Bladder cancer when there's no bladder left!

FormerMember
FormerMember
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Hi, my Mum was diagnosed, after a lot of hospital messups, with bladder cancer at the end of last year. She had cystectomy (and C Diff) in Feb of this year but continued to be in a LOT of pain post op. She told the hospital who said all was fine, then she went to the GP who actually listened, gave her a painrelief regime and played hell with the hospital. Despite this the hospital then failed to book the urgent MRI scan that her notes said she needed and, once the scan was done, sent the results to the wrong doctor who did nothing with them. She saw one of the oncology docs yesterday who was very apologetic and turns out they hadn't removed all the tumour so it's now grown and is pressing on the nerves in her pelvis. She has one foot/leg which is numb, severe pain down the other leg and now back pain as well. She'll have another MRI scan followed by 5 days of radiotherapy and the doc talked about giving chemo if it's spread anywhere else but I'm just so very angry.

Mum and Dad have already made a complaint via PALS but haven't received a response in the stated timeframe - no surprise there. How can this level of service be acceptable. And, on a more personal note, what does this latest diagnosis mean for my mum? How much benefit can radiotherapy give?

Sorry for the ramble, just getting my head round things at the moment.

Ellie
  • FormerMember
    FormerMember
    Your Mum sounds like she's been treated disgracefully and I'm not surprised you're angry! Contacted PALS again?

    Really sorry to hear about your Mums condition and hope she can now get the help and support she needs.
  • FormerMember
    FormerMember
    Thanks chocaholic, to be honest it helps to hear that she's been treated badly as we were worried that this was the norm!

    Unfortunately, Mum and Dad are dealing with the complaint process - Dad is a big one for keeping things private so doesn't want us involved and I think that's part of my frustration. Obviously the last thing they want to be thinking about just now is the complaint but I need someone to at the very least say sorry.

    Plus, it's their 40th wedding anniversary in just over a week and we were having a bit family celebration, can't imagine how that's going to be now.
  • FormerMember
    FormerMember
    Dear Ellie.
    I wouldn't say that what has happened is the norm in any way. Yes there are always communication problems, but I think what you have described goes beyond that. I recently found a website for carers and there is a section on there which might be worth looking into. It is about a service called ICAS http://www.carersfederation.co.uk/what-we-do/icas/ which is the Independent Complaints Advocacy Service who can offer advice and supoprt about making a complaint to the NHS. Unlike PALS they are not linked to the NHS in any way. I have been fortunate enough to not have had to use this service, so I can not exactly recommend them from persnol experience, however, it might just be worth a call to them.
    Take care, Ali x
  • It sounds like your mum has been through a terrible time and she has been treated disgusting I really hope pals get this sorted out for her.  Keep in touch thinking of you all xxx

    chrissy