Plans to visit father in FLA unsucessful

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yogin
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 1/31/2011 11:26 AM (GMT -6)   
Hello Friends,

My intention was to go see dad with my brothers and sisters in the next week.. There was a few of us kids that were making arrangements to go but somehow they found out . We w ere going to stay a t a hotel close by and rent a car. They both basically said flat out don't you dare show up while dad is laying in bed we will not have it.. Since my last post things have taken a turn. Dad is getting radiation now on the spine for the multiple tumors.. They are talking Chemo not sure when . He also has had his morphine upped to 3 not sure how often he is taking the capsule form.. Not sure if he has patch. Still in pain.. I read multiple posts on this forum that Chemo is used for late stage to add more time? I talked to Dad on Saturday and he sounded very sad to me.. Mom wasn't there i guess she ran to the store. The conversation was 10 seconds at the most.. I told dad i loved him and how are you feeling? He said ok not good . He says you know i am having radiation and i said yes. Then stupid me says i heard they are talking about chemo Dad.. Oh my Gosh was I wrong to mention that. He s aid yes just more crap i gotta go click goes the phone.. I felt just awful basically the rest of the day... My sister calls this am and says tell your sister ( me ) not t o call dad and upset him. Tell her not to call when im gone. My intention was never to upset dad.. I just feel like we are on side lines watching him suffer and none of us will have any say. Im at the point where I just need to back off sadly. I want t o be there for the both of them but i Just don't know how any more.. Thank you for all of your support. My apologizes if I sound like im repeating s same thing over and over again

worried frustrated. daughter in Michigan sad sad

yogin
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 1/31/2011 11:34 AM (GMT -6)   
This last post was submitted by me shammitt that is my old log in name Yogin

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7205
   Posted 1/31/2011 11:58 AM (GMT -6)   
You absolutely should post here -- this is a support group.
 
This is a very sad situation. Are both parents of like mind or is one running the show?
 
Regardless, I'm not sure what you can do.
 
When I had my surgery, I really did not want visitors and basically mentioned that in advance. I just did not want my kids to see me this way.
 
Well, they ignored me and came anyway (my daughter flew in from California). I was not happy but didn't say much and as it was I really did appreciate them coming. But, that's me. I did not draw a line in the sand on this issue. It sounds like your parents have done that and I guess you have to respect their wishes.
 
That is a tough situation but maybe your Dad will rally soon as a result of some of the treatments and then perhaps you can get to see him.
 
Mel

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/31/2011 12:02 PM (GMT -6)   
I don't remember seeing any patients whom had to do chemo or couldn't be offered other choices in therapies, now to be less than a nice guy the docs aren't all experts in all PCa phases and some use very limited/conservative protocols because hospital lawyers say so is likely the reasons. The independents like Scholz, Myers, Sartor, Lam, Leibowitz have a small arsenal of protocols they use on later stage patients. The results vary from patient to patient, some of these protocols are on the internet for us to see what is going on in real time for patients. Places like PPML and P2P and other websites are helping others to see all these other protocols and actual choices that can be gotten....maybe not easy access to these docs is a big problem.

Do you have a list of his treatments and journey stats information at all? Have you looked at other patients and what happens and when? Checkout www.yananow.net  for mentors/experiences and see what others have done. Some docs are like soup n_zi's and tell you how it is going to be, great for billing too, doesn't mean that is the only way to fight PCa or that you cannot challenge authority, I fired a few docs myself.

Maybe there is nothing that can be done, the only way to know is to see more opinions and real experts in mets PCa. But I am only the monkey/gorilla in the room. We are all looking for Tarzan, to rescue us.  www.hrpca.org  (proven treatments)
Would mom listen to you on this stuff?  Maybe for someone else facing this similar scenario will see why you need to get envolved in your own case.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 1/31/2011 11:05:35 AM (GMT-7)


clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 1/31/2011 12:03 PM (GMT -6)   

Well, there aren't any easy answers here.  Your parents have put you in a very awkward position.  They apparently are having a really bad time dealing with what's going on and are trying to tough it out alone, but what a shame that is, when you and your siblings could be there to help and offer comfort.  Right now, for whatever reason, they're not looking at things at all from your point of view as a loving daughter.

I guess they don't understand what this is doing to you.  I know I would never do this to my son and daughter, and I know my wife wouldn't let me do it, but we're all different. 

I can't think of much else you can do other than to let them know that you love them, that you wish you could be there, that you would like to help in any way you can.  Then, if worse comes to worst,  you will at least know that you've expressed  your love and that you've said goodbye as best you can.

I would have to say that in their pain and grief, they may not be thinking clearly, and I hope you'll take that into consideration, but I'm sure it's impossibly hard to deal with.


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 1/31/2011 2:40 PM (GMT -6)   
It has to be very unsettling in watching what is occuring with your father, your parents and feel that you have no say. It might be they are dealing with it in the way they were raised or just part of the culture when they were younger. My father would have likely hung up rather than discuss it, but he wasnt a bad person. Just the way he was.
 
Cant answer this for you as it a tuff position to be in. But I got my stubborn streak from my mother and she knows she could warn me not to come, but I would go anyway. Was with both of them when they took their last breath and wouldnt have had it any other way.
Michael

yogin
New Member


Date Joined Oct 2007
Total Posts : 7
   Posted 1/31/2011 4:39 PM (GMT -6)   
Thanks to all... This is one of the best support community that i have found..
It really helps me alot...

Daughter in Michigan

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3747
   Posted 1/31/2011 5:27 PM (GMT -6)   
In all likelyhood, your father is dying..If you want to be with him, speak with him before he dies, then get on your horse and do it...Your folks are under a lot of stress, there must be some family resentments, we all have that, but I would make the effort to see him one last time..if you fail, you fail. But at least you tried...If you don't even try, you are setting yourself up for a big guilt-trip in the near future...In all likelyhood, Mom will soften up when you are standing in front of her...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT NOW

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6949
   Posted 1/31/2011 7:40 PM (GMT -6)   
Perhaps I was not blunt enough before. Go now so you don't regret it later.
 
If your father does well, and outlives us all, bravo. Then you will regret spending the kids' date money for a month when they get to college. They won't notice if they are studying.
 
I've been told not to come as well, but the spirit wasn't there. Do what you need to do.
 
Just my humble opinion.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/31/2011 7:57 PM (GMT -6)   
You have nothing to lose by going, and trying to see him while he is still alive, you have, however, everything to lose, by not trying. Only a long voyage in the sea of regrets for the rest of your life.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 11/10 Not taking it
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/23/10

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2667
   Posted 1/31/2011 8:02 PM (GMT -6)   
Daughter, since your parents are apparently unwilling to discuss this with you on the phone, why not put your thoughts into a letter and tell them exactly what you are feeling?  They might refuse to read the letter, but human curiosity will almost certainy compel them to read it, and you will have at least had the opportunity to tell your father how much you love him, and how much you, as a loving daughter, want to be near him and do what you can to help during these difficult times.  Plus, just putting your feelings onto paper might be of some therapeutic value to you. 
 
Letter writing is a lost art, but a letter can have more power and more persuasiveness than a phone call.  Plus, they can't hang up on a letter.  Bill

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 1/31/2011 10:10 PM (GMT -6)   
Yogin, I too think that if you want to see your dad before he dies you just need to go.

It seems to me that he is either so vain that he truly doesn't want to be seen "like this," or he's thinking somehow he's "saving you" from the reality of his disease, totally insenstive to the fact you and your siblings are also suffering and your suffering will be made less by being able to share his pain, and your pain, together. If he's a vain man he may not let you in when you get there. That's his huge loss. You'll always know you tried. If he's in some sort of scrambled thinking mode --- and illness does wrack havoc with congitive ability --- then he may well relent and chances are you'll have a wonderful time together.

If you do go, and if you do get to see him, may I suggest that as far as his current situation, what treatments he is, or isn't doing, all that, you don't mention --- you let him take the lead. You take the lead on talking about good memories, "Dad, flying down here I suddenly remembered that ..... how in Heaven's name did you ???? ..... Do you remember the time we ..... " and talk about the present, what you're up to, what grandchildren are up to. Ask his advice on something you're dealing with. Not fake asking, but something where you really would like to have his advice. Let the visit(s) be about good memories and about today, but not about his illness unless he brings it up.

I wish you well. You are very brave.

While I advised you above to go, if you decide not to, that's okay too. You know yourself and what's right for you, is the right thing to do.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 375
   Posted 1/31/2011 10:47 PM (GMT -6)   
From my own personal experience, for what its worth, when my father was dying, i really didnt know it was his time, he had colon cancer for 6 years, i had a bad, painful relationship with him, he wanted me to be something i wasnt, he died and i wasnt there. No resolution, no peace for him or me. When my mother was dying from breast cancer  i went home, saw her for one last time, there was a sense of comfort, of closure for both of us. 20 years later i feel much better about my mother, still regret my relationship and end of it with my father.  Just go, i doubt they'll lock the door and keep you out......
My age= 52 when this all happened.
DRE=negative,
PSA went from 1.9 to 2.85 in one year, biopsy ordered,
Second biopsy on 08/14/08 found 2/12 cores positive for CA on R side, 1 core=5%CA, other core=25% CA, Gleason score= 6 both cores,
Bilateral nerve sparing robotic surgery on 09/11/08, pathological stage T2A,
No signs of spread, organ confined,
5 0's in a row, still use trimix for ED

Octorobo
Regular Member


Date Joined May 2009
Total Posts : 401
   Posted 1/31/2011 11:36 PM (GMT -6)   
Thirty-five years ago I missed saying good-bye to my father and giving my mother the support she needed the afternoon he passed away. Really very bad judgement on my part, not being there- missed it by five or six hours.
I still regret my poor decision about timing. My relationship with my father was current- really did not need to say anything- just should have been there. He knew I loved him! Real love in relationships- friends, married couples, siblings, parents- isn't a magic act. It's a journey. A great relationship grows from an investment of time and effort. It's learning to be present in the moment, acting intentionally, risking awkwardness and learning to let go.
If it were me, I'd go call my siblings and go to Florida. This may not be the time for your father to go but you being there demonstrates how important his relationship is to you and how much you love him and your mother. Go pack your suitcase before the snow shuts everything down-again!
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