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Incontinence--Pads,Personal, Private Thank Goodnes for CSN

lion1
Posts: 240
Joined: May 2007

Incontinence, it's not like you could talk about it with people you know--maybe your wife or your parents, but beyond that it's a difficult dilemma. It's not like you could go to work and tell your fellow workers that you're really leaking badly today, or wow! I only used three pads today. How many times have you sat in important meetings with your boss or staff and felt yourself leaking and just carried on like normal? Well that happens about every day. This is just the reality of living with incontinence. You can never disclose to anyone, but fellow sufferes what's going on. The fact is that incontinence, depends, diapers are the brunt of so many jokes, it's endless. I am a glad I am not a person who ever made jokes about people's handicaps or suffering. If I did I might believe that's why this happened to me. But that's not the case, and that's not why things happen. I think it a bit awkward whenyou're around folks who are talking or making cracks about peeing your pants. Could you imagine the ridicule from these folks if they knew you were incontinent?

Cancer scares everyone to hell---they won't joke about that. But incontinence, that's hilarious to many, until they are stricken with it. These experiences occur in some form or fashion around us periodically. Of course, we don't rebel, we can't, we just think if you only knew. These is some of the reality that lies out there.

Obviously, I am only speaking of incontinence, because that is my challenege, but others with other diseases, ailments, or afflictions, encounter their own hell.

These are the things that are written in books where reality is what we have to deal with---an additional challenge plus everything else.

I wrote this only to bring light to things we never discuss normally on this network----I by no means am writing this to IMPLY WOE IS ME. I am strong, positive and know that I will in the near furtue post my cure and maybe a cure many others.

Thank God for CSN!

Lion1

marc1957
Posts: 79
Joined: Oct 2009

I agree.

I will add that some people just dodnt know how to handle others inflictions.

I had lung cancer 11 years ago, and right after my return to work ( 3 months off ),
it was merit/appraisal time. My boss indicated that he wished it were more, but they judged it on lung capacity that year.......

I knew he was attempting humor, since I had 2 lobes removed from my rt lung.
However, some dam things just arent funny no matter how you spin it, and I told him in no uncertain terms, Dave, I fail to see ANY humor in that statement.

He apologized and life went on, he retired at the end of 2009, hope life treats him well.

regards

-marc

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

It amazes me how insensitive some people in the world are. Perhaps they are not insensitive but instead just lack enough intelligence to understand how thoughts made public can harm people. Sorry you had to endure that senario at your workplace. I believe what goes around will come around for most people...eventually. No one is ever immune to disease we are all living proof of that...I would not in a million years
ever thought I would have contracted cancer in my life until it was in the end and to late to affect my life anyway. I was under the believe that my athletic training from a very early age would have protected me from anything like this...I have run over 100,000 miles in my life and competed at a very high level in collegiate athletics yet I am now sitting here with a catheter for the second week and just noticing on my post op report that I had perinueral invasion (PNI) and still may have cancer in my body. Well, forward and onward to battle yet another day against pCA. We all need to stay focused and continue our diligent efforts to beat and survive while squeezing each drop of pleasure from every day! If this has reinforced anything it sure has SCREAMED into my ear..."have fun in your life with all the people around you"...which is something I have always subscribed to even pre-pCA. So with that, I have to get back with sharing time with my mother who has come from Colorado to be here for another week during my recovery.

God Bless all!

Randy in Indy

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

I think people think "it's not me" so "I will be fine" and they do not know how to react or what to say when in a discussion about cancer or disease and it's side effects.

I too, want to shout ..."have fun in your life with all the people around you".. .

jim (shubbysr)

Ocean-View
Posts: 26
Joined: Jul 2009

When I told friends and family that I had prostate cancer, I also told them I was going to have da Vinci surgery. I told them right up front that I would be temporarily incontinent, impudent. I told them both would go away as I healed from the surgery. I told them I would be taking ED drugs to promote healing and would be in depends for a while until I healed from the surgery. I also told them that as of new years I am off all pads. Three months after surgery.

Don't make assumptions about what other people will think about you. When I told my friends about getting off the pads, they congratulated me and then we moved on. Don't be afraid to tell people the truth, they can handle it, everybody knows someone that has or had cancer.

In continence is just a temporary part of prostate surgery. It is easy to control with depends and depend guards.

Tom D Orlando

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

I am lucky I work with the aged care industry al my co workers and patiants are very understanding and have followed my progress since surgery great support very caring and understanding ,my friends and family have been great a little family humour at times but hey thats my family . I have almost been 6 weeks and down to 1 pad at night and 1 at day still some leaks but getting so much better .Hope I will be no pads at 3 months good luck to everyone its just so good to be back at work and alive .alive thats a great word cheers everyone good luck and god bless.

lion1
Posts: 240
Joined: May 2007

Ocean-view,

You're explanation about incontinence is one-sided --your side. Incontinence is not temporary when you have it for years. You're lucky and good for you only 90 days incontinence. Your comments are insensitive and reckless! If you think you should walk around telling co-workers and friends you're incontinent, then I'm not sure what world you live in.

Incontinence is temporary ,but the length and the treatments that one must endure to get there is a big struggle for some.

You need to apologize to all us Men who have struggled with incontinence for years!

You assumed everyone is just like you-----bad post!!

Lion1

142
Posts: 169
Joined: Dec 2009

Lion1,
Thanks for a proper reply. I wrote one, and almost tagged Ocean-view's post as offensive. But I re-read my response before hitting post, and although it was and still is a proper expression of my thoughts, it would have been even more offensive.

Ocean-View
Posts: 26
Joined: Jul 2009

Sorry, I didn't set out to offend anyone.

You are correct, my explanation is one sided. I can only speak for me and how I have progressed. That is the purpose of these discussions, to let others get an idea what to expect from all of us. We will all heal at different rates.

This is the progression I was told by my surgeon before surgery. He based my expectations on his experience with hundreds of patients. This is how it progressed for me, and should for others. Of course we are all different. Your experience is different than mine. I'm sorry that you are continue to have problems. I hope you have a speedy recovery.

Tom

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

I to appologise i thought you may have been offended by my comments about talking to my co workers and friends ,I just find I need all the support I can get it is good to talk to friends and close co workers just to unload somtimes ,yes incontinants is very difficult to handle .It takes a while to get used to I still get angry. I am so glad i can talk to other peers who are dealing with it each day like myself .once again thanks for the forum it gives me hope to here of other peoples progress .Take care all shane

Trew
Posts: 892
Joined: Jan 2010

Did you hear about the man who called the Incontinence Hotline for help and when he got through the person on the other end said, "Can you hold?"

I know, not so funny. I am two weeks out of radiation. I was almost dry when I started radiaiton and now I am back to where I was a few months after radiation having a lot of stress incontenecy. It is enough to make a me want to cry at times. I was told I would return to what I had before radiation treatment, but right now it is all emotionally raw again for me.

I am trying to be strong, positive, and upbeat, but it is very hard for me to be a dribbler. I remember life before cancer, before surgery, before hormone shots, before radiation and sometimes it is a bit overwhelming.

And thank God for pads!!

cgerhardt's picture
cgerhardt
Posts: 10
Joined: Oct 2009

I have been dealing with incontinence for 18 months post RP surgery. I was pretty open with people close to me at work including subordinates and peers. I referred to it as "plumbing problems". With friends and family I was also open with them and found that helped. I learned to cope with the problem as a constant leaker by using a Cunningham Clamp and pad during the day at work (office worker) and even playing golf. This eliminated the need for changing pads every two hours or so. This prevented me from needing to constantly apologize for anything and life went on pretty much as normal. Granted it was not all that comfortable at times and the clamp is not by all means a perfect solution but it did work for me.

I just returned from male sling surgery and had a Coloplast Male Sling inplanted Wednesday. I have posted the full details on healingwell.com, prostate cancer, forums under thread tallmans journey to coloplast male sling if anyone wants to see the details. Still recovering but so far it appears I am dry. There are solutions out there and the good news is that these problems can be fixed.

Trew
Posts: 892
Joined: Jan 2010

Can you keep us posted on how that sling is working for you? What was the surgery like t get it installed?

I just added up the cost of pads for 2009. They came to $538. Hard to beleive I spent that much but the first 2 or 3 months I was using maybe 6- 8 pads a day, easy.

I itemize my taxes and I will be claiming pads as a deduction this year.

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