HealingWell
Search Close Search
☰

Caregivers Corner, Treatments for Advanced Disease, Results, Side Effects, etc.

Support Forums
>
Prostate Cancer
✚ New Topic locked
1 2 3 4 5 6 7 8 9
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/20/2014 11:42 PM (GMT 0)
Are the Depends helping? They always worked for me, even when I was 100% incontinent after surgery.

They have elasticized leg openings and are pretty good at keeping the bed dry.

Hope things are better for you and for him.
Posted 2/21/2014 1:44 AM (GMT 0)
Depends worked well for my husband,and they make night time ones that are thicker. Would also get a bed pad too.
Posted 2/21/2014 3:09 AM (GMT 0)
I keep a commode at the bedside too.
Posted 2/21/2014 4:08 AM (GMT 0)
The depends are working.We are meeting with the P.T. tomorrow. Things are settling down. My guy's pain is more under control. Hopefully we will both sleep tonights. Thank you for being there (here).

Susan
Posted 2/24/2014 5:00 AM (GMT 0)
Everything has been going so smooth, you wouldn't know anything was brewing.  But, my DH has noticed a numb feeling in his chin for the last week and asked me, tonight, to search it on the computer.  I can't believe it but so many results all refer to NCS  as being a serious symptom of cancer spreading (unless you've had obvious dental work or an accident).

I'm not going to tell him, tonight, it would ruin his sleep.  We'll talk about it in the morning and make a plan.  but, it sure isn't what we want to hear, deal with.  We're sure the doctors are going to want to recommend more tests and we're afraid of the radioactive dye, now.

Dreamer44, I relate to you and your recent writing.  I, too, want to personally baby my DH for as long as possible.

I'm so glad to learn about a Texas catheter, never heard of one and know that nurses can treat a patient like another # and make choices for their convenience, not the patient's.

I'm hoping to read and learn more so we can be informed, prepared and able to make better choices for ourselves.

thanks

 

Posted 2/24/2014 2:59 PM (GMT 0)
My husband also tried the (they called it a condom catheter) for him it did not work it kept leaking and pulling off .
He also had numbness in his face from about his top lip to his chin. He talked to the Dr about it, but they didn't seem to do anything so he just leaned to live with it. He had to be really careful with hot food not to burn his mouth. Also his left eye was droopy at times and it looked like his eye was some times swollen shut, but that would come and go.
Posted 2/24/2014 7:23 PM (GMT 0)
Sorry to hear about your husbands facial numbness (my everything). The constant onslaught if new symptoms and daily emergencies are taking their toll on both my partner and I. His balance is improving with the med changes, although he is still having intractable pain. We met with an orthopedic surgeon today to discuss double hip surgery, possibly as early as this week. The beat goes on!

Susan
Posted 2/24/2014 8:53 PM (GMT 0)
myeverything,

Just reading about your DH's chin numbing problem. Did he recently have any dental work to cause NCS (will have to look this up)? Last July, I had several extractions (upper and lower). My urologist did have me to stop the monthly Xgeva shots 60 days before and 30 days afterwards.

I'm not experiencing any problems with my chin.

Hoping things go well with you both.

Dave in Bartlett, TN
Posted 2/24/2014 10:21 PM (GMT 0)
Just typed a bunch of stuff and hit a Key??? and gone. Try again. New use for depends. We bought the urinary pads after Mark's 2012 bladder surgery (met PC). Had some left over. I may have mentioned that he has a lot of seepage from the fluid retention in his legs. It's like tears rolling down his shins and so heavy that we had to change the dressings every 4 -6 hours because the dressings were soaked. After the 3rd night of midnight change, I put 2 pads on his shin and then wrapped with gauze. Both cover about 8 inches on his leg and takes almost 24 hours to saturate them. The pads have a sticky back like sanitary napkins so the gauze sticks nicely while I'm wrapping. Hope none of you ever need this info, but file it in your brain's cache for future.

My everything....Expect the unexpected. Mark had numbness lip, face, chin tongue on one side, droopy eye as well as problems with visions on the same side. After about 6 weeks of worsening symptoms, oncol ordered brain MRI. He had bone mets on the skull that we knew about, but the MRI showed that the mets were pressing on nerves responsible for the motor and visual area. Also possible brain met, but since he decided on having full brain radiation to ameliorate the symptoms, it was moot point.

Radsgrrl, Every decision is difficult, to try surgery, both hips...that's so much for someone already compromised by PC. I read Purgatory's postings and am amazed at how much the human body can take. It's hard to keep the loving in the relationship when pain, medications, exhaustion, anxiety and anger get in the way. Hope you are able to do something special for you, every day, even a few minutes. Sending hugs with prayers.
Pat
Posted 2/26/2014 2:33 AM (GMT 0)
Well it's been over a month since I've posted on this thread. I did post on "My Journey with Jevtana" on 02/19/2014. My last post here, I believe was that the husband was going to "rest" from therapies for awhile. Thought maybe we could catch up on some visiting family and friends during this time. Last infusion was January 2 with a follow up with oncologist on January 23rd, this was at the Florida location. PSA was going down and we had moved to Tennessee and got in touch with a new oncologist in this area and appointment was on January 15th. It was at his suggestion that we rest awhile unless "things" changed. Florida oncologist "agreed". So we were in "high spirits". What have we all said about this disease....it's "up's and down's" are just "crushing" on ones mental and emotional state. Went to Tennessee oncologist for lab (PSA) and Xgeve injection. Got the "dreaded" phone call that evening, PSA up from 43.11 to 75 something in less than a month. So goodbye to any trips or fun things. Husband however never did "snap" back from the 4th Jevtana infusion, usually by the tenth to fourteenth day he's somewhat alert and feeling not as fatigued, this time he didn't. We will start back on the Jevtana infusion tomorrow the 26th of February with no definite "end" date......or until PSA continues to rise letting us know that he has failed this drug as well. What a "kick in the pant's" to put it mildly. Of course,we do understand that we are on "borrowed time" and limitations are very close at hand, but you do continue to hope and pray.
Our move was very stressful, and the weather since we have been in Tennessee has been miserable (cold, cold and colder), The remodeling was not fully completed, so we had half a master bath, unfinished kitchen, window coverings had not arrived, cold "hardwood floors"....(I do like carpet because it's warm on the feet and keeps the cold air from coming in around the floor baseboards). To top all of this off, we find that our car (Toyota mini van) is to big for the garage, so if you go outside to the car, you freeze and then freeze some more until the car gets warmed up. When we viewed the house, that garage was like a storage unit (filled to the brim) and when we had to do the "walk thru" it was still full, but really folks, who in their right mind would consider a garage to be to small for a "family" mini van? Anyway, that just added to our situation and the downhill spiral we are about to go on.
However, we did decide on the spur of the moment, to go and visit eldest son in the Savannah, Georgia area before the chemo started back, plus the weather was better there. Thought the change in scenery would be good, than just sitting in our house watching TV, because it's to cold outside to do anything else. On the drive over, my husband looked over at me, (while I was under the wheel, I might add), and said that he "thought that he was dying. He said his lose of appetite and that he had lost about ten pounds, he said aren't those some symptoms of going down? So, I cried the rest of the trip over while he slept on and off, and continued to cry most of every night thereafter. After we had gotten in the car for the return trip, he started again and said that he didn't think that he would ever make this trip again, that would be the last time he would get to visit.
So just to let all of you out there know, I am "hurting" and even though he is not "bed ridden" yet and not in so much pain, he may be closer to the inevitable than I thought.
We were blessed, or should I say, I was blessed to be able to celebrate our 50th wedding anniversary this month and feel very unsure of what is to come in our future at this time.
I know there are still some of you who have lost their "man" and are still in a "gray area" and then there are those of us on this path of uncertainty and feel so unsure of what we can do for our "men" and ourselves during this time......
So sorry for feeling "sorry for myself".......but maybe these sentiments are the same as yours and I am speaking them instead of keeping them inside, I don't know, I am just "reaching out"......
A very sad Caregiver and Women Warrior.....but tomorrow is another day and I will Rise Up and be glad that he will be by my side and I by his.........Goodnight All!
Posted 2/26/2014 11:03 AM (GMT 0)
It so saddens me that more Warrior Women on this thread are going through this. Peaceful prayerful thoughts to tednsal, zimac, Pat, others. It has been 6 months almost for me. All I can say is you will get through this. The tunnel may be long or short, it's different for everyone. I can't say it gets better, but the days are different, there are joys out of the sadness. Laughter feels wrong and awkward at first but then it too is different.
You are all in my thoughts; I can't stop coming here because I am linked to you. I wish none of you had to go through this. But know I am here if only to show you that you will survive. I am.

Post Edited (nhwife) : 2/26/2014 5:08:14 AM (GMT-7)

Posted 2/27/2014 3:57 AM (GMT 0)
Sal,
It is so vital to celebrate the special days, although I imagine you were feeling very alone. 50 years is amazing for any couple.
Many of the hospice team I have met believe the patient knows that the end is coming soon. Many do express it verbally. Of course you cried, and there was the heartbreaker snoozing away in the passenger seat. It has been difficult for Mark to express his feelings through the last few months. One of the most positive memories I have is how happy he was to visit with his daughter in England last summer, expecting it was his last. bittersweet!
My tears today for another "last time" . As the Hospice nurse was organizing Mark's transfer to their local inpatient facility, i was hugging him realizing, these are the last hours he will be sitting in 'his' chair. He looked over at the flowers I keep next to the chair and the Valentine balloon that is still full of helium and smiled weakly. He has a lovely room there, and tomorrow a new bunch of flowers for his room. The team will modify meds as they try to get him most comfortable. He is unable to stand on his own even with a walker for more than a few seconds. His whole body trembles as he tries to keep himself standing. He is down to about 110 but still to much for me to hold up.
I believe he knew this was coming soon, because about 10 days ago out of the blue he said "I want to go to Hospice House." At the time, he was doing ok with home visits. I watched him sleep this evening and he was having a dream that had him reaching up, like he wanted to reach something on the top shelf. I hope he is alert enough tomorrow to speak with his daughter. She is hoping to hear his voice one more time.

Nhwife, thank you for continuing to support us. It is so special because you have walked in our shoes. Some may think laughing is inappropriate during the end days, but today with all its drama there were a few things that made me laugh. Often its the irony of a situation that becomes the comedy. At the ER this morning while the aides were changing Mark's clothes, I opened the curtain in front of the door. The aide cautioned that we didn't want to give a free show and I countered that we could charge admission and use the money for the co pays. Most surprising thing today was how understanding the ER doc was about not pushing a bunch of test, xrays or scans.
Prayers for all or us
Pat
Posted 2/27/2014 3:02 PM (GMT 0)
It seems like only yesterday my husband passed away. It has been 1 1/2 years he passed away 1 day before my Birthday I sometimes think it was that day so he will forever be tied to my heart.
The last days were difficult , but yet something sadly special. We spent most of the last days together. He was in the local hospital (a small town of 1,100) he had the best of care as most of the staff he knew and they treated him so well , even making special meals for him as he couldn't eat a lot of things. It was hard , for me, to see the person who I married at the age of 19 and who had taken such good care of me, my partner , but mostly my best friend. He quietly slipped away in his sleep, went to sleep in the evening and never woke up. We, our kids , or grandson, he had a special closeness to sat by his bed and watched him slowly take his last breaths. It was sad, but yet a relief , he had suffered so much the last while and he was ready. I don't think I was ever ready as I miss him every minute of every day. It does get easier , but I don't know if I will ever not miss him. I survived those last days on auto pilot and honestly I don't remember the days after he died.
The one thing I can say we did was talk a lot about everything, some of it was not easy, but we did not want any regrets..
This is probably the first time I have written down what actually happened. I try so hard to spend every day with an good attitude as I know my husband would be sad if I just sat around feeling sad.
It's been a journey, but I go on knowing some day we will be together again.
Thank you for letting me express myself in this forum.

My husband was 58 when he passed I was 53. Too young.
My husbands only regret was he ignored the symptoms, until it was too late. He was diagnosed with psa 100 Gleason 8. Had radiation, treatments, hormone therapy, chemo and zytiga. He lived 5 years after diagnosis . To honour my husbands struggle I tell anyone who will listen. I believe. Get your psa checked at 40 so you have a baseline. Even if you have no family history as my husband did.



Take care all and remember everyone is so different with this disease, never give up hope.
To all the wives out there my heart is with you.
Posted 2/27/2014 3:44 PM (GMT 0)
To Tednsal .......

   I hope all went well with the infusion for Ted yesterday. Happy 50th to both of you. Please, when you have time, see "My Journey with Jevtana".

   And hoping that Teds' side effects will ease up. Did the Oncologist suggest 4-week intervals instead of 3-week intervals?

   Sorry for this (sort of) midwest winter! It's been cruel!

Peace and wellness

Rob & Gizmo

 

Posted 2/28/2014 3:39 AM (GMT 0)
Dreamer 44,

My heart is with you and Mark. We have had some drama over the last week, so I have not been on the boards. He knows he is loved, and that will ease his way, I hope.

I will update from this end soon.

Susan
Posted 3/4/2014 7:18 PM (GMT 0)
I am closing out this thread so it doesn't get too long for the software to handle. Please continue the conversation in The new continuation thread.

PeterDisAbelard
Posted 3/4/2014 7:29 PM (GMT 0)
I will be locking this thread in a few minutes. Please use the continuation thread (--Here--) to continue the conversation.

Last Call -- PeterDA

Done. Please use the continuation thread.
✚ New Topic locked
123456789