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

    Hi David

    I'm so sorry to hear that your having such a terrible time trying to get info,  treatment, etc., for your father.

    I had similar problem when my husband was first diagnosed.  He was initially treated by a urologist, and after checkup scan 18 months after kidney being removed showed cancer had returned, (5 tumours in renal bed where kidney originally removed),  we too were left hanging in the wind, so to speak.  At no point during that meeting were we informed that he would be referred to an oncologist,  instead he was to come back in three months for another scan!     It took a couple of days to get over the initial shock and then I got angry and decided to do something about it.  

    I got in touch with our local Macmillan centre and explained the situation to them.  Within two days,  we had an appointment scheduled with an oncologist.  They have also been instrumental in my husband obtaining his disability and carerers allowance along with his disabled badge for the car.

    Initially I thought they were just there to nurse cancer patients,  but they are also a support network for the whole family and any questions you have,  they will get the answers for you.  Perhaps you should contact them and see if they can help,  I'm pretty sure they will.  

    Luckily, although it is terminal, my hubby's cancer seems to be slow growing at the moment and fingers crossed,  it will continue that way for awhile yet.

    I hope you get the answers to your questions and the treatment that your father rightly deserves. It's hard enough to deal with the worry of the illness without being offhandedly dismissed by the medical staff as well.