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User
Posted 05 Dec 2018 at 23:03

Hi All 

During my conversation with my GP I told her that I ve feelings that I don't fully empty my bladder 

Than she said OK lets check up your prostate than asked me if I prefer one of her male colleagues to exzam me, I said a finger is a finger male or female I don't mind but logically your finger is smaller than his and you can be more gentle .

***I WAS WRONG!***

She asked me that How do I feel?I said I don't know ..I don't get fingers everyday in my bum!

But I did have pain though. Any way after that Had MRI and Biopsy than

I'm diagnosed with prostate cancer 

But The way I was told that I have cancer was so ridiculous no respect emotional support etc.

Anyway I was told that by the person whom told me that I have a cancer  a key worker my key worker  NURSE!

 I have never heard of from her again  no phone calls no letters nothing. 

After Attended a Surgery school session I seen a radiotherapy specialist lady. She told me that if I want to freeze my sperms thab she could help me for that but once again nothing heard of from her again as well. 

I was supposed to be having RS this coming saturday but they phoned me up yesterday and said operation has been cancelled. Than this morning they phoned me up again and  I can have the operation tomorrowmorning!

Update: Had RP surgery operation last December 2018.since than having rest,doing pelvic floor exercises  ,same time attended a seminar of ED at the hospital. 

But after the operation I had a rough time very rough time. 

After the operation I was feeling sick vomiting all the times,nurses supposed to help me out for walking but they did not! According to procedures after the RP surgery all the patients should walk to prevent blood cladding. First night was horrible really horrible the bank nurses/agency (I was told after when I complaint about them ) they were so loud ,noisey, middle of the night time they were playing music videos etc from their phone but they did not use headphones. They were even singing  their ethical songs!!! They did not say good night.good morning etc at all.they were so rude. At one point one of the nurse she was was pulling my catheter I asked her EXCUSE ME WHAT ARE YOU DOING YOUR HURTING ME!she did not even say sorry at all.I think she was checking the night bag if it was full or level of it just to write it down but she was hurting me same time.

That in the morning day staff arrived there were 2 inexperienced nurse male and a female I asked them if they could swap my night cathere bag with a day one so I can start walking ,they couldn't manage to swap the bags so I asked for a senior nurse to do it.he did that just like that.

Than same day afternoon I asked a female nurse why's than yesterday after the operation nobody helped me to get of the bed and walk?answer were I was vomiting maybe that's why.

Anyway same evening new night staff nurses arrived (I stayed 2 nights at the hospital)

One of the nurse after she attached the night bag large one she forgot to turn the tap off so I messed up bed ,legs etc with my urine .she did not say even sorry afterwards but she did cleaned up my bed and my legs.

Fallowing day I was discharged from the hospital without any painkillers ,so they expected from me to go to a pharmacy saturday cold dark December night get pain killers after 6.30 pm.I couldn't, I live on my own so a friend of mine had to get them by Monday and I had to suffer almost 3 days taking panadol. Yes I can clearly understand that NHS has been under pressure and governments finance cuts endless but they should have given at least 1 day supply of medicines.

So why all these consistent problems happening against cancer patient's..any idea?

Thanks 

Darkrainbow 

 

Edited by member 30 Jan 2019 at 11:57  | Reason: Not specified

User
Posted 27 Jan 2019 at 23:22
And just think, if you had spent less on exploiting vulnerable women you might have been able to pay for private treatment :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jan 2019 at 09:43

Originally Posted by: Online Community Member

Lynn you made me giggle:)

Yes your right about me spending money on women:) but that is London ,s life style and when your free as bird and have no girl friend or wife the night clubs,gentleman clubs ,saunas becomes your second address plus your ex  boss owns Strips clubs chains  than you would feel that when there is a demand than you must supply ) I didn't go to football games fallow 11 football (men) players all over the country.

Ahh yes each to own 

 

 

Not to be overly censorious, but I think you may have your demand and supply sides inverted...

 

 

User
Posted 06 Dec 2018 at 02:28
Overworked and understaffed NHS staff are sometimes lacking in 'bedside manner'. Your GP should be kept informed of your situation and you could have a word with him/her. However, it has been my experienced that even GP's receive tardy reports sometimes. My GP was advised on one occasion (copied to me), that I would be given a procedure after I had actually had it, so no guarantee this will get you further on. If you want a quicker service, with more time devoted to you, you could consider paying for it as a private patient.
Barry
User
Posted 06 Dec 2018 at 03:14
It takes two to three weeks for letters to my GP surgery to be scanned into their computer system, so the GP can actually read them.

The practice manager is in denial, and she blames it on the fact that ‘we are the biggest practice in Coventry, with over 20,000 patients’. It’s only open 4 1/2 days a week, FFS, and most of the doctors are only part-time.

Cheers, John.

User
Posted 08 Dec 2018 at 00:15
There is - contact PALS at the relevant hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2019 at 17:46

I too feel like they have treated me in same way, like they have said to me, you have prostate cancer, now get on with it, have all these promises, we will support you by never returning your phone calls, never phoning you, only writing to give you appointments every 6 months, only to give you another psa blood test, promises mri scans every 3 months, yet no mri for 15 months now, I have even had to arrange my own counselling because that is another promise they have given me, I hope you do get your operation & that it a success

 

User
Posted 27 Jan 2019 at 20:46

Hi Anakie 

I had the RPP operation and before the operation and after the operation I have heard of from my Key or district nurse  nothing at all.

I can make list of the mistakes they made before and after the surgery but it's not worth I cannot gain anything really sorry but this is a supposed to be a democratic country civil country in reality this is a centre of democracy (Britain)

But saddly proven MONEY TALKS EVERYWHERE .

****no money no honey ****

Good luck mate 

And thanks for your comment. 

Edited by member 28 Jan 2019 at 07:40  | Reason: Correction

User
Posted 28 Jan 2019 at 14:58
Hi

Have a look at the information in the thread below which I put together some years ago. Much of it will still be valid and may be of interest to you in your present situation.

http://community.prostatecanceruk.org/posts/m141866-COMPLAINTS-AND-REPRESENTATIONS-ETC---PART-2#post141866

User
Posted 28 Jan 2019 at 23:00

Sumdumbloke

 

Already have mate:)

User
Posted 28 Jan 2019 at 23:46

Can I reserve a seat at the  Prostate cancer UK annual bash on the same table as Lyn and Dark rainbow?

Edited by member 28 Jan 2019 at 23:49  | Reason: New

User
Posted 29 Jan 2019 at 08:48
Lyn, Dark rainbow and Bollinge would be my choice!
User
Posted 30 Jan 2019 at 07:47
DR, I would just add that your assigned cancer nurse is there for you to contact her when you need help with something. She won’t contact you. If you have questions, phone her - that’s what she’s there for.

Chris

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User
Posted 06 Dec 2018 at 02:28
Overworked and understaffed NHS staff are sometimes lacking in 'bedside manner'. Your GP should be kept informed of your situation and you could have a word with him/her. However, it has been my experienced that even GP's receive tardy reports sometimes. My GP was advised on one occasion (copied to me), that I would be given a procedure after I had actually had it, so no guarantee this will get you further on. If you want a quicker service, with more time devoted to you, you could consider paying for it as a private patient.
Barry
User
Posted 06 Dec 2018 at 03:14
It takes two to three weeks for letters to my GP surgery to be scanned into their computer system, so the GP can actually read them.

The practice manager is in denial, and she blames it on the fact that ‘we are the biggest practice in Coventry, with over 20,000 patients’. It’s only open 4 1/2 days a week, FFS, and most of the doctors are only part-time.

Cheers, John.

User
Posted 06 Dec 2018 at 06:32

Let us know if your operation goes ahead ??????

Regards

Ann

User
Posted 08 Dec 2018 at 00:05

My experience was similar. After a biopsy the first thing I heard was that an appointment had been made for me with a surgeon who specialised in prostate cancer. I got this this letter and decided that it was obvious that I had prostate cancer. Within an hour of getting the letter I received a phone call from hospital to arrange an urgent bone scan. The person I spoke to could not tell me why I needed a bone scan and did not know the results of the the biopsy. I then came to the conclusion that not only did I have prostate cancer, I had advanced prostate cancer. I attempted to get details of the biopsy results from the hospital but they could only say that they had written to the GP. Upon ringing the GP over the course of 5 phone calls which included one call which was not returned, I was informed that they had not recieved anything, although one person that I spoke to accepted that they had a bit of a backlog with mail (I have electronic access to my medical records). Eventually I gave up and just waited for my appointment with the surgeon. He seemed surprised that I had heard nothing and went on to say that al indications were that the cancer was confined to the prostate and that surgery was likely to be curative. The bone scan was clear and routine for Gleason 7. It seems odd to say that I was relieved but I went into that meeting that intending to ask “how longl have I got” and was releaved that it was potentially curable and at least treatable. I have no issue at all with the medics I have met to date but they are clearly being let down by inefficient Managent who appear to be incapable of putting basic processes/systems in place to ensure adequate communication with patients. A short phone call to inform me of what was happening and why would have avoided a lot of stress for both me and my family. There should be a some way of feeding this back to the NHS trusts.

User
Posted 08 Dec 2018 at 00:15
There is - contact PALS at the relevant hospital.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Jan 2019 at 17:46

I too feel like they have treated me in same way, like they have said to me, you have prostate cancer, now get on with it, have all these promises, we will support you by never returning your phone calls, never phoning you, only writing to give you appointments every 6 months, only to give you another psa blood test, promises mri scans every 3 months, yet no mri for 15 months now, I have even had to arrange my own counselling because that is another promise they have given me, I hope you do get your operation & that it a success

 

User
Posted 27 Jan 2019 at 20:46

Hi Anakie 

I had the RPP operation and before the operation and after the operation I have heard of from my Key or district nurse  nothing at all.

I can make list of the mistakes they made before and after the surgery but it's not worth I cannot gain anything really sorry but this is a supposed to be a democratic country civil country in reality this is a centre of democracy (Britain)

But saddly proven MONEY TALKS EVERYWHERE .

****no money no honey ****

Good luck mate 

And thanks for your comment. 

Edited by member 28 Jan 2019 at 07:40  | Reason: Correction

User
Posted 27 Jan 2019 at 23:22
And just think, if you had spent less on exploiting vulnerable women you might have been able to pay for private treatment :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jan 2019 at 07:40

Lynn you made me giggle:)

Yes your right about me spending money on women:) but that is London ,s life style and when your free as bird and have no girl friend or wife the night clubs,gentleman clubs ,saunas becomes your second address also you would feel that when there is a demand than you must supply ) I didn't go to football games and  fallow 11 footballer (men) players all over the country.

Ahh yes each to own 

 

Edited by member 28 Jan 2019 at 22:15  | Reason: Not specified

User
Posted 28 Jan 2019 at 07:43

After my surgery whilst I was living with catheter for 2 weeks I made countless times phone calls to PALS  but I couldn't get through .

User
Posted 28 Jan 2019 at 09:43

Originally Posted by: Online Community Member

Lynn you made me giggle:)

Yes your right about me spending money on women:) but that is London ,s life style and when your free as bird and have no girl friend or wife the night clubs,gentleman clubs ,saunas becomes your second address plus your ex  boss owns Strips clubs chains  than you would feel that when there is a demand than you must supply ) I didn't go to football games fallow 11 football (men) players all over the country.

Ahh yes each to own 

 

 

Not to be overly censorious, but I think you may have your demand and supply sides inverted...

 

 

User
Posted 28 Jan 2019 at 14:58
Hi

Have a look at the information in the thread below which I put together some years ago. Much of it will still be valid and may be of interest to you in your present situation.

http://community.prostatecanceruk.org/posts/m141866-COMPLAINTS-AND-REPRESENTATIONS-ETC---PART-2#post141866

User
Posted 28 Jan 2019 at 22:19

Hi Art 

Many thanks for your kindness

Surely I will look at the link /info that you recommended. 

Have a nice evening. 

D.R

User
Posted 28 Jan 2019 at 23:00

Sumdumbloke

 

Already have mate:)

User
Posted 28 Jan 2019 at 23:46

Can I reserve a seat at the  Prostate cancer UK annual bash on the same table as Lyn and Dark rainbow?

Edited by member 28 Jan 2019 at 23:49  | Reason: New

User
Posted 29 Jan 2019 at 00:14
🤣🤣🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jan 2019 at 06:08

JasperM (AKA ,John)

Sure

Welcome to To the Show  :) but Super woman Lynn is the leading Host..I'm just a Extra 

What would you like to drink Don perignon? Or Glass of Shiraz (_)>  Cheers. 

D.R

 

Edited by member 29 Jan 2019 at 09:16  | Reason: Correction

User
Posted 29 Jan 2019 at 08:48
Lyn, Dark rainbow and Bollinge would be my choice!
User
Posted 29 Jan 2019 at 09:16

Franji1 ..A.K.A Jonathan 

Welcome to our Table ,surely we have a seat for you mate. 

I can see that your an Iron man without using Cialis, Viagras etc.but saying that your an Iron man anyway .See we got Super woman Lynn and Iron man already:)

So sorry for your loss of dad at age of 69 ...must been awful. I have lost my parents, siblings at a young age so I know how you feel.

Also you Diognosed with that b******! Cancer at a young age of 40!!! Terrible!! I'm genuinely sorry because of My best year was 40 whole my life and I enjoyed very much at that age whilst somebody like you suffering!I'm genuinely sorry mate. 

I'm your profile you have not mentioned about your night times bathroom duties or day time trips .or pads etc.

Also May I ask this please what was the reason you stayed at the hospital for 3 weeks?

Thank you and smile we got snow at last:)

Darkrainbow 

User
Posted 29 Jan 2019 at 10:47
Well darkrainbow you need to read my profile more carefully the answers you seek are there..

Ps are you sure you are not a troll??

User
Posted 29 Jan 2019 at 11:52

OK .Apologises for being careless sure I will read(your profile) them after this .

Re me being Troll:) well thanks for the copy of Miss piggy...sorry Pegless but.....am I a Troll?hmmmm Very personal but yes I'm hairy and Don't think so!.... the Trolls they dont have prostate  problems anyway::)

User
Posted 30 Jan 2019 at 07:47
DR, I would just add that your assigned cancer nurse is there for you to contact her when you need help with something. She won’t contact you. If you have questions, phone her - that’s what she’s there for.

Chris

User
Posted 30 Jan 2019 at 09:43

Good Morning Chris (Great guy my Mentor )

First of all Nice to hear from you, haven't come acrosss lately with your comments/Update!

Yes Your right The nurses out there for us ,understandably they are very busy with their work load  ,there are thousands of patient's to care for yes I can understand that I'm not the exception one ...Saying that I have visited the hospital once just to see her but was told she was having a day off

I left twice message on her work phones answer machine twice which I had to leave my NHS and hospital numbers, date of birth ,name etc.that was for my Key nurse whom told me that I have a cancer! Nothing heard of. 

Saying that from the hospital where I had RP operation(different hospital then where my Key nurse works)

I have got the nurses Email address so I have sent them Email and recieved Answers many times ,they been great so helpful just like you.

Hope your OK.

D.R

, 

 
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