HealingWell
Search Close Search
☰

4/9 - Very Disapointing & Depressing Doctor's Visit

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 2 34
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2014 12:49 AM (GMT 0)
David, I think about you often and follow along with your journey. I pray that better days are ahead for you in the near future.

Sonny
Posted 4/12/2014 1:09 AM (GMT 0)
81,

I appreciate your writing thoughts and your compliments. Despite having 3 published books, don't consider myself a "great" writer by any means. Just an easy media for me to work with. I started in the writing craft at age 6, when I published my schools first ever news paper. Been doing creative writing ever since.

Kind of lost some get up and go since my last book was published nearly 2 years ago. It hasn't sold as well as my first two, yet I felt it was my best work.

A while back, I did start on a prostate cancer/biography type book. It was mentioned here a few times. Problem is, I am just not a natural at writing non-fiction. I gave up the project after several chapters.

Since I have been the major pain zone the past couple of years, just haven't felt too inspired to start even a new novel. Got tons of ideas in my head, at least 4-6 books floating around. Just haven't done anything about it.

Tried a couple of blogs in the past, all of them died a slow death. Really don't like the format to be honest.

Wish I did feel like starting something new, but lately, its been one endless medical thing after the next with me.

Perhaps the bug will get me going again at some point, definitely feel I've got a few good books left in my head. Just takes a lot of time, work, and discipline, to actually write and finish a book.

Thanks for the tips

D.
Posted 4/12/2014 1:10 AM (GMT 0)
Thanks Sonny and Ed.

We all know that my name "Purgatory" never had anything to do with my PC journey, strictly a religious nickname from my Catholic faith, however, the way things have turned out. Starting to believe I am in purgatory of sorts, and it doesn't seem like I am ever going to be let out.

D.
Posted 4/12/2014 1:14 AM (GMT 0)
James,

Sorry, didn't see your post till just now. Miss you being here, seems like a long time ago that you were a moderator here. You would think after nearly 5 1/2 years, a guy could catch a break, at least for a few weeks even, or perhaps a month, but doesn't seem to be in the cards for me.

If I am being tested, I sure hope I am passing the test, lol. Even my patience has a limit. My will to fight, my endurance, my strength, and now even my weight, is just being whittled a way, a little bit each day that I live. I am not a super man or any other super hero, just mere flesh and blood like the rest of us, and one can only take so much pain and suffering.

All things considered, in my r/l, I still maintain a pretty decent attitude around others, and still always willing to help all those in need of me to the best of my diminishing restrictions and limits. It's the best this guy can do.

D.
Posted 4/12/2014 3:15 AM (GMT 0)
Dave/Purg,
Young vet I'm rarely speechless, but I have nothing to recommend regarding treatments or how to alleviate your pain. You have supported me and newbees, and your common sense has always been appreciated. Remember, you are a fighter so go for broke. I wish you the best and I hope that my prayers for you are heard.
Bill idea
Posted 4/12/2014 4:04 AM (GMT 0)
Bill,

Thanks for your encouragement. I respect the 11 years your have on me, that's 11 more years of fighting the good fight. Discouraged, right now? Absolutely? Frustrated? Yep. But still not translating to giving up and laying down on the job. Just not my style.

All my doctors, and my nurse-wife, beg me to take things easier, to not do as much as I do, rest more, etc, but that's not my style. I do push too much and too far sometimes, probably shows I really don't have much sense.

When I was in the Navy and in my Patrol Squadron, I gave it my best. In all my "civie" jobs, I gave it my best. In my own biz ventures, again, my best effort. I don't like doing anything half-A.

Even now, with diminishing abilities, I strive hard to do my best, and push and push. Many years ago, a "head doctor" told me, that I set expectations on myself only - that were really unfair and harsh, yet you didn't do that or expect that of others around you or in your life. I didn't understand at the time, but I think its slowly sinking in. Some of it, I admit, is my very OCD way of thinking and doing things, and being a die-hard stubborn left handed guy - I tend to make even simple things complicated at times. All adds up to my personality, that I expect a lot out of myself, and don't ever want to be guilty of laying down on the job, whether I am well or not.

On days that I could lay around and do nothing, and get away with it, or even with my wife's blessings, I will create enough jobs and errands to keep a regular health person busy. Just how and who I am.

Appreciate your prayers, and those of all my other brothers/sisters here that live with faith. I take your prayers literally, and know that many of you offer them from an honest and sincere heart.

My best to you, soldier. Salute.

David
Posted 4/12/2014 2:01 PM (GMT 0)

Purgatory said...
thanks, jonathan. wish I had good news to report once in a while, been an incredible down hill journey for me, almost since day one. that's why I am always sincerely happy to read other's here good news, good PSA reading, good results. lately, seems to be more good news than bad news. I am never jealous or envious of other's good tidings. PC, and all cancer, all terrible things, I don't feel that anyone has it easy or better than another.

don't feel as bummed out as I did earlier. but I still appreciate a doctor who gives it to me straight like he did, there was no sugar coating or softening up first, just the facts as he saw it. my head works better that way.

still happy for the "miracle" of zero ED, not even a hint of it. while my pain dampens my quantity, nothing has reduced the quality part, plus I am nearly 62 now, didn't expect to be a stud muffin forever. I feel the quality part is better than ever before, and I mean that literally.

d.

With all of this " incredible down hill journey for me, almost since day one", after an open RP and initial catheter in 63 days, you have zero ED? Amazing. Life is strange. It indeed seems a bit miraculous. In the midst of so much difficulty, still blessings to be found, as you are obviously well aware.

I wish I had something more helpful to say, but I can't say anything more helpful than what has already been said by all the others. I wish there was something I could do. Thank you for all that yo do for and share with us. I am praying for you right now, David.

Bill
Posted 4/12/2014 8:41 PM (GMT 0)
David,
I have been busy lately with my surgery but I wanted to tell you how sorry I am that you cannot get an answer from your doctors about what is causing you all the pain. You have gone through more than one man should bear.

I thought of you yesterday when I as going through my post-op pain. This is what you go through on a daily basis, mine will get better but yours............

Take care, turn it over to the Man upstairs.

Bill from Florida cool
Posted 4/13/2014 12:28 AM (GMT 0)
Hi David, just dropped in to see how things are with you, and after reading the post, your not doing so well buddy, I really don't know of anything to say to comfort you, we have been communicating on this forum for nearly 7 years, and I guess we have given each other a helping word over that time.

Keep fighting!! I know that is your nature.

Best wishes Mal. (my next PSA this week, may change my life a bit in the future maybe)
Posted 4/13/2014 12:40 AM (GMT 0)
Mal, my friend, always glad to hear from you. Good luck on your next PSA. I may or may not have one in May, not unless my doctor wants one, and I kind of doubt that he will. Really doesn't matter at this point what the number is.

Bill, severe constant chronic pain is a hard notion for anyone outside the CP world to totally grasp. It's like, how can anyone hurt so bad, constantly, and get little relief from the meds to boot. You never get use to the pain, it always hurts the same or worse. My new bit, is waking up from pain deep inside my legs, groin, hip, and knees, can't find any position to stay comfortable in for long. Getting harder to find any period of relief. Good luck in your recovery

Billy Bob. Thanks. The zero ED was the totally unexpected blessing or silver lining in whats been a very negative journey. With a non nerve-sparing op, it was never suppose to be that way. I was getting full errections while still on the cath, even had a couple of "O's" on cath (don't want anyone to try that, it was creepy at the time, would never do it again). To this day, have never used any kind of ED meds, no needles, nothing. All natural for me. And when I do have sex, its every bit as good, if not better, than it ever was before. And this is after 9 PC related operations and the ill fated radiation I went through. That part of my body seemed determined on my behalf to work. Now if I only felt out of pain long enough to enjoy this gift.

D.
Posted 4/13/2014 1:16 AM (GMT 0)
David,
So sorry to hear of another in a long string of disappointments. I wish I had something more than my respect and sympathy to offer. Best wishes.
Jim
Posted 4/13/2014 2:13 AM (GMT 0)
Thank you, Jim, appreciate your words.
======================

Saturday Update

Beautiful day, 83 degrees, took wife on a nice picnic to a well hidden small county park about 40 miles away on the Chuaga River, lots of water falls. As usual, tried to have a good time, came back in major pain from walking, etc. I always have to pay the price if I do anything. Gets old after a while.

D.
Posted 4/13/2014 2:41 AM (GMT 0)
Hi David

I guess you didn't see my post the other day, but that's ok. I sure wish you could have a good time with your wife without having to pay for it afterwards. It just breaks my heart that you hurt so bad. I know it has to get old. Take care.

love and hugs
Loretta
Posted 4/13/2014 3:11 AM (GMT 0)
Wonderful day to be outside with loved one(s).
Posted 4/13/2014 3:46 AM (GMT 0)
Loretta, my good friend, with such a response on this thread, I apologize, I missed your earlier one, as I try to respond to every poster. I read it and I appreciate it. It's reached the point, where I have about a 4 to 5 hour window of useful time every day, when I go to doctors, run errands, attend a few legal meetings, and of course, try to have fun and enjoy myself. But whatever I do, comes with a price.

I am in a new (and continual) downward spiral. Seems to happen every 2-3 months. So its becoming harder and harder to feel functional. Yet I refuse to lay around and rest and do nothing, that would destroy my mental well being quicker than the pain I deal with. So everything has to be a trade off.

Had to miss church last Sunday morning, first time since October, because Saturday we celebrated our anniversary, and by Sunday morning, could barely stand up, let alone walk. I am determined, despite my severe pain this evening, I will be at Mass in the morning. Our church spent 8 months being renovated, and tomorrow, Palm Sunday, beginning of Holy Week for Easer, is the first time that we will be back in our real church building. We have been meeting in the chapel at a funeral home all these months.

Then all the kids/grand kids coming by tomorrow afternoon, plus we are fixing a huge home cooked dinner a family that the husband died suddenly at age 39. So it will be a busy day as well.

Always something. I hope you are holding your own, and perhaps having some improvements on your end.
============

Yes it was, Diane. Lot of people were swimming in this crystal clear mountain river (icy cold water still), and spring has sprung in full bloom here. We had our picnic sitting by the bottom of a 40' waterfall. Very tranquil. We live so close to the forests and mountains, yet like many locals, you sometime forget how beautiful the Upstate of SC can really be, especially in the Spring before it starts to get too hot. I even laid down on some rocks near the fall, and almost fell asleep, lol.

D.
Posted 4/13/2014 10:53 AM (GMT 0)
David,I just want to pray for you.I hope,that something positive happen in your life.

My brother, my prayers are for you.

Posted 4/13/2014 2:05 PM (GMT 0)
thank you, gold horse, good to hear from you again.
Posted 4/13/2014 2:27 PM (GMT 0)
Hope you have a good day David. You have a lot of strength.
Posted 4/14/2014 12:57 AM (GMT 0)
squirm, thanks, but I am losing the "strength" battle, getting harder and harder to fight with strength. More will power than strength this point. Being OCD and stubborn is still working for me.

David
=================

Almost couldn't make it through church today. Being Palm Sunday, very long session, lots of standing outside (which I didn't expect), plus very long readings while inside standing. Couldn't take the back pain, so had to leave and rest in the men's room. Then spent rest of service sitting, even when I should have been standing. Spend entire afternoon trying to rest, first a 2 hour sleepless nap followed later by a 1 1/2 hour sleepless nap, but least got me off my feet.

Getting ready to drop my oncologist an update via e-mail. I don't find it acceptable that I am expected to accept my condition and just suffer along. There has to be an answer, there has to be a solution. Pain the less week has been unbearable at best, about to drive me out of my mind. Had enough.

D
Posted 4/14/2014 1:01 AM (GMT 0)
Dave/Purg,
I sent you an e-mail.
Bill
Posted 4/14/2014 1:02 AM (GMT 0)
Will look, thanks
Posted 4/14/2014 1:39 AM (GMT 0)
David:

(((hugs))) I hear you on almost losing your mind from the pain. I hate it that you're suffering as you are. I'm glad to hear that you're contacting your oncologist, I agree, it's not right that they tell us that we have to just live with it. Or my Dr said "you'll have to just suck it up and cope with it". What a crock of .........

I'm glad that you were able to get out with your wife and it sounded like a beautiful area. The downer is that you pay for it in the end. I go thru the exact same thing when I decide to push thru and do something that my family wants me to do with them.

I just wanted you to know that I'm praying for you and I'm here for you no matter what. Remember, we're in this together and I've got your back. I'm not doing very well at the moment, I've put an update in the lupus forum. I'll try to make sure I check for updates on you daily. Or, if you are up to it you can always email me and let me know. I may be laid up in bed, or worse yet I may e headed to the hospital yet again.

Know that I'm sending prayers and positive energy your way. I hope that tomorrow your pain levels are much lower and your oncologist has some sort of solution for your pain.

I pray that you get some MUCH NEEDED rest and sleep tonight. I'll check on you in the AM.

Hugs,
Barbara
Posted 4/14/2014 1:48 AM (GMT 0)
David,
I hope you can find at least a half a solution. Can you ask your oncologist if he thinks Lyrica might be beneficial for you? It's a pretty powerful pain med specifically for nerve pain. I'd feel better if you did.
Posted 4/14/2014 3:13 AM (GMT 0)
Have tried Lyrica, was like taking sugar pills for me, did zip for the pain, and gave me some unpleasant side effects, like a never ending headache, which is a rare thing for me. But I know its has helped lots of other people.
Posted 4/14/2014 3:56 AM (GMT 0)
David,
Wish you could get a break from all the pain.

If I lived closer, I'd come over and mow your lawn or something.

as always, your in my prayers.
Peace,
Andrew
✚ New Topic ✚ Reply
1234