July 2009
Hi Samex
Yep - there will never be a day when some thought about cancer comes into your consciousness - as the cricketer Simon O'Donnell said in a interview on SBS Insight two years ago - 'that is the true life sentence of cancer'. He was 20 years out from treatment at that stage! However - those thoughts can often be creative and appreciative that we are still here.
Yes - the fear of recurrence is always there but most of us learn how to handle it. I once met a man who, at that stage, was fifteen years out from diagnosis and successful treatment. Every year he went and had a blood test and saw his specialist in December each year. His specialist had long ago said that he didn't need to have the test or be seen. This person insisted, and when the specialist would tell him, 'all clear' would say that this was his Christmas present to himself.
Like Amanda, I am never afraid to seek medical advice.
Cheers
Sailor
There is no more thrilling sensation I know of than sailing. Jerome K Jerome
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July 2009
Hi Sharon 55
This is an old thread and by now your husband must have had his treatment. How has it gone.
Wish I had picked up on the this earlier, as most of my treatment has been internally delivered radiation and I am still here, many years after my supposed use by date.
Cheers
Sailor
O, well for the sailor lad,
That he sings in his boat on the bay! Tennyson
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July 2009
2 Kudos
Hi Steve
Here is something I wrote last year on this theme:
When you listen to the stories of those affected by cancer this is a very common theme. Yes along the way you meet some amazing people, you interact with wounded storytellers and wounded healers and you make new friends, but that still does remove the sense of abandonment that you feel.
But why is it that companions shun us, that we feel abandoned by friends and family? The Sydney Cancer Surgeon, Myles Little, who several years ago did a huge amount of work with long term survivors of cancer suggests that it is because we are confronting mortality and others find this uncomfortable. It could also be the reaction that a friend suggested to me when she felt that one of her best friends was shunning her because if “it happened me it could happened to her”. And sometimes we are uncomfortable to be with - if you are not feeling well or you have had a hell of a week, it is hard to engage in the normal social chit-chat. To have the ritual greeting “How are you” and the response “I’m fine” seems a bit hollow. And of course we often look well - as one chemotherapy nurse said to me “we are awfully good at making patients look well”. And then there is the effect on our families and loved ones and we worry about them.
But sometimes the discomfort is with our friends - the honest ones will say - ‘look I find it uncomfortable being with you, I do not know what to say’. Well we are uncomfortable being with ourselves sometimes, and you don’t actually have to say anything. Sometime ago there was one person who I have known for a long time - whenever they saw me they always grabbed my hand and held it - sometimes they didn’t say anything, sometimes they just asked how the last week had been.
There is a wonderful quote that I found in the novel “The Sixth Lamenation” by William Brodrick - He has the Abbott of a monastery talking to a younger monk “We have to be candles, burning between hope and despair, faith and doubt, life and death, all the opposites. That is the disquieting place where people must always find us”
Sailor
But the sea is a mighty soul, forever moaning of some great, unshareable sorrow, which shuts it up into itself for all eternity. Lucy Laud Montgomery
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June 2009
Hi Wendy
In the thread that follows Mary's "I need to tell someone out there" are some suggestions -
Carers Australia and Carers Cancer Connect and to remember that the Cancer Helpline 13 11 20 is as much for partners as it is for patients.
Cheers
Sailor
There are no signposts in the sea. Vita Sackville-West
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June 2009
Hi Mary
So glad you have told someone out there - that's the first step. Keep on doing it. Remember the Cancer Helpline 13 11 20 is also there for you as well as your partner. Down here in Vic we also have a Cancer Connect for Carers, I don;t know if they do in other states. There is also a mob called Carers Australia www.carersaustralia.com.au , and they have state chapters. They also get some government funding so don't be afraid to use them - good example of our taxes at work.
Now I'm the bloke who has cancer and I have a very loving wife, but it is only now, after living with this thing for eleven years that we can talk frankly about it. I can remember the way the first drug I was on wiped out my libido - what does that mean? It means that not only are you not interested in the sexual side of your nature, you are no longer aware that you are not interested. It is as if that side of your personality had just been wiped out. I can remember coming up to that first Christmas after diagnosis and not long after I had started treatment, we were walking though the shopping centre and I took her hand, and was quietly told "Do you realise that is the first time you have touched me in three weeks?" I was devastated. She always says that I am the one in the family that wears their heart on their sleeve - yet I didn't talk much about my cancer to people who really cared, I found it too difficult to handle their pain as well.
Also as men we do handle things differently. There is an old Cancer Connect poster in the Cancer Council - it has a picture of a middle aged man and the words "And so began Dad's cancer battle, of which very little was said. In public he held his head up high, and fought his battle in his shed". We will talk about it - I've been in a room full of men who normally would not discuss this and had them talking and talking about their cancer, the effect of it on them, their fears and concerns. It's just we need permission from others to do so, to break down the "I'm tough and can cope with this" image that we are conditioned to live with.
So don't be afraid to voice your fears, you hurt, your grief - not in the sense that you are putting this on him, but that this is the way you feel about it. Also take care of yourself, get support for yourself as you are on this journey together.
Take care
Sailor
Love one another but make not a bond of love: let it rather be a moving sea between the shores of your souls. Kahlil Gibran
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June 2009
“What are you doing here?” rang out as my oncologist and I walked across the foyer of the treatment centre. The enquiry came from a nursing acquaintance who had not expected to see me. It was an unanticipated visit; my blood levels were accelerating skywards. My oncologist quietly answered for me - “Sailor’s been misbehaving”.
Later that day, unsure as to what would happen, what tests were to be done, what treatment would be offered - that statement rankled. It seemed my cancer had returned, that was not my fault, I was not guilty. I had not been misbehaving!
Three years had passed since my initial treatment, everything had gone well - as far as I was concerned I was well on my way out of the five-year square and into survivorship. Sure my blood marker level had gone up, but then it came down. There was a term for it, “the bounce”. If you had that it was a good sign - you were into long-term remission, some would even whisper that forbidden word ‘cure’. Yet there it was, the blood levels reaching for the moon, if not the stars. It was not my fault, I had done everything asked of me - good diet, taken all my pills as prescribed, exercised regularly, been positive - no, I had not been misbehaving!
Some years later I re-read some of the works of that dilettante, lawyer and divine, John Donne who bridged that transition from Elizabeth I to Charles I, and ended as Dean of St Paul’s. He married his 17 year old bride without her father’s permission and was flung into the Fleet prison, where he inscribed the words “John Donne, Anne Donne, Undone” - at least we know how he pronounced his name! Towards the end of his life he wrote “Devotions Upon Emergent Occasions”. Hemingway used one of these in the title of his book “For Whom the Bell Tolls”.
My cancer is not foreign to me for nothing has invaded me. It is my cells that are aberrant, not another person’s, not a bacteria, not a virus. I am not battling an invader, so metaphors that belong to the military are not appropriate. What is growing in me are Sailor’s cells - they have changed, mutated, forgotten how to stop growing, but their DNA is my DNA.
If my heart misbehaves and stops, will not I stop? If I my leg is cut off, will I say I fought a battle with my leg? No it is part of me that is lost and I am the poorer for it. If my brain misbehaves and I become demented, will not people still address me as Sailor, and perhaps say, “Poor Sailor, he used to think a lot”? For there will still be a flicker of me left in the husk of a body. I cannot separate Sailor from the myriad parts of me, the millions and millions of cells that in some mysterious way form me. So if some of my cells changes and mutate and do abnormal things, is it not me who is doing those things?
My cancer is now part of who I am. It is not foreign, but truly it is part of what makes up Sailor. In a sense I have become my cancer and my cancer has become me. So if my cancer misbehaves, is it not me misbehaving?
Yes, Sailor was misbehaving!
Sailor
No man is an Iland, intire of itselfe; every man
is a peece of the Continent, a part of the maine;
if a Clod bee washed away by the Sea, Europe
is the lesse, as well as if a Promontorie were, as
well as if a Manor of thy friends or of thine
owne were; any mans death diminishes me,
because I am involved in Mankinde;
And therefore never send to know for whom
the bell tolls; It tolls for thee.
MEDITATION XVII
Devotions upon Emergent Occasions
John Donne
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June 2009
What a statement, and that coming from an oncologist!
2004 was not a particularly remarkable year. Two thirds of the way through I sacked my surgeon, retained my radiation oncologist and found myself in the hands of a medical oncologist. Somewhat of a surfeit of oncologists that year – nothing remarkable about that.
That year I decided that the Good Lord was clearly an architect and not a plumber. Only an architect would run the main drain something that could enlarge and block things. Any plumber will tell you that they have a machine that goes up drains and unblocks – ouch!! That was not the reason I sacked the surgeon – he was a good plumber but had the people skills of a demented cockatoo.
My first surgeon was a wonderful gentle person with great people skills. Listened carefully, took into account what you told him, considered your lifestyle and situation before proposing treatment. Unfortunately he died of cancer and when the drain stopped flowing I had to find another one in a hurry.
Two years before I had been to see gentle man on Easter Thursday, clutching a CT scan, vomiting, hallucinating and in pain. The vomiting and hallucinating were from pills the GP had prescribed to cover the pain while I had a scan and got to see the specialist. It was then I fully realized how I just don’t do opiates. But, there it was – a big ugly lump of tumour pushing up and blocking off the kidney. Result, excruciating, paralysing pain, too awful to want to remember.
Chemo to shrink the tumour then my radiation oncologist judges me to be suitable for experimental treatment. Seventy hours flat on my back connected to a machine that danced a tarantella to a drum beat every-hour. People came in and fussed over that machine. Checked all its inner workings. Made sure that the ‘hot’ bit of it was safely in its lead kennel, except when it was in me. Then it was running up and down the tubes inserted under anaesthetic that had worn off. They had put me out to it, to wake up later in this pale room, hooked up, an extension of a machine. When the machine did its drum beat was when the lead lined walls of the gated room ensured that I kept my own company. Nurses, faithful nurses came and rolled me every fours hours and rubbed my back and bum with lotion. Sometimes the gentle night nurse would use baby powder – sensuous and soothing. Bags of fluid ran into my veins and out through other tubes into a drainage bag. Volumes in and out carefully recorded for posterity
Specialists had dreamed this up, computers had done calculations, technicians had set it up, nurses had been trained, physiotherapists had advised – a team had worked and planned this - for me!
Two years later demented cockatoo had ordered another scan which eventually found its way to my radiation oncologist. The big ugly lump of tumour was no more, disappeared, vanished, as if it had never existed.
Sailor, you are remarkable, was the comment. No I was not remarkable, but that team of people were – everyone of them.
Sailor
If you want to build a boat, do not instruct the men to saw wood, stitch the sails, prepare the tools and organize the work, but make them long for setting sail and travel to distant lands.
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June 2009
Love to be involved but am a bit busy today with the CanNET national conference on tomorrow. Hope it all goes well, hope it continues and that we will have many more live chats on a variety of topics.
Cheers
Sailor
He that will not sail till all dangers are over must never put to sea." Thomas Fuller
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At long last results arrived
Dorovitch did not send to specialist
Specialist 'phoned!
Verbally undetectable
Written results were waiting
On arrival home quite late, late enough
to take taxi!
Written undetectable.
All other test within normal limits
Some things a bit low or a bit high
but acceptable!
Perfectly acceptable.
Sailor
They that go down to the sea in ships:
And occupy their business in great waters;
These men see the works of the Lord:
And his wonders in the deep. Psalm 107
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Sitting by the Thames, behind me the brutalism of Scott's Bankside power station. It is a warm autumn day in London. Twenty four hours earlier I had sat in the humidity beside the Singapore river, drinking beer and watching the bumboats talk tourists past the old warehouses.
In London the old warehouses were no more - gentrified, reconstructed,chic - as in docklands in many old cities. Thriving activity; proud technology of another age had all gone - where? Still in London the barges throbbed up and down. To what destinations?
The beer in London, still the measures of another age, tasted good, as good as it did in Singapore those twenty four hours ago. Behind me the power station had also been gentrified and become the Tate Modern. The mighty cathedral to past technology was now the stunning gallery of all things modern - well, whatever that might mean.
To me the highlight was the Epstein's - mighty pieces of stone turned into fantastic figures, beautiful, sometimes haunting, evoking powers from another age. Yet they in their time had travelled as sideshows to a circus. How could you keep your integrity and that of your work when it was treated with such disdain? I hope that never happened to 'Ecce Homo' standing now outside the Cathedral of Coventry - that squat haunted figure constrasting the height and grace of the archangel Michael in the glass of the epinonymous building. Then the bookstore and the discovery of the 'Atlas of Experience', mapping the human condition.
Sitting in the warm sun it was good to be alive. Six months after salvage radiotherapy, in a time when you could dare hope that you might be cured.
Life was simpler then. It was another country.
Sailor
The past is foreign country, they do things differently there. L P Hartley
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