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What a shock

User
Posted 18 Aug 2017 at 07:31
For the last several years I've been having my PSA CHECKED it had been going up each time My doctor was convinced that it was just the aging process The last test saw it double So to put my mind at rest sent for biopsy After biopsy spoke to consultant who said other than enlarged All feels ok Went away confident that results would be fine Returned to hospital for results to be told aggressive Prostate Cancer Had MRI AND BONE SCAN opted for removal Operation 2 weeks ago Was surprised at lack of advice as to what to do Given Prostate Uk booklets to read and left to make my decision The waiting begins as does the recovery
User
Posted 18 Aug 2017 at 14:47

I get so cross with these GPs (?) who don't follow up because they think they know it all.

Yes age can make a difference but if it had been investigated earlier then you wouldn't be where you are now would you.

Anyway, what's done is done. If you go to Publications you can download the Toolkit which will give you information (in fact that may well be a lot of the booklets you've already been given)

You have had major surgery so don't try too much too soon, you are still healing inside. Try and avoid constipation as that will make things worse.

I am sure that you will get response from others so hang in there and you'll get all the support you need from those men who have been there (and in some cases - wear the T.shirts too)

We can't control the winds - but we can adjust our sails
User
Posted 20 Aug 2017 at 20:01

With regards to PC, the diagnosis, treatment and follow-up in the UK I have been consistently amazed at the inconsistency in the NHS from hospital to hospital, consultant to consultant etc., etc. But . . . I am even more amazed at the donkeeps (donkey/sheep) that populate this country the vast majority of whom are CONVINCED that the NHS is doing a good job. In my opinion (taking aside some individuals who are doing their best) it is not simply badly managed it simply is not managed at all, it's a series of overpaid senior managers/consultants with an exaggerated view (exaggeration encouraged by the donkeeps) of their own self importance.

Got that off my chest . . . .

User
Posted 20 Aug 2017 at 20:19

I don't think this forum is the place for political rants, especially on a new member's thread!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Aug 2017 at 12:42
I was not trying to generate any political belief Having said that I am very disappointed at the level of support offered to me outside of Prostate Cancer UK I am 69 My wife is 73 She is waiting for an operation herself for a prolapse We tried to get help from the district nurse only to be told we didn't qualify We tried unsuccessfully to get doctors appointments We we're eventually offered an appointment with a nurse who was reluctant to help said that they'd get a doctor to phone the next day Doctor phoned next day simply told to contact the ward that discharged me Tried and the phone just kept ringing After 10+ with no answer I gave up Tried support nurse got answer message left message no response All of this after an incident on the ward where I flooded the bed after telling them that catheter was leaking They said they were busy but would sort something Dressing gown wet through along with bed sheets Sat in dressing gown for 2hours no one came Called them again Eventually someone came and sorted Back in bed about 3 hours after initial request I am not a political animal but I am genuinely disappointed at the way things have gone and at the level of support I've received The whole emphasis was on getting you out of hospital ASAP and the fact that I was unfortunate in getting an infection with high temperature seemed to me that I'd become an inconvenience I hope I'm the exception but in truth others I have spoken to share my disappointment At night there was a high reliance on Agency staff and not unusual to different people with reduced staffing levels I am very grateful that the NHS may have saved my life but I'm still in limbo waiting for my follow up appointment and biopsy results to confirm if it has spread So the waiting continues Having said all of this My consultant and theatre staff were brilliant as were most of the nursing staff The support staff providing meals and cleaners were brilliant always cheerful and worked very hard which really helped to cheer people up
User
Posted 22 Aug 2017 at 15:04

Originally Posted by: Online Community Member
I was not trying to generate any political belief  

 

Oh no! Sorry Flakey, I wasn't grumbling at you!!! I was a bit upset that Nomad thinks those of us who believe NHS staff do a great job in almost impossible circumstances are donkey-sheep. 

 

I am really sorry for you that you have had such poor service. Have you tried contacting the PALS at your hospital - you should be getting better aftercare than it seems you have had thus far. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Aug 2017 at 15:17

Definitely contact PALS Flakey.

I did it with a complaint when they kept cancelling John's appointments and I got a very fast response and an appointment that took place BEFORE the last one they cancelled, so they do take notice.

Your aftercare should not be so hit and miss and it isn't acceptable. If you let it go not only do you suffer but so do all the other men who follow you. If nobody complains they will think they' re doing a good job and will continue - same old, same old.

There is a world of difference in moaning for the sake of moaning and when you feel abandoned, which you appear to have been.

Go get 'em !!

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2017 at 15:47
I can only reiterate that you rea should contact PALS at your hospital. I did so when things went pear shaped with my husband's treatment and things have improved dramatically .
 
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