Newbie to the site

[CreativeOne]

I am a 67 year old guy with metastatic prostate cancer. Had a retropubic prostatectomy in 2015 pT3b M1 N0 Gleason 4+3=7, now have a permanent supra-pubic catheter. I am currently in watchful waiting mode with a PSA of 8.23 and rising. My focus is on quality of life, rather than longevity. Anyone else here with a similar story, or goal?

[cujoe]

Creative, Why was permanent catheter necessary?

[CreativeOne in reply to cujoe]

Prostate was removed, but cancer had spread to bladder neck and urethra. Where the surgeon had to reconnect them was nothing but cancer. He installed the permanent supra-pubic catheter to avaoid another surgery when/if the connection failed. I had been catheterized before my surgery, and I felt it tear the urethra. He reconnected them, but has little faith that they will continue to work, and will fail over time.

[cujoe in reply to CreativeOne]

Understand. Sounds like you got the best outcome under the circumstances. My dad had a urostomy & colostomy due to metastatic bladder cancer. Hang tough and Keep Being Creative. Be Well - cujoe

[guitarguy]

CreativeOne,

What if any kind of treatment are you undergoing? I’m 66 and had a robotic prostatectomy 7 years ago. I had problems with my urethra and the doc built a small dam for lack of a better term and thankfully it works better than 99% of the time in helping to control continence so no special underwear or pads are required. I’m very thankful for that as well as the success in regaling most of my sexual function which ended up be a waste of time and effort for other reasons. My numbers are still good but I’ve got so may other problems that I’ve finally decided not to take on any more major battles. I’m spending my time doing everything I can to make life and the transition easier and more secure for my wife. Got a reminder not to put any of this off yesterday morning when I woke to find my wife shoving the phone in my ear saying it’s your brother, talk to him. My 34 year old niece went to a friends house the night before and died on their sofa while everyone thought she was napping. So sad In so many ways.

Anyway, I’m trying to direct the spruce up of our house for what hope will be a quick sale, then a move to FL hopefully to build a modest ADA friendly home near my brother and his family but not too near...

What do you do to occupy yourself while in this mode? Do you have any hobbies or interests that you indulge in?

[CreativeOne in reply to guitarguy]

Currently, I'm doing a homeopathic protocol from India by a Dr. Banerji. The Banerji family have had a clinic in the poorest part of Kolkata India for 150 years. They treat everyone for free, and the doctors see up to 100 patients a day. Traditional homeopathy requires long in-depth interviews, but they don't have time because of the patient load. So, they devised a modified approach. I filled out a patient form, and submitted my pathology report, and received a prescription of 5 remedies and a schedule for taking them. I will continue this protocol for a year, probably. My current PSA is 8.23 in Jan, but it will probably have climbed a bit by April, when due again, it has been doubling roughly every 4-5 months. I figure since I'm not doing any of the "normal" treatments, and the homeopathy is cheap and easy, why not. They have a roughly 50% cure rate for cancers of all types, with prostate cancer being closer to 40%, but worth a shot.

My health is very good, other than the cancer. I've done tons of alternative treatments since 2001, and take supplements and minerals each day. The IVs of vitamins and minerals I did in the early 2000s really boosted my immune system and made me feel better. I haven't had the flu since 2002 and only get a cold once every 3 or 4 years. I retired in 2015 at 63 (my health forced a medical retirement).

Hobbies, not so much. I have always been an introvert and a reader. I am a retired Information Technology Director, so I spend a lot of time online, keeping up with journals and pursuing interests in various things. The closest I have to a hobby is my cancer. I am a member of several groups like this one, and on Facebook, so I wind up coaching the newly diagnosed, and answering questions from people headed down a similar road as me. There aren't many with my supra-pubic catheter situation, I field questions about it.

I've thought about woodworking, turning bowls, wood carving, etc. but I don't feel driven to jump into it. My father was a bowl turner after he retired, so my work would be compared to his by the extended family, and Dad was an uneducated sawmill millwright and edgerman, with little patience for fine detail, so I would feel awkward turning out fine woodworking stuff, which would be my preference, and kind of showing up his work. He lived to 96 and turned thousands of bowls, which he gave away to anyone, and everyone.

The wife and I have tried flipping houses, but she is 77 and my health is compromised, so it was difficult to do. We flipped 3 successfully, and paid off a few bills, but the local housing market has peaked and dropped like a stone, so no demand right now. I don't know if we would do it again.

My focus right now is to cut our expenses as much as we can. Our income now is less than 1/3 of what I made when I was working, and I pulled all of my retirement funds long ago to fight the cancer when I was doing out-of-pocket stuff. We can get by okay, but need to pay attention to cash flow.

[guitarguy in reply to CreativeOne]

Cancer while not unique in that there are multiple paths to go down depending on your type and level which may or may not reduce the number of options. In the end though, each of us make are own decisions and create and follow their own routes. I’d be interested in following your progress and treatment if you’re so inclined to share. I wish you the very best in all aspects of your treatment and in life.

Dave

[guitarguy in reply to guitarguy]

And FYI - I had just about finished settin up my own wood working shop myself. There’s a great deal of satisfaction in the results of that process and the work is fun and therapeutic in my opinion.

I had started to stash some great Koa slabs and figured maple to make few things that were first on my list.

[CreativeOne in reply to guitarguy]

Hi Dave,

Yes, we should stay is contact. Feel free to email me. It sounds like our paths and interests are similar.

Ray

[guitarguy in reply to CreativeOne]

Ray,

Please check your private messages.

j-o-h-n

Good thought. The Koa was intended to be an acoustic guitar.

Dave

[j-o-h-n in reply to guitarguy]

How about whittling a guitar for CreativeOne and teaching him how to play.

Kill two birds with one stone....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/27/2019 9:15 PM EST

[CreativeOne in reply to guitarguy]

My Dad lived in northern California and tended to work with redwood, pepperwood (myrtle) and whatever else he could whack up for free. He made free-edge tables (coffee table size) out of redwood burl, some of which are incredibly beautiful. He made one out of black walnut for me, which I treasure. I'll have to think about hobbies a bit more. We live 60 miles from wilderness, so may take on a few easy hikes.