August 2009
Found I was to be close to the sailing club Saturday, so decided to call in even though the forecast was not great. Problem is that the forecast can be quite variable, so what it is at home can be quite different at the club.
As I drove along the shore, the water was full of white caps under a gusty Northerly. White caps generally mean about 20 knots of winds - approximately 40 km/hr. If it is steady, then that is not to bad - they sail in that a lot on the Lakes in NSW. But down here, at the top of the Bay in a Northerly wind coming through the city buildings it is anything but steady. The forecast for the Bay was 15 - 20 knots rising to 20 - 25 in the afternoon with gusts to 35. That means that the gusts can be 40% stronger than the average - expect gusts up to 50 knots. Way above the boats capability let alone mine.
Discretion being the better part of valour, I didn't even get the boat out. Some of my friends did and had their boats rigged, lots of discussion about whether to sail or not - boat breaking weather. The Race Officer read out the forecast plus the standard that it is at the discretion of the skipper whether to sail or not. Some hardy souls were going anyway.
One of them - good boat, I used to be competitive with him until he built his new boat as a recovery exercise following his surgery - headed out. Wind swinging from North East to dead North, lots of bullets - small localised gusts, wind largely straight off the shore. About a hundred meters off the beache, he got hit by a gust, the nose of the boat pitched down loading up the mast which kinked about half way. Masts can do that and flick back, he straightened up, so did the mast, then it kinked back. As he limped back to shore the mast flicked from side to side at the kink, quite flexible but no break on the outside. What the inside was like, who knows? Hardy souls caught the boat as it came in, tipped out the water and carried it onto the shore. Fortunately nothing more than a new mast section and a day and a half's work setting it up. If it had snapped at the kink and gone through the deck - it would have been really expensive.
Those with their boats still on shore de-rigged and put them away - discretion is definitely the better part of valour.
There was a time when I would have gone out - I know my boat, I know the mast, it would take it, but these days - why risk it and yourself.
After cancer you look at things differently.
Sailor
A wet sheet and a flowing sea,
A wind that follows fast,
And fills the white and rustling sail,
And bends the gallant mast. Allan Cunningham,
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August 2009
Hi RoryA
Yes Advocacy is what you say it is - but what are the areas that you decided to work in? Well there is the need issue, there is the equity issues and to be pragmatic there is also the opportunity.
Let me illustrate:
Equity - cancer survival is worse the further you are away from a metropolitan area. So work with state and federal governments to ensure that the rural cancer initiatives, including $560M in the last budget go to the areas where they will serve those with the greatest need. Work with other organisations to address the issue of transport and the appalling state of the various transport assistance schemes in each state (There was a Senate enquiry two years ago, none of the recommendations have been addressed!)
Equity - the lower your socioeconomic status the lower your cancer survival - no one seems to be addressing this one. It does overlap with the above.
Equity - If your come from an indigenous or culturally and linguistically diverse group, your survival will be worse.
We know all of the above - what are we doing about it?
Need - if you go to the Cancer Australia Website and download the document "Cancer research in Australia: An overview of cancer research projects and research programs in Australia 2003 to 2005"
(http://www.canceraustralia.gov.au/media/14905/national_audit_of_cancer_research_projects_and_research_programs_final_report.pdf), Have a look at the tables on page 30 and following. They plot, incidence, mortality and Person Life Years Lost to Age 75 for a range of cancers, and the research spend on each cancer - breast, leukaemina and ovarian do well on all counts - Lung, Bowel do badly yet they are the top two cancers on all scales. - what are we doing about that. (I am going to be politically incorrect and say of you read or listened to the media you would think that the only females get cancer and the only cancer they get is breast cancer!) What are we doing to correct he bias in the media - I am quite cynical about this - colorectal and lung cancer aren't sexy so they don't get the attention.
Opportunity - if an opportunity presents itself the go for it. A good example is the campaign ran two years ago about allowing terminally ill to access there superannuation without a taxation penalty. A lawyer doing pro-bono work with people affected by cancer approached an advocacy organisation about this. The organisation ran with it and with the help of other organisations got the law changed.
Just a few ideas,
Cheers
Sailor
I am not on this site to be an advocate - so no quotes!
BTW these are national issues!!
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August 2009
Hi Samex
Please do join us - it would be great. An English teacher, personally, I would welcome some professional input. I don't know about the others, but there is one illiterate scientist, with dyslexic fingers, trying to come to terms with a lot of things through writing.
Cheers
Sailor
I start from the premise that no object created by man is as satisfying to his body and soul as a proper sailing yacht. Arthur Beiser, The Proper Yacht
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August 2009
Hi Maddermax
Did they ask him about collecting and freezing sperm? They should have. It might also be helpful to ring the cancer helpline, 13 11 20, to see if they have any cancer connect volunteers who have also had both testicles removed as a result of cancer. Your son may not want to talk to them at this stage but may well find it helpful in the future. I don't think pity will be added to the pile unless your son wants it to be. I have several friends who are in that situation. They have implants that sit in the scrotum and release hormones so that they lead a fairly normal life, with relationships. He will need the help of a good psychologist over the next few months.
You might find talking to the Cancer Helpline useful yourself, in terms of getting some strategies for you to remain in control of your own lives. That is important.
Take care
Sailor
As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous
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August 2009
Dear Maddermax
Awful, awful, awful! However, in this day and age testicular cancer in young men, is no longer the problem that it was. In the 1970's the picture was fairly grim, but by the end of the 1970's it had completely changed so that now days the 5 year survival for testicular cancer in young men is 99%. He should have a good prognosis. However, there will be a lot of psychological issues to be dealt with and some of these are coming out in his behaviour. A wise person many years ago told me that you cannot be a psychologist, or a social worker for your teenage son, all you can be is a parent. If it is a good centre that he is attending they will have all the needed psycho-social services available and you just have to sit back and let them deal with him. If they don't have these services available then ask why not and should you be somewhere else? In many of these cases we think that delay makes things worse - that is true for some cancers, but not for all. Sometimes we just have to step-back, take a deep breath and just let others deal with things. It is hard with teenage sons, it is hard with sons in their 20's and it is hard with son's in their 30's. (I believe it is so with daughters but I have not the personal experience), As a parent all you can do is be there for them when they want you.
Take care and look after yourself - the worrying doesn't stop but it is important you do not let it overwhelm you.
Sailor
O God, thy sea is so great, and my boat is so small. Breton Fishermen’s prayer
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August 2009
G'day Everybody
It was an ordinary train. An ordinary Sunday morning. The train was full. I had managed to get a seat - one of those with the sign "This seat is reserved for the elderly or those with a disability". I figured that I scored on both counts. I was two days out of one of my unanticipated visits to hospital, I felt crook, my back was killing me, I had an indwelling catheter and a bag that was filled with fluid — bright red with blood.
The train pulled into a station and before the automatic doors opened everyone could hear the roaring on the platform. An indigenous man forced his way onto the train roaring that he needed a seat he had a bad neck. For whatever reason he decided that I was the person to give up a seat for him.
Next to me was a lady, much younger. Did she have a disability? I don't know. Opposite me, also in a seat marked- reserved for etc. was a young mother, one toddler sitting next to her, one in a pusher in front of her.
He towered over me - "I need a seat, I have a broken neck". No neck brace, head thrown back. Not the way you would expect someone with a broken neck to hold their head, but I'm not an expert. He kept repeating his mantra, occasionally throwing in the word please. Why was he picking on me? Embarrassed, I struggled to my feet, everyone looking at me as if I was somehow socially unacceptable fro not leaping to my feet. He sat down, throwing his head back - not the posture for someone with a broken neck.
The carriage heaved a sigh of relief, and I felt the blood fill my bag.
Sailor
The sea has never been friendly to man. At most it has been the accomplice of human restlessness. Joseph Conrad
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August 2009
Hi Nikki
Congratulations on the arrival of Finn. What a great new future for you all. Having just looked after two four month old boys - our twin grandsons, it is an exhausting but really worthwhile time.
Best wishes
Sailor
The sea does not reward those who are too anxious, too greedy, or too impatient. One should lie empty, open, choiceless as a beach - waiting for a gift from the sea. Anne Morrow Lindbergh
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August 2009
Hi Sang
This is part of life. I have been having three monthly blood tests for the past eleven years. A few weeks before each test I am touchy and irritable and difficult to live with. If the results are OK, then I'm fine. If they are not! Sometimes I'm OK as I've had a feeling that things aren't right and it is a relief to know I was correct and treatment is needed. Sometimes I've been feeling OK and the not so good result has me worrying for the next three months to see if things have got worse or the result was an aberration. Then I'm really difficult to live with!! Sometimes it does help to be busy - it stops you thinking about it. Making time to be together as a family is also important, and if some of the day to day stuff doesn't get done - what the heck! Don't be afraid to get some counseling - it does help and provided your GP will write a care plan for you you can get twelve visits to a psychologist on medicare through the Better Outcomes in Mental Health Initiative.
Some of us this testing goes on forever. The frequency just reduces. I met someone a few years ago who is now down to one blood test a year. He gets it done in the third week of December and calls ithis Christmas present.
Hang in there.
Sailor
The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails. William Arthur Ward
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August 2009
Hi Dunedigger
I have a friend who has a rather rare bowel cancer and is considering FOLFOX6 or 7. They are rather concerned about the side effect of the Oxaliplatin particularly the peripheral neuropathy. They use their hands a lot and are concerned about losing the tactile sensation they rely on to produce their work.
What was your experience?
Cheers
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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August 2009
Hi Julieg
Congratulations on making it so far.
I had four weeks of pelvic radiation then that was followed by radiation delivered internally. A lot of us blokes have six weeks of pelvic radiation. It is a different part of the pelvis being irradiated so the side effects may well be different - I just don't know. What side effects - I didn't get much sunburn but many people do. Because of where we are being irradiated sunburn to the backside is a problem so they suggested we have salt baths - they helped. Bowel side effects - diarrhoea, but this is fairly readily controlled. I didn't have any long term effects from that first lot. Fatigue - I would have to stop each afternoon and have a nap for half an hour to an hour and then I would be OK, but if I tried not to then it became to much. I used to describe it as hitting a wall, a friend described it as your head in fog and your feet in treacle. However, I didn't miss any work, managed to keep going everyday with it.
Can't say that your side effect will be at all similar as I didn't have chemotherapy like yours beforehand.
Hope this helps and good luck with it.
Sailor
I think the sea has thrown itself upon me and been answered, at least in part, and I believe I am a little changed - not essentially, but changed and transubstantiated as anyone is who has asked a question and been answered. Hart Crane
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