For those of us with advanced prostate cancer, do you still make long term plan of any kind such as building a new house that may take up to three years?
Or any other long term projects or plans which will take more than couple of years, if so, what plans or projects are they?
MP
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akaipop3ps- You have to believe you are going to be around long term. Then seek the appropriate treatment to help you achieve the results you require taking into account quality vs. quantity of life.
Myself being 47 years old with stage 4 Gleason 8 metastatic in pelvic lymph nodes and pelvic bone I am still envisioning 30 years down the road. *I want to see my 4 year old and 12 year old get married and have children.
Get up and live each day my friend. We all have only 1 day at at time and we can all focus on crafting our mindset with positive goals for the future.
So many treatments to take advantage of and so many more being testing and developed. Get a good team of doctors to guide you through the journey.
I dont think my long term goal is a project, but i’d really love to get back into up to jogging, running again.
Guess thats a body and health and mind project.
How does a 68.5yo APCa S4 metastatic prostate cancer do that? Focus on one exercise day at a time.
Slow jogging and hill climbing are good for my cardio, bone, and neuropathy health well being. I am told.
I just completed an entire 3 months long re-landscaping repairing ruts, damage to our front/back yards due to new concrete front porch, all sidewalks, back patio. 3 months of dirt moving raking hauling digging sawing shrub and tree roots is not a long term project.
Am i going to improve my quality and or quantity of life(cancer monitoring on Lupron/abiraterone, pred by jogging, running? I’ll take if one day at a time.
Ive told my Med Onc strongly i’m not gonna cease exercising, never. He smiled and said keep doing what your doing.
I dont want to see another pile of brown top soil dirt ever, not in the near or long term.
You da man depotduog! Out there rolling around in the dirt . Improving the property . I’ve been trimming and hauling brush and debri our entire year in the new digs . Not going to planet fitness anymore. This hillside is my gym now . “ digging in the dirt “ has it own set of joys..
Yeh, like an unexpected umbilical hernia and escalated Troponin blood levels coronary dirt stress test(that got me an all expense paid overnight in my fav heart hospital.).
But, really but my umbilical hernia didnt pop out or show itself until after my Troponin/AFIB visit, 09/14-15.
My hospital ER overnight visit was due only to “ what i thought i was back in Persistent constant AFIB” then they found Troponin escalated. My HR was all over the place. My skilled EP got my attetion or i got his in the ER.
He checked my EKG’s (all 3 of them), and interrogated my ICD/pacemaker device. Yes i had abnormal pulses, interference, noise coming from my RA right atrial lead. Go figure, dirt enduced lifting cardiac stress.
Back to
Dougs umbilical hernia, it was discovered showed itself a couple weeks after ER visit. Courtesy of more dirt moving at home.
Tomorrow @ 11:00 i’ve got a virtual doctors visit from home: subject my hernia solutions. Then followup office visit next Monday 07:45. My PCP must think Mr Herni is serious, or important.
Yeh, because its causing me lots of anxiety. To fux it or not stay tuned for further developments. Friday and Monday next.
Doug, you should seriously consider surgery for your umbilical hernia before it turns into an emergency. I ignored my hernia for several years while it got bigger and bigger. Finally woke up one night in excruciating pain, followed by three days of nonstop vomiting. Finally dragged myself to the PCP, who then immediately ordered an ambulance to go to the ER. Turns out eight loops of bowel had escaped through the hernia and were strangulated. Was told that I could have died. The surgery is easy and the recovery isn’t that bad, especially considering what you’ve already been through.
Thanks! You’ve just encouraged my decision process. Mine ‘umbilical hernia’ is not that bad yet but worried about complications. Like ypu said stomach small intestines ouch in that area i think. My PCP is concerned too or his office wouldnt of made this Friday’s virtual appt so fast. With follow up next Monday 07:45.
Just eorrying about it is keeping me awake nights or is it my Prednisone. Both. Yes i’ve gain weight from Lupron/Abiraterone/pred tge last 12m especially in my stomach.
I am extremely glad you responded quickly Dett. Stay tuned 11:00 is only 7hr20m away.
Just got a call from my PCP family doctors RN. They realized i had two appts: 1) vitrual today 11:00 and in person Monday next 07:30.
I stuck with Mobdays, she RN understood.
I will send my updated questions/comments to my Doc today after lunch.
Its great to have a med provider who is proactive and real time reactive. He Dr T does read all my IU Health patient portal messages. Its great that his office is a 5 min drive from our home.
IU Health is building a huge new ambulatory surgery facility 1,200 ft nirth of our home. Convenient once the doors open late 2021... wish they had multi-disciplinary Urology and Oncology specialists there. Oh well Indianapolis is only 2hr drive.
Stay tuned for Mondays umbilical hernia decision crunch time. ( that did not sound nice, crunch time)
A long term project might be just what you need to keep your thoughts off of pc . If you have the funds and energy . Go for it! Good luck .. build it well🔨
Desire to live....Magnus ..that reminds me of a study in 1980s where researchers found out that those who had intense desire to live..in fact survived longer. They found this statistical fact but were not able to explain how it works.
We hope to move out in late November but our new home won't be finished until April next year. So for a few months we'll probably be grey nomads travelling around in our caravan.
Our motorcycles might have to spend a few months in a storage facility, but I suspect we'll still use them whenever our caravan is nearby.
Here's a short video I made from a ride earlier this month...
Sweet bike and beautiful ride. Living the good life. Enjoy and be safe. I just had to put my Africa Twin to bed for the winter here in Oregon USA. But soon will be driving down to our beach home in Los Cabos, Baja, Mexico for surf, kite-surfing and long walks and jogging along the beach. My wife shares all of these and my boy poodle puppy Mateo too. (Hence the monicker MateoBeach. 🐕🦺😎🏍💪👍🏼
Dave is in Australia, where we drive on left side of road. His Royal Enfield is indeed a classically nice motorbike to ride. The winding road through the gum trees is pure Australiana and brings back memories of having owned a Matchless 650 ex police bike at age about 20 in Sydney in 1967. It was not very reliable, like most UK bikes, and was noisy and it vibrated, like BSA, Nortons and Triumphs.
I matured to getting BMW R75/5 in1972, almost new with only 9,000 miles on clock, and this was just so much better than all the bikes I had previously, and I rode that until 1981, until time came to buy Holden 1 tonner for my work.
Then in1987, I began to think about health, so I got serious on bicycles, and joined a club and raced as a "veteran", ( over 35 ) for 6 years until my knees caved in.
Oh how fast youth goes by....
Last 2 years I began to think I might last longer than I have expected for last ten years, so I fixed a few things around the house, and planted 3 camelias around at the pool side in a good spot. One died, other is half dead, and remaining looks crook. Symbolic? I dunno, but of three I planted in 1983, one still thrives in a 2 cu.ft box and has flowered such red gusto this spring I have to give it first prize for endurance of any living thing at my place. If I plant more of that type of camelia, I don't know if I'll be around to see them bloom next spring. Pca can change and get more aggressive.
Today I will get to shed to make a tube amp work a bit better than it does. I quite like soldering up tube circuits.
I have hedge clipping soon, which I spread out over a week, its The Worst yard work I need to do. I got other clean up work to do that also gets treated same way, do an hour or two early morning, then quit, and do something easier, but then next day maybe I cycle 100km, not easy, but its somehow doable and its travel.
Well Patrict you're one of a hella bloke to do what you do... I'd really like to see picturesof your house and area. You'll be around many more Springs (including Alice) to see your camelias bloom. You call it hedge clipping we call it trimming... same difference.... Hopefully you're using an electric hedge trimmer (clipper) and not trimming them manually.... You can always use some radio (tubes) frequencies to trim them if you do. Keep up the good work and keep riding your ass off.... Take care and tell those people down under that they're driving/riding on the wrong side of the road....
Just Google my address, and satellite will show all. The drive past street shots by Google may be getting old.
All you need to know is I have a single storey brick house in a leafy suburb with an outside hedge around the corner block.
There are numerous things I am quite hopeless at doing, ether because I cannot or will not, and I can make a list, Being married, Gardening, House painting, being a con-man, being expert cook, being a nest freak inside house; there is mess everywhere, but nowhere near like a hoarder, Becoming a millionaire by hard work, Being my own servant .
You should have realized by now that if I achieved all the things I mentioned above, I'd have to more than one old man, in fact it probably wood knot matter if I was 6 old men, because they'd all argue, but I could be 3 men to get all the stuff done, one old, that's me, and 2 younger versions of myself without the obvious defects. By now, you get the drift about reality associated with modern living whilst trying to keep all things looking clean, tidy, and up to the latest style of good taste in all things, with just the right kind of sheela who didn't argue or tell me I was dead boring man, and quite happy I made no attempt to be a Hot Rooster with her, because obviously, the sheela aka ( Moi Woif ) would have some resemblance to and old chook.
What I do realize is that my QOL is about 100 times better than about 2 billion other ppl who own no property, live in terrible poverty, and if they get any kind of cancer they die without anyone taking any care to make them live longer.
So just why should I be better than just who I am now? I cannot change anything now.
The house was a small 2 bedroom shack in 1976 when bought it, and what was called a "bit of a dump" but I beavered away in spare time to add 3 more rooms, and a shed where I could park two big cars, then a carport, then a pool, so its a glorious pad for a single man, who now uses shed for hobbies on electronics The side effect of working during spare time which I found therapeutic was that females thought me such a doer and goer for a year or two, but that didn't include expensive travel for which I had no money. The idea of them cycling with me was terrifying. I am not a terrorist, so I never forced any sheela do anything she didn't like doing. When they complained about house work, I'd just say what I had ben doing mowing grass, clipping hedge, raking up leaves, cleaning gutters, extending house and putting roof over their head for free, and then summing up that my total effort was bigger than theirs. This was a truly bad lot of things to say, but at times they had to be said, but such statements of status quo are the opposite of romance. I met so many ppl living lazily in such good conditions and they'd be making so many complaints. Sloth kills love. But trying to be a hero and do such a lot also kills love.
I am quite happy getting away from whatever sort of man I once woz. It wood knot be bad being 25 again, but all the dreams I could never fulfil would become nightmares. There would so many should do this and that, AHHHHHHH.
I am now like an old tree, and it won't take much to push me over.
It rained a bit today, and I came up with a couple of good ideas for am amp with tubes, but it was a shed day, not a ride day.
But tomorrow is a ride day, and I hope do 70km to make up the 200km to keep me fit.
Just fiddling around with craft work in a shed is sedentary, and just nowhere near enough activity to stay healthy. The weight gain of 2Kg during winter has gone.
BTW, Yes, there are ppl here who drive on wrong side of road, usually not for very long time, and they kill other ppl, and I have to be careful nobody drives over me. When on the bike, I am pure animal, and watching out for where danger lurks, or is about to happen, and when to slow down. IMHO, it is all a lot better than doing cross word puzzles, playing chess, computer games, or spending any time at FarcePuke or Twatter.
I just google mapped your address and I saw a guy circling your house on a bicycle with a couple of radio tubes in his hand. I also noticed a line of Sheela's outside your house. each with a numbered ticket.... (The type of tickets you need to get your order filled at a fish and chips restaurant run by a Greek). Opa!
You did all that work to your house.... I don't believe you.... You're a JACKoff of all trades.... Keep cycling and posting here..... everyone loves your posts (you're spot on)...We need you here!!!
I trained to be a good builder from age 19, when I became carpenter's apprentice and doer of all things doable on commercial building sites. I went to tech at night to get a Building Certificate by 25, when my supervisor made me a foreman. I was good at handling the blokes and solving problems, and getting stuff done.
I accepted a transfer to Canberra from Sydney, my home city at 26. But later I left company when work got short in recession, and spent 22 years as self employed builder doing house extensions. I reasoned early that because buying a house to live in was a major expense, it made sense to become a builder and do as much as possible myself and save having to pay another builder's fees, and his tax, and his sub-contractors et all, and the land + house package in 1976 was 1/2 the price of Sydney prices. It was best decision I made to move to regional small city which had enough basic amenities, and quit a lot of possible clients to work for without a middle man. But a wife I married in 1976 soon grew to hate everything about Canberra, and hate me, her mother, so she pissed off late one night. Not a huge bother, and I got on with life and was natural survivor. Love sure is a blissful thing when its good, but then it turns so easily to the opposite of love, and then becomes increasingly difficult to find because women are basically very hard to adapt to or please for very long, so they go all negative and get bored. They asserted newly found Wymmin's Rights, which I thought quite fair, and insisted they practice in any life with me. But that didn't work, because many sheelas didn't understand that with rights comes duty of care, and a marriage ceremony is an agreement, and broken agreements mean trouble, and lead to evaporation of love ( whatever that is ). So it seemed to me most women I dated plus the one I married really had no idea about WTF they were doing with a man like me so this led to many tears and arguments and I could never solve any of their problems - that's their problem to solve.
But a few crumbs of love that did roll off The Table of Life were at least enjoyable for awhile.
Ah, the ladies in queue at my joint are a collection of wonderful gals who have sneaked into Canberra from horrid big cities around the world to get away to where nobody will notice them. They find they really love mowing lawns, and clipping hedges, and cleaning pool, and getting firewood and washing dishes, clothes and having interesting conversations at night. They were able to fix me and themselves up in previous better times when doctors had not found a reason to de-sex me to cope better with Pca. Anyway, some gals are getting older and like nicely mature gals they have grown to never need playing the nightly game of Hole & Pole again.
But Nicole and Jennifer really like the hedge clipping. But I had to settle an argument on who clips the hedge, and who rakes up the clippings. Nicole was not frightened to get up ladder in bright red hot-pants, but that caused a couple of car accidents due to young blokes getting distracted as they drive around my corner. Lucky nobody was killed. I had a little quiet talk to Nicole, "Now please listen my sweetness, the young blokes around here have never seen such a good sort as yourself, so please change the shorts to beige, and wear a hat with a brim all around". She agreed, "Yes, that does seem so sensible" and off she went to change. Problem solved.
That I am a Jack-off all trades is pulling the praise a little too much toward fame, because I am but a simple bloake. I deliberately always worked toward trying to be un-complicated. At our age, there is not one reason left to want to become famous, but there's still quite a lot who relish fame and power, two things that make such fools of so many old men. We only have to consider the two blokes now wanting to be President of USA, and you get what I mean instantly.
Anyway, I had such a good cycle ride today, 81km in good mild sunny spring weather.
Total km this last week was 239km, enough to tone up the body and mind, and generate an attitude of peace to all I meet.
I am uneducated in American colloquial words, or wat we might call slang.
PISSER? its a noun, so does it mean Possible Interesting Stupid Silly Energetic Responder?
In other words, someone who bullshits.
I was told at 23 by a labourer on a building site, "youse is tha bloke they can't root, shoot, or electrocute.." and I felt quite flattered.
Being called a pisser here in Australia means you have no trouble pissing, and of course after an RP, a bloke certainly does become a good pisser, and may need to wear a nappy. I always feared I'd dribble piss while on the bike but that has not happened despite all the EBRT and IMRT. I did imagine I'd have to wear a kind of condom with a tube to let pee drain into a bag but I don't know how well that would work. I thought fighter pilots on long missions wore such things. Ya cannot just pop down to land at any old little airfield and duck out of cockpit for a piss behind a tree or have a shit. aka take a dump. But now the word cockpit makes sense, it is a very cramped little room occupied by a bloke with a cock. Sheelas never flew planes in early days or we would have fannypit. But Pca sufferers have something in common with fighter pilots, we feel like we are temporary.
Good question and one we who have advanced cancer think about all the time.
Personally, I spend a lot of time managing my investment portfolio to maximize returns while staying diversified so as not to get caught if the market crashes. I don’t have many years until retirement. I am retired and have been since 1998. I was lucky to retire at age 54 but was diagnosed with PCa at age 69 . I’m now 76 and doing well and my investment portfolio has grown substantially. My family will be in good shape when I finally pass.
I find there is some phycological value in working on projects that may take longer to finish than I have left. I was telling my wife that no matter how long I live, I'll be in the middle of something when I die. I'm just not giving up early. I find it very empowering.
I was recently reading about Benjamin Orr, one of the lead singers for the band "The Cars". Sadly, he was diagnosed with pancreatic cancer is his early 50s. Despite the poor prognosis he was determined to just kept doing what he loved. I'm really inspired by what he said:
“When Ben got out of the hospital he said, ‘When I fall down and can’t pick myself up we’ll know it’s over. Until then, we rock!’” – Jeff Carlisi
Hi , yes. I started Jan 2016 so nearly 4 years , PSA kept on ticking down for a year until it got to 0.12 where it has stayed pretty much for 3 years . My most recent full body MRI showed Chest lymph normal size , pelvic Mets all same or smaller than after chemo .
I know it won’t last forever but I will take it, my 6 year cancerversarie is November 6th , never thought I would be here to enjoy the last 4 years .
Sorry about the tears but we all get them at times . My youngest is 15 now , feel so privileged to have had those extra years , months, days with him (he may not say that same though ha ha!).
Today by chance is my 300 th consecutive days running , I am sure that has helped in so many ways .
This was published yesterday on a sports clothes website (unpaid as it’s all about awareness ), no tears please !
Yes, writing a book on coins related to Bible, been working 6 months, another 3 months to finish manuscript, 2-3 months formatting and set up to print, then 12 month market plan, 2 years total. Additionally working nearly full time with a ministry to accomplish a 3-5 year plan. Focusing on these,especially with lockdowns very important to my motivation.
I collect sports memorabilia and have a couple of long term sets I’m building. When I was first diagnosed I told my wife it was time to sell so she wouldn’t have to deal with getting rid of it. She ripped me a new one and said that if I wouldn’t fight for the time to complete my goals she would fight for me. So my I now have a 10 year budget. CoVid has hurt traveling to shows for the stuff but that just a minor speed bump. As someone said you have to live like you are going to beat it or you won’t.
Those were some great Tiger teams, especially 68: Horton, Freehan, Kaline, Northrup, McLean and Lolich. I was 12 but still remember that series again the Cardinals and Gibson.
During my first two years after diagnosis, I felt paralyzed and couldn’t think beyond 3 months in the future. Something clicked around then and my thinking evolved. I’m three years since diagnosis now and have gone back to school and started a new career and I bought a new piece of property two months ago where my spouse and I are breaking ground soon on our “dream” house we are building from the ground up. Life is such a treasure!
Since I got diagnosed in 2009, I have never ever known how long I'd live, so a pile of things I might have done around my house were not done. I'd love to cover my roof tiles with solar panels which would not only make electricity that has become so darned expensive to buy, but also shade the roof tiles so they don't get so hot in summer with our larger number of days over 40C here in Canberra in Australia.
I have spare rooms that need new floor coverings, one WC needs replacement, painting needs to be done, but just why when I could be dead in 2 years? I live happily alone, and the house is slowly falling apart, but far less slowly than I seem to be.
But I also don't ever want to go on any cruise ship, or buy a Lamborghini. I'm real happy being a practicing frugologist, ie, frugal bloke, with same attitude to spending $$ as I had when I was much poorer.
I'm looking forward to using my swimming pool again after replacing the vinyl liner which began breaking apart last Xmas after 37 years. Suppliers said I had the oldest pool liner in Australia, and that's because I tend to care about things, and not abuse them, so I also drive a 1986 Ford Laser 1.6L which my dear old mum gave me in 2003 when authorities took her driving license away at age 85.
She met a large number of nice cab drivers after that.
The ancient Ford goes well, does not blow smoke or leak oil, so why on earth would I spend $40,000 on anything new? I drive about 3,000km a year and cycle about 10,000km.
I had a nice 66km ride this morning, and predicted wet weather didn't happen until tonight,
and all the plants and animals are enthralled with Nature's best spring weather we have not had for many previous years. It looks like we won't get another dose of bad bushfires like last year. And I am so lucky to live here where we have had virtually no C19 cases.
Spending money won't make me one bit happier, unless I have a good reason.
If I ain't spending, its because I don't have plans, which were always better things to have than dreams that must be fulfilled, such as getting married, etc, etc, etc. Pca makes long term dreams seem like grand disillusions, ie, bullshit, and I get by very well at one day at a time.
Yep! I sold my house, and bought a fixer-upper close to my grand daughters. I am in the process of renovation, doing almost all of it myself. I'm still working, my ideal is 3 days a week, although I have a brutal week coming up.
I realized I have to plan for two scenarios - two years if everything goes to hell in a hurry, and 5-10 years if meds keep working.
I've worked out my whole life, plugging away at that too.
I still work full time and had long term plan discussion with the company owner who is same age as me. His plans are to one day sell the company and start another but he said I'm going with him to the new company so I'll be working forever, nice to feel needed. But i still hope for things to open up as i have many travvel plans.
Yes I do, 50 months into stage 4. Just added onto the house, planted stuff at the property, started a build on a 62 Ford Falcon. No need of sitting and waiting on the monster to do his work 🙏🙏😜🙏
I love waking up every morning and feeling grateful to be alive. I decided at diagnosis of APC in 2007 that I wanted to have 33,000 sunrises at least, and to learn something new every day. Try to make or do something different every day in some way. And every year too different and interesting with new activities and challenges. That’s 90 years so still a long time ahead from here at 70.
My remembrance is that, if I am still here then there must be more yet for me to do, however long or short the time may be. When I take my last breath I want to smile with satisfaction on the knowledge that I did what I came here to do. And that is primarily to learn about, practice and embody love.
Live like you should, diagnosed 3 years ago, on lupron/Casodex until that combo stops then move to next combo, Mets healed, turned 69 last month. Feel good still work part time, laid down mulch in my entire back yard since the grass will not grow and just weeds. My roommate helped build 5 raised planters (2' x 4' by 2 foot deep) and grew vegtables in them. Landscaped the same yard with bushes and pathways, planted 2 blackberry bushes and 3 red raspberries and moved some wild blackberries from the side of the house to the back yard. Rescued another cat of 1 year last year which I plan on seeing her live till she passes, do not know when I will totally quit working yet. Do not like traveling, need car in 4 or 5 years is the only big ticket item, had the bathroom remodeled last year so the house is set for years. I plan on another 20 years at least and beyond to make it in my 90's. My oncologist loves my attitude, wishes all his patients had it. I enjoy food but have altered it due to this disease, have a strong faith and enjoy helping others.
You have to have something to look forward to in order to survive, a hobby of some kind. I grow African violets and belong to a local club since 1973, very active in the club. Put out the newsletters, help with our show and have served as treasurer for over 8 years. My mom when she was alive said if you sit you rust, have to keep moving so work fulfills that along with gardening in the summer with snow blowing in winter, walking in mall during the winter. We also have 5 rescue cats, the oldest is 15 and requires insulin for diabetes so they give me a lot of joy. My close friend has lived with me for 22 years and is a big supporter along with my black cat that we rescued in 2008.
Happy birthday! Same age as my brother .. African Violets ? Fantastic ! Raised planters beds. Way to go .! Blackberries oh yah ! I like your style .. a best friend and a black cat too, you’re golden my friend . I think you’re living right .👏👏👏🏋🏽♂️
I just got six pairs of diabetic socks in the mail . Whoohoo! God willing I’ll make it through winter with warm feet . That’s about the extent of my long term planning . I put everything in my sweet wife’s name upon dx...I got in the bucket of ssdi at 53 years old . A roof, food ,and water is all that’s needed. Thank god ! That we have all three .. Pluck the day !
Absolutely planning long term as should you - it ain't over until it's over. I'm going with friends on safari in 2024 in fact, that's pretty long term as I'm 2.5 years in on my 2-5 year "expiration date" estimate. I'm gleason 9 (5+4) with metatastis on my bones (minimal) and liver (minimal as well). I've changed my diet significantly so my body can help with the modern meds to do their thing (e.g. intermittent fasting and eating mostly fruits & vegetables - I still eat meat occasionally but it's gotta be grass fed and or wild caught seafood). I'm also updating my family's lake cabin in Minnesota, could take a few years to finish my projects.
Thanks for the compliment but I am NO genius about anything. I guess your Dad took his passing very hard.... Maybe he's still making him laugh... and maybe I can exchange humor with him in that big comedy store in the sky.....
You right about that....when I was there they be laughing so hard they love the stories built up to the punch lines..I was smart ass kid with the comebacks and the so dry humor....but I manage to always keep my father smiling...he understood me
Yes, within the confines of what I feel I can physically do. You can not have cancer but die from something else or get hit by a bus. Without long term plans I feel I’m giving in to the disease. I would suggest you might ensure your plan is acceptable to your caregiver or family in case you are not here. Do they want to have responsibility for the new house, as an example or perhaps it should be scaled down in size. Live your life, no one knows how long we will be here. Be blessed!
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