Not knowing

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Hi guys been a while since I have been on ,I'm still at the stage where I don't know what's happening with me or my treatment. Had a district nurse turning up at my house asking why I was not on there book's, they have been absolutely brilliant brought me everything that I need for my catheter. Going to another hospital won't say the name of because they put the wrong size of catheter in and hurt me a lot now I have to go back there on Monday to go through the same again. Now every time I'm going to hospital I'm dreading it .I have been listening to you guys again about all the numbers and meaning of some of the words ,got a list of questions to ask when I get there but still filling me full of dread. Just had my second injection of HT and nurse asked me when I have to get bloods taken and I told her all about my situation and told her I don't know because I haven't been told when I need them so if you guys can guide me with questions I can ask it will be much appreciated. 

  • Hello again Fredek.

    All I can say is OW with the wrong sized catheter. I know Millibob gave you some pointers on this previously.

    To try and help you with questions to ask I have put a link to give you some ideas.

    https://www.cancer.net/cancer-types/prostate-cancer/questions-ask-health-care-team

    I hope you start getting answers soon and please keep coming back with questions. As soon as you get your results then let us know so that we can help with the next step of your journey.

  • Thanks again alwayshope I always have loads of questions but when it comes to writing them down I don't know what to ask still very confused about everything with not being told anything. 

  • I know. It's chicken and egg. Until you get your diagnosis you don't know which are the relevant questions to ask. So frustrating. Have you thought about the idea of asking to tape the meeting? Also ask for copies of all of the scans, biopsy and blood report and ask to be copied in with any future results and reports. Explain that the not knowing is causing you distress.

  • I think the problem is because the doctors and nurses have always been like God's to me from my day's in the services and upto saving my life after a crash, but in the services they were officers so were never questioned and they knew what was best for you. But now after having a quick look through that link you sent me I can slow them down and ask questions from there so thanks for that. 

  • Good morning Fredek 

    I don't know if you are aware of the Veterans Charter? This was a pledge to ensure that all our veterans received the help they deserve in recognition of their service to the country. Part of that is making sure that they get the medical help they need. If you have medical issues as a result of your time in the services then you can get priority access to treatment plus additional help. Whilst it may not help immediately it may be of use to at least register the veterans connection with your GP.

    This is the link with more information.

    https://www.nhs.uk/nhs-services/armed-forces-community/veterans-service-leavers-non-mobilised-reservists/

  • I understand that Fredek - having served for 37 years.  They are not Gods (even those officers) though they often think they ought to be.  You need a good dose of Yorkshire attitude off me - I didn't even treat officers like Gods when I served.  Slowed my promotion down a little but got to the highest I could ever have eventually.  It is a good idea to take your mobile phone in and ask them if they mind if you record the consultation and ask for all correspondence, test and scan results  to be copied and sent to you.  I always say that I would be prepared to pay for this but so far never have and have been doing this for at least 15 years.  I also get copies of all scans put on DVD - I have to take the DVD into the radiology department and they charge £10.00 to add the scans onto the disc.  I have done this at many different hospitals.

    Good Luck!

  • Lots to look into thanks guys