Hi all, I have been absent from the group for discussions about Pca.
To cut a long story short, I had multiple treatments for Pca over last 10 years since diagnosis at 62, Gleason 9. All failed over time but 4 shots of Lu177 over last 12 months has Psa at 0.32, and all mets much reduced and Pca no longer a threat or giving symptoms.
I've been a keen road cyclist since 2006, about 127,000km since then.
After a rest during last winter I returned to cycling in our spring, September, and got weight little lower and got speed up and up to 15 days ago I was doing real well on the bike and I was fully healthy again.
Then 15 days ago I had a blockage occur in my small intestine requiring minor surgery where the docs found I has adhesions of small intestine to the scar tissue from failed open surgery for PG removal in 2010.
This completely stopped by whole digestive tract from working and I had 11 days of pure hell with nausea, stomach pains. Two friends have aided in my recovery at home where I live alone, and I am eating OK again.
But before I went to the emergency entry at hospital at 10pm on a Friday night, I weighed 81.5Kg, and now, 15 days later I am 6.9kG lighter, looking a bit like I spent a bit of time in prisoner or war camp.
My BMI is now 21.8, and I feel quite weak, and after 4 days at home I have not yet made any weight increase.
So the warning I give to everyone is that you can have parts of your intestines adhering to scar tissue formed at the site where the skin is cut through to gain access, and adhesions may take years to form, and last for years without giving trouble until a certain threshold is reached when suddenly your digestion stops completely with major discomfort, pain, and probable arguments with some nurses and maybe with some doctors.
I was told the problem with adhesions could not be prevented, and they may happen again.
Before my surgery, docs suspected major problems due to previous 3 courses of EBRT to my pelvic region over last 9 years. But they had a good look around and apart from adhesions they found all my stomach contents was in very good condition. They looked for any Pca tumours that may not have been seen in previous scans and found all was clear, and all was normal.
I am now trying all over again to get back to good health. I have had to learn how to eat again, beginning with baby food.
But the 11 days in hospital with an op cost $00.00, because our wonderful Medicare in Australia paid for everything.
I wish you all a nice few weeks ahead into Xmas.
Patrick Turner.
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Oh my goodness! That sounds terrible. I'm so sorry that you have had to go through so much. I'm glad that you've had support!
My sister had the same thing happen years ago after an emergency surgery to repair a split pancreas from a horse kick caused scar tissue to form lesions in her intestines and created a blockage. It was terribly, terribly painful and she too lost a lot of weight. Fortunately it's been over 20 years and although her doctor said it could happen again, she hasn't had any more problems! I hope the same for you.
I reckon you are older than 13 going by that pic......
When I was about 11, my dad who was a vet used to take me with him when he had to inoculate a herd of dairy cows. Now he knew well that getting up close to a cow's rear end when it was bailed up to a food bin was OK if you wanted to milk the cow, but risky if you wanted to stick a needle in, cow could kick.
So my job was inside the shed in the aisle between the bails, and I'd have a stout wooden stick and scratch the nose of the cow and it'd only be mildly annoyed, and my dad could do whatever he had to at the rear end without ever getting a kick. It was "easy inoculation by distraction".
Meanwhile me bike looks all sad and handlebars drooping, wants to get out of my shed, take me around my town on nice long rides...….
And best Christmas and New Year wishes to you too Patrick. Sorry to hear you've had such a bad time. These things come out of the blue. Hopefully you're on the mend. Yes Medicare is amazing and the public health system on the whole so good. Go gently with getting back to life. Time and care taken now will pay off later. Hope you post next time that you're well and truly on the mend.
Just when we think we’ve created an exhaustive list of potential problems, something that never would have occurred to us pops up— life never fails to disappoint in the domain of surprise occurances.
I am very glad to hear you are better and nice to know that you don’t have to file bankruptcy as a prelude to medical misfortune. It can be the case for us US citizens.👀
Glad your on the road to recover and sorry to hear you had to go through all that! We have enough to be concerned about without extra stuff being thrown at us like that!
The important thing to remember is that shit can happen any old time and its nobody's fault, and it cannot be foreseen, and we just have to adapt while being grateful if we get through it.
I have to wonder what this episode might have done to the complex action of my liver which has a considerable control over vague things like appetite and how we metabolize our food. Next few weeks will tell me if I really will get well or not. I may need to consult a nutrition specialist with experience in bringing ppl like me back to full health. But I ate plenty today.
I could be quite heathy if I went back up to 78Kg from the 75Kg I am now.
I'd be faster going up hills on bike if all other things were are able to work like they were 3 weeks ago, when I found I could to an 82km ride at average of 23.9kph and weight 82Kg on urban roads and cycle paths.
I always think about what is possible, despite limiting factors. Part of me behaves like a natural athlete. I prefer my Cannondale to Maserati
Appreciate your friends, and each day being alive....
You seem to be a ‘fighter’ so I expect you’ll be well enough to be back on your bike and tearing up the roads and bike paths of Canberra again soon. Certainly hope so. Always enjoy reading your posts. Cheers from the hot and humid north ... Darwin. May the bush fires stay well away from your domain.
Patrick - You had a bummer of a trip recently but inspiring and FANTASTIC statistics with your cycling. Super stoked that you have found that joyous section of this cosmos that spinning cranks brings to some of us while we're dealing with this pothole in our travels called PCa. Hope you get back on your C-Dale ASAP and start racking up those km's again.
I'm getting ready for today's bike ride right now and after reading your post I'm thinking that I'll put in some extra "USA miles with smiles" for you and your bike. Agree that we can't let this invader take us down and stop us from enjoying living as best we can so that's why unlike most G10 guys I started with a bilateral orchiectomy instead of ADT. I like to joke that if Lance A. was going good with only 1 then I'll do better with none plus with the boys out of the way my comfort level sky-rocketed and climbing was sooo much easier with all that weight gone.
Get well AND back on that saddle cranking out those km's.
The longer we live with these diseases the more we know and the more we are surprised. We can't even anticipate everything! Yet, you'll soon be back on your bike again, weighing more, enjoying each miraculous day, and rejoicing you've not been bankrupted like some other patients from other countries.
I'm getting some weight gain now, and less pain from where the docs sewed up the skin. They used a sturdy strip of transparent plastic tape to cover the joint and there's no red spots, so I guess this will be removed in another week maybe, and I should be able to ride again before Xmas Day.
I am a long way from being bankrupted by medical expenses, and have had enough savings to never have needed to pay for health insurance premiums, and thus be able to pay private hospitals directly where the public hospitals could not provide the same treatments. For example, I had eg, extra salvation IMRT with Calypso to PG in 2016 which cost me aud $26,000, but Medicare paid back about aud$12,000, which the hospital said was about what the insurance companies would have paid back, even after 45 years of paying premiums.
but the hospital paid for my accommodation for 5 weeks in Melbourne at a special lodge for distant patients which would have otherwise cost $5,000 at bloomin hotels.
But Lu177 plus scans cost about aud $42,000, and I paid directly for that with no Medicare refund. But the total $$ for all other care items since diagnosis in 2009 and at public hospitals was all paid by Medicare and $$ value paid might be $150,000 so far.
And why?
I was diagnosed way too late, because in Australia the public system does not want a man's PG to be fully examined until Psa > 5.0.
But I had a low Psa for the Gleason 9 + inoperable PG when Psa was only 5 in 2009.
So I should have been examined when Psa was 3.0, in about 2004, and I bet a Gleason 5 might have been found, ie, tumour < pea size, and an open RP would have been effective and the expense would have been < $5,000 then.
So because of Australia's poor effort in preventing Pca develop in men the national cost of Pca is hugely more than it could be.
There are more men who are never going to have trouble with Pca than those who do get Pca, and their Psa < 0.7 at 40, >1.0 at 60, and I have a cousin of 75 whose Psa has never been above 1.2. But he can't discuss Pca. He takes forever to pee, is also very overweight, so he has a mind that kinda is in denial about health stuff. I suggested he take Tamulosin to get a faster pee flow, but he ignored me.
He thinks he's OK until shit happens. I cannot be like that.
But regular Psa tests for 10 years before my diagnosis did nothing to prevent 10 years of "chasing the horse after it bolted".
Lu177 may only give me a short time benefit of another year maybe.
Quoting you: It ain't over yet (until the fat lady sings). You're an inspiration to us all, so much so that I got my son's old three wheeler bike and cleaned and shined it up and......................... sold it....
Eat all the stuff that will make you fat so you can work it off when you're biking in Alice Springs......
Alice Springs is supposed to be a beautiful place with nearly desert characteristics and months of days over 35C. It is one of the least desirable places to live for me. Few ppl live there and those that do are often of native origin, unemployed, alcoholic, chronically dysfunctional, uneducated, and dependant on welfare.
It is a national shame that they remain like this as do so many other indigenous ppl in remote areas of Australia.
The life expectancy of such ppl is about 10 years less than white ppl. The eating habits of the indigenous are based on what is available at the local stores which specialise in selling high priced junk food that causes the indigenous ppl ( plus many whites ) to be obese, so diabetes rates are very high along with kidney failure.
Violence rates against each other are high, women are abused regularly, child abuse is rampant. Rates of imprisonment are high.
Despite the poverty and malfunction of indigenous ppl compared to whites there have been some astoundingly bright indigenous stars, Cathy Freeman at 2000 Olympics winning gold, and countless male stars in football, and it may be said that some of our indigenous ppl have far greater natural athletic potential than most whites who often consider the indigenous inferior while sitting on their fat arse spouting bullshit.
I don't wish to cycle in Alice Springs, or in 1,001 other locations around the darn world where the desirability of cycling is a negative figure for at least 10 reasons.
I'm in a city of 400,000ppl, but its The Best place to cycle around. Hospitals are not too bad either.
Its another smoky day here in Canberra, but so far there's no fire threat nearby.
Although a vast area of bushland has burnt up in east side of Oz over last month, there's still a lot that could burn, and if we don't get rain it will burn. The extent of bushfires is highest I can remember, and its amazing more property has not been burnt.
And summer has not even begun, so I expect the bush around my city to burn during summer. In 2003, it burned well during a long drought, and 4ppl died and 500 houses were lost in one perfectly horrible afternoon, and I was in town, at a café, and at 3pm it went dark, and ash landed in my coffee, as the inferno took its toll only 20km away.
My problems are nothing compared to those who have lost everything from a bush fire.
Its a clear sky now without smoke from fires. 38C, (100F), slight breeze.
I just had a short swim, and that went OK, so maybe a short cycle ride in a few days.
I might get outside tomorrow morning to rake up leaves, easy-peasy werk.
We just don't get the severe cold of US, nor do we get the tornados.
I saw a picture in paper here of a street full of burnt houses in US and there was just nothing at all left except the roasted rows of pine trees, along the street, so I guessed all those houses must have been built using only flammable materials. The paper article was about the ppl getting dough from an insurance company which went broke.
Surely I cannot be as distasteful as kissing your ex wife.
I had a wife for 18 months up to my 30th birthday, then she vanished to 4,000km across our little nation to Perth. She found she had become completely infected by the worst varieties of Feminism.
I then learnt to be better at saying what I meant, meaning what I said, and practicing it, and that made life a lot better ever since, and although I kissed a lot of ladies since, I never got disappointed when they said loved me but could not stay on the porch.
That was when there wasn't any need to kiss, just open the door, then close it gently.
I would now not have any desire to kiss any of these ladies, wherever they are, and Pca has made certain that its better I ride a bicycle than try to ever ride a woman.
I've lost count of the size of my website, about 65MB, including a small amount about medical stuff.
But my Psa graph shows how well Lu177 has worked for me since 12 months ago.
Good Going.... If you recall I looked at your website (Turner Audio) regarding the audio business and that's when I declared you a genius.... Well there comes a time when riding a bike is better than riding a woman.... No freaking back talk............
I am dedicated cyclist too, good luck on the recovery, I am 4 years post RP with low detectable usPSA levels since 21 months. Am 60 years old now, on strava and zwift strava.com/athletes/9894
I am still recovering from time in hospital with blocked guts.
Got back on bike OK, but found I was anemic, so having to eat some meat, take iron tablets but now feel better. But for last week we have had terrible smoke levels from the bushfires burning all around eastern Oz, so no morning rides. Its first time I have ever seen such fires here, made likely by long drought, no rains, and high record temperatures caused by global warming that so many ppl refuse to accept is happening. If the present change of weather patterns were to become permanent then much of NSW and Victoria would convert to desert, and make farming out west impossible, the same as it has been for thousands of years for most of our nation's vast interior regions.
Its not yet all known what a prolonged bushfire season will do, maybe that could change weather patterns because all that smoke has an effect on cloud formation and rainfall.
Much bushland has been burnt out, over 1,000 homes, the number of deaths creeps up, but there's still a vast area yet to burn, so unless it rains, burning bush will keep on going until there is nothing left, as it has done for thousands of years when conditions were like as they are now, and without the large number of men fighting fires on the ground and in aircraft.
Hoping to do a ride early tomorrow, smoke permitting. Was far too much over last 2 days. Over 40C forecast, so the only time to ride is 6am to 9am.
I hope your low Psa continues. My Psa is low, but it could start rising again any time soon. I've been fighting Pca since 2009, but I've cycled about 140,000km since 2006.
I am 72 now, and I don't bother cycling up steep hills any more.
Ohhhhh n0ooo Patrick! That must have been so horrific for you! You must be so thankful to here. Im thankful you have some kind and helpful friends. Wishin and hopin that you're back to yourself in no time flat. Get well soon 🙂
Also so sad for your Australia fires and furry friends 😭😭😭😭😭😭😭
Hi Jackie, having a real bad small intestine blockage is something I'd not wish upon anyone, and after losing 8Kg, I have recovered after surgery to cut adhesions from surgery in 2010. My weight has settled at 77.4Kg, about OK for me, because I was 82Kg before I had the problem. It seems I am nearly fully recovered and I was able to cycle across town with average speed at 24.3kph, which is real good for a 72 yo who has been castrated chemically since 2010, had numerous other drugs to suppress Pca, had both knees replaced 2017, had chemo which failed in 2018, then had Lu177, gave me a reprieve from death, and now I am on Xtandi, and none of these things allow very good athletic performance considering that I was born with "Go slow Genes" as well as "Get fat easily genes". I think I have "will not become depressed genes" and one silly belief is that I won't get anywhere sitting on me bum.
Had a real good day today, and after cycle ride I spent many hours completing some crafting of test gear in workshop for my hobby of old electronics using vacuum tubes.
I have yet to meet a lady over 50 able to keep up to me on bike. Be nice if I did, especially if she has had just as many ruinations of her sexuality due to medical treatment as I have, and then we could be good friends, have sexless vibrant intimacy, but it is not to be, many ppl think I am very strange by wanting to cycle 200km a week, and live alone without regret or depression and tears.
I'll die alone, and won't mind.
I don't know how you are coping with life as you live it, but the brighter side always appeals to me. No good moping about, but also I see no need to become a grand consumer of trips overseas and fast cars, better house; I am happy being frugal.
For those who thought I was burnt to a crisp in bushfires here, well, I wasn't, and situation has calmed down, and there's bee a little rain but still mostly not enough. People rave about climate change causing our fires but we have had bad fires before and bad droughts with no rain and the climate change that has happened so far has simply made the droughts and fires worse, and ppl of Australia are foolish to think we can fix the problem if we de-carbonise our country soon. Its the huge countries that won't do anything except make empty promises at meetings about climate change, so if we had permanent trend of low rain fall and hot temperatures then we will have to get used to the climate of inland Australia moving east at west, ie, the vast desert area of Australia will just increase. We won't be able to export food and will have adapt like so many others in middle east who live in dry dusty lands with little greenery.
We should do more to show others what can be done, but us humans have a silly habit of doing too little too late, and waiting for someone else to do something. No use being upset about any of this. People here voted for a Government which didn't believe we are making the planet worse. I didn't vote that way, or have any kids when I may have when 20 to 30.
I've done my bit, and its backed up with frugality. But of course life is inconsistent, because why would I want to live on trying to get ever more expensive remedies for Pca? Would it not be better for the world if I just die soon? Being Sunday, I see no reason not to contemplate the to-be or not to-be issues of existence. My neighbour said the Lord will return, and soon, and establish The Kingdom of God on Earth, and I asked him how many ppl will the Lord murder to get ppl to obey the new rules? I could not explain that its better to just be good without any God. He can't handle the obvious solutions to our problems, too much vice and not enough virtue.
I'll cycle again on Tuesday, and I see my onco in 11 days to see how my Psa is going, and he likes to see me arrive in lycra, parking the bike in waiting area.
He knows I am trying to stay in good health, so he likes to help me achieve that, and all good doctors do this.
Take care Jackie, you only get one shot at life, and all anyone can do is engage with those around you as you find them, with pleasure and no anger, and hope they have a sense of humour and wonderment about the world.
Yes Jackie, I some ppl lose the ability to do what makes them happy so they may get depressed. But even when I spent times I could not cycle, I found other things to do.
Nice to see some morning sunshine here instead of a kind of smoky fog.
I have a moderately busy day ahead, electronics, and fixing a leak in my swimming pool.
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