back from Sudbury and radiaton

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 4/3/2008 7:35 PM (GMT -6)   
Hi everyone: Rob and I finally got back from Sudbury last week. We were down a bit longer than first excepted. After 10 session of radiation he is impatiently waiting for his hands to be better.  There was a lot of frustration at the cancer centre with the rad. dr. and his nurse.  When we first arrived after us learning we had to stay down longer than we thought Rob kept waiting and waiting for his hands to return to him after each radiation. He was getting more and more depressed as each session went by. It wasn't until our last couple of days there that we found out through the technician who did Rob's rad. that it would take 3-4 weeks before he has any improvement. When we saw the dr. and asked about this he repeated this to us. Why didn't he tell us this in the first place? It would have saved my husband and me a lot of bad moments. His nurse was lousy too. Really rude. Doesn't even acknowledge us or speak to us when we enter the room or while we are there. Dr. was in a bad mood the first time we saw him in Sudbury. Very curt and short. After speaking to a couple of other couples there, I learned that they had the same bad experience with him but one couple had an even ruder experience with the nurse. The one positive thing that came from being at the lodge for 10 days was we met a lot of great people  there. I got to speak to one lady in particular while both our husbands were getting radiated. I was surprised how many people were there from where we live. Funny, but we couldn't wait to come home but at the same time it was kind of sad leaving the people we met. I will never complain again about being there 10 days. One couple has been there for 7 weeks of radiation, just coming home weekends. I see small improvements in Rob's hands, just the movements, and he still has 2 more wks. to go. He seems depressed and is only focusing on the loss of his hands. Lately it's more difficult to get him to take his supplements and i now get knots in my stomach when i ask him to take them. He was down to 2 pain pills per day and went off them totally 2 days ago. I had suggested weaning himself off slowly due to being on them for 3 months but he is stubborn. Yesterday he started vomiting and going to the bathroom lots. When i tried to tell him it might be from going off meds cold turkey we wound up fighting. I got the med. sheet and showed him what it said about going off them cold turkey. Everything I tried to tell him was there.  I told him i can't do this anymore, that i feel like i am only his nurse and babysitter now. Told him that it seems he is complacent and just doing what drs. say, (rad. and chemo) and not fighting harder by at least trying alternative methods (self-visualization, meditation etc.) We had talked about trying these things many times and he never follows through. I told him i'm frustrated and it feels like i am the only one trying to use every method possible to win this battle. From now on i won't ask him to take or do anything, from now on it's up to him. Well, so far he hasn't taken any supplements or done anything. Now i feel guilty. I went out last night for a couple of hrs. to a meeting then left early because i couldn't do anything but feel guilty about what i said.What's the use anymore. I seem to be the only one who cares whether he lives or dies from this. I told him that if he just wants to sit and only do the minimum to survive than he will lose the fight. He had his 3rd round of chemo last Wed. and everything went well. He is just extremely tired and his red cells are at 95. Spoke to the nurse and she said the exhaustion is normal from chemo but he should move around some between resting and not to just do nothing but lie down. Not good for him. Now just trying to convince him. All he does is sit in his chair. If he is depressed he won't admit it and i'm sick of hearing my own voice so what's the use trying. I know he is the one with the illness, but he doesn't seem to realize that it's my illness too. He has lost interest in whether the grandchildren come to the house. the loss of his hands seemed to be the final straw.  I'm at my wits end. I can't keep nagging him to take pills and eat, drink water etc... He is still pain free so maybe chemo is helping. They did psa test last Wed. also. Don't know results yet. does anyone know anything about psa and chemo. if psa was still rising wouldn't he still be in pain like before?  If anyone can help I would appreciate it. Sorry for babbling. I don't want to lose him but don't know what else to do.
Lifeline

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 4/3/2008 8:21 PM (GMT -6)   
Lifeline-
So good to hear from you, but sorry the news is not better. I will continue to pray for Rob and his hands, heart and head. My mom has echoed the same frustrations at times with my father. It's hard to understand where he is coming from and I hope that we will never have to truly understand, but I hope that he is just wiped out from chemo and after a couple of weeks he will find his fight.
I think in my dad's situation, he has always been such a strong man. After PC taking away so much of what he has always equated to manhood, I think at times my father has thought that nothing will be left. I pray that my father's radiation gets rid of his cancer, because quite honestly, I don't think he will do chemo if God forbid that should ever arise. I admire Rob for his fight thus far and pray that he will dig deeper. I pray that you find peace with whatever decisions Rob decides to make. It's a hard road and I am sorry that you are on it. I am sorry that I have no answers, all I have for you and Rob is hope and prayers. Keep holding on friend.

God Bless,
Doting
Father's Information
DX July 15, 2007
Age 62 (now 63)
PSA 5.5
Original Gleason 3+4=7 
Post Surgery Gleason- 4+3=7
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin
One positive node
Bone Scan/CT Negative (Sept. 10, 2007)
T3a N1 M0
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07
Lupron beg. Dec 03, 2007 2 yr
Radiation started March 03, 2008 7 weeks 5x a week
2 weeks of radiation down!!!
 
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 4/3/2008 10:59 PM (GMT -6)   
Hi Lifeline,

I know what you mean about frustration with doctors that don't seem to care. I had one and finally had a knock down (not literally) drag out battle with him. It helped but I still changed urologists because I just didn't like his attitude. It sure makes a difference to our recovery when we have doctors that at least try to be compassionate.

You are so brave. Just don't ever give up. I'm praying for you...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 
 


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 4/4/2008 12:18 AM (GMT -6)   

Hi Lifeline,

I am so sorry you are you are going thru this. A rude nurse, and a crappy Dr. That Sucks!!!! I know how frustrated you are with Rob and his non-compliance with taking meds. I have been begging, pleading, threatining and everything else towards Rick since he refuses any further treatment. I have found lately that if I sit down & calmly tell Rick how scared I am of his dying and how much I don't want to be alone he sometimes will soften and take a pain pill or at least tell me what he is thinking as far as his cancer. Unfortunantly Rick strongly feels that for him there is no hope and he his resolved to letting the cancer take its course. He has told the urologist and the oncologist that he will have no further treatment. I think they continue scheduling appointments for him to come back in the hope that he will change his mind. I try to read as much as possible about where he is at on each appointment and offer radiation or hormone information to him but he is not interested in learning anything about prostrate cancer.

I am glad that Rob will get treatments and hope that things ease up on you a bit. Hang in there and sometimes just tell yourself that all you can do is love them and be there if they need you. I try to focus on the good times and am learning how to not beat up on my self when I have no control over his actions.

Warm wishes & prayers to you both

Diana


Rick & Diana
Age 68/ 67@ Dx
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
3-6-07 Triple Spinal Fusion (due to old back injury)
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
 9-26-2007 PSA 0.07
11/1/07 PSA 0.1
11/30/07 PSA 0.12
01/31/2008 PSA 0.3
03/01/2008 PSA 0.3


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 4/4/2008 6:50 AM (GMT -6)   
You women, and my wife, are all incredible. I can think of several reasons which might drive you, but, whatever the reason, you are much stronger than many of us. I have said many times that I am glad that I'm the one who's sick and not my wife because, (1) I don't want her to be sick, but, honestly, (2) I wouldn't want to be the one left alone and have to deal with all that entails. I know I wouldn't be able to handle it.

As far as unpleasant or rude practitioners, I don't know the system in Canada, but, I've "fired" a number of doctors with whom I didn't get along and found many others who are caring and responsive to my questions and concerns. What we're going through is stressful enough, there's no reason to to have the professionals on whom we depend add to the stress.

I wish I knew of a compendium of stories about people who were given only a short time to live and lived, and are still living, many years later. It seems that every time I tell my story to someone new, they tell me about someone they know who's living many years longer than they were lead to believe by their doctors. The first one my wife and I read about is Michael Milken, famous for being a (very wealthy) junk bond dealer who gained some notoriety during the junk bond fiasco. I don't remember the exact details, but he was diagnosed with advanced PCa and was told he had less than a year. He changed his diet and his lifestyle, and as far as I know, he's still going strong some 12 or 14 years later. Check out the books by, and about, him.

One final point. I've been depressed for most of my adult life. I'd always refused meds for it because "I'm very intelligent and can get over it myself". Hogwash!! I finally gave in after a particularly serious bout of depression during which I had some very terrible thoughts. It took many trials and errors to find the right anti-depressant for me and I was put on a low dose of Effexor and that's all it took - until I was diagnosed with PCa. My dose has been increased twice during the three years of my battle and I'm in a really good place vis-a-vis my situation. I truly believe that anti-depressants should be among the arsenal of drugs used to fight any life threatening disease for those who who can't find comfort in some other way. Usual disclaimer - I'm not a medical professional, just speaking from personal experience.

I wish you all, and, me too, the best.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.


Johnny Canuck
Regular Member


Date Joined Jan 2008
Total Posts : 88
   Posted 4/5/2008 10:31 PM (GMT -6)   
lifeline said...
Hi everyone: Rob and I finally got back from Sudbury last week. ... There was a lot of frustration at the cancer centre with the rad. dr. and his nurse. 
I'm really sorry to hear that you've gone through any grief at the hands of any medical staff. I'd suggest you send a detailed note to your Member of Provincial Parliament (spelled out for our American friends), and cc it to the chief of staff at the hospital. There's simply no excuse.
One of the best things about dealing with Sunnybrook in Toronto is that everybody, from my Oncologist to the receptionist, have been smiling, polite, compassionate and exceedingly helpful. It makes a huge difference, and is, without question, the way it oughtta be. Complain long and loud..especially to your MPP!

Age: 54
Gleason Score: 3+3=6
PSA: 3.33
Biopsy:7/8 Positive
Stage: "Bulky" T1c
Prostate Size: 27cc
 
Diagnosed: December 05, 2007
Brachytherapy: on February 26, 2008
  68 seeds, (Iodine 125). 
 
 


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 4/6/2008 7:05 AM (GMT -6)   
Gosh I to hate to hear about your rude doctors and nurses. The healing process can be helped so much if we walk away with a positive attitude. I truly believe that being emotionally and spiritually intune can assist us in fighting this dreaded disease. The great thing about your experience is the people you met along the journey. I will have to say as unpleasant as radiation was for me, some of the best people i met were in the radiation waiting rooms. God blessed me in ways that I could not understand at the time. I pray that your journey will be one of healing and happiness. Thanks for joining us in the forum.
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 4/7/2008 9:50 PM (GMT -6)   
Lifeline,
It's been a while, so glad you posted. Sounds like your trip was tough but for now you're at home and hopefully things have settled down.
I hope you've read Gordy's post through a few times...he shared his experience with depression and how he dealt with it. There has been much discussion about depression on this board. The only shame is when there is help available, to continue to suffer or to makes others around you suffer. I sincerely hope Rob makes a decision to get help with this.
I don't know how I would deal with your circumstances, Lifeline, I truly don't. I guess all I have to offer you is this: I believe, if Rob were "himself", he wouldn't want you dealing with such guilt. It seems he truly isn't acting the way he would like to but he's acting the way this disease makes him think. I'm not sure I'm saying this the right way but bear with me. He's feeling weak and vulnerable and hating it. He must feel unable to change where in this disease he is and he's trying to find his place. He's never been in this position before, Lifeline. You can't make him do anything (no news to you!) but you can do what you need to. The meditation and self visualization you mentioned, perhaps it's what you can do for yourself. It hopefully would bring you some peace in all of this and help you to find your way.
There are many of us here who are thinking of you both, praying for you both and will be here for you.
Wishing you both peace,
Susan
Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
PSA - Undetectable since 6/07/07

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, August 17, 2018 12:35 AM (GMT -6)
There are a total of 2,993,544 posts in 328,049 threads.
View Active Threads


Who's Online
This forum has 161229 registered members. Please welcome our newest member, kydd3.
247 Guest(s), 3 Registered Member(s) are currently online.  Details
Angel07, auzzie, H Mommy