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Meet Charles

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With September still in full swing and fall making its appearance, let’s meet another member, Charles, who lets us into his world during his diagnosis of prostate cancer and beyond.


I was living in Vancouver BC, in 2007.  I was 62, healthy, vegetarian, just finished a 3-year cruise on a 36' sailboat down the Pacific Coast to Costa Rica.
I had a slowly-rising PSA for several years, and my GP had cancer himself, and was watching the situation. At PSA = 8, he called for a biopsy, and I listened. 
My GP recommended a urologist, who confirmed the need for a biopsy.  I had several positive cores, Gleason 6.  It was a TRUS biopsy, no MRI guidance -- MRI's were still being researched for effectiveness. 
My urologist recommended surgery, and also arranged a consult with a radiation oncologist (which was very useful), and gave me contact information for the Vancouver prostate-cancer support group.   I went to my first support-group meeting, and realized that -- looking at all the guys around me -- I probably wasn't going to die soon.
I also read all that I could about prostate cancer, its treatment, and the side-effects of treatment.  I'd only been married 7 years, and my sex life mattered to me, and my wife.
I found the MSKCC nomograms, figured out that my PSA doubling time was 18 months, and found that, if that continued, in 18 months I'd have a PSA of 16, and the chances of a "cure" would be considerably lower than they were if I treated it right now.   There were 5-years studies of brachytherapy, but no 10-year studies.  "Active surveillance" with an 18-month doubling time didn't make sense. 
So I decided to have open surgery (the robots were just becoming available), and deal with side-effects as best I could.  My wife agreed.
My only unexpected side-effect was a urinary stricture, which required a trip to the ER to open.  I've been self-cathing since then, just often enough to keep the urethra open.  That's once per week, now. 
I got into a hospital-based continence program after six months or so, and regular, coached Kegel exercises had me "dry", six months after surgery.
It was a year before I accepted that "penile rehab" wasn't working, and started using bi-mix injections.  They worked well, sex returned to almost-pre-surgery.
I became active in the Vancouver prostate-support group, and have continued that. 
Now, my PSA is undetectable.  So I'm either NED ("no evidence of disease"), or "as cured as my next PSA test".  The recurrence curve has a long tail.
I'm still using injections (now tri-mix, bi-mix is unavailable locally).
I've stopped doing Kegel exercises, and am leaking a bit -- going through one pad per day.  Just laziness.
I'm still attending local support-group meetings.  I'm active on three online prostate-cancer forums, and try to stay up-to-date on the disease and its treatments.  I'm an "injection evangelist", and have a special interest in sexual problems -- physical, and emotional.
I've taken "peer counselling" training, which has been useful.  I've lost track of the program, during this plague (COVID). I'll have to pick it up again.
Speaking from my experience (which is not the same as everyone's), three things I would want everyone to know:
(a) . . . It's a long, twisty road -- don't try too hard to see past the next curve.
(b) . . . You're playing dice --
. . . . . the stakes are high,
. . . . . . you don't know the true odds,
. . . . . . . and you can't leave the table.
(c) For prostate cancer especially, and for cancer generally:
. . . If you have a partner, it's a "couple's disease". That's often ignored by the docs who treat it.
I told lots of people that I had prostate cancer.  Several acquaintances said "Oh -- me too!"  One of those (with counselling experience) heard my worries about sex, and said:
. . . "If you want erections, injections are very reliable."
That backstopped me, and knowing there was a solution, let me work through the long process of oral drugs and VED's, to get there.
 My wife, above all is my greatest supporter.  Along with my GP (now retired).  The men and women in the local support group, and online.
We kept sailing locally for many years, but finally retired and sold the boat when we became too old and damaged to maintain it.
I'm doing a lot of music.  I've joined a large choir in Richmond, sing and drum in a chant group, take voice lessons.
"Prostate cancer support" has become a hobby -- I start the day by checking on the forums I frequent.

When the plague is over (= when there's a vaccine) I want to continue travelling.  We've really enjoyed the places we've been so far.
As to CancerConnection, I'm in a "pay-it-forward" debt, because of the help I've received.  Sometimes, I have useful advice to offer.   Sometimes, I learn things.  Often, all I can do is say "Me, too" -- and that seems to help.

 
Thank you for sharing yourself with us Charles and for your wisdom you so generously share on the site



 




Comments

Charles 
We both had some similarities in our experience with Cancer.
I was diagnosed with Non-Hodgkins Lymphoma December 07/ 2009 after a CTScan.
Had two biopsys a Pet Scan and I forget what else.
When they identified the type and stage, I was put on 6 Chemotherapy Treatments in 2010. 
The wait to get started was exhausting for my wife and I. 
Sent for bone marrow transplant consultation however I was extremely fortunate that the chemotherapy treatments worked.
My Oncologist described me as a young 62 year old gentleman with an excellent performing status.
I was a swimmer (not braging?) but I was swimming a mile in an Olympic size pool. I was also a kayaker and spent time in power boats. Not in the Ocean but on a lake.
Cancer pulled the rug from under me but the new me, after recovery got right back on the horse. I was doing everything again especially swimming. I didn't have the same ability that mile looked and felt like a 100 miles, so I did what I could and that was great.
The last 2 years my heath has changed but I am Thankful, Grateful and Blessed. 
My son his 8 year girlfriend (does that make her common law wife?) and their 2 year old dog came to visit me today.
My daughter was here later on in the day although she didn't stay long.
This of course made my day.
Everything was extremely difficult for my wife. This also caused some turbulence in our marriage.
Open communication or is it.
This topic is difficult to discuss I do not like calling it just sex. This to me refers to people who just want their needs met and that's all. This is fine I guess with two consenting adults. This gives away my age for sure.
The discussion should be around the emotional bonding of two people. 
"Emotional Bonding" the title of my best seller (only in my mind) would probably not reach the stores or ebooks to be up to date.
If you read the heath information having this bond will help both men and women when it comes to longivity. It helps the body release chemicals that have a lasting effect on our health.
Something to sleep on.
I have been a member of Cancerconnection for almost 2 years and it was a God send for me. I have met some extraordinary people.
We as humans need connection so I wish you and your wife the best life that you can have together.
You are also an extraordinary person to continue to help others.
Speedystill 
 
  • Posted Sun 04 Oct 2020 07:38 PM EDT
Hey nice to meet you Charles. You are probably more worthy of the West Coast Sailor sobriquet than I am. But it was a nickname I had used on several forums before I got here and I didn't realize how active I would become here. Still I love sailing and haven't done nearly enough yet.

Thanks for all you have contributed on the site. I stick pretty much to the lung cancer and grief forums so I'll admit I haven't seen all that much.

CentralAB‍ and I have been talking about a dating thread. I have tried a couple of times to get a sex thread going in the Man Cave. But I guess men just don't like talking about it. (unless it is conquests and that probably isn't appropriate here.)

Angus
 
  • Posted Fri 25 Sep 2020 09:40 PM EDT
The post in the Human resilience topic will get put into the dating & relationship topic soon as I can get to it, to save confusion and clicking back and forth.
  • Posted Fri 25 Sep 2020 10:25 PM EDT
Howdy WestCoastSailor‍  and Charles‍ I did start a topic on dating and relationships here.  https://cancerconnection.ca/discussions/viewtopic/35/66334
and I posted something about it in the Human resilience topic here  https://cancerconnection.ca/discussions/viewtopic/79/65524?post_id=330897#p330897
 
  • Posted Fri 25 Sep 2020 10:24 PM EDT
Charles‍  Congratulations on a great bio write up including all you do for the different forums.  Nothing beats the smell of sea air, seaweed, and winter storms! 
  • Posted Thu 24 Sep 2020 06:24 PM EDT
How wonderful to "meet" you Charles.  I really appreciated your candour and openness.  You mention that cancer is a couples disease , which is so true.  My hope was that if i was labelled NED, so could my husband!  He tries hard to put on a positive "front" but we know each other so well, its often the things not said, the body language that tells the story.

I also appreciated your comments on sexual activity.  Another area that can be impacted by cancer - whether it's through treatment, side effects, or overall mood.  

I hope you will soon be sailing on the high seas, yet again!  Kim
  • Posted Thu 24 Sep 2020 06:24 PM EDT
>>>
I also appreciated your comments on sexual activity.  Another area that can be impacted by cancer - whether it's through treatment, side effects, or overall mood.  
>>>

Dr. Anne Katz (a Ph.D nurse) has three books which I found useful on sex and cancer.  

"Man Cancer Sex",

"Woman Cancer Sex"

"Prostate Cancer and the Man You Love: Supporting and Caring for Your Partner"

I thought that prostate cancer was unique, in its effect on a person's sexual life.  The first two books convinced me that _lots_ of cancers would wreak havoc on their victims, and partners.

I just discovered Dr. Katz' website:

http://www.drannekatz.com/

.  Charles
 
  • Posted Fri 25 Sep 2020 01:50 PM EDT

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