Please can anybody help?

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Hi everyone 

I'm wondering if anyone can offer any advice at all please? We are literally falling apart whilst at the same time trying to be strong for my dad. Broken heart

My amazing dad (70) got diagnosed with bile duct cancer last week with spots on his liver. As with so many others, had been living a relatively normal healthy life aside from the odd ache here and there. He suddenly got jaundice to the extent that we felt a GP visit was needed. LFT's showed abnormal liver forward to 5 days later in hospital he's being being given the dreaded diagnosis. We've been told inoperable. Our main worry at the moment is that he's in desperate need of a bilary stent - the issue is he had to wait for this procedure due to being on regular blood thinners for AF. We know we needed to wait a week for his body to be clear of these before they could fit the stent. After receiving such devastating news they told him if he wanted, that he could go home and wait to be called back in for the stent fitting. I have literally spent the last 48 hours ringing GP, hospital, a nurse specialist who gave us her extension far NOBODY is giving us any idea when he'll get this stent. We've been faced with just leaving voicemails as nurse specialist is not answering. Nobody on the ward he was discharged from can give us any more information other than its been passed to Radiology to organise a date for him. GP promised to call back today after speaking with them yesterday and I had to chase them again today. My dad is clear of his blood thinners and desperate. Jaundice is clearly not going away. He's sleeping almost half of the day. We can't even think about chemo until this stent is fitted. 

There has been NO support whatsoever since he was given the news - nothing. And now we feel like since he came home he's just been forgotten about. I've lost count of how many phonecalls I've made to get absolutely nowhere. I'm sick with worry. My mum is caring for my dad round the clock and both of them are petrified and emotionally drained. To be in your 70s and go through this nightmare (and to watch on as a doting daughter and son) is Earth shattering. 

Please can anybody suggest where we go from here before it's too late?? We live in Nottingham and he's been treated at QMC.

  • Have you tried the NHS PALS service.  Patient Advice and Liaison Service.  

  • Hi - I’m sorry to read this. My husband was 71 and the speed with which this aggressive cancer spreads is alarming. We had the same nonchalant approach from both the NHS and the private sector. 
    I would urge you to look up and contact someone called Prof Bridgewater at UCL. Also I have heard good reports about Christie’s hospital in Manchester (I think). 
    The other thing which please do as soon as possible is ask for a gene breakdown on your fathers biopsy as nowadays there are targeted therapies instead of blanket chemo. 
    My advice would be to physically go to your GP and demand help. Time is of the essence. 
    Also … look up a charity called AMMF who deal with the type of cancer and their website is quite comprehensive. 
    I hear you and understand you are at your wits end and I’m very sorry. For me Macmillan were useless and I actually hope someone from MacMillan reads this as I would never give them another penny, but hopefully they will be more helpful to you. 
    Good luck and ping me if you want to!