Who and where to turn to.

Hello Al985 

First off let me assure you that there is no problem with your post - you haven't "named and shamed" and there are no locations mentioned so no issues.

You can change your NHS provider and this is the information you need.

Choices in the NHS.

We also have this information if this helps:

Understanding Your Rights - Cancer Care

If you need any further help or information regarding the above, please do let me know.

Best wishes - Brian.

Hi Millibob, thanks yet again for your ongoing support. I am really in a dark place and I am desperate to find a way out. My whole cancer journey has perhaps been a bigger roller coaster than most, well in my eyes anyway. It took me numerous visits to the GP before I had the positive PSA, with the It’s your age Mr x you must expect these issues s you grow older. When I got the PSA results back it was full stream ahead and my local hospital was fantastic. Initial consultation, including first DRE, MRI scan, Biopsies and then bone scan all in the blink of an eye, well that’s what it seems. I was referred and seen by one surgeon but then offered an op performed by another. It happens apparently. When I attended for my pre op assessment I mentioned that two years ago I had a scan for fatty liver, which gave a KPA score of 67.4. I was told that this was indicative of sever Liver damage/ cirrrhosis and was advised to stop drinking and prepare for a liver transplant. The person who gave me this information had asked for Liver function tests,  If she had waited 24 hours for the results she would’ve seen that there was no damage to my liver whatsoever and the KPA score was probably a result of her inexperience on using the equipment or a fault on the equipment but by this stage it was in my notes.

The pre-op nurse stated she would look into this and discuss it with the Anaesthetist, So when I got the admission date I checked with the team as to whether she had done this to be told. Yes she has put progress to surgery. However on the day of the surgery The surgeon I had never met before introduced himself and sent me home. He explain why And there was little or no point me trying to tell him that this had been looked into As my note said something different.

There followed a four week delay And in this time my PSA rose from 11.4 to 13.? 
From the very beginning it has been a complete and utter nightmare. I acknowledge that I didn’t know what perineural invasion meant when I saw it on the oncology report and I looked it up. I also spoke to McMillan and to the  Prostate cancer. Trust. 
Both people I spoke to within these establishments and advised me to speak to the consultant with one saying immediately. I have spoken to my so-called cancer nurse specialist saying that perhaps I should’ve had this information before I made my final decision as to whether to have surgery or not . in fact from the discussions I have had with both the MacMillan and prostate cancer trust it could well have precluded surgery altogether. it would be quite easy for the nurse to look into the situation and advise me as to whether this had been discussed during my MDT how to perhaps even get the surgeon to communicate with me. For whatever reason this nurse is preventing me getting vital information, I need to move away from both her and the hospital that allows her to do this. After my six weeks appointment with the surgeon, my care is in her hands. I asked, would anybody feel comfortable with this?
you say I have not named and shamed or mention the establishment, I will be very very honest it has taken more willpower than I realised I have not to do so

sorry for the ramble but for the first time since the op and then getting the clinic letter  I’m in the house alone and I’m struggling.

I feel weak and worthless.

Hi Al,

I have read and responded to your earlier post. It is apparent that much of your frustration comes from the lack of information and communication from your care team. It is unfortunate that your interaction with them has left you feeling this way. I would encourage you to  find some patience. You have been through a major surgery and recovery should be your priority.

I agree that a short consultation with your doctor would go a long way in giving you some comfort. In reality, the information that is most important after your surgery takes some time to compile.

In my case it took about 2 weeks to recieve the post prostatectomy report. It was posted on My Chart which is my online medical file. I was able to see it at the same time as my doctor. This report contains a wealth of information  which can give you a good idea of your surgery's success. I don't know anything about your NHS, but hopefully you get this information soon. As I stated before, if you have, or receive this report post it here if you like. We aren't  doctors but we can give you a good idea of what it means. 

Hi. You hit the nail on the head but to be expected to wait 6/8 weeks for this consultation to happen is at this moment in time way, way beyond me. The frustration isn’t really aimed at the surgeon as I am not sure if he has been made aware of my concerns. I know my engagement with him was very brief, perhaps one 5 minutes during which he cancelled the first planned op and then perhaps 15 minutes the second time when he agreed to do the op having being able to gain clarity with regards to a concern he had in relation to my liver. During this consultation I asked him if the delay would have a detrimental  effect on my cancer and he immediately agreed to do a second PSA test which had in fact risen. I am sure he did this to try to reassure me. I have been advised that I can ask for my care to be transferred to another cancer hospital as my faith in the current one is shattered beyond repair. I would find it difficult to sit and be told that surgery wasn’t perhaps the best option for me and that I now required radiotherapy or god forbid chemotherapy to deal with any potential metastases.

I am exhausted by this with not one good nights sleep for 8 days and I am finding it difficult to be rational as my frustration is turning to anger, almost rage.

Thanks for your considered input it is truly appreciated.

Al

Hello Al (Al985) 

It's a lovely day today and I hope you are feeling a little better this morning.

Having read the very helpful post above from Stampede and re-read both threads I hope you don't mind me posting this;

You can't turn back time and perhaps it's time to let what has happened in the past go and move on - you need to do this for your own health:

* I would be contacting the PALS office at your hospital (Patient Advice and Liaison Service - you can find the contact details online). Let them know what has happened and before you take it to the formal complaint stage are they able to arrange a change in your team - a new nurse contact and arrange a meeting with the surgeon.

* You are not sleeping and anger and rage are not good in a situation where you are recovering from major surgery.

a. Do you have a "Maggie's" near you - this is a cancer drop in centre where you can chat with someone about your issues - here's a link "Maggie's".

b, Call our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - They will be able to help you with your feelings and give you some extra support.

c. Make an urgent appointment with your GP and let him know your feelings.

It's time to take stock, think of your own health and move forward.

Best wishes - Brian.