September 2012
Hi Rubes 1984
A cancer nurse once said to me - "we are good at making people look well". I get just so angry at all these people who come up to me and say "You are looking well", or this is the "best I have seen you fro several months".
I had the experience of one friend, with whom I have lost contact, telling me how well I looked. Six months later she was expressing concern about another person, a mutual friend, and said "Geoff look spale and drawn, just like you did six months ago!" Go figure!
People don't know what to say, and of course we are like Pavlov's dogs - we get rewarded if we are positive, so we give positive comments back to them. Sometimes I feel like screaming at people - I might look well but in reality I have been up half the night, I have had considerable pain, I'm sick of all these side effects, I hate hospitals and just occasionally I would like it all to just stop. Just sometimes I would like to be a grumpy old man.
Cheers
Sailor
Every master and pilot prided himself on knowing exactly how much way his ship was making. He knew the ship, he considered the wind, he watched the sails, he watched the water. In fact, it was a matter which just could not be explained to the landsman. A good sailor knew his ship, and that was all. E. G. R. Taylor
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September 2012
Hi Rubes 1984
I had a similar experience many years ago. On a special diet in preparation for treatment to start on the Monday and attended a wedding three hours drive out into the country - real bush this one, very little in sight other than the rarely used country church where the bride was married. Wedding breakfast was a buffet, in the family home, lots of food, none of which I could eat. There was nothing on the tables that was allowed in my diet. Again, the host had been advised before hand. Fortunately most of the people there already knew I had cancer, so I didn't have your experience. Embarrassed hostess hunted through her cupboards and eventually found some slightly stale white bread (wholemeal was verboten) and some eggs, so I sat there and in the midst of all the exotic food had two poached eggs on toast!
What made it more interesting was that the bride had had cancer as an adolescent so you would have thought that the family would have been more aware. WEare still friends.
Cheers
Sailor
On the day we lost the cereal account I finally decided to go to sea. Eric Newby The Last Grain Race
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September 2012
Hi Suzie s
The price of Zolodex has come down - back when I first went on it the 1 month inject was $1200. Glad I wasn't paying. As far as I understand it is on the PBS so shouldn't cost you more than the co-payment which from memory is about $30. I have always had the implant in the tummy.
Cheers
Sailor
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August 2012
Hi Suzie
I was on intermittent androgen deprivation therapy, so for most of the tim I was on Zolodex for six months, then would have a holiday from it until my PSA started to rise again, which on average over the fourteen years was eighteen months. Six months on, eighteen months off. So I had the three monthly injection twice, then monitored.
Prior to Zolodex the option was to be castrated and I did who when he had me in for another minor operation, kept me waiting to get to theatre from 2 pm when I was scheduled until 11 pm, - no food no water, no drip put up, then suggested as I was wheeled into theatre that I give him permission to do a bilateral orchidectomy, that is have my testicles removed. I still had enough wits about me and found enough spit to be able to say NO!
All of this stopped a year ago when I no longer responded to Zolodex. I am what is termed "Castrate resistant". I prefer the term Hormone Refractory as I keep telling the medic's that I have been castrate resistant for a long time.
I don't know why you are being given monthly implants when you are to be on the drug fro two years.
Cheers
Sailor
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August 2012
Hi suzie s
Most advanced prostate cancer patients can tell you about Zolodex. Generally we have the three monthly slow release injections, so I wonder why you are not on them.
Side effects - really bad menopause. Hot flushes, personality change, screwed up memory. However, you learn to live with it.
Cheers
Sailor
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August 2012
G'day Harker
I shall keep your recommendation in mind for when the inevitable bone metasteses appear. I am not looking forward to them, but they are a prostate cancer speciality. As you say, you need a few hard hitters in reserve. So thanks for that
Regards
Sailor
"How do you navigate around Australia in a 16 foot boat? You just keep Australia on the left." Hans Tholstrup
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August 2012
Excruciating pain - the nausea came later! It was a pain I had met before, ten years ago. It came in waves that at the peak had me in a foetal position gripping onto the bed head. It was not a friendly pain. It was an enemy that had to be beaten and controlled and mind games were not going to do it.
I had woken with my pulse racing and my heart thumping as if it was going to leap out of my body. I crept put of bed, not wanting to wake the Chief of Domestic Operations, sleeping soundly. Heart rate 100 - that’s what I get to on a treadmill 10/10. Was this the time to call the ambulance? Better not as that will wake the CDO. Do some deep breathing and relaxation and that is when the pain hits.
I’d taken some Panadol on going to bed - aching shoulder and a bit of a grumble in the pelvic area - nothing unusual. That was only two hours ago so more Panadol was out of the question. Search the pills shelf. Nurophen - blocks a different pain pathway - so swallow a couple and crawl back to bed. Doesn’t seem to do a thing so get up and put a heat bag in the microwave, but put it in too long so it is super hot rather than reassuringly warm. Back to bed and try to arrange it so that it brings some comfort without burning. That wakes the CDO who is not pleased until she realises the reason. Out comes another heat bag, put in for the correct time and I curl up alternately holding this to pelvic region or lower back depending on the oscillation of the pain. She find a couple of Panadeine forte left over from two years ago - they are still in date so OK to use. Take them an hour before I should and they knock the edge off the pain. She also discovers a couple of Panadeine, similarly left over and still in date. In four hours I can take them. Heart rate back to normal - 60.
Two hours later I’m on the computer looking up the Better Health Channel on kidney pain. By now the nausea had clicked in and I’m dry retching as I alternate between computer and driving the porcelain bus. It was kidney pain ten years ago when the cancer pushed up into the bladder and blocked the ureter draining from the kidney to the bladder. I’d been expecting something like this since the CT Scan, as part of the biopsy three weeks ago, showed that the tumour was now surrounding the ureter. Had it on the agenda to talk with surgeon and oncologist when I was scheduled to see them in a few weeks time. Four hours was up so swallow the Panadeine. I also remember that in the locked medicine cupboard is some Nurophen-plus, sold to me in error by the pharmacy assistant when I asked for Nurophen. In another hour it will be six hours since taking the first Nurophen. Hang in there for the hour then take a couple of Nurophen-plus. Twenty minutes later the pain is under control. 7 am - not much sleep.
What to do next? According to the Better Health Channel the pain is too low for kidney pain, although they do say it can be lower down. So is it kidney, or the cancer growing and pushing against something else? Do I contact my urologist or my oncologist? Compromise and ring the GP when surgery opens at 8. Normally my GP has a full list and there is up to two days to get to see him - I’m prepared to see any of the partners. But no! Amazingly he has a consultation available at 9. Under the shower into clothes and down to see him. Blood pressure, some pushing and prodding, rereads the various consultants reports, takes note about the CT and confirms it is most likely kidney. Script for some more Panadeine forte and suggests I get in touch with the urologist.
Ring the urologist and good news; it is his clinic day at the major hospital where the CT was done. He rings back; is in front of a computer and looking at the CT scan. Yes, there is some nephrosis and the ureter is distended until it goes into the tumour mass. I have had a cancellation for theatre this afternoon; my receptionist will be in touch. Have you eaten or drunk anything? No - breakfast was the last thing I wanted - a glass of water at 9 am. Well nothing more until I see you at midday. Ten minutes later receptionist rings - bed waiting, theatre early afternoon get to the hospital now!
Usual stack of paperwork at admission, more paperwork with the nurses, more forms to sign, into the hated backless gown, chat with the anaesthetist, sign more forms. Urologist explain what they will try to do, then the warning, if we can’t do this then it will be theatre tomorrow and we will have to open you up at the back and go in that way? Cheerful thought! Wheeled into theatre, needle in back of hand and oblivion.
Four in the afternoon, groggy but pain free. Usual plumbing in and out, urologist tells me it went well, a stent has been insert into the ureter, that was blocked for about 5 cm. So now I literally have plastic plumbing! I’m to stay in overnight to ensure everything OK but get out on parole in the morning. It will have to be repeated every six months. Something to look forward to!
Quiet night. Nurses clearly not used to independent patients who take their trolley pole and drainage bag to the pantry and make themselves a cup of tea, administer their own pills and rearrange room so that the TV can be seen from the arm chair rather than the bed. They get used to it and become very chatty and cooperative.
Next morning, plumbing removed. Good breakfast and then noise. Carrot-top and Blondie have come to collect Papa from hospital.
Still pain free. A few unwanted side effects that I hope are temporary, but if not they can be managed.
Someone was looking out for Sailor.
Cheers!
For the truth is that I already know as much about my fate as I need to know. The day will come when I will die. So the only matter of consequence before me is what I will do with my allotted time. I can remain on shore, paralyzed with fear, or I can raise my sails and dip and soar in the breeze. Richard Bode First You Have to Row a Little Boat
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June 2012
G'day there
I agree with SIILY - if he was cleared before then this is a new cancer. However, you do need to check with your oncologist on this. Insurance companies can be awkward to deal with and they may claim it is pre-existing. However, they should still give you travel insurance that excludes anything to do with his testicular cancer. If you get run over my a bus, it is hardly anything to do with your cancer, but you still need health insurance!. A good source of advice is the cancer helpline 13 11 20.
Cheers
Sailor
Even with the best charts, we are cautious about fixing our position, for it is so easy to goof. And the easiest way of all is by taking a mark, assuming it is the right one, and ignoring any others that may be in sight.
Patrick Ellam
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June 2012
Hi Everyone
What MG0080, Silly and Pamela are talking about is care coordination. That the appropriate information is given to us, that the appropriate information precedes us to the next clinician, that the appropriate care is waiting for us, not happening because something goes wrong. I don't think it is too much to ask in this day of rapid communication.
Cheers
Sailor
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
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June 2012
G.day Allicat,
Go back to your specialist and ask him if he knows any facilities in Chicago area. I googled "cancer centers (American spelling!) chicago" and got a long list, some of which I had heard of. Get a letter from him to one of them, or better still someone he knows there, and take that with you. Also be prepared for US customs to confiscate your drugs - it happened to a friend of mine. You will also have to be prepared to pay, because, as you say, no insurance. But again if you have private health cover talk with them. Just look on it as part of managing you life and what has top be done for you to travel. Don;t let it put you off traveling.
Good Luck
Sailor
So when storm clouds come sailing across your blue ocean
Hold fast to your dreaming for all that you’re worth
For as long as there are dreamers there will always be sailors
Bringing back their bright treasures from the corners of earth. Eric Bogle, Safe in the Harbour
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