appreciate it more. At any rate the scan mentioned above brought very positive news. We had been expecting not much change and the possibility that the doctors would terminate the chemo and turn us loose. Instead they reported a reduction of the tumours in the liver of about half a centimetre and a decision to continue the chemo. This was great news although as is my tendency I was prepared for the worst such that I didn’t feel enormously relieved-- this came over the next few days. I could see that Julie felt enormously relieved as a smile spread all over her face and her body was practically dancing.
This was just great as the day before she had revealed emotionally her stress and her fear. This was really good for me as I sometimes get so tied up in my own life that I forget that Julie is making this journey with me Its still really up and down but I seem to be able to ride these waves a little more easily and accept what is inevitable without letting it drag me down. My days seem full and I am seldom bored.
Over the last two weeks I have had lots of visits from long standing friends, colleagues and mentors. In their generosity these old psychodrama friends have sometimes flown in specifically to see me. Robert Brodie came down after the trainers workshop, Max and Chris a week later and Don Reekie a little before that. I feel enormously grateful for these visits and to know that I am still alive in the minds and hearts of many people. Brigid writes regularly and in the last few months I have had regular correspondence with Sue Daniel .Sue and I go back a long way. Both being assessed as role trainers initially, both coming on to the exec at the same time. Then our lives took different pathways and for a while I was sad. Then realizing that we were both doing what was right for us, accepting. The sad part was that I didn’t see her as often as I had previously. Recently she re established contact with me and since then we have talked of many things and she has sent me some of her beautiful poetry.
During last week I had the pleasure of working with my training Group of nurses for a couple of days. In a four day workshop I conducted the first and last days and Clare did the middle two. This was a very good arrangement since I was able to have a rest and Clare taught a lot of sociometry or rather worked in a sociometric way with issues that were in the group. I loved being back at work again in a group that I have worked with over the last 3 or 4 years. This group has been very good to me since my health deteriorated and through all these contacts both with the group and with my psychodrama friends I have felt very loved.
Perhaps this is a good place to stop. With blessings and love to you all.
Mike
Its about 9.00am on a frosty but beautifully sunny morning and I have just returned from a fantastic walk through the gardens and the park. Julie dropped me there for a scan at 7.00am (for Gods sake) and as I came back through the Oncology department the receptionist said to me are you going to walk through the daffodils. I said where are they? She said about 50 metres from here, just through that path over there and you will see them. I had not been intending to go through the park but I went where she had indicated.
A rush of emotion takes over me. Tears briefly, but mainly an overwhelming sense of a great beauty. Totally unexpected. Stretched in every direction as far as I could see, daffodils. Many of these already in full bloom and others waiting their turn. Scattered throughout this field of promises are small clumps of Jonquils and much bigger scatterings of snowdrops. I stood there for some time not thinking and not wanting to think until the words of Wordswoth’s poem forced their way into my consciousness. This poem starts ‘I wandered lonely as a cloud’, but it was the last eight lines that really impacted.
I gazed-and gazed-but little thought
What wealth the show to me had brought:
For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.
For the first time I think I really understood what this poem was all about. The experience without the intellect has an immediate effect which now informs our being in such a way that it becomes a resource which unconsciously affects future and past. We are never the same again.
10 days later
I am fortunate. I am still able to walk through the daffodils just about every day. Sometimes by myself, sometimes with Julie. Its still special as more and more flowers bloom. Perhaps I see all beauty differently and appreciate it more. At any rate the scan mentioned above brought very positive news. We had been expecting not much change and the possibility that the doctors would terminate the chemo and turn us loose. Instead they reported a reduction of the tumours in the liver of about half a centimetre and a decision to continue the chemo. This was great news although as is my tendency I was prepared for the worst such that I didn’t feel enormously relieved-- this came over the next few days. I could see that Julie felt enormously relieved as a smile spread all over her face and her body was practically dancing.
This was just great as the day before she had revealed emotionally her stress and her fear. This was really good for me as I sometimes get so tied up in my own life that I forget that Julie is making this journey with me Its still really up and down but I seem to be able to ride these waves a little more easily and accept what is inevitable without letting it drag me down. My days seem full and I am seldom bored.
Over the last two weeks I have had lots of visits from long standing friends, colleagues and mentors. In their generosity these old psychodrama friends have sometimes flown in specifically to see me. Robert Brodie came down after the trainers workshop, Max and Chris a week later and Don Reekie a little before that. I feel enormously grateful for these visits and to know that I am still alive in the minds and hearts of many people. Brigid writes regularly and in the last few months I have had regular correspondence with Sue Daniel .Sue and I go back a long way. Both being assessed as role trainers initially, both coming on to the exec at the same time. Then our lives took different pathways and for a while I was sad. Then realizing that we were both doing what was right for us, accepting. The sad part was that I didn’t see her as often as I had previously. Recently she re established contact with me and since then we have talked of many things and she has sent me some of her beautiful poetry.
During last week I had the pleasure of working with my training Group of nurses for a couple of days. In a four day workshop I conducted the first and last days and Clare did the middle two. This was a very good arrangement since I was able to have a rest and Clare taught a lot of sociometry or rather worked in a sociometric way with issues that were in the group. I loved being back at work again in a group that I have worked with over the last 3 or 4 years. This group has been very good to me since my health deteriorated and through all these contacts both with the group and with my psychodrama friends I have felt very loved.
Perhaps this is a good place to stop. With blessings and love to you all.
Mike
To my friends 9
10 August 2007
1st
August
2007
Once again I find it difficult to know where to begin and perhaps there is not a great deal to say. Since I last wrote we have started the chemotherapy. I have had one treatment of the six that are initially on offer. The whole business is very interesting and carefully monitored. The treatment is in three week cycles. Roughly I might call them a week of treatment, a week of side effects and a week for recovery and assessment. Currently I am in the third week of the first treatment and following an assessment a few days ago I am to start another treatment next week. The side effects were not too bad. I had no nausea but my taste buds and mouth were again buggered up and tiredness increased considerably.
This tiredness is a funny thing and I am told that it will get worse with each treatment. I sit feeling lethargic and weary and yet when I make the effort to get out of the chair and do some things for myself or go for a walk I find that something changes and I have some considerable energy that I didn’t think I had yet all the time I want to sit down again. If I take my mind off the desire to rest, I can actually get quite a lot done. The thought of writing anything makes me very tired yet as soon as I start I get involved and the tiredness recedes. I feel quite lazy sometimes and feel that I should be doing more yet I just don’t make the effort.
10thAugust
Well I’ve had the second round and as predicted the tiredness has increased. Everything else is pretty much the same. I am doing a bit more but there is nothing I like better than to just sit in the chair and dose and meditate. I have continued to find Caroline Jones’ book ‘An Authentic Life’ a valuable stimulus to my meditating and thinking and in just seeing some of the strands of my life come together. Apart from the tiredness I do feel quite good. I’m not sure whether this is the effect of the anti-depressive or the treatment; perhaps a mixture of both. The donor site on my leg is still not healed but it is getting better and hopefully another week will see it right. The other thing that is still affected is the scar tissue from the original operation last November. Each treatment it gets tighter so that I now feel that I have a permanent brace on my left shoulder. Oh and I’ve nearly lost all my hair. All of this is just minor and so far I feel lucky to have missed some of the worst side effects.
Clare and I have started to attend six poetry classes on a Tuesday morning. These are conducted by a 76year old nun who in spite of a gammy leg and the fact that she gets round in a motorised wheelchair bounces around the room in her excitement with poetry and is so obviously loving what she is doing that she is a joy to be with. On the first day she has us chanting poetry in a round of four with her conducting from the front and then giving us a stir up for not doing it well enough. She then had us chanting a poem that got faster and faster as we went through. It was all good fun and by the end of it we were all thoroughly warmed up and engaged.
The three poets she is focusing on during the course of the six lectures are Seamus Heaney, Gerard Manley Hopkins and a New Zealand poet called Michael Harlow. She focused initially on Seamus Heaney and it was wonderful for me to really get in to some of his poetry. I have always quite liked him but never really understood some of his writing. In the first poem called “Digging” I just really began to understand some of the connections he made between himself, his father and his Grandfather. They both dug peat but he was choosing to do his digging, not with a peat shovel, but with the pen. Enough perhaps. Another poem
The Chair
Each day he sits in
the chair
a big soft body
that wraps him
in its arms and holds him
warm and alive.
Often here he meditates
and leaves behind
any small troubles
that might distract him
from being with himself.
Such reflection leads him
to many strange places;
a dark dirty coal shed
last seen at six years
a coal box with
low sliding exit hole.
His grandson whom
he has not yet seen
but who already has
an established place
in his identity.
And his son who
wrote a poem
anointing the moment
he became a man
with him
and the amber glow
which surrounded his manhood.
The chair
invites the stillness
that peels back
layers of memory.
In the chair
he finds God.
Mike Consedine
5th August 2007
Once again I find it difficult to know where to begin and perhaps there is not a great deal to say. Since I last wrote we have started the chemotherapy. I have had one treatment of the six that are initially on offer. The whole business is very interesting and carefully monitored. The treatment is in three week cycles. Roughly I might call them a week of treatment, a week of side effects and a week for recovery and assessment. Currently I am in the third week of the first treatment and following an assessment a few days ago I am to start another treatment next week. The side effects were not too bad. I had no nausea but my taste buds and mouth were again buggered up and tiredness increased considerably.
This tiredness is a funny thing and I am told that it will get worse with each treatment. I sit feeling lethargic and weary and yet when I make the effort to get out of the chair and do some things for myself or go for a walk I find that something changes and I have some considerable energy that I didn’t think I had yet all the time I want to sit down again. If I take my mind off the desire to rest, I can actually get quite a lot done. The thought of writing anything makes me very tired yet as soon as I start I get involved and the tiredness recedes. I feel quite lazy sometimes and feel that I should be doing more yet I just don’t make the effort.
10thAugust
Well I’ve had the second round and as predicted the tiredness has increased. Everything else is pretty much the same. I am doing a bit more but there is nothing I like better than to just sit in the chair and dose and meditate. I have continued to find Caroline Jones’ book ‘An Authentic Life’ a valuable stimulus to my meditating and thinking and in just seeing some of the strands of my life come together. Apart from the tiredness I do feel quite good. I’m not sure whether this is the effect of the anti-depressive or the treatment; perhaps a mixture of both. The donor site on my leg is still not healed but it is getting better and hopefully another week will see it right. The other thing that is still affected is the scar tissue from the original operation last November. Each treatment it gets tighter so that I now feel that I have a permanent brace on my left shoulder. Oh and I’ve nearly lost all my hair. All of this is just minor and so far I feel lucky to have missed some of the worst side effects.
Clare and I have started to attend six poetry classes on a Tuesday morning. These are conducted by a 76year old nun who in spite of a gammy leg and the fact that she gets round in a motorised wheelchair bounces around the room in her excitement with poetry and is so obviously loving what she is doing that she is a joy to be with. On the first day she has us chanting poetry in a round of four with her conducting from the front and then giving us a stir up for not doing it well enough. She then had us chanting a poem that got faster and faster as we went through. It was all good fun and by the end of it we were all thoroughly warmed up and engaged.
The three poets she is focusing on during the course of the six lectures are Seamus Heaney, Gerard Manley Hopkins and a New Zealand poet called Michael Harlow. She focused initially on Seamus Heaney and it was wonderful for me to really get in to some of his poetry. I have always quite liked him but never really understood some of his writing. In the first poem called “Digging” I just really began to understand some of the connections he made between himself, his father and his Grandfather. They both dug peat but he was choosing to do his digging, not with a peat shovel, but with the pen. Enough perhaps. Another poem
The Chair
Each day he sits in
the chair
a big soft body
that wraps him
in its arms and holds him
warm and alive.
Often here he meditates
and leaves behind
any small troubles
that might distract him
from being with himself.
Such reflection leads him
to many strange places;
a dark dirty coal shed
last seen at six years
a coal box with
low sliding exit hole.
His grandson whom
he has not yet seen
but who already has
an established place
in his identity.
And his son who
wrote a poem
anointing the moment
he became a man
with him
and the amber glow
which surrounded his manhood.
The chair
invites the stillness
that peels back
layers of memory.
In the chair
he finds God.
Mike Consedine
5th August 2007
To My Friends 8
01 July 2007
Sunday 1st
July 2007
The difficulty now is not that there is nothing to write about but rather that my lack of energy and motivation to do almost anything is a real nuisance. The operation I mentioned in my last writing went ahead and from the point of view of skin grafts etc was a success with pretty good healing and very little pain. However the surgeon did not get all the cancer and what we had thought was a squamous cell carcinoma turned out to be a merkell cell. So the news is that I am really in palliative care with possibly a few months to live.
Life is a funny old trip. Just when I’m starting to get used to that idea We go to see the oncologist. He agrees that we are in the home straight but suggests that there is a possibility of chemotherapy which would not cure the cancer but would probably reduce the size of the tumours a little thus giving me a little extra time. So I am to have another scan and then Julie and I will go to see a medical oncologist, probably in a fortnight or so, who will decide if and when. The general consensus is that chemotherapy will be offered. The option is still open to refuse it but so far we are keeping all possibilities open. It really is a bit of a roller coaster.
In the midst of all this my mental state is variable. The nights can be horrendous, particularly if I am unable to sleep. Most nights I get some sleep but am awake by 4 – 4.30 in the morning. Then my lifelong neurosis cuts in and I start to get anxious about everything. Eg keeping the garden in trim, worrying whether the water feature will keep going, paying small accounts (I’m not short of money) how are the kids going to manage and so on. This is compounded by the fact that just when I get my mind on to something that doesn’t matter and start to drift off my dry mouth cuts in and I begin to cough or have to sit up and take a drink. By 8am I can be a real mess and I just want to hide under the blankets.
I get up and go to the lounge and settle into a chair to meditate. This works really well and I go to sleep quite quickly. The trouble is that I then want to keep on sleeping for the rest of the day. Waking from this dreamless sleep is a painful and I find myself just wanting to drop off again. To get up and do something other than just sit requires a very large effort. My body is very battered and I am by no means over the radiation therapy. That is part of the difficulty and I often wonder if I use that as an excuse to sit for far longer than is good for me or anybody else. I am depressed to some extent, I don’t doubt that, and I assure you that for some part of each day, mornings usually, I feel terrible. Later in the day I start to come better and by early evening I have a lot more energy to interact with people or to face my computer.
In spite of all this the days are very full. Several times a week we have to visit doctors, nurses and other specialists. Blood tests and scans are also part of the mix. Along with this a constant stream of friends ring asking if they can visit and of course we want to see them. Many of our friends come round, spend a little time with me and then take Julie out for coffee, or a movie. This is just fantastic. Jules needs a break from me and my constant need for attention of one sort or another.
Eating is another difficulty since the most recent bout of surgery. Foods that I had become used to again now taste terrible. But in this respect I am extraordinarily lucky. Almost every day from amongst out friends and relatives here is a steady stream of cooked meals. Casseroles, stews, hotpots, soups, puddings and cakes. Julie and I are very very grateful to all the people who bring us this food. It just makes things so much easier. And this food is invariably absolutely delicious.
Managing my spiritual life is not easy. Over the years I have moved away from my childhood beliefs. This I have done usually with the help of a fairly trite reason so that I was able to let go of many things that I thought were irrelevant. The trouble is that I did not replace them with anything that is now useful. My brother says that like so many Catholics of my era I threw out the baby with the bathwater. Nonetheless I still count myself as an active and developing spiritual person. The real problem seems to be that at a time when I need comfort I no longer have a personal God. I discovered very quickly that you cannot go back to old beliefs just because they make you feel comfortable but you can go to old practices, prayers and hymns bringing a different meaning. Gradually something new is emerging.
When I look over what I have written I see that I have focused on the difficult aspects but really life is not too bad at this point in time. I feel a lot better now than I did a couple of days ago, I’m enjoying things in my life that I had forgotten about, I’m surrounded by friends and relatives every day and I don’t feel depressed any more and Julie and I have put together another small book of poetry largely about my experiences in radiation therapy In fact right at this point I have difficulty in realizing that I may have only a few months to live. Life’s a funny old business isn’t it?
Pride
Thank you for those gifts
that have been given to me
they were not earned but
freely given for my use.
As the psalmist says
“A man can lay claim only to
what is given him from heaven”.
Gifts of words
have been given to me
that I may use them wisely
always to enliven.
Yet I sit here knowing
that sometimes I have
used this gift poorly.
For this I seek forgiveness
and a greater appreciation
of my own frailties.
Humility is learned slowly;
Pride is freely available
and if that could make me rich
I would be wealthy indeed.
Even as I write these words
I pridefully strive
to make them perfect.
Humility may yet take longer.
20th June 2007
The difficulty now is not that there is nothing to write about but rather that my lack of energy and motivation to do almost anything is a real nuisance. The operation I mentioned in my last writing went ahead and from the point of view of skin grafts etc was a success with pretty good healing and very little pain. However the surgeon did not get all the cancer and what we had thought was a squamous cell carcinoma turned out to be a merkell cell. So the news is that I am really in palliative care with possibly a few months to live.
Life is a funny old trip. Just when I’m starting to get used to that idea We go to see the oncologist. He agrees that we are in the home straight but suggests that there is a possibility of chemotherapy which would not cure the cancer but would probably reduce the size of the tumours a little thus giving me a little extra time. So I am to have another scan and then Julie and I will go to see a medical oncologist, probably in a fortnight or so, who will decide if and when. The general consensus is that chemotherapy will be offered. The option is still open to refuse it but so far we are keeping all possibilities open. It really is a bit of a roller coaster.
In the midst of all this my mental state is variable. The nights can be horrendous, particularly if I am unable to sleep. Most nights I get some sleep but am awake by 4 – 4.30 in the morning. Then my lifelong neurosis cuts in and I start to get anxious about everything. Eg keeping the garden in trim, worrying whether the water feature will keep going, paying small accounts (I’m not short of money) how are the kids going to manage and so on. This is compounded by the fact that just when I get my mind on to something that doesn’t matter and start to drift off my dry mouth cuts in and I begin to cough or have to sit up and take a drink. By 8am I can be a real mess and I just want to hide under the blankets.
I get up and go to the lounge and settle into a chair to meditate. This works really well and I go to sleep quite quickly. The trouble is that I then want to keep on sleeping for the rest of the day. Waking from this dreamless sleep is a painful and I find myself just wanting to drop off again. To get up and do something other than just sit requires a very large effort. My body is very battered and I am by no means over the radiation therapy. That is part of the difficulty and I often wonder if I use that as an excuse to sit for far longer than is good for me or anybody else. I am depressed to some extent, I don’t doubt that, and I assure you that for some part of each day, mornings usually, I feel terrible. Later in the day I start to come better and by early evening I have a lot more energy to interact with people or to face my computer.
In spite of all this the days are very full. Several times a week we have to visit doctors, nurses and other specialists. Blood tests and scans are also part of the mix. Along with this a constant stream of friends ring asking if they can visit and of course we want to see them. Many of our friends come round, spend a little time with me and then take Julie out for coffee, or a movie. This is just fantastic. Jules needs a break from me and my constant need for attention of one sort or another.
Eating is another difficulty since the most recent bout of surgery. Foods that I had become used to again now taste terrible. But in this respect I am extraordinarily lucky. Almost every day from amongst out friends and relatives here is a steady stream of cooked meals. Casseroles, stews, hotpots, soups, puddings and cakes. Julie and I are very very grateful to all the people who bring us this food. It just makes things so much easier. And this food is invariably absolutely delicious.
Managing my spiritual life is not easy. Over the years I have moved away from my childhood beliefs. This I have done usually with the help of a fairly trite reason so that I was able to let go of many things that I thought were irrelevant. The trouble is that I did not replace them with anything that is now useful. My brother says that like so many Catholics of my era I threw out the baby with the bathwater. Nonetheless I still count myself as an active and developing spiritual person. The real problem seems to be that at a time when I need comfort I no longer have a personal God. I discovered very quickly that you cannot go back to old beliefs just because they make you feel comfortable but you can go to old practices, prayers and hymns bringing a different meaning. Gradually something new is emerging.
When I look over what I have written I see that I have focused on the difficult aspects but really life is not too bad at this point in time. I feel a lot better now than I did a couple of days ago, I’m enjoying things in my life that I had forgotten about, I’m surrounded by friends and relatives every day and I don’t feel depressed any more and Julie and I have put together another small book of poetry largely about my experiences in radiation therapy In fact right at this point I have difficulty in realizing that I may have only a few months to live. Life’s a funny old business isn’t it?
Pride
Thank you for those gifts
that have been given to me
they were not earned but
freely given for my use.
As the psalmist says
“A man can lay claim only to
what is given him from heaven”.
Gifts of words
have been given to me
that I may use them wisely
always to enliven.
Yet I sit here knowing
that sometimes I have
used this gift poorly.
For this I seek forgiveness
and a greater appreciation
of my own frailties.
Humility is learned slowly;
Pride is freely available
and if that could make me rich
I would be wealthy indeed.
Even as I write these words
I pridefully strive
to make them perfect.
Humility may yet take longer.
20th June 2007
the outcome of surgery
23 June 2007
23 June 2007
From Rob: Not having heard from Mike since his surgery last week,
I messaged Julie this morning to see how they are going.
She was very welcoming. The news isn't so good.
Here is an edited copy of the essentials
Robert Brodie 23/06/07 9:49
Hi Julie. Havent managed to get a reply from Mike
even though he appears to be online,
so hope you dont mind me messaging you.
Julie Mernick 23/06/07 9:53
Hi Rob,
Mike isn't on his computer much at the moment
He is not in good shape currently...
The cancer was not successfully removed in surgery...
and it has also spread
so I think we are now looking at palliative care
We are seeing the oncologist on Wed
to see what the options are
but i suspect there will be no further treatment
...
Mike is happy for you to put a note up.
Bye for now
From Rob: Not having heard from Mike since his surgery last week,
I messaged Julie this morning to see how they are going.
She was very welcoming. The news isn't so good.
Here is an edited copy of the essentials
Robert Brodie 23/06/07 9:49
Hi Julie. Havent managed to get a reply from Mike
even though he appears to be online,
so hope you dont mind me messaging you.
Julie Mernick 23/06/07 9:53
Hi Rob,
Mike isn't on his computer much at the moment
He is not in good shape currently...
The cancer was not successfully removed in surgery...
and it has also spread
so I think we are now looking at palliative care
We are seeing the oncologist on Wed
to see what the options are
but i suspect there will be no further treatment
...
Mike is happy for you to put a note up.
Bye for now
To My Friends 7
12 June 2007
12th June 2007
For me it is always difficult to write when I’m feeling low. And I am feeling low at the moment. To put it bluntly, over the last couple of weeks what had been a solar keritosis on the left side of my head has deteriorated and become a squamous cell carcinoma which is growing quite fast. Furthermore, two more small lumps have appeared on my head and they also are growing quite quickly. One is in the left eyebrow and the other on top of my head. It is likely in my opinion that these will turn out to be merckel cell which is not so good since this is an aggressive form of cancer which responds best to radiotherapy and this is no longer an option. The net result of all this is that I am to have more surgery on Thursday (14th June) which will remove all of these and cover the surgery with one small and one large skin graft. I assure you I am not looking forward to it. I am by no means recovered from the radiotherapy yet so its all coming thick and fast.
As I mentioned above I am a bit low, depressed is probably the right word. This is partly caused by the tiredness that is part of the recovery from extensive radiotherapy and partly I think because the future is so uncertain. I have had to give up all my work in the meantime and so I am now getting focused on the things I need to do as my life deteriorates and, dare I say it is, probably drawing to a close. This is not to say that I will not be giving it all I’ve got, but the reality is that with immunosuppression I have very little to fight with. The truth of the matter is that if I was not immunosuppressed these things would probably not have developed in the first place. And yet without the immunosupression that goes with the kidney transplant I would probably be well dead by now or living a miserable existence on a dialysis machine somewhere.
The kidney transplant gave me five fantastic years which included travel in Europe and elsewhere and Julie who has been a wonderful wife, companion, lover and friend. I have also been able to strongly develop a system of supervision using role theory and the play of life which is now practised in many places throughout New Zealand and Australia. There are also people now trained to carry on the work. My major regret is that I have not written more although it seems to me that I needed to teach and practise in order to continue the development. My intention had been to write over the next few years as I withdrew more from the work. Who knows, it may still be possible.
In the meantime there is another small presence in my life. Two days ago I became a grandfather for the first time. Nathan, my eldest son and his wife Yulia produced a baby boy. They live in New York and having a baby there seems very different there than it is in New Zealand. Nathan says the level of expertise amongst the midwives was fantastic Yulia was booked into a birthing centre for 18 hours initially. That’s the norm. Yulia in fact took 36 hours but the baby is fine. He looks fantastic of course to this grandfather and Clare assures me that he looks exactly like Nathan when he was born. I personally think he looks like me.
The muse has deserted me at the moment and has been replaced by the God of fear and Anxiety, I think not so much about the surgery as about the recovery. I will lose the comfort of my CPAP machine for a while since I won’t be able to put the mask on properly and this is more of a nuisance than it might otherwise be since the humidifier in the machine tended to help with my very dry mouth – a result of the previous surgery and radiation therapy. So the dry mouth may prove difficult since it tends to wake me when it gets to a certain point which it does every hour or so. I also expect normal functioning, getting in and out of bed, toilet etc will be difficult since there is a large graft to come off my left leg. Time will tell whether my imagination is just running away from me or not. I expect to be in hospital for 3 -4 days and then home to be nursed by Julie.
Which reminds me Julie and I recently had the privilege of a week at Trinity Beach, north of Cairns. It was great to be there in the warmth in an apartment overlooking the sea. We could watch the sun rise from the ocean in the mornings, go for a walk on the beach and have a swim in the sea by 8am. The rest of the day we could just lounge around, sit by the pool or explore the nearby rainforest. It was truly a restful time and much needed. For me it was spoilt a little by my developing anxiety around what was developing on my head nonetheless, it was well worth the effort. On the way up we had two days in Sydney catching up with the people I have been training so that was also good.
Enough for now. I will write again when I have begun to recover from the surgery. There is no poetry now, only Thursday.
For me it is always difficult to write when I’m feeling low. And I am feeling low at the moment. To put it bluntly, over the last couple of weeks what had been a solar keritosis on the left side of my head has deteriorated and become a squamous cell carcinoma which is growing quite fast. Furthermore, two more small lumps have appeared on my head and they also are growing quite quickly. One is in the left eyebrow and the other on top of my head. It is likely in my opinion that these will turn out to be merckel cell which is not so good since this is an aggressive form of cancer which responds best to radiotherapy and this is no longer an option. The net result of all this is that I am to have more surgery on Thursday (14th June) which will remove all of these and cover the surgery with one small and one large skin graft. I assure you I am not looking forward to it. I am by no means recovered from the radiotherapy yet so its all coming thick and fast.
As I mentioned above I am a bit low, depressed is probably the right word. This is partly caused by the tiredness that is part of the recovery from extensive radiotherapy and partly I think because the future is so uncertain. I have had to give up all my work in the meantime and so I am now getting focused on the things I need to do as my life deteriorates and, dare I say it is, probably drawing to a close. This is not to say that I will not be giving it all I’ve got, but the reality is that with immunosuppression I have very little to fight with. The truth of the matter is that if I was not immunosuppressed these things would probably not have developed in the first place. And yet without the immunosupression that goes with the kidney transplant I would probably be well dead by now or living a miserable existence on a dialysis machine somewhere.
The kidney transplant gave me five fantastic years which included travel in Europe and elsewhere and Julie who has been a wonderful wife, companion, lover and friend. I have also been able to strongly develop a system of supervision using role theory and the play of life which is now practised in many places throughout New Zealand and Australia. There are also people now trained to carry on the work. My major regret is that I have not written more although it seems to me that I needed to teach and practise in order to continue the development. My intention had been to write over the next few years as I withdrew more from the work. Who knows, it may still be possible.
In the meantime there is another small presence in my life. Two days ago I became a grandfather for the first time. Nathan, my eldest son and his wife Yulia produced a baby boy. They live in New York and having a baby there seems very different there than it is in New Zealand. Nathan says the level of expertise amongst the midwives was fantastic Yulia was booked into a birthing centre for 18 hours initially. That’s the norm. Yulia in fact took 36 hours but the baby is fine. He looks fantastic of course to this grandfather and Clare assures me that he looks exactly like Nathan when he was born. I personally think he looks like me.
The muse has deserted me at the moment and has been replaced by the God of fear and Anxiety, I think not so much about the surgery as about the recovery. I will lose the comfort of my CPAP machine for a while since I won’t be able to put the mask on properly and this is more of a nuisance than it might otherwise be since the humidifier in the machine tended to help with my very dry mouth – a result of the previous surgery and radiation therapy. So the dry mouth may prove difficult since it tends to wake me when it gets to a certain point which it does every hour or so. I also expect normal functioning, getting in and out of bed, toilet etc will be difficult since there is a large graft to come off my left leg. Time will tell whether my imagination is just running away from me or not. I expect to be in hospital for 3 -4 days and then home to be nursed by Julie.
Which reminds me Julie and I recently had the privilege of a week at Trinity Beach, north of Cairns. It was great to be there in the warmth in an apartment overlooking the sea. We could watch the sun rise from the ocean in the mornings, go for a walk on the beach and have a swim in the sea by 8am. The rest of the day we could just lounge around, sit by the pool or explore the nearby rainforest. It was truly a restful time and much needed. For me it was spoilt a little by my developing anxiety around what was developing on my head nonetheless, it was well worth the effort. On the way up we had two days in Sydney catching up with the people I have been training so that was also good.
Enough for now. I will write again when I have begun to recover from the surgery. There is no poetry now, only Thursday.
To My Friends 7
18 May 2007
18th
May 2007
Sorry its taken so long for me to get back on line. Its hard to know what to write and where to start. Not that there isn’t a fair bit to write about but how to describe it and keep it contained into a coherent expression is troublesome. My recovery is simply not as straight forward as I thought it would be. Once the radiation therapy had finished and the little diversion of Easter had passed I expected a slow but steady progress such that my energy and my appetite would increase and I would generally feel better as I increased the amount of work I was able to take on. Well it hasn’t been quite like that.
Physically there have been ups and downs. The effects of the radiation on top of the surgery on my head neck and shoulder has significantly increased the amount of scar tissue. On my shoulder and neck I feel as if I am wearing a sharp tight collar. Its not painful but its like a weight that won’t go away and I am reminded of it every time I move my head. I’ve also developed shingles and several other “patches of funny skin” which always cause me to wonder, “what now?” Perhaps the most worrysome thing is a patch of unstable skin on my scalp above the left ear. This is about 3 inches by two and is variously described by the doctors as ‘actinic keritosis’ or basal cell carcinoma. It is said to be ‘in situ’ and therefore unlikely to spread in the immediate but is also described, more ominously as pre carcinogenic. My surgeon has tried all the regular treatments over the years but without lasting success. Recently she suggested radiation as an alternative to surgery and a skin graft but the oncologist rejected this on the basis that it would involve some radiation on skin that has already been irradiated and this would probably prevent healing leaving an open wound.
One other possibility is another very expensive ointment called Aldara. The trouble is that this is contraindicated where the immune system is compromised which of course mine is. So it seems as if I will be back under the knife some time. Probably have a piece of my bum grafted on to my head. This will confirm all the worst fears of those who say I talk a lot of shit anyway.
Really I am a bit depressed. I suspect that this may well be part of the healing journey anyway. It is pretty boring spending a significant part of each day just doing the things that will keep you alive. Taking pills, looking after your teeth, not that I’ve got many left, exercising, both the whole body and the neck and shoulder, and preparing meals. And this is a real shit because still nothing tastes right. It’s a funny business. Often the taste is there but the texture of the food is all wrong. So I spend a lot of time preparing food that I don’t really want to eat. Recently I’ve been finding fresh fish dreadful and I used to love it.
Alcohol is also a sorry story. Those of you who have had a drink with me over the years will know how I treasured a single malt. I have been known to state emphatically that there’s only one thing to put with good whisky and that’s more good whisky. Well I have to ‘fess up. The inside of my mouth simply will not tolerate anything more than vaguely alcoholic. In my desperation to taste the ‘blessed liquor’ I have been reduced to watering it down by about 3 to 1. The shame is indescribable. I have had to remove my name from the whisky Shop’s list of desirable customers. I hang my head when I walk past the shop door. I mumble and more away from the hearty greetings of former scotch loving fellow travellers. In short I am much reduced.
Any spare time that appears in the day, time when I might do something to maintain the house or the garden is spent sleeping. If I sit down for longer than about 10 minutes I fall asleep and even when I wake perhaps only a few minutes later I still feel tired and lack any motivation to get out of the chair or to tackle anything that requires real effort either physical or mental. I don’t really know how to describe the state of being half alive yet often that is how I feel. Just struggling a bit I think. And in the middle of this I still manage to write up some of the sessions I conduct and often develop some pretty good ideas for teaching sessions. So all is not lost.
Next week Julie and I are going to Sydney for a couple of days and then up to Trinity beach just south of Cairns for a week. We are both looking forward to this a lot. We have had good email discussions with the proprietors of the motel in which we are to stay. Their name is Costello, so that’s a good sign and suggests that they may have a touch of the old Irish in their ancestry somewhere. That should help. Meantime I’ve managed to contact the Muse and turn out one small offering.
Autumn
Still so still
the earth it seems
can hardly bear to breathe.
Yellow and brown leaves
in the final stages of life
cannot find the energy
to drop: instead they sit
waiting, waiting
not yet ready to let go
still so still.
An old man in a chair
sits head upon chest
parchment brown skin
awake yet barely alive
only the eyes move
in response to my greeting:
the heart beats; silent
and life persists into the winter
while the eyes say
movement is relative.
17th May 2007
I’ll write some more soon.
Sorry its taken so long for me to get back on line. Its hard to know what to write and where to start. Not that there isn’t a fair bit to write about but how to describe it and keep it contained into a coherent expression is troublesome. My recovery is simply not as straight forward as I thought it would be. Once the radiation therapy had finished and the little diversion of Easter had passed I expected a slow but steady progress such that my energy and my appetite would increase and I would generally feel better as I increased the amount of work I was able to take on. Well it hasn’t been quite like that.
Physically there have been ups and downs. The effects of the radiation on top of the surgery on my head neck and shoulder has significantly increased the amount of scar tissue. On my shoulder and neck I feel as if I am wearing a sharp tight collar. Its not painful but its like a weight that won’t go away and I am reminded of it every time I move my head. I’ve also developed shingles and several other “patches of funny skin” which always cause me to wonder, “what now?” Perhaps the most worrysome thing is a patch of unstable skin on my scalp above the left ear. This is about 3 inches by two and is variously described by the doctors as ‘actinic keritosis’ or basal cell carcinoma. It is said to be ‘in situ’ and therefore unlikely to spread in the immediate but is also described, more ominously as pre carcinogenic. My surgeon has tried all the regular treatments over the years but without lasting success. Recently she suggested radiation as an alternative to surgery and a skin graft but the oncologist rejected this on the basis that it would involve some radiation on skin that has already been irradiated and this would probably prevent healing leaving an open wound.
One other possibility is another very expensive ointment called Aldara. The trouble is that this is contraindicated where the immune system is compromised which of course mine is. So it seems as if I will be back under the knife some time. Probably have a piece of my bum grafted on to my head. This will confirm all the worst fears of those who say I talk a lot of shit anyway.
Really I am a bit depressed. I suspect that this may well be part of the healing journey anyway. It is pretty boring spending a significant part of each day just doing the things that will keep you alive. Taking pills, looking after your teeth, not that I’ve got many left, exercising, both the whole body and the neck and shoulder, and preparing meals. And this is a real shit because still nothing tastes right. It’s a funny business. Often the taste is there but the texture of the food is all wrong. So I spend a lot of time preparing food that I don’t really want to eat. Recently I’ve been finding fresh fish dreadful and I used to love it.
Alcohol is also a sorry story. Those of you who have had a drink with me over the years will know how I treasured a single malt. I have been known to state emphatically that there’s only one thing to put with good whisky and that’s more good whisky. Well I have to ‘fess up. The inside of my mouth simply will not tolerate anything more than vaguely alcoholic. In my desperation to taste the ‘blessed liquor’ I have been reduced to watering it down by about 3 to 1. The shame is indescribable. I have had to remove my name from the whisky Shop’s list of desirable customers. I hang my head when I walk past the shop door. I mumble and more away from the hearty greetings of former scotch loving fellow travellers. In short I am much reduced.
Any spare time that appears in the day, time when I might do something to maintain the house or the garden is spent sleeping. If I sit down for longer than about 10 minutes I fall asleep and even when I wake perhaps only a few minutes later I still feel tired and lack any motivation to get out of the chair or to tackle anything that requires real effort either physical or mental. I don’t really know how to describe the state of being half alive yet often that is how I feel. Just struggling a bit I think. And in the middle of this I still manage to write up some of the sessions I conduct and often develop some pretty good ideas for teaching sessions. So all is not lost.
Next week Julie and I are going to Sydney for a couple of days and then up to Trinity beach just south of Cairns for a week. We are both looking forward to this a lot. We have had good email discussions with the proprietors of the motel in which we are to stay. Their name is Costello, so that’s a good sign and suggests that they may have a touch of the old Irish in their ancestry somewhere. That should help. Meantime I’ve managed to contact the Muse and turn out one small offering.
Autumn
Still so still
the earth it seems
can hardly bear to breathe.
Yellow and brown leaves
in the final stages of life
cannot find the energy
to drop: instead they sit
waiting, waiting
not yet ready to let go
still so still.
An old man in a chair
sits head upon chest
parchment brown skin
awake yet barely alive
only the eyes move
in response to my greeting:
the heart beats; silent
and life persists into the winter
while the eyes say
movement is relative.
17th May 2007
I’ll write some more soon.
To My Friends 6
13 April 2007
13th
April 2007
Well as predicted the symptoms have begun to get a little less acute. There is less difficulty in swallowing, and I’ve managed to wean myself of all pain relief. The major difficulty now is the extreme lethargy that I feel almost 24 hours a day. It’s a funny thing, hard to describe. Although I do occasionally drop off for a few minutes sleep it is not a relaxing tiredness. If it was depression I’d call it an agitated depression. That is I am tired but agitated and restless at the same time. The only real relief is going for a walk and then after about 20 minutes my limbs feel as if they want to collapse.
It’s quite cold here today and I’ve just thought that the answer might just be to refill the spa pool and heat it. I can imagine that would help as it did a few years ago when I was on dialysis and had restless legs. I’ll do it. I can hardly believe that in a couple of days the temperature drops over 20 degrees.
Had an unexpected sort of Easter. On the Tuesday before Easter I had a small scc (squamous cell carcinoma) removed from my right shoulder. Nothing new or difficult here except that for some reason or other the wound developed an infection. By Friday morning I was in agony so we rang the surgeon who came round and promptly determined that I should be in hospital. She even arranged for me to be in the kidney ward (rather than her ward, plastic surgery) and for me to go directly on to I/V antibiotics.
So Julie and I boogyed on down expecting to go straight into the ward and onto the antibiotics. In the words of the immortal Darryl Kerrigan in ‘The Castle’ “tell him he’s dreamin’” At the hospital we were escorted to one of the holding pens in the emergency department where we were completely ignored for an hour and then interviewed intermittently for about two hours by a young asian house surgeon who seemed determined to ascertain that my main problem was that I couldn’t tolerate the antibiotic taken orally. My assurances that I had had this particular antibiotic many times before and that I had been taking it all the week anyway did not seem to impress. Eventually she said I’ve talked with my consultant and I think we’ll have to admit you. She was truly lucky to survive that one given that the admission had been arranged by the consultants 5 hours earlier. I never saw her again during my four day stay which was probably a good thing.
The next little drama occurred on Easter Sunday morning at 6am when a nurse came in and told me I had to get up and be weighed. Here I am, having had a little morphine to help me sleep, in the full glory of the resurrection, brought back down to earth at 6am to be weighed. I’m sure even the risen Christ would have had something to say about the
Anyway, the I/V antibiotics did the trick and on Monday, after another run in with the nursing staff over their inability to distinguish a sterile field from a non sterile one, I was discharged home again with a sigh of relief all round I expect. It does disturb me though that nursing staff are so under pressure that they are only able to do things by the numbers rather than bring some ordinary common sense or clear thinking to the various situations they encounter day by day and doctors in training are not much better. It seems that in the face of a total lack of interest in any creativity or innovation staff lose interest and morale slips to the point where nothing much matters except survival. The whole public health system in New Zealand is grossly underfunded and while Helen Clarke is swanning off to discuss futures which will never happen in the White House with the Cowboy who runs that outfit people in New Zealand are being short changed in all areas of social service so that government can show a surplus, whatever that it.
There! I’ve had my little rave. I knew I’d get it in somewhere. Over the last week I’ve made the time to read the articles in our latest ANZPA Journal. I must say I’ve found them both enlightening and enlivening. It wasn’t that I found the ideas wonderfully new but I was inspired by the ways in which psychodramatists are taking what we have learned and extending it in all directions reminding us again of the riches we have inherited and the amazing creativity that emerges when we are able to think about the world in these terms. Just simple ideas such as doubling and mirroring, how amazing are they as we seek to intervene in people’s narratives in ways that often bring about really exciting understandings and the possibility of lasting change so that the social atom is not recreated endlessly. Its terrific! Thank you Rollo for editing a really good edition of our Journal.
Just so you’ll know I haven’t totally lost touch with the muse I’ll include a couple of recent poems for your edification.
Seeking Beauty
In a time of suffering
it is difficult
to experience beauty in the world;
energy is focussed on
the maintenance of life.
Embracing ones suffering
is sometimes
the only possibility
yet somehow
one must experience
the possibility of that
which is beyond suffering.
The doctor arrives
she discusses the need
to stop infection spreading;
she pulls no punches yet
remains warm and positive
listening, smiling softly,
smiling with everything she is;
her eyes smiling
full of possibility;
here again is
the beauty in the world
8th April 2007
Dancers
Orange flowers dominate
the vine clinging closely
to the old pergola;
they reach out
dancing gently in
the light breeze as
the sun welcomes
their voluptuous ballet.
Each year
the virgins offer themselves
to the God dancing
their most provocative dance
their long tresses
barely containing
their beauty as
they dance toward
that exhaustion that
allows only one release.
Then spent
they withdraw
to give birth
so that the God
is always served.
7th April 2007
So there we are. Next time I hope to be reporting a very large increase in energy and an increasing desire to drink single malts.
Well as predicted the symptoms have begun to get a little less acute. There is less difficulty in swallowing, and I’ve managed to wean myself of all pain relief. The major difficulty now is the extreme lethargy that I feel almost 24 hours a day. It’s a funny thing, hard to describe. Although I do occasionally drop off for a few minutes sleep it is not a relaxing tiredness. If it was depression I’d call it an agitated depression. That is I am tired but agitated and restless at the same time. The only real relief is going for a walk and then after about 20 minutes my limbs feel as if they want to collapse.
It’s quite cold here today and I’ve just thought that the answer might just be to refill the spa pool and heat it. I can imagine that would help as it did a few years ago when I was on dialysis and had restless legs. I’ll do it. I can hardly believe that in a couple of days the temperature drops over 20 degrees.
Had an unexpected sort of Easter. On the Tuesday before Easter I had a small scc (squamous cell carcinoma) removed from my right shoulder. Nothing new or difficult here except that for some reason or other the wound developed an infection. By Friday morning I was in agony so we rang the surgeon who came round and promptly determined that I should be in hospital. She even arranged for me to be in the kidney ward (rather than her ward, plastic surgery) and for me to go directly on to I/V antibiotics.
So Julie and I boogyed on down expecting to go straight into the ward and onto the antibiotics. In the words of the immortal Darryl Kerrigan in ‘The Castle’ “tell him he’s dreamin’” At the hospital we were escorted to one of the holding pens in the emergency department where we were completely ignored for an hour and then interviewed intermittently for about two hours by a young asian house surgeon who seemed determined to ascertain that my main problem was that I couldn’t tolerate the antibiotic taken orally. My assurances that I had had this particular antibiotic many times before and that I had been taking it all the week anyway did not seem to impress. Eventually she said I’ve talked with my consultant and I think we’ll have to admit you. She was truly lucky to survive that one given that the admission had been arranged by the consultants 5 hours earlier. I never saw her again during my four day stay which was probably a good thing.
The next little drama occurred on Easter Sunday morning at 6am when a nurse came in and told me I had to get up and be weighed. Here I am, having had a little morphine to help me sleep, in the full glory of the resurrection, brought back down to earth at 6am to be weighed. I’m sure even the risen Christ would have had something to say about the
Anyway, the I/V antibiotics did the trick and on Monday, after another run in with the nursing staff over their inability to distinguish a sterile field from a non sterile one, I was discharged home again with a sigh of relief all round I expect. It does disturb me though that nursing staff are so under pressure that they are only able to do things by the numbers rather than bring some ordinary common sense or clear thinking to the various situations they encounter day by day and doctors in training are not much better. It seems that in the face of a total lack of interest in any creativity or innovation staff lose interest and morale slips to the point where nothing much matters except survival. The whole public health system in New Zealand is grossly underfunded and while Helen Clarke is swanning off to discuss futures which will never happen in the White House with the Cowboy who runs that outfit people in New Zealand are being short changed in all areas of social service so that government can show a surplus, whatever that it.
There! I’ve had my little rave. I knew I’d get it in somewhere. Over the last week I’ve made the time to read the articles in our latest ANZPA Journal. I must say I’ve found them both enlightening and enlivening. It wasn’t that I found the ideas wonderfully new but I was inspired by the ways in which psychodramatists are taking what we have learned and extending it in all directions reminding us again of the riches we have inherited and the amazing creativity that emerges when we are able to think about the world in these terms. Just simple ideas such as doubling and mirroring, how amazing are they as we seek to intervene in people’s narratives in ways that often bring about really exciting understandings and the possibility of lasting change so that the social atom is not recreated endlessly. Its terrific! Thank you Rollo for editing a really good edition of our Journal.
Just so you’ll know I haven’t totally lost touch with the muse I’ll include a couple of recent poems for your edification.
Seeking Beauty
In a time of suffering
it is difficult
to experience beauty in the world;
energy is focussed on
the maintenance of life.
Embracing ones suffering
is sometimes
the only possibility
yet somehow
one must experience
the possibility of that
which is beyond suffering.
The doctor arrives
she discusses the need
to stop infection spreading;
she pulls no punches yet
remains warm and positive
listening, smiling softly,
smiling with everything she is;
her eyes smiling
full of possibility;
here again is
the beauty in the world
8th April 2007
Dancers
Orange flowers dominate
the vine clinging closely
to the old pergola;
they reach out
dancing gently in
the light breeze as
the sun welcomes
their voluptuous ballet.
Each year
the virgins offer themselves
to the God dancing
their most provocative dance
their long tresses
barely containing
their beauty as
they dance toward
that exhaustion that
allows only one release.
Then spent
they withdraw
to give birth
so that the God
is always served.
7th April 2007
So there we are. Next time I hope to be reporting a very large increase in energy and an increasing desire to drink single malts.
To My Friends 5
25 March 2007
20th March
2007
Well
today’s the first day since late January that I haven’t
had a treatment and in fact there are no more. I got down off the
table, toothless and shirtless and did a little irish dance round
the treatment room. Julie then took a couple of photographs of me
with the treatment team. One with the mask on and one with the mask
off. The next ten days will be tough as the symptoms, mouth full of
ulcers, nose bleeds, constipation, weight loss, lack of appetite,
constant nausea etc., continue to develop but I’m sure
I’ll get there.
Not so sure about Julie. (Joke) It is tough on her.
Putting up with me at the best of times isn’t easy and now
I’m just plain terrible. She told me yesterday that I’m
getting more like Father Jack, from the TV series Father Ted, every
day. I told her I was his role model and I am continuing to develop
the role. There’s something very satisfying sitting there
with your teeth out, and dressed only in an old singlet screaming
out Feck! Or Feck off! Or Girls! or Arse! or Drink! Many people
have said that Robert, my brother, looks like Fr. Ted so we should
soon be able to recreate the series. I can see my sister Marie as
Mrs Doyle but I’m not sure that even in a family as
dysfunctional as ours we could find someone to play
Dougal.
25th
March 2007,
As predicted the symptoms are getting worse but in a
strange way no more difficult to tolerate. It seems that when they
slowly get worse you can adapt in such a way that it doesn’t
seem as bad as you thought it might be. Anyway I’m managing
ok. Even did a few minutes gardening this afternoon. One thing that
doesn’t get easier is the discovery of new lumps on your
body. Now in a purely rational sort of way you know that the
muscles, sinews and tissues of your body, particularly in the
affected area will be changing on a regular basis. Nonetheless when
you stumble on another lump quite unexpectedly there is a shock.
Its not exactly fear although there is fear there. Its more a kind
of stumble through fear to acceptance of something you have no
control over. It’s a kind of ‘Oh God, not again’
– an emotional flip which passes quickly and you move on
until there is a proper time to deal with it.
Another aspect is coming to grips with ‘The
dying of the Hair’ At the moment it has two major aspects.
First of all I’m bloody near bald, a karmic punishment no
doubt for my continual sneering at me with no hair or who try to
demonstrate their testosterone levels by shaving their heads every
day.I detest this so much that at one stage I thought I might start
a political party called the ‘Plenty of Hair Party’.
The policy platform of this party would be the abolition of all
shaving and the return to summer dress of well groomed body hair.
What do you think?
The second major aspect is that a significant part of
my face and lips now feels like a baby’s bum. So smooth! No
more shaving! You may not know this but over the years a
substantial number of women have wanted to kiss me. They have
usually stumbled away from these encounters, bleeding and bitterly
complaining of gravel rash. I understand also that this is not an
uncommon response in the world at large. Well, I am now advertising
myself as gravel rash free territory and inviting participation in
a research project on ‘The effects of radiation therapy on
the love life of the Elderly’.
Anyway, apart from the emergence of these new and
exciting areas of research, I am still having regular walks each
day; some days half an hour and sometimes up to 75minutes.I am
often accompanied on these rambles by members of my immediate
circle of family who like to pretend that they are doing corporal
works of mercy to assist the elderly in case they stumble. Fat
chance I say. All I can think of is how the hell am I going to
carry them home if they have a heart attack. Today has been a
beautiful autumnal day and an even better evening and Clare and I
had a fantastic walk round the old Halswell Quarry. It was just
beautiful and reminded me so strongly of why I just love to be
alive. The setting sun, the trees, the shape of the quarry and the
colors, the colors.
Just a little poem to finish with
Half dead
Sometimes
he awoke
aware
only that
he
was half dead.
his
body lay
side
on
half
buried in
the
rubbish tip
his
mouth and throat
were
full of decay
seagulls
circled
awaiting
their turn
to
feast.
the
early morning light
boosted
the smell
and
the soft breeze
increased
reflected light
half
his head
was
dead
and
he did not
know
what to do
except
persevere.
23rd March 2007
To My Friends 4
16 March 2007
16th March 2007
Well here I am sitting in front of this wretched machine. I’m tired, nauseous, sore, constipated and very grumpy. Over the last week I’ve eaten practically nothing and am existing on supplementary drinks. I’ve been in Atrial fibrillation for 6 days and God be praised I slipped out of it again this morning on the back of a very big sweat which I hope heralded the end of a little infection which had me very shivery last night. I’m now on a small doses of morphine against my better judgment and it has reduced the pain a little. The upside is that I think that I must be having delusions since I spent half the night trying to write a poem in ‘atrial fibrillation and sinus rhythm’ about Taito Phillip Field (a New Zealand politician of dubious ethical standing). I couldn’t work out just what kind of rhythm atrial fibrillation was when it came to poetry.
Tomorrow is St Patrick’s Day and I’m determined to drink a pint of Guiness no matter that it takes all day. There are some things that just cannot be all allowed to pass unnoticed, some standards that must not be allowed to slip. So I shall dress in suitable garments and start early in the day. Mind you, I’m buggered if I can make out why I would want to drink Guiness. Its made with the water from the dirty old Liffy, the river on which Dublin stands.. The last time I was there it was as dirty at least as the Thames and you wouldn’t want to dip your big toe in that let alone drink it. It was filthy and with coke bottles and all others sorts of litter in it as well. Julie’s Nan, age 96, swears by the curative properties of Guiness and drinks a pint every Friday. She hasn’t yet discovered that the lovely dark color is caused by burning the malt and not by some magical ingredient and that advertising Guiness as having curative properties is forbidden by law. Nevertheless it’s a great drop.
Talking of water reminds me of something that is going on our own ‘clean green’ land. Permits and resource consents for the use of river water are allocated by local community Boards, many of whom we have recently discovered are stacked with developers and farm owners. For example on one local community Board 8 out of 12 members are developers. Anyway ou r local North Canterbury rivers are quite rapidly becoming unfishable and undrinkable. Two dairy farms in North Canterbury use more water per day than the whole of the city of Christchurch and of course it leeches the nitrogen’s from the soil in the normal way and returns them to the rivers. It’s a bloody disgrace.
These and many other facts about water in North Canterbury are detailed in a recently published book by Sam Mahon, an artist and son of the late Justice Peter Mahon, who became famous and vilified during the Erubus enquiry for stating that he had been forced to listen to “an orchestrated litany of lies” from the Airline and other officials. Anyway Sam wrote a book called “The Water Thieves” which details the goings on around the Community Boards and water. It’s a very interesting read and I think perhaps a prophetic warning. Anyway I was incensed. There’s nothing quite like this sort of chicanery to get me out of feeling miserable and into expressing myself in what for me is now the usual way in a poem So here it is.
They did not notice
He came
like a thief in the night
to take the water.
He gathered it into
his permits and
his resource consents,
he gathered it when
no-one was looking
they were too busy
with their new houses
and possessions
spending their spare time
seeking more things to buy
that they did not need.
trapped firmly
in the euphoric illusion
of eternal development
They did not notice him
gathering the water
they thought there was
an everlasting supply
but he gathered more and more.
Soon he had many
green fields and
a very big house,
its good to be rich
they said and
still they did not notice
they relied on others
and still he took the water
and still they did not notice;
they were traveling the world.
One day
a small boy
pointed to the river
why are there no fish
he asked and why does
the water taste funny?
They had no answer
and they were frightened
too late!
6th March 2007.
Enough for now I think. It’s a bit of a ramble really but it does take my mind off the misery. I have one last treatment on Monday. Then I just have to wait for a month, living pretty much as I am now. Hopefully by then I’ll be able to eat some proper food .again. Each day brings its own little challenges and demands. Its hard to describe.. One day its just the inability to clear phlegm which largely consists of blood and dead cells from my throat. Another day it may be just drinking this horrible stuff that I live on now or making the effort to go for a walk or do a little writing or answer emails etc. Its not that my body is too weak, just the mind and the overwhelming lethargy. The demands to have food, drink, mouthwashes, saltwater bathing of my skin, more pills, more fortisip and so on are relentless. I am lucky. I have so many friends who are so good to me. The group of trainers I have been working with brought me a T shit this week. It is black with my name on the front and ‘Social Atom Repairman’ on the back. So much kindness and love. Thank you all very much.
Well here I am sitting in front of this wretched machine. I’m tired, nauseous, sore, constipated and very grumpy. Over the last week I’ve eaten practically nothing and am existing on supplementary drinks. I’ve been in Atrial fibrillation for 6 days and God be praised I slipped out of it again this morning on the back of a very big sweat which I hope heralded the end of a little infection which had me very shivery last night. I’m now on a small doses of morphine against my better judgment and it has reduced the pain a little. The upside is that I think that I must be having delusions since I spent half the night trying to write a poem in ‘atrial fibrillation and sinus rhythm’ about Taito Phillip Field (a New Zealand politician of dubious ethical standing). I couldn’t work out just what kind of rhythm atrial fibrillation was when it came to poetry.
Tomorrow is St Patrick’s Day and I’m determined to drink a pint of Guiness no matter that it takes all day. There are some things that just cannot be all allowed to pass unnoticed, some standards that must not be allowed to slip. So I shall dress in suitable garments and start early in the day. Mind you, I’m buggered if I can make out why I would want to drink Guiness. Its made with the water from the dirty old Liffy, the river on which Dublin stands.. The last time I was there it was as dirty at least as the Thames and you wouldn’t want to dip your big toe in that let alone drink it. It was filthy and with coke bottles and all others sorts of litter in it as well. Julie’s Nan, age 96, swears by the curative properties of Guiness and drinks a pint every Friday. She hasn’t yet discovered that the lovely dark color is caused by burning the malt and not by some magical ingredient and that advertising Guiness as having curative properties is forbidden by law. Nevertheless it’s a great drop.
Talking of water reminds me of something that is going on our own ‘clean green’ land. Permits and resource consents for the use of river water are allocated by local community Boards, many of whom we have recently discovered are stacked with developers and farm owners. For example on one local community Board 8 out of 12 members are developers. Anyway ou r local North Canterbury rivers are quite rapidly becoming unfishable and undrinkable. Two dairy farms in North Canterbury use more water per day than the whole of the city of Christchurch and of course it leeches the nitrogen’s from the soil in the normal way and returns them to the rivers. It’s a bloody disgrace.
These and many other facts about water in North Canterbury are detailed in a recently published book by Sam Mahon, an artist and son of the late Justice Peter Mahon, who became famous and vilified during the Erubus enquiry for stating that he had been forced to listen to “an orchestrated litany of lies” from the Airline and other officials. Anyway Sam wrote a book called “The Water Thieves” which details the goings on around the Community Boards and water. It’s a very interesting read and I think perhaps a prophetic warning. Anyway I was incensed. There’s nothing quite like this sort of chicanery to get me out of feeling miserable and into expressing myself in what for me is now the usual way in a poem So here it is.
They did not notice
He came
like a thief in the night
to take the water.
He gathered it into
his permits and
his resource consents,
he gathered it when
no-one was looking
they were too busy
with their new houses
and possessions
spending their spare time
seeking more things to buy
that they did not need.
trapped firmly
in the euphoric illusion
of eternal development
They did not notice him
gathering the water
they thought there was
an everlasting supply
but he gathered more and more.
Soon he had many
green fields and
a very big house,
its good to be rich
they said and
still they did not notice
they relied on others
and still he took the water
and still they did not notice;
they were traveling the world.
One day
a small boy
pointed to the river
why are there no fish
he asked and why does
the water taste funny?
They had no answer
and they were frightened
too late!
6th March 2007.
Enough for now I think. It’s a bit of a ramble really but it does take my mind off the misery. I have one last treatment on Monday. Then I just have to wait for a month, living pretty much as I am now. Hopefully by then I’ll be able to eat some proper food .again. Each day brings its own little challenges and demands. Its hard to describe.. One day its just the inability to clear phlegm which largely consists of blood and dead cells from my throat. Another day it may be just drinking this horrible stuff that I live on now or making the effort to go for a walk or do a little writing or answer emails etc. Its not that my body is too weak, just the mind and the overwhelming lethargy. The demands to have food, drink, mouthwashes, saltwater bathing of my skin, more pills, more fortisip and so on are relentless. I am lucky. I have so many friends who are so good to me. The group of trainers I have been working with brought me a T shit this week. It is black with my name on the front and ‘Social Atom Repairman’ on the back. So much kindness and love. Thank you all very much.
To My Friends 3
09 March 2007
9th March 2007
What do you say when it all seems so boring. I’ve just walked back from the hospital after my daily treatment or searing as I lovingly call it with the radiation therapists. We have a very good relationship. I think they see me as a bit eccentric but basically harmless This morning I was trying to coach them into some variation in the roles.. Each morning they come in and say “How are you today?” They said that’s what they were taught to do. I tried to coach them into saying “Shit, you look feckin’ terrible today or something like that. They weren’t so sure that that was a good idea. We did agree that they would try something new with me.
The symptoms now have certainly got a firm grip. Sometimes I feel really terrible, close to just sitting down and crying until it all goes away. Its funny really, I feel like that during the day, but at night when I’m awake most of the time I don’t feel much at all. I just lie there not thinking much and not feeling. Its interesting to note what I do to comfort myself when food and booze aren’t available. I like to sit even on a warm day with a blanket wrapped round my legs. Never done it before in my life
I am losing weight and they have now put me on a supplementary diet of soy milk drinks with all kind of additives. The radiation therapists are still fantastic. They try everything to help me deal with the symptoms. One brought me a pamphlet from her dentist advertising a salivary stimulant. Another has been giving me (on the quiet) a few spoonfuls of powder they have but is not yet available in shops but which mixes into a drink that tends to stay around longer in your mouth and keep it moist. I’m in love with them all. The lettuces in my garden of which I’m so proud are just going to seed and I haven’t got the energy to find someone who would have them. Julie keeps making me meals which I eat. She continues to be an angel although I suspect her patience is stretched at times.
The latest thing to be really affected is my voice. It has now become so hoarse that sometimes it doesn’t come out at all. I grieve for my voice. That voice, once almost Pavarotti like in its clarity and tone now sounds more like Tom Waits. Mind you I have always rather envied Tom Waits. How can you spend all those years in night clubs without dying of something awful. I see he’s just put out a new record. Anyway I expect that I will regain my melodious tones once I am over the treatment..
From today which is Friday I have five treatments to go. Monday to Thursday next week will be full treatments and Friday is what they call a cone down. It’s a modified treatment focusing on only one place. Then after a visit to the oncologist I’m on my own for a month. The symptoms are expected to peak 10 days after treatment finishes and then healing cuts in so they say. So that’s just over two weeks away. Until then as they say in the music world ‘the beat goes on’.
I’m still writing poetry although the muse sometimes deserts me. Anyway I’ll include another little poem that I wrote about the mask. Actually, they give you the mask when the treatment’s over But I think I’ll have to be very creative to have it accepted as a regular part of our lounge furniture. Probably get the same response that I received from Julie when I suggested that I get a cheap coffin for myself which we could use as a coffee table until it was needed. This suggestion which I thought was pretty good, you know talking point and all that, was not well received. Anyway, The poem and I’ll write again in a wee while. Might have a wee rave about water thieves people who steal our water, legally!, and then return it to the waterways full of crap. Next Time.
The mask
He lies still
trapped on the table
head covered
in clear plastic
flexible not malleable
unable to move
he waits
beneath the mask who knows
apprehension, excitement
acceptance
a thief
a husband
a child molester
a Samaritan
the mask offers its
succour to all.
the plastic is littered
with archaic symbols
like a Masonic star or
a fleur de lise
membership of the club
restricted to
those who can make
meaning of the signs.
the white coated voices
return, hands on
soft hands
gentle hands
talking hands
hands that bring
the comfort of competence.
10th February 2007
What do you say when it all seems so boring. I’ve just walked back from the hospital after my daily treatment or searing as I lovingly call it with the radiation therapists. We have a very good relationship. I think they see me as a bit eccentric but basically harmless This morning I was trying to coach them into some variation in the roles.. Each morning they come in and say “How are you today?” They said that’s what they were taught to do. I tried to coach them into saying “Shit, you look feckin’ terrible today or something like that. They weren’t so sure that that was a good idea. We did agree that they would try something new with me.
The symptoms now have certainly got a firm grip. Sometimes I feel really terrible, close to just sitting down and crying until it all goes away. Its funny really, I feel like that during the day, but at night when I’m awake most of the time I don’t feel much at all. I just lie there not thinking much and not feeling. Its interesting to note what I do to comfort myself when food and booze aren’t available. I like to sit even on a warm day with a blanket wrapped round my legs. Never done it before in my life
I am losing weight and they have now put me on a supplementary diet of soy milk drinks with all kind of additives. The radiation therapists are still fantastic. They try everything to help me deal with the symptoms. One brought me a pamphlet from her dentist advertising a salivary stimulant. Another has been giving me (on the quiet) a few spoonfuls of powder they have but is not yet available in shops but which mixes into a drink that tends to stay around longer in your mouth and keep it moist. I’m in love with them all. The lettuces in my garden of which I’m so proud are just going to seed and I haven’t got the energy to find someone who would have them. Julie keeps making me meals which I eat. She continues to be an angel although I suspect her patience is stretched at times.
The latest thing to be really affected is my voice. It has now become so hoarse that sometimes it doesn’t come out at all. I grieve for my voice. That voice, once almost Pavarotti like in its clarity and tone now sounds more like Tom Waits. Mind you I have always rather envied Tom Waits. How can you spend all those years in night clubs without dying of something awful. I see he’s just put out a new record. Anyway I expect that I will regain my melodious tones once I am over the treatment..
From today which is Friday I have five treatments to go. Monday to Thursday next week will be full treatments and Friday is what they call a cone down. It’s a modified treatment focusing on only one place. Then after a visit to the oncologist I’m on my own for a month. The symptoms are expected to peak 10 days after treatment finishes and then healing cuts in so they say. So that’s just over two weeks away. Until then as they say in the music world ‘the beat goes on’.
I’m still writing poetry although the muse sometimes deserts me. Anyway I’ll include another little poem that I wrote about the mask. Actually, they give you the mask when the treatment’s over But I think I’ll have to be very creative to have it accepted as a regular part of our lounge furniture. Probably get the same response that I received from Julie when I suggested that I get a cheap coffin for myself which we could use as a coffee table until it was needed. This suggestion which I thought was pretty good, you know talking point and all that, was not well received. Anyway, The poem and I’ll write again in a wee while. Might have a wee rave about water thieves people who steal our water, legally!, and then return it to the waterways full of crap. Next Time.
The mask
He lies still
trapped on the table
head covered
in clear plastic
flexible not malleable
unable to move
he waits
beneath the mask who knows
apprehension, excitement
acceptance
a thief
a husband
a child molester
a Samaritan
the mask offers its
succour to all.
the plastic is littered
with archaic symbols
like a Masonic star or
a fleur de lise
membership of the club
restricted to
those who can make
meaning of the signs.
the white coated voices
return, hands on
soft hands
gentle hands
talking hands
hands that bring
the comfort of competence.
10th February 2007
To My Friends 2
01 March 2007
Update 1st March 2007.
Hi everyone. More of the same really. But wait. Tomorrow is the last day of treatment for the top of my head, and about time. It is a little raw but not too bad. I now have what medieval clerics would call a tonsure. A ring of hair around just above the ears and completely bald on top. Come to think of it the last time I had a tonsure was in my preparation for the priesthood about 41 years ago. That time was not nearly so satisfying. The Church in 1966 demanded only a tiny clip of hair. Nothing like the middle ages when they did things properly. Anyway my hair is almost gone.
The whole of the left side of my face and most of the right is very red, but so far unbroken. I have another nine or ten treatments for this so I expect to finish about the 15th March. By far the worst effects of all this are the destruction of my previously very refined taste buds and an increasingly sore throat which makes swallowing difficult. Julie, God bless her and keep her beside me forever, has sought out the best foods from throughout the land and I hate them all. However, I am managing to keep shoveling stuff down so my weight is dropping only marginally. I must admit that I approach mealtimes without enthusiasm.
I am able to walk for an hour or two every day so my body, such as it is, gets a good workout. Today on the river walk I passed a battalion of soldiers on a run. They were spread out over a kilometer and I reckon I was fitter than half them. Thank God we’re not at war.
Sleeping is still difficult which makes for an interesting life. I’m usually up about 6 – 8 times during the night for water, a mouthwash or just a good look at the bathroom. Still I seem to be rested enough and apart from short naps in the afternoon can carry out normal activities, like reading and watching TV. I am seeing a few of my supervisees still but receive little encouragement for this activity from “her who must be obeyed”.
The weather in Christchurch has been pretty good over the last few weeks and I still have a steady stream of visitors. People generally, all of you have been more than generous. They often ring to check that we want to receive visitors, offer to make meals, bring food, take me to the hospital, lend books and video’s, bring flowers and a multitude of other small kindnesses. I feel blessed indeed and continue to express that in the best way I can through my writing. I’ll finish with a small poem I recently wrote for the staff who carry out my treatment. Please let me know if you think my writing about my difficulties is worthwhile.
The Staff
It seems so strange
to be part of your life
for a short time and
then perhaps never
to see you again.
Yet in this short time
we are so close
I know
your smell
your touch
your voice.
I feel
your softness
your commitment
your competence
your compassion.
I am privileged indeed
to know you this way
I am conscious of
the great gift
I have been given.
May you all be blessed.
23rd February 2007
Hi everyone. More of the same really. But wait. Tomorrow is the last day of treatment for the top of my head, and about time. It is a little raw but not too bad. I now have what medieval clerics would call a tonsure. A ring of hair around just above the ears and completely bald on top. Come to think of it the last time I had a tonsure was in my preparation for the priesthood about 41 years ago. That time was not nearly so satisfying. The Church in 1966 demanded only a tiny clip of hair. Nothing like the middle ages when they did things properly. Anyway my hair is almost gone.
The whole of the left side of my face and most of the right is very red, but so far unbroken. I have another nine or ten treatments for this so I expect to finish about the 15th March. By far the worst effects of all this are the destruction of my previously very refined taste buds and an increasingly sore throat which makes swallowing difficult. Julie, God bless her and keep her beside me forever, has sought out the best foods from throughout the land and I hate them all. However, I am managing to keep shoveling stuff down so my weight is dropping only marginally. I must admit that I approach mealtimes without enthusiasm.
I am able to walk for an hour or two every day so my body, such as it is, gets a good workout. Today on the river walk I passed a battalion of soldiers on a run. They were spread out over a kilometer and I reckon I was fitter than half them. Thank God we’re not at war.
Sleeping is still difficult which makes for an interesting life. I’m usually up about 6 – 8 times during the night for water, a mouthwash or just a good look at the bathroom. Still I seem to be rested enough and apart from short naps in the afternoon can carry out normal activities, like reading and watching TV. I am seeing a few of my supervisees still but receive little encouragement for this activity from “her who must be obeyed”.
The weather in Christchurch has been pretty good over the last few weeks and I still have a steady stream of visitors. People generally, all of you have been more than generous. They often ring to check that we want to receive visitors, offer to make meals, bring food, take me to the hospital, lend books and video’s, bring flowers and a multitude of other small kindnesses. I feel blessed indeed and continue to express that in the best way I can through my writing. I’ll finish with a small poem I recently wrote for the staff who carry out my treatment. Please let me know if you think my writing about my difficulties is worthwhile.
The Staff
It seems so strange
to be part of your life
for a short time and
then perhaps never
to see you again.
Yet in this short time
we are so close
I know
your smell
your touch
your voice.
I feel
your softness
your commitment
your competence
your compassion.
I am privileged indeed
to know you this way
I am conscious of
the great gift
I have been given.
May you all be blessed.
23rd February 2007
To My Friends 1
01 February 2007
1 February 2007
Since I became ill I have received many phone calls, emails and cards from you all.. For this I am, profoundly grateful. I feel loved and held by you all in prayer and in many other ways. I want in return to keep you up to date with my progress.
Most of you will be aware that on 23rd November 2006 I had an operation to remove a cancer that had developed in my left parotid gland (just in front of the ear). The operation was successful and removed this cancer (squamous cell) plus others that had developed further down my neck and shoulder. The designated follow up treatment for this was six weeks of daily radiotherapy to begin early in the New Year. Two weeks after the operation another cancer appeared on my forehead. This was thought to be squamous cell and removed in a small operation that I have had several times before. However, this was a different type of cancer (neuroendocrine or merkel cell) and was to somehow be included in the radio therapy.. A further complicating factor is my immuno suppression which unfortunately must be maintained when most alternative treatments seek to strengthen the immune system. Due to a large number of factors the radiation treatment did not start until the end of January and I am now just over half way through it.
Radiation treatment is not unpleasant itself but its side effects are. The best way to describe it is as very bad sunburn both outside and in. Sunburn on the skin can be easily managed. Inside the mouth and neck s not so easy to manage and these side effects are now beginning to manifest. I have sore gums and throat and my mouth generally feels raw. Most food tastes like shit or soap or both yet it is important during this treatment that a regular intake of good food is maintained. As you may imagine, it is not easy to sleep so night time is not preferred. Each day passes in a welter of treatment, mouth washings, skin bathings, medication takings and a variety of other activities aimed at amelioration of the symptoms as well as meditation, exercise and some small amounts of work.
All is not lost. The team at the oncology centre are fantastic. These young women are well trained, confident and competent. Furthermore, and this is a real plus, they like each other and work well together. They are pleasant, smiling and seek to find out what you need. The attempt to provide whatever help they can. While going into the oncology dept every day for treatment is not pleasant, meeting these people certainly is. They are always on time and I feel grateful to be in such competent hands.
Julie also and my family are always available. Julie is now home from work most days and constantly seeking new foods or foods that I might be able to tolerate and that don’t taste terrible. She also does her best to see to it that I get the rest that I need. My family have been fantastic. They stay constantly in touch coming over almost daily to have a chat, be ready to act as a back up with transport, go for walks, go to a movie and generally just hang out. My children keep in touch regularly by email and telephone. Friends also, both work and personal, are constantly offering to cook meals, visit or be involved with us in some other way. We are sometimes almost overwhelmed by the help we are receiving. I feel very privileged.
What really lifts my spirits mostly in my work. I have been seeing a few people for supervision but in the last couple of days I have conducted the first two days of a four day training workshop with a group of nurses I have been training for several years. I do love groupwork. I hadn’t realized its ability to lift me and get me going in much better ways. Yesterday I conducted a session on group warmup. It was fantastic and it started out just with something that happened in the group which in response began to fragment. I felt extremely pleased with it and came home and wrote about it. That lifts me. That gives me back my life. Don’t you just love to conduct a teaching session which starts from practically nothing and winds up leaving everybody full, satisfied and thoughtful.
I’m also continuing to write poetry although my motivation is not so strong. I have written several poems about the treatment which have been much appreciated by the staff at the oncology department.
So here I am.. The next 3 weeks will not be easy or fun but I will get through them and begin to heal. If there are further significant developments I will let you know.
I expect to see many of you later in the year. In he meantime I expect I will take my fun where I can find it.
Since I became ill I have received many phone calls, emails and cards from you all.. For this I am, profoundly grateful. I feel loved and held by you all in prayer and in many other ways. I want in return to keep you up to date with my progress.
Most of you will be aware that on 23rd November 2006 I had an operation to remove a cancer that had developed in my left parotid gland (just in front of the ear). The operation was successful and removed this cancer (squamous cell) plus others that had developed further down my neck and shoulder. The designated follow up treatment for this was six weeks of daily radiotherapy to begin early in the New Year. Two weeks after the operation another cancer appeared on my forehead. This was thought to be squamous cell and removed in a small operation that I have had several times before. However, this was a different type of cancer (neuroendocrine or merkel cell) and was to somehow be included in the radio therapy.. A further complicating factor is my immuno suppression which unfortunately must be maintained when most alternative treatments seek to strengthen the immune system. Due to a large number of factors the radiation treatment did not start until the end of January and I am now just over half way through it.
Radiation treatment is not unpleasant itself but its side effects are. The best way to describe it is as very bad sunburn both outside and in. Sunburn on the skin can be easily managed. Inside the mouth and neck s not so easy to manage and these side effects are now beginning to manifest. I have sore gums and throat and my mouth generally feels raw. Most food tastes like shit or soap or both yet it is important during this treatment that a regular intake of good food is maintained. As you may imagine, it is not easy to sleep so night time is not preferred. Each day passes in a welter of treatment, mouth washings, skin bathings, medication takings and a variety of other activities aimed at amelioration of the symptoms as well as meditation, exercise and some small amounts of work.
All is not lost. The team at the oncology centre are fantastic. These young women are well trained, confident and competent. Furthermore, and this is a real plus, they like each other and work well together. They are pleasant, smiling and seek to find out what you need. The attempt to provide whatever help they can. While going into the oncology dept every day for treatment is not pleasant, meeting these people certainly is. They are always on time and I feel grateful to be in such competent hands.
Julie also and my family are always available. Julie is now home from work most days and constantly seeking new foods or foods that I might be able to tolerate and that don’t taste terrible. She also does her best to see to it that I get the rest that I need. My family have been fantastic. They stay constantly in touch coming over almost daily to have a chat, be ready to act as a back up with transport, go for walks, go to a movie and generally just hang out. My children keep in touch regularly by email and telephone. Friends also, both work and personal, are constantly offering to cook meals, visit or be involved with us in some other way. We are sometimes almost overwhelmed by the help we are receiving. I feel very privileged.
What really lifts my spirits mostly in my work. I have been seeing a few people for supervision but in the last couple of days I have conducted the first two days of a four day training workshop with a group of nurses I have been training for several years. I do love groupwork. I hadn’t realized its ability to lift me and get me going in much better ways. Yesterday I conducted a session on group warmup. It was fantastic and it started out just with something that happened in the group which in response began to fragment. I felt extremely pleased with it and came home and wrote about it. That lifts me. That gives me back my life. Don’t you just love to conduct a teaching session which starts from practically nothing and winds up leaving everybody full, satisfied and thoughtful.
I’m also continuing to write poetry although my motivation is not so strong. I have written several poems about the treatment which have been much appreciated by the staff at the oncology department.
So here I am.. The next 3 weeks will not be easy or fun but I will get through them and begin to heal. If there are further significant developments I will let you know.
I expect to see many of you later in the year. In he meantime I expect I will take my fun where I can find it.