So...here goes

1 minute read time.

So, hi there. I'm new to this.

Where do I start? Bring you up to date? Dad had a huge belly. He was a good eater, so we thought it was too much rich food and Guiness. He had trouble peeing, but thought nothing of it. A proud man usually doesn't. Anyway, turns out he had been retaining urine for a long time. Eventually, they had a look and found 6 litres of urine in his bladder. They drained it. His bladder had been streatched to wafer thin. It was gubbed. They also spotted a spot on his bladder but it was 'probably nothing to be worried about'.

That would have been July/August. They left him till about November/December and thought about a scan. Dad told us on 21st December 2010 that he had a tumour on his bladder - a big tumour. They couldn't do a biopsy incase they tore his bladder. Scans followed. You would think results would be quick but as the Christmas holidays were here, we didn't get any results until 11th January 2011. No rush...

They realised that they left this thing too long and apologised, muttered. The bladder removal operation was on 28th January. I might go back to that later - maybe even tell you what the surgeon said about us disappointing him in the week before the op.

Dad survived the 12 hour op. Chemo hasn't started yet. The surgeon didn't send the referral to the Beatson.

Eventually we got to the Beatson. He was on the drip on Thursday, but he got a urine infection. Chemo stopped and he stayed in over the weekend. He looked really well in the hospital, really chatty. Got my old dad back. Smiling, laughing. He got out yesterday. I went up to see him, and he looked terrible. Sore leg, trapped nerve - they think. THEY THINK?? Medication isn't right and no one will speak to me, to answer my questions. Has your dad given us permission to speak to you? No, he's kinda busy right now.

Data Protection, you see. But I want to know why he is sore. Why his meds aren't working. Surely that doesn't breach the DPA?

I'm tired now. And this is ending up as a rant. Sorry.

Anonymous
  • FormerMember
    FormerMember

    My god your fathers story sounds horrific! But sadly as I spend time on here I find it to be more and more common that the "so called" specialists have got it wrong!!

    You have taken the right step by joining the Mac site try the chat you will find lots of people in the same boat in there.

    Safe hugs

    Mrs Bee xx

  • FormerMember
    FormerMember

    Hi David,

    Mrs Bee,s Right stay on the site and you will learn more about your Dads Treatment and diagnosis. I

    think they have a duty to tell you whats wrong with your Dad. I would enquire more with his medical team. All the best and good luck.

    Take care and be safe Sarsfield.

  • FormerMember
    FormerMember

    amazing how different hospitals can be. Mine is brill keeping me really well informed and up to date on what's going on. True, sometimes you think "if only they'd been quicker perhaps things would have been different".

    Unlike your Dad, I had no symptoms just eventually a suspicious GP who thought something was not quite right. At least she picked it up and sent me for an urgent scan.

    I try not to be too demanding but do ask if I feel I need to know anything. The only time I have not found out what I wanted to know was when I asked the oncologist how long I'd got and he said that he preferred not to say but I would know when the end was coming. Only trouble with that is that every small down that happens you would ignore if you thought you were healthy becomes a possible dramatic possibility"

    Good luck with your Dad and keep on here, people are incredibly supportive.

  • FormerMember
    FormerMember

    Hi David, in March 2008 my dad also had problems peeing although he had blood in his urine and he'd lost a lot of weight - after many prescribed antibiotics it took 8 months for his GP to finally refer him on the insistence of the GP's wife (a nurse at the same practice!). He too had a huge mass in his bladder and had to have a radical cystectomy then chemo.Two and a bit years down the line and  after a second cycle of chemo it's come back and metastised to his abdominal lymph nodes. We're awaiting more results today. The GP was absolutely appalling, but the hospitals have been amazing - thankfully. Just keep on pushing until you get some answers. You and your family are entitled to know everything that is going towards the care of your dad. Warm wishes x

  • FormerMember
    FormerMember

    Oh, folks. Thanks for your uplifting words of encouragement!

    I will keep pushing and will stay on this site.

    Dx