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Having PCa Has not Made me an Expert on this topic

Trew
Posts: 891
Joined: Jan 2010

Having had stage iv PCa- Devinci surgery, radiation and hormone shots- Eligard- has not made me an expert. 

What advice I share is only observations from my own experience.  I picked up a few medical terms along the way, but really, from my lone prospective I know very little.

I do know I did not feel comfortable with the first urologist who did my biopsy so I went to another.  That doctor turned my over to his PA and I never saw that doctor again.  I did not like the PA so I left that office for a 3rd urologist who I liked.  He told me statisticly there was no evidence that 2 yrs of hormone therapy was any more effective than 1 yr and recommended 1 yr was enough.  I had a terrible expereince on Eligard and I was delighted to discontinue the Eligard.  Others have had less severe effects from Eligard. Having the right doctor is important.

Etc.

I just wanted to make a statement that PCa has greatly impacted my life and after all is said, I know very little about PCa.  What works for one of us aflicted with this cancer may not work for another.  I think the most important decision you can make is to have a doctor and doctor's office you had confidence in for wahtever reason makes sense to you.

Sexual function is important to all men.  Again, who can say what will happen in your case.  It seems a lot of men have normal function after surgery, some men, no matter what they try, will never have an erection again. 

Having watched end stage PCa up close I know I never want that end for myself.  That fear is real enough.  I have never been in battle and had someone shooting at me, but I sometimes wonder if the fear at first is maybe similar.  that is just my thought on what I have gone through so far. 

So what is the point of this post?  Just to say publicly that I can share a similar experience with other men going through this and tell what I have expereinced that may help someone keep his feet on more stable sand, but I know very little after that. 

I am in the group that has at best a 50/50 chance of recurrance in the first 5 yrs after treatment. 

This April and May I will be out hiking/backpacking the Continental Divide Trail in New Mexico- 650+ miles. This is one of the items on my bucket list.  If you lose one part of your life, this is my view, replace what is lost with something else. 

And I do find comfort in Jesus and faith in Him. 

-Trew

 

 

 

 

ob66
Posts: 214
Joined: Apr 2010

And thank you so much for your post. Having watched your progress through the last few years, I am very happy that your quality of life is sooooo much better. Big.

As we are all hung with the unknown of our disease, your sharing, honesty and compassion for others is great....Best to you, Trew....

JEHJR's picture
JEHJR
Posts: 25
Joined: Feb 2013

God bless and be safe on that trip!

VascodaGama's picture
VascodaGama
Posts: 1518
Joined: Nov 2010

Trew

 

I think that in fact you are an expert on PCa matters. You may not be an experienced doctor but you are a patient and have experienced a series of events since your first diagnosis.

Those are real facts that have taught you things that most of the doctors only guess.

Cancer, in whatever face it exists, is not a conventional occurrence. Researchers may know better what is behind its existence but only the team composed by both, the patient and the care givers, know what it can be expected from an action when trying to eliminate it. The patient is the “knowhow” of his case and frames the overall aspects of the cancer, from symptoms to treatment to results including the peripheral diets, etc.

Your comments are important to all of us in this boat. And I think that no one would get offended if you were not exactly right when suggesting.

I hope you enjoy your trip to New Mexico. Have a good ride on your AUS bike and let us know more of your experiences while on the way. We will miss you.

Just kidding but, what does your last sentence mean?

If you lose one part of your life, this is my view, replace what is lost with something else.”

Are you suggesting replacing it with a “dick”?

 

Best wishes in your journey.

VGama  Wink

Trew
Posts: 891
Joined: Jan 2010

From my own experience, PCa has made a big hole in my life.  What was once there is now gone.  I have a new normal to cope with now- a hole, a void.  It must be filled with something worthwhile of the void will fill itself with junk of all kinds and turn into its own cancer.

 

Post- PCa can be filled with those things you always wanted to do but never was able to work into your life.  I am going on a challenging long distance hike the length of New Mexico. 

I know a few things about hiking/backpacking and ow is the time to work on some of those other dreams in life. 

 

 

hopeful and opt...
Posts: 1282
Joined: Apr 2009

As a hiker, I am impressed with the enormous hike you are planning. This will be a great feat. I am hopeful that you can post from time to time to let up know how you are doing. 

Trew
Posts: 891
Joined: Jan 2010

I have been spending a lot of time today getting resupply boxes ready for my New Mexico hike.  Long distance hiking is a lot of work. 

And carrying a pack all day and sitting on the ground a lot seems to open my artificial sphenctor so I have a little bit of a drip problem to  contend with on the trail.  I have figured out a way to handle that- and no, its not a  kilt.

 

But maybe I should consider that a bit more.  Hiking through serious SW desert in a kilt.......   Hummm......  

hopeful and opt...
Posts: 1282
Joined: Apr 2009

How much do you walk every day now in order to get  ready for the hike?

How heavy will you back pack be.......will you be hiking on your own?

Will you be spending any time during your hike in a hotel, in order to clean up from time to time

Trew
Posts: 891
Joined: Jan 2010

I am not as in good of shape as I would like.  too much to do to stay on a real active exercise schedule. 

I hike as often as I can. 

Today I spend a lot of time getting 8  resupply boxes ready.  On my hike outline I have 8 sections, 717 miles.  Some sections are only 4 days long- like about 55 miles- and one secctions will be 130 miles between resupply and probably take me 10- 11 days depending on trail conditions and route finding ease.

Resupply boxes are mailed ahead to post Office and addressed  care of General Delivery with my name on the box.

When I can I do stay in a motel to shower and do laundry.  Serious exercise still gives me a little leaking problem- especially when sitting on the gorund at night in the wrong way.  So on the trail I have a method to wash my underwear every few days or as needed.  Life is different after PCa but its not over. 

Pack load will vary depending on the length of time between resupply and water spots. 

Base weight with shelter, sleeping bag, pack, water filter and cooking stuff will be about 12- 15 lbs.  3- 4 lbs of clothes, 1.5 lbs of food per day, plus up to 4 or 5 qts of water at the start of any new section of trail after a water stop.

 

First 200 miles is unmarked trail.  I have a route ready to go into my GPS so it shouldn't be a totally impossible task to get across desert landscape.

that should anwer some of your questions.

 

 

   

Swingshiftworker
Posts: 620
Joined: Mar 2010

Never thought about using General Delivery at the Post Office for an extended trip.

Recently saw the movie "The Way" which chonicles a father's journey on the Camino de Santiago in Spain, following his son's death while attempting the trek, as he spreds his son's ashes along the way.  It was quite moving to me and, although I'm not religious, I am considering walking all or part of the approximately 500 mile route myself sometime in the future.

In the meantime, I'm planning on driving up to Alaska and back in a truck camper which will take about 4 months covering over 8000 miles round trip.  So, I may make use of the General Delivery idea to receive my mail as well as additional "supplies" from a friend back "home" while on the trip.

Thanks for the tip and best wishes on your hike along the Continental Divide!  Sounds like quite an adventure!!!

Trew
Posts: 891
Joined: Jan 2010

i should add though I am not an expert on PCa I did learn a lot about incontinence.  Surprised 

Just wondering if any one else got the electrical stimulation up the rectum to see if that could do something or other.   Hummm...  there goes my crediblity on that one. 

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