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Posted 9/6/2006 6:23 PM (GMT -8)

Mkat,

Have your husband keep the ointment on, it will help for sure with the catheter.  Also, when I only took Tylenol at night I did not sleep well.  When I took vicaden (sp?) similar to percocet, I also took a pill for naseau, I slept much better.  Call you doc and get the pills for naseau to take with the stronger pain killer and he should sleep better, that was my experience anyways.

DWT, your are doing a procedure not many have had on this forum and I will be very curious how things go with it.  It will give many of us new information first hand on this technique.  I do know the flight back will be rough for you both, but good drugs may help :-) ?  I wish you both the best as I know it has been very stressful.  Please let us know how it all goes.

One more comment about all the concerns for the wives.  Remember, we (the husbands) really appreciate all your support, it would be so very difficult without it even though we may not tell you this enough.  Again, if he clams up too long you need to encourage him to talk even when he does not think he does.  One reason we clam up is if we talk about it we may get emotional and we try to avoid this!  Just how we are wired but it did help me quite a bit with my persistent (but not annoying) wife.  I tried to support her when she got depressed but she relied more on her friends to talk much with and cry with as she did not want me to worry about her.  You ladies or saints!

Michael

Posted 5/30/2010 10:36 AM (GMT -8)

Hello,

The posts here are several years old, but I am going to read them because I believe a lot of us go through many of the fears, depression, and fatique when we find out our husbands have cancer.  I am so afraid about all of this, and there seems to be a lot of support here!

Thank you!

Aimzee

Posted 5/30/2010 11:55 AM (GMT -8)
Welcome Aimzee & Ron

There are many wives/partners/daughters/sons etc here. Though as youi say this thread is old.
I guarantee you'll get support as well as information from the forum

Interesting that a surgeon wants to do a perineal prostactecomy. Any special reason not to to an abdominal, either open or robot?

Alfred
Posted 5/30/2010 3:25 PM (GMT -8)
Aimzee, thanks for bumping this post. As a daughter I completely understand how this disease affects everyone, friends and family. The day I found out my dad's news back in march this year I cried for two days and didn't go to work. The c word and the thought of losing my dad was the most frightening experience..hell I even had his eulogy playing out in my head. Being so far from family at this time was very hard and I've never felt so useless before.

However in saying that, life does keep moving on, treatment will start and you will feel like you are tackling this head on together. Dad has had his surgery now and now we have to wait till the next psa test. In the meantime I try not to let cancer into my thoughts too much. Talking also really helps. I've formed a close bond with a girl I work with whose mum has cancer and sharing our experiences is very therepeutic. Not to mention the amazing people on this forum who have provided so much help.

Take each step as it comes, try not to look ahead at the unknown as it is far too overwhelming and read lots as the more I've read the less scary this disease can be. Lastly, look after yourself. Never neglect your own feelings and underestimate how important your mental health is also.
Kylie
Posted 5/30/2010 4:51 PM (GMT -8)
Aimzee, I too am the wife of a prostate cancer survivor who had robotic surgery in March 2008. I'm here to help you through this and to tell you that while it's all very scary right now, you will get through it just fine.

Ask any questions you wish no matter how "delicate" or silly they may seem ... everyone on this board is here to help.
Posted 5/30/2010 10:46 PM (GMT -8)
Aimzee
I've been finding you on several threads, so I'm glad to see you've been able to start digging ariound for info.
I also saw the answer to my question above about the pernineal surgery as you mentioned that Ron had had lots of abdominal surgery/hernias so it makes sense to come in from a different angle.
Alf
Posted 6/1/2010 1:47 AM (GMT -8)

Thank you Sephie, Kylie, and Alfred for your responses.

It is strange to come here and seek advice from strangers.  Right now Ron is in a state of denial.  He is in good health, not overweight, and is active.  We have two books on Prostate Cancer which sort of gives us an idea of what to expect.  Actually, I have found out more here than from the books.

Alf, I wish my husband could have the robotic surgery instead of the perineal prostactecomy. This is what his urologist recommends.  Next week we will meet with the  multidisciplinary oncology team to explain other treatments.  There are many concerns, but one has to do with physical activity. 

Someone mentioned needing a pillow because of a jumping cat.  I have not seen our concerns mentioned.  We watch our young Grandchildren (ages 2 and three years) while their parents work.  They love playing with their Papa, everything from baseball to hide 'n seek.  Obviously, he won't be doing too much of that for awhile.  I don't know how we will deal with this aspect of life.

Funny isn't it, that I am more concerned about the little ones than about our love life!  wink   We just don't know how fast he'll bounce back and can have a normal life again.

Thank you for the welcome.


Posted 6/1/2010 5:59 AM (GMT -8)
Aimzee
I'm sure Ron will still manage with grand kids. My 74 year-old father-in-law has diabetes, PCa and heart problems (he is just about to have a multiple bypass), but he is still a great granddad. (he has 14 grandchildren with a 15th due any day now, and 8 great grandchildren)

Ron will merely have to adapt. (Less diving from the top board to show off perhaps.) And from what I've seen in my family and my wife's the little ones may actually like helping their granddad if there prove to be things he finds harder in the short term. Hide the baseball (in the long grass) and get them to find it!

Your love life will be fine, your sex life may be different, but then again different doesn't have to mean worse. Dealing with prostate cancer involves a lot of otherwise embarassing topics, but it's almost too embarassing to mention that there has been a massive improvement in my wife's sex life.

And if not robotic because of past operations etc, then why not open abdominal if you/he are not keen on perineal.

And Kylie, don't let the eulogy thing work against you, it won't go away if we're honest, so instead of worrying or being frightened about it, grab it, confront it and make it work for you. Talk to your dad about his life. (and make notes!) We've just been chatting to my f-i-l about his time in the Royal Air Force, and when he cycled along the south coast of England in the 1950s. (I am the family archivist and historian and collect the stories as well as the documents and compile the family trees. (And I think you've already mentioned you're interested in history etc so this might be ideal) My Uncle who lived in Melbourne used to send my mum (boring) tapes about how they were stting in the garden watching the roses grow, but he sent me interesting tapes about when he was a little boy and the whole family lived with my granddad in the army: eg him getting drunk in Gibraltar aged 5; watching my Grandad build a lighthouse in Bermuda; baking bread with the natives in South Aftrica or getting into trouble for setting off .303 cartridges by dropping rocks on them. My own father had a couple of heart attacks not long aftyer I was born and one of the things he did while he was recovering was to write down loads of stuff about his childhood and his relatives etc. And then he lived for another 25 years or so! The stuff he wrote down is incredible (he was old enough to have see Queen Victoria for instance)
Children can have funny relationships with their parents, but this may actually be a chance to do something really positive, and learn things (about each other) that will be so beneficial. I don't know if you know who Jeremy Clarkson is, but he was astounded after his own father-in-law had died to learn that the fellow had won the Victoria Cross in 1944 and had been unable to tell people about it. (Clarkson went on to make a documentary about him for the BBC)

And anyway I reckon my eulogy will be really short. I don't think I've done very much, instead I have a very odd attitude about my future, so that when I hear music I like I tell the family that that's what I want to have at my funeral, and their response is only to complain about how much it'll make them cry. (The list is getting so long I think it will have to be the music to go with my wake or the service will last about two hours - and given I'm anticipating several decades between now and my wake this list is going to get really long. Try Katie Melua's version of Stardust if you want to get an idea of what jerks the tears, or a massed Welsh Male voice choir singing Abide With Me.)

Sorry if this is a bit off message, but it's part of what helps me get on.

Anyway today's my 26th Wedding Anniversary so I'd better go and cook something fantastic for dinner. It's also my son's 23rd birthday, but I don't have to do anything for him this year as he's not even in the country.

Alfred.

Additon added. I reread this and it makes it sound like my family were really complaining about me picking music for my funeral when what I should have said was that we were all joking about how it would make them cry too much.
Posted 6/1/2010 1:51 PM (GMT -8)
I hate to break in on a spouse conference, but if you think you are depressed, just imagine what it can be like on this side of the C word.

Many men just clam up and tough it out. But this is a time when couples need to talk to each other, and help each other.

I could not have made it without the help of my spouse. She would not have been a lot of help if she was so depressed that all she could do was cry.

My point is, this is a depressing subject, but there are good things that can come from it. Reconnecting with each other, expressing feelings and emotions that many 50 something couples don't get around to anymore, recognizing that there are more important things to worry about than some of the petty things we worry about.

Would never say I am glad to have PC, but I will say that my spouse and I have a much different and deeper relationship than we had before I was diagnosed.

Life is still very good. The sun comes up every morning.
Posted 6/5/2010 6:03 AM (GMT -8)
My 74 year-old father-in-law has diabetes, PCa and heart problems (he is just about to have a multiple bypass), but he is still a great granddad. (he has 14 grandchildren with a 15th due any day now, and 8 great grandchildren). 

That is wonderful!  Alfred,  I actually found your whole post delightful.  I have told my children some of the songs I want, too.  Nothing wrong with that.

You have a very good perspective on marital relationships goodlife.  Thank you for sharing. 

I think we just need to get out of the DENIAL stage.  My husband's doctor says open abdominal would be painful, and he has so much scar tissue and pain from previous surgeries and such. 

_______________________________________________________

(I do the posting for both of us.)

Posted 6/5/2010 7:35 AM (GMT -8)
Aimzee - as the the cushion, cat, and grandkids - I don't have the cats or kids/grandkids, but my neighbor's small dog likes to jump in my lap at full speed. The first month or so after surgery (DaVinci 10/09) I had to learn to catch him in mid air, as the pain of the hit was significant (good solid 10 on a scale of 10).

Other movements that will be unpleasant for several weeks (at least) will be
- bending over - that which hits the floor stays there until someone else happens along, or you buy one of the reach/grabbers at Walgreens or a home care store;
- coughing/ sneezing - grab that pillow and hold it to the stomach real tight to avoid moving the gut, as this is another tear-jerking 10 for weeks;
- high steps - like stepping over a high bathtub side - this might require a small step platform to shorten the stretch for a few weeks;
- lifting anything - I was on a 5 pound limit for over a month, any then a 10 pound limit for 4 months after that - amazing how many things you buy in the economy size weigh more than 5 pounds;
- driving - once allowed by the doc, make several runs with varied turns in an empty parking lot with a friend just to see if you have any stress or strain points.

I could go on, but will refer you to the group list up at the top of the forum that English Alf posted.
Posted 6/9/2010 10:45 AM (GMT -8)
Thank you for the response.  Is 142 your name?  I got confused and thought about R2D2 and C3PO. :-)

I am so overwhelmed with that long list.  I haven't printed it up for Ron yet.  I appreciate your list as well.  Is there an approximate length of time that he won't be able to drive?  Also, four years ago he had back surgery on C 5, 6 & 7.  They put in 3 rods and 6 screws.  Will this be a major problem for him?  He already has shoulder pain. 

This may sound silly, but what kind of small pillow should I buy?

We had the multi-disciplinary session yesterday with four doctors.  Now he was all prepared for the perineal surgery, but the conclusion of the doctors are that the Da Vinci (robotic) method of surgery will be used to remove the prostate gland.  He was upset and talked to the urologist about this.  An appointment has been set for next week to meet with the surgeon.  So, the actual surgery will be later than what he thought.

Alfred, are you around today?  I will be back tomorrow.

When I come on here, this will be the first thread I go to.  Oh, and I will have to change my signature information.

Thank you so much,

Aimzee

Posted 6/9/2010 12:00 PM (GMT -8)
Aimzee,
142 is just a signon. I don't put personally identifiable information on the web - it is a very, very long story.

I didn't buy a pillow for the sneezing - just used an old side pillow from the "banished from the couch" pile. It just needs to be big enough to hug hard against the stomach - perhaps 15 inches square, more or less. You are trying to direct all the air through the lungs, not letting the stomach take the hit from the diaphram.

Driving time will be up to the doctor. Until the catheter is out, I would guess definitely not, as he will likely be taking some sort of pain meds (a DUI with my meds and state law if there had been an accident, regardless of who caused it), and just not be able to deal with emergency maneuvers. After the catheter was removed, the doctor said not until my next visit, which was a few weeks. Even then I had a little trouble the first try to get in the garage.

I have some lower back disc issues - they did not cause trouble until I started radiation, but I dealt with that by taking an ibuprophen before each session. He may have issues with being in a fixed position in bed overnight (imposed by the catheter). I bought some inexpensive full-sized bed pillows to use as stops to keep myself from rolling over on the tube. If they are synthetic and cheap you won't feel bad if they end up needing to be thrown away.

I won't speak to the comparison of Perineal and DaVinci, as I only have experience with DaVinci. Just ask them to explain why they are chosing what they chose in plain terms. If you don't understand the explanation, ask again.
Posted 6/9/2010 6:44 PM (GMT -8)
Goodlife makes a good point its better if you get it out in the open and discuess the whats giong on in your life they are a lot of us that have been thru the same circustances . Its good to get it out in the open your in this fight together and it will take both of you to get thru it.
LIVE TO THE FULLINESS EVERY DAY
DEERHUNTER
Posted 6/10/2010 6:44 PM (GMT -8)
Thank you again, 142 for answering my questions and providing advice.  Do you mind if I ask why you needed radiation?

Posted 6/11/2010 4:15 AM (GMT -8)
Aimzee,

My pre-op Gleason was 4+4 in 8 of 12 cores, so surgery was a given for everyone but the radiation oncologists, who figured I had a 70% success possibility (my luck is never good, so that was not enough for me).
Post op (DaVinci) was 4+5, multiple positive margins. Ugly. The consensus of doctors was immediate radiation of the prostate bed to maximize the possibility of a cure.
Of course, I will never know if the radiation was needed if it works. The only thing that could be definitive would be a return some years on, which would infer that we didn't get it all even the second time. At that point one would have to guess if the radiation added years to my life or not.

So the direct answer is that I don't know that I need it. It has been seriously advised as the best path by my doctors.

Post Edited (142) : 6/12/2010 12:42:32 PM (GMT-6)

Posted 6/11/2010 10:29 PM (GMT -8)
I am sorry to hear you had to go through that, 142!
Posted 6/11/2010 10:59 PM (GMT -8)
how u be i have found the  most important thing of al during my ongoiing saga is the surport of a loving partner makes the bigest diference to how one loks at life without her i feel i wod have given in so hope u get on top of it al and see a little lite at the end of the tunnel
Posted 6/12/2010 6:49 AM (GMT -8)

No, I am so sorry to say we don't see the light at the end of the tunnel, since the physicians have changed our journey.   confused   Now, we are meeting with another one regarding the Robotic-assisted

laparoscopic radical prostatectomy.   Thank you for your words of encouragement.

Aimzee

Posted 6/12/2010 4:16 PM (GMT -8)
Excuse me if, as a man, I am butting in, but one of the things that I had to learn was that this was not MY cancer but it was OUR cancer. Seeing a therapist has been a big help to me and my wife comes to about half of the sessions.

The biggest thing that we have had to work on is better communication – especially my asking about and listening to her feelings. At first I wanted to be the “Brave little soldier” and face this “like a man” but I had to realize that we had to face this like two people who loved each other. She comes to all of my uro appointments and asks her own questions.

I must tell you that this is an ongoing process – my ED has radically changed our love-making and I have had to realize that we are still learning how to be intimate when she gets no physical feedback from an erection. Thus communication becomes more important and we are still learning …

If I had to advise, I would say, “Start from your love for each other." That must always be the central issue on which communications are based.
Posted 1/21/2015 5:45 PM (GMT -8)
I am new to this forum. My husband was diagnosed just before Christmas with a PSA of 1124 which went to 1800 within a week or two. He is on hormone therapy and chemo. I feel like I am in a bad dream but cymbalta helps my depression and I take xanax to sleep at night. He tells me that I need to be strong for him. I am trying. What I don't want to do is spend the time we have left, no matter how long or short that time is, feeling sad. I want to still smile and laugh with him and when he feels good we get out and do something. When he is not feeling well we are in it together. Truth is without the cymbalta I would be a puddle of tears and fear. We have been together since we were 16 and we are 64. His Gleason was a 9 and with a PSA almost 2000 it is like a nightmare…but this is our life and we are going to fight it and get what we can out of this. I'm so glad to find you guys.
Posted 1/21/2015 6:14 PM (GMT -8)
The truth is I feel like I would like to skip a few days of cymbalta and have a few hours alone to just let it all out. I can't do that so I'll just keep doing the best I can. I find it almost impossible to concentrate and I can't think of the right word when trying to talk. I think I have a ton of stuff all bottled up inside.

Dx December 2014 Gleason 9, PSA 1124, then 1800
on HT and Chemo. His age is 64.
Posted 1/21/2015 7:10 PM (GMT -8)
Hi Tonka,
Sorry you have to be here but there's lots of support here. My doctor also prescribed the antidepressants but I never took them. I've been dealing w/ it w/o them because of past experience w/ them that make me feel "out of it". I can only imagine how scared and upset you are and how you just want to scream, cry, and go hysterical but that's not an option. Even w/ a G6 I thought I was going crazy and was trying to hold it together for my husband and our 6 year old. Do you have a support system w/ you? Friends? Cyber friends? A support group? Church group (if you are a believer)? I seriously think my biggest help was coming here and talking to men, wives, daughters that had been there and could answer questions and offer support. There's a group on FB that I belong to that is for women and it's a big help too. When it comes down to it we don't know exactly how they feel and they don't know exactly how we feel even though we are fighting the disease together. If you want the FB info let me know, if not that's ok too. Any way I can help you just let me know.~Miki~
Posted 1/22/2015 4:30 AM (GMT -8)
Hi all, I am running late and not enough time to delve deep in this thread but wanted to know you can count me in. Its hard to not be depressed and I know that later on it may become a large issue. Have already talked to a doc about this and may add a medication to my regimen to help me as she thinks it will also help my anxiety as well (which can be crippling at times).

Long day at work today with overtime (Trying to make bank for some Cajun good times!) but will spend some time on this soon.
Posted 1/22/2015 1:45 PM (GMT -8)
I have not read through the thread yet, but assure you all caregivers get depressed.

There was a thread devoted to caregivers. Here's one I found with a forum search

www.healingwell.com/community/default.aspx?f=35&m=3009873

which is on its fourth iteration to circumvent forum thread length capacities.

The best statement I have seen from the man's prerspective is Todd's blog

toddseals63.blogspot.com/

my favorite of Todd's blogs

Friday, July 26, 2013
The Emotional Cost
It is Friday morning July 26 and I am at work. I always have a lot of typo's when I write from my phone but I have to write when I feel it inside otherwise anything of value is lost. I am hurting inside and it is not likely to go away anytime soon. I hurt not for myself but for the love of my life and what prostate cancer does to her.
When I met Mandy I knew that I could search for the rest of my life and never find another like her. I had never known anyone so full of joy and so in love with life. It took so little to make her happy. In a material world all she needed was a bike and a kayak and her V.W. bus. That is the woman I fell in love with. We had a few short months before my diagnosis and a few months after before hormones took away my libido. She should have left. Sometimes I wish she would have. Mandy met me a week after I turned 42. She was 27 and a single mom. The age gap didn't matter. She loved me. She still does and it kills me to watch this disease erode away the joy that makes her so amazing. Sadness is the new normal. It takes so little to make her happy. She just wants to be wanted. She just wants me to look at her the way a husband should. I make excuses and many are valid. Life does happen but truth be told a husband with a normal libido would make the time. It would be a priority. I love her so much. I ache for her. I am so frustrated I spew venom. I poison our marriage. Do I want her to leave? Perhaps I do. I love her and it would kill me inside but what do I have to offer. She is a wonderful mother but because of me she will have only one child. Our daughter will be 18 and out of school in less than three years. I may be gone soon as well. So will the best years of her life. It is not fair. What does she get out of this deal? She tries so hard to keep the intimate part of our marriage alive. More often than not she feels rejected.
People have told me that if I had to get cancer that I got lucky that it was PCa. Those people are ignorant. Prostate Cancer is a slow death taking many casualties along the way. I compare what my wife goes through to watching a beautiful flower wilt and die due to lack of life giving water. It is wonderful that science has given me more years but is it too much to ask that I spend a little of it feeling masculine. Is it too much to ask that I be able to let my wife know that I see her as more than a friend and a partner. I want to show her she is attractive and desirable and wanted. These are the emotional casualties of Prostate cancer. Largely the patient does not feel it. Like a castrated dog he no longer thinks about sex. At least I am alive. What a pity. I always thought my wife would have to watch me die. Turns out to be the other way around. Todd

Do yourself a fovor though and page through Todd's entire blog.

LupronJim
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