August 2009
“That’s not a real cancer” came floating down the telephone line from a colleague. I had ‘phoned her because I had a call from another colleague to tell me that if I wanted to see Joyce again I had better hurry up, she had advanced cancer and was in a wheelchair.
Joyce was a rather special colleague, one of the few to understand why I had left the organization where we had both worked. Fascinating lady - international reputation in her area of scientific work. Had been with the organization forever, or so it seemed. She adopted the role of tribal elder, the keeper of the culture. Christmas parties were fascinating as she sat in a corner and told the stories of the place. She didn’t tell its history, she embodied it. She was a person of deep religious faith, and ‘though she drank like a fish, smoked like a chimney and swore like a trooper, she took her religion seriously and in her spare time worked hard for the poor and dispossessed in very practical ways.
About ten years after I left the organisation she retired and moved up to a country town she loved. We had kept up sporadic contact, going up there from time to time, providing transport occasionally, but a few months had passed. I was in a new job, I had just had a diagnosis of cancer and then I got this ‘phone call. I telephoned her - it was a Thursday.
We chattered for a while and I suggested that we come up to see her, about three - four hours drive, at the weekend. There was a pause, then “It can’t be this weekend, I have family coming up - you probably don’t know, but I have cancer”. I asked about her cancer and was told where it was - it was serious - and some of the side effects - nasty. Then, “come up the following weekend - you can stay if you want to”. We wouldn’t stay, but I mentioned that I had cancer as well. “What type?” I told her - “That’s not a real cancer”. I didn’t respond and we chatted about the old days a bit, who I had seen or heard of, who she had seen and remained in contact with and then finished the conversation promising to see her in ten days time.
I rang off, put the ‘phone down and started to seethe. Mine was a real cancer; I had started treatment to see if it could be shrunk so that I could have further treatment. I didn’t understand then just how aggressive it was or what the numbers meant, but I knew it was a real cancer and that more people died from it that women died from breast cancer. I also new the implications it would have for my family. Joyce was someone that you could have straight conversation with - so I was determined in ten days time to discuss our cancers, the biology, treatment, prognosis and that both were real.
A week later I got a ‘phone call from where we had worked together, to tell me that Joyce had died on the Sunday and that her funeral had been on the Wednesday. They didn’t know I had moved again and hadn’t been able to contact me.
Joyce lives on in memory, whenever the old crew meet up, someone mentions her. The organization has moved on, moved to another site, expanded and few now remember the old days, the old site and the keeper of the culture.
However, she had no right to say that mine was not a real cancer. Just as we do not have the right to denigrate someone else’s cancer experience or what they have been through. What we have and what we have been through is unique to each of us, it contributes to what and who we are. It is ours and ours alone and no one should devalue it.
Sailor
Earth and sky, woods and fields, lakes and rivers, the mountain and the sea, are excellent schoolmasters, and teach some of us more than we can ever learn from books. John Lubbock
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July 2009
Hi Everyone
I haven't been monitoring this discussion as I've been a bit busy this week. But this is an issue that comes up under various guises from time to time. "Why me?" - "It's not fair" etc. You can turn the question round and ask "why not me?" or "Why is it unfair?" I would be great to know why some people get a cancer that gives them an truly awful time, particularly if they are young. It would also be great to know why some people seem to sail through life without getting cancer or any other trauma. We can all wonder about it, and that is fine. The problem is that it can also become an obsession, and when it does that it can leave us pretty bitter and twisted. Me, I prefer not to go down that path.
Some of you may have noticed that I collect quotes - I have one on my wall that is attributed to Tim Costello "There are times in life when we have to face the big questions, to look squarely into the face of death and then affirm the sheer gift of life" . I'll leave it with you.
Cheers
Sailor
All the rivers run into the sea; yet the sea is not full. King Solomon
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July 2009
Hi Danny and Amanda
Webster packs are great and a Godsend for forgetful people on lots of medications.
I have my own version - it is a little pill box I picked up somewhere that has three compartments in it. My first-thing-in-the-morning routine is: put the kettle on; fill my pill box. Six tablets in the bottom one - breakfast. One on the middle one - dinner. Three in the top one - bedtime. Fortunately I don't have to take any at lunchtime. By the time I've done that, the kettle has boiled and I can make the cup of tea to wash down the first lot. Routine is a wonderful thing.
Cheers
Sailor
Prevention is, as in other aspects of seamanship, better than cure. Sir Robin Knox-Johnston
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July 2009
Shame on you Dunedigger
As someone who has cancer and lives with it, I would not wish cancer on my worst enemy.
In one of my early blogs I warned about going down the "What If" road and how you can end up bitter and twisted. I think the same applies to the "Blame Road" . It is a road that you need to think about carefully before you go down it.
Sailor
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
Robert Frost - The Road Less Travelled.
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July 2009
Hi everyone
Many years ago a friend I visited had on his wall a poster of a roof of a medieval European house, with hand made tiles on the roof - each tile was different, but together they worked as a roof. It was the words printed over the picture that I remember:
To every complex problem
There are many simple solutions
They are wrong!
Is cancer incidence increasing? Yes, because cancer is largely a disease of older age and we are living longer. So by the time we reach 75, (and we can all expect to reach 75 now - a huge change in the past 50 years) there is a 1 in 3 chance if your male and a 1 in 4 chance if your female, of having cancer. In this we are excluding all skin cancer except melanoma.
Is there variation in different cancers - yes, and it is argued that this is due to lifestyle changes and this is a positive. Most of our information about lifestyle and cancer comes from studies that look at cancer in different countries, changes in lifestyle and then in migrant groups changing from country of origin lifestyle to new country lifestyle. So, for example, as we have improved food preservation we have prevented cancer - yes, moulds that occur in food produce cancer causing substances. As we smoked more cigarettes in the early 1900's, so we increased lung cancer.
We also have to be aware of incidence figures that may simply reflect that we are better at diagnosing cancer. The classic case of this has been the significant increase in prostate cancer since the early 1990's - it simply reflects the availability of the PSA test - not the real incidence of prostate cancer.
What is more important is the survival data. 50 years ago the overall five year survival from cancer was about 25%, now it is >60%. That is something to celebrate.
Sress? Did I have stress in my life before I had cancer - yes, but so do lots of people who don't get cancer. Also we know that for many cancers, particularly ones that are linked to lifestyle, the length of time for the cancer to develop is often up to forty years. Did we have stress forty years ago? What do we mean by stress anyway? Do we use the psychiatrists definition, the endocrinologists definition, the popular press definition (if we used the latter - going to an AFL match such as the last Hawthorn Geelong match would mean there are > 60,000 people who are going to get cancer as a result!).
If you want information on cancer incidence and survival then go the the Cancer Australia website, or the Cancer Council website.
Cheers
Sailor
Countless as the sands of the sea are human passions. Nikolai Gogol
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July 2009
Hi
I spent a few hours thus afternoon looking at the statistics. The Australian Institute of Health and Welfare publishes regular updates on cancer incidence and cancer mortality in Australia. It also breaks down the data into five year age ranges, 20-24, 25-30, etc. So if you look at the data for 25-26 year olds, there is a very slight increase over the past twenty years, but it is a very slight increase. For other age e.g. 65-70 years olds, bigger increase that reflects the ageing of the population.
I think part of the issue is that once we have experienced cancer we are much more aware of it, so notice it and also move in circles where our acquaintances are more likely to have experienced cancer.
cheers
Sailor
The art of the sailor is to leave nothing to chance. Annie Van De Wiele
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July 2009
Hi Everyone
I have no sense of guilt that I am still alive - rather a sense of thankfulness and wonderment. However, at the time I was diagnosed there was a spooky aspect to it. I worked with an office in a long corridor. The peron in the third office along was diagnosed with cancer. A month later the person in the sixth office was diagnosed with cancer. A month after that, I, who inhabited the ninth office, was diagnosed with cancer. Collectively we went along and told the peron in the twelth office that they had better move!! Seriously - it was just one of those coincidences that plague us in life - all different cancers.
However, the three of us were not only work colleagues, we often discussed the deep and meaningfuls of life. We all retired early about the same time and sixth office went interstate. We kept in touch and one day I rang to be told that the oncologist had said there was no more that could be done and that they could expect to die in weeks rather than months. We rang each other weekly and I would joke that if we hadn't managed to make contact by Wednesday I would start looking in the obits of the local paper. They died after several months. I found myself dong was what they had done - put my house in order. Do the things that needed to be done so my family would be OK after I had gone. Even though I was in the middel of a long, therapy free, period.
So I didn't feel guilt, but it did effect me.
Cheers
Sailor
The fishermen know that the sea is dangerous and the storm terrible, but they have never found these dangers sufficient reason for remaining ashore - Vincent Van Gogh
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July 2009
Hi Amanda C
Yes this is one that annoys me!!
I have a number of co-morbidities that my cancer treatment has not helped, so I am currently on eight medications. It is part of my life. Some come with 30 in a pack, some 25, some 90 and some 200, so my prescriptions run out at different times. Will my GP write a prescription without seeing me? No way. It is not as if I don't see him fairly regularly as it is. What really annoyed me recently was that as part of a fun job I do as a volunteer I needed a medical examination by the organisations medical adviser. It wasn't going to cost me anything, but I needed information about any recent blood tests, medications etc. from my own GP. So I rang the clinic and asked if he would mind sending the organisations medical bloke a letter. when I next went to see my GP, the receptionist told me I owed them money and would I please pay it NOW! $12 for writing a letter to another doctor!!!
So yes, we do get a raw deal sometimes. What can we do about it? Well change GP - actually easier said than done. Mine is a very good GP and we have attended that practice for 30 years now, so there is a lot of history there, which every now and then needs to be delved into. Then if you do change your practice who is to say that the new practice won't change and fall into bad habits.
Write to Medicare? Useful but it will nly bring about change if they figure that there is some sort of fraud going on.
Confront your GP? There are nice ways to do this. Explain the situation you are in, that you feel that you are hard done by and you would like a change of their practice. Maybe put it in writing in a polite letter first and say that you would like to discuss this at your next meeting. It might work.
My solution is to occasionally go to another person in the practice. It keep to senior one, whom I see, on his toes.
Cheers
Sailor
You can't cross the sea merely by standing and staring at the water. Rabindranath Tagore
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July 2009
This is a brief account of my opiates induced hallucination history . Does anyone out their also hallucinate on opiate analgesics?
Sailor Doesn’t do Opiates
‘That person is talking too quickly’ were my thoughts as I sat behind myself on the stage of a theatre at which I was delivering an important conference address. It wasn’t frightening but rather interesting. I don’t remember how I got back inside myself, but I did. Nor do I have any memory of the amount of time I was watching myself. But it was interesting - how many times do we see the back of ourselves?
Yes I was hallucinating; I was having an out of body experience, a known side effect of the opioid drug Digesic.
The previous weekend, I had broken up and shifted a concrete driveway - done my back in. The work doctor knowing this paper and presentation were important had put me on a cocktail of drugs to enable me to get there. I had to take the interstate rail sleeper, so I could lie down for most of the travel - flying was verboten. In those days we still had interstate rail sleepers!
My next experience was my first round of cancer treatment - a morphine pump. When pain came - push the button and morphine was delivered. I was looking forward to the pink elephants! Shortly after coming out of theatre I had to have a CT scan, to check that the hardware they put into me was in the right place. Off the bed, onto the trolley, no back support, it was only for a short time, up in the lift, and then shunted into a waiting area with curtain drawn around me. An emergency patient needed a CT ahead of me. Fair enough, but they didn’t plug the morphine machine in and its battery was flat! After thirty minutes I was screaming. Eventually someone responded - one of the radiation therapists - who just said quietly “Sailor you are in a bad way”, then returned with five other people and a sheet and did a blanket lift from trolley onto a bed with proper back support - critical if the hardware in you is long and thin. The morphine machine was plugged in and I hit the button and I hit the button, and I hit the button. Eventually the pain blurred into nothingness and then the hallucination started.
A purple landscape, like something out of the Wild West - mesas and buttes in the middle distance. Men-like cactus, or cactus-like men, populating the arid plain. On the horizon, or where there should have been an horizon, roiling black clouds, rolling across the landscape towards me. A sense of total despair. It was something I never want to see again.
Days later I told this to a friend who suffers chronic unimaginable pain and who has been on morphine for years. He burst into tears. He had experienced the same vision and thought he was going mad.
Then came the chronic pain when the cancer recurred. My GP put me on the maximum dose of Tramal for the weekend and ordered a CT scan. I reacted badly to Tramal, throwing up constantly. I can remember sitting in the waiting room at the radiologist’s - crowded waiting room - trying to swallow contrast solution with a bucket into which the contrast bounced via my gut. I must have swallowed enough of the stuff, or they gave me different stuff intravenously - I don’t remember the intravenous stuff that leaves you feeling as if you have wet yourself. But I ended up on the table of the machine - the technicians left the room. Then as the table slid me into the tunnel there was a person holding my hand - they held my hand all through the procedure, back and forth in and out of the tunnel. It was comforting!
Two years and several procedures again I was being prepped for theatre in yet another hospital - I’ve been in five or six so far. Due for theatre at 5 pm, eventually make it into theatre at eleven. In the early hours of the morning, recovering from the anaesthetic, groggy with pain and whatever I was given to ease the pain, there it was. Someone was gently patting or rubbing my foot and ankle. Not scary, but reassuring - you are going to be OK. Interesting hallucination! I told the nurses about it in the morning and for the next could of days whenever they passed they would pat my ankle - that was nice.
So Sailor doesn’t do opiates.
What will happen when the time comes that I really need pain relief? I don’t know and I’m not looking forward to it.
Sailor
We may have all come on different ships, but we're in the same boat now. Martin Luther King Jr
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July 2009
The instructions came on one page, telling you, amongst other things, that you had to be irradiated with a full bladder. That you should arrive an hour before your appointed time, drink four 250 ml cups of water in that hour so that your bladder is full before treatment. I look at the nurse - “Water?” “Yes, water!” - besides we are doing you a favour by booking you in early in the morning. OK, OK, even in summer the sun isn’t over the yardarm at eight in the morning! I was actually thinking of tea or coffee, but the thought of a litre of tea or coffee sloshing round inside me wasn’t all that inviting
I cheat, I leave home with a bottle of water in my workbag, drink it driving in or on the train. After all I’ve managed to convince them to do me early in the morning, I’m on my way to work, the hospital is on the way. So I arrive full of water anyway, then just to be sure I have another two cups. No worries!
You are already in the routine. You got here, found your gown in its pigeonhole with you name on it. You belong here: your name amongst those pigeonholes gives you an identity. Into a cubicle, out of you clothes, nothing left but your jocks, pull on the paper bootees and put on your gown. Unlike other parts of the hospital these are not backless gowns, but comforting, wrap around, decent gowns that give you a modicum of dignity. You wait for the therapist to come and collect you.
The words, “The machine’s broken, it will be some time, you had better empty out and start filling again” came as a welcome relief. It is now thirty minutes past the appointed time, your legs are crossed, your eyes are probably crossed, your pelvic floor muscles are so tight they have almost gone into spasm - you can now empty out! You race for the one pan toilet, this is no time for courtesy and you have been in that state longest. Relief!!
Four 250 ml cups of water again, carefully paced out over the hour while you watch the procession of engineers cross to and fro as they tend to the monster in the bunker. The hour comes, then another ten minutes, then another twenty. Things are feeling desperate again when a therapist calls you in.
You go down what seems to be the start of a maze, and then you are in the room - the bunker. In the middle of the room is the monster. Waiting like something from prehistory, hovering above a table covered with a sheet. You hang your dressing gown on the hook and get onto the table. Before all this started they tattooed you - I asked for a rose and a galleon, but all I got was four little dots - on each hip, near the navel and down in the pubes. They try to locate the dots, but they have been drawing on you in blue Texta for several days now, so all the hair follicles seem to have colour in them. It seems strange having them scrabbling round in your pubes trying to find a tattooed dot. Eventually, they find the dot - out with rulers and more Texta drawings. Lights shine from the ceiling lasering out lines on you. The ladies - they all seem to be ladies - push and pull you into position. Somehow your jocks have ended up down near your knees - modesty is an interesting concept. All that pushing and prodding to find the dots all moving you round on the bed leaves your pelvic floor muscles almost rigid, and you can’t cross your legs here- you try and joke with the ladies regarding the perilous state of your bladder. Eventually they have you lined up, the Muzak starts up as the ladies leave the bunker and from somewhere remote comes the disembodies voice telling you to breath normally but lie still. The machine starts up, rotates to one side does it’s almost silent zapping of you then it whirrs and grinds to position the prehistoric head above you. Did I say ‘grinds’ - it doesn’t normally do that. It stops at an angle that is not above you. Suddenly the ladies are back in the bunker - the machines broken down again, the ‘phone call has gone to the engineer. Things are getting desperate, so I ask if they have bucket and mop on hand and no I can’t cross my legs. Suddenly the engineer is here and you have never seen the ladies move so quickly to get a sheet across me - he is a stranger, my modesty must be protected.
It is John, we are old mates, he wants a social chit-chat and catch up on the years since I saw him last. John old mate just fix it, I’m desperate. He can’t, help needs to be summoned. The ladies discuss me with John, then after he has gone to summon help, tell me that I am to be off loaded and can empty out, but to start filling up again. I rush out of the maze remembering to pull on the gown and pull up my jocks as I go. Fortunately no queue for the one pan toilet. Relief!!
Start drinking again. Four 250 ml cups, carefully measured out and paced out over the hour. Watch the procession of engineers comes and go. It is now three hours past the appointed time. Another ten minutes, twenty minutes - legs and eyes crossed. Pelvic floor feeling totally knackered.
“You had better come in now and we’ll finish you” - into the maze, into the bunker - there’s the machine, this time with the prehistoric head vertically above where I am to lie. Find the dots again, check on the Texta markings, push-pull-line-you-up, then off go the ladies. This time the machine behaves, zaps you from on high, whirrs quietly whilst the massive head goes to the other side, zaps you from there and finish!
The ladies come, tell me I can go and that they will see me tomorrow. I’m already half way down the maze, pulling up jocks and wrapping gown about me. Straight to the pan and empty out.
Three litres of waters straight through - I must have the cleanest kidneys in this city.
Sailor
Prevention is, as in other aspects of seamanship, better than cure. Sir Robin Knox-Johnston
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