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Depressed

User
Posted 07 Feb 2018 at 11:38

Hi I'm a newbie, and becoming very depressed. I had radical prosectomy (open) on 8th January 2018. Must say since diagnosed on 20th December 2017 PSA 9.6, Gleason 4+3=7, the NHS can not be faulted. everything happened with maximum speed. Scans MRis Byopsies and operation. Since operation and catheter removal (19th Jan) nothing! No contact from any one. Wetting myself every 5 minutes, pad changing all day, feeling very down at the moment not sure how long this will all take to stop. Please someone give me some hope.

Thanks

Barry

User
Posted 07 Feb 2018 at 13:53

Hello Barry and welcome to the site.

I do understand your depression but as far as your bladder is concerned, it is very very early days. Not much comfort at present, but it will hopefully improve for you as time goes on.

Your body has been mauled around inside and still needs time to heal itself so you will have to be a patient patient for a little while longer. Yes, some men are fortunate in that they are dry almost straight away, but as I say, they are the lucky ones.

As for nobody contacting you, didn't the hospital give you a specialist nurse's number when you a were discharged? What were you told to do in case of problems (ie infections etc) ?

Of course there is hope. What you are currently feeling is isolated but you aren't alone anymore are you, because you joined this site.
By the way, do you have anyone at home you can talk to or are you on your own?

Any questions please ask, and hopefully somebody will come along and answer them

There are also specialist nurses on this site who can advise you. While you are waiting for a reply on here, why not go to the phone number given on here and speak to one of them.  (found it for you 0800 074 8383) .

They will be able to reassure you that you need to give yourself time. They may also be able to point you in the direction of further help from the hospital.

When is your hospital follow up appointment?

Edited by member 07 Feb 2018 at 13:55  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 07 Feb 2018 at 15:34
Hiya Barry,

I reiterate everything that Johsan has posted. It really is early days and not at all unusual to experience these low feelings and symptoms post surgery. My surgeon told me I was in for a miserable month which was the case. Recovery varies from person to person so I'm sure you'll improve. All what you've experienced thus far, diagnosis, surgery and commencement of recovery has a big impact on us.Stay as strong as you can and try to regain some positivity.It won't always feel as dark as it does at this stage. Take care mate.

Paul.

User
Posted 07 Feb 2018 at 15:45
Hi Barry

Sorry that you are feeling a bit down at the moment but these are still early days. Your insides have been subject to a fair bit of trauma and it takes time for things to settle down. The hospital didn't chase after me once the catheter was taken out and I didn't expect them to but with the paperwork I was given on discharge was a contact number to ring if I had a problem.

I guess the big question is whether you have a problem.

I was told that following the catheter removal I could be dry straight away, I might never be totally dry or recovery could take 12 months or so. The truth is that nobody can tell you. It's a nuisance having to keep changing pads but you need to stay positive and try to get on with things but wearing pads. In my case I found that the night times gradually improved until although I was wearing heavy duty pads they were dry in the morning. During this time I was experimenting with different ways of standing up as the auction of bending and using stomach muscles also emptied my bladder. Bit by bit things improved but it took me about 5 months until I was almost back to normal. There might be a continence unit in your area that might give you additional advice but if you are really concerned then ring the contact number you were given.

I'm sure that it will improve but even if it takes longer than you would like take comfort from the fact that the operation is now over and hopefully you may be on the road to recovery from the cancer.

You can always post updates on this site as your news will always be helpful to someone else and we everyone likes to know how you are doing.

All the best

Kevan

User
Posted 07 Feb 2018 at 16:06

Had my RT Op on the 13th December. Catheter removed on 28th December. Like you I was leaking a lot to begin with but things are now starting to improve. I still leak every time I sneeze, cough or laugh. I appreciate everyone will be different and it may take different timescales for things to get better. Don't give up hope.

Good Luck

User
Posted 07 Feb 2018 at 20:41
Hi Barry. My husband had his catheter out over 8 weeks ago now. Although we were prepared for the possibility of incontinence for a time after surgery I don't think he expected it to be as bad as it was. The surgeon had said " you may be a bit leaky" Quite an understatement.

When we got home it took us a couple of days to regroup and I got him to ring hospital for an appointment with a continence nurse which helped so you may wish to do this for a bit of support. He/she will assure you that most likely your situation will improve significantly in time although as folk have already said no one can give any guarantees or time scale for recovery.

At first we were just relieved the cancer seems to be gone ( no guarantees there also however) but he is being pro active and seeing a specialist physiotherapist to help him work at strengthening his pelvic floor muscles. Don't get downhearted Barry.

You will find that you will manage better as time goes on and remember it will most likely be a temporary situation. There is always the conveen sheath system ( husband got these on NHS prescription) or dribble stop type clamp(s) to consider if you want a break from the pads.

Wishing you a speedy recovery.

Ann

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User
Posted 07 Feb 2018 at 13:53

Hello Barry and welcome to the site.

I do understand your depression but as far as your bladder is concerned, it is very very early days. Not much comfort at present, but it will hopefully improve for you as time goes on.

Your body has been mauled around inside and still needs time to heal itself so you will have to be a patient patient for a little while longer. Yes, some men are fortunate in that they are dry almost straight away, but as I say, they are the lucky ones.

As for nobody contacting you, didn't the hospital give you a specialist nurse's number when you a were discharged? What were you told to do in case of problems (ie infections etc) ?

Of course there is hope. What you are currently feeling is isolated but you aren't alone anymore are you, because you joined this site.
By the way, do you have anyone at home you can talk to or are you on your own?

Any questions please ask, and hopefully somebody will come along and answer them

There are also specialist nurses on this site who can advise you. While you are waiting for a reply on here, why not go to the phone number given on here and speak to one of them.  (found it for you 0800 074 8383) .

They will be able to reassure you that you need to give yourself time. They may also be able to point you in the direction of further help from the hospital.

When is your hospital follow up appointment?

Edited by member 07 Feb 2018 at 13:55  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 07 Feb 2018 at 15:34
Hiya Barry,

I reiterate everything that Johsan has posted. It really is early days and not at all unusual to experience these low feelings and symptoms post surgery. My surgeon told me I was in for a miserable month which was the case. Recovery varies from person to person so I'm sure you'll improve. All what you've experienced thus far, diagnosis, surgery and commencement of recovery has a big impact on us.Stay as strong as you can and try to regain some positivity.It won't always feel as dark as it does at this stage. Take care mate.

Paul.

User
Posted 07 Feb 2018 at 15:45
Hi Barry

Sorry that you are feeling a bit down at the moment but these are still early days. Your insides have been subject to a fair bit of trauma and it takes time for things to settle down. The hospital didn't chase after me once the catheter was taken out and I didn't expect them to but with the paperwork I was given on discharge was a contact number to ring if I had a problem.

I guess the big question is whether you have a problem.

I was told that following the catheter removal I could be dry straight away, I might never be totally dry or recovery could take 12 months or so. The truth is that nobody can tell you. It's a nuisance having to keep changing pads but you need to stay positive and try to get on with things but wearing pads. In my case I found that the night times gradually improved until although I was wearing heavy duty pads they were dry in the morning. During this time I was experimenting with different ways of standing up as the auction of bending and using stomach muscles also emptied my bladder. Bit by bit things improved but it took me about 5 months until I was almost back to normal. There might be a continence unit in your area that might give you additional advice but if you are really concerned then ring the contact number you were given.

I'm sure that it will improve but even if it takes longer than you would like take comfort from the fact that the operation is now over and hopefully you may be on the road to recovery from the cancer.

You can always post updates on this site as your news will always be helpful to someone else and we everyone likes to know how you are doing.

All the best

Kevan

User
Posted 07 Feb 2018 at 16:06

Had my RT Op on the 13th December. Catheter removed on 28th December. Like you I was leaking a lot to begin with but things are now starting to improve. I still leak every time I sneeze, cough or laugh. I appreciate everyone will be different and it may take different timescales for things to get better. Don't give up hope.

Good Luck

User
Posted 07 Feb 2018 at 20:41
Hi Barry. My husband had his catheter out over 8 weeks ago now. Although we were prepared for the possibility of incontinence for a time after surgery I don't think he expected it to be as bad as it was. The surgeon had said " you may be a bit leaky" Quite an understatement.

When we got home it took us a couple of days to regroup and I got him to ring hospital for an appointment with a continence nurse which helped so you may wish to do this for a bit of support. He/she will assure you that most likely your situation will improve significantly in time although as folk have already said no one can give any guarantees or time scale for recovery.

At first we were just relieved the cancer seems to be gone ( no guarantees there also however) but he is being pro active and seeing a specialist physiotherapist to help him work at strengthening his pelvic floor muscles. Don't get downhearted Barry.

You will find that you will manage better as time goes on and remember it will most likely be a temporary situation. There is always the conveen sheath system ( husband got these on NHS prescription) or dribble stop type clamp(s) to consider if you want a break from the pads.

Wishing you a speedy recovery.

Ann

User
Posted 08 Feb 2018 at 11:52

Many thanks for all replies, I take comfort from them all. I am to see surgeon 12 weeks after operation which was on 8th January, and hope everything went well. I was told before operation that prostate once removed would be sent to lab to be looked at. It seems to me that 12 weeks is along time to wait for answers, is this normal, what happens if cancer had spread is time delay important.

Once again many thanks for all answers.

Best Wishes to all fellow sufferers.

Barry

 
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