niknips

Hi Lainy,

Thats terrible!! poor Terry thats so unfair that he had to endure his last few days like that, I agree that these dorctors & nurses are often specialized in their field of work & you don’t expect them to push patients wishes to one side. My dad when he died he only went in for camera down his throat, he wasn’t eating & his mobility was struggling a bit with his stairs at home, so they kept him in for test after test & found nothing, he was getting a bit of dementia in the last 6months & often was very unsettled at the hospital, my sister phoned me 1 day as he was demanding to go home. I went down as im very close to him & managed to get him to agree to stay for a little longer to help him. We seemed to have 1 good day & then again a bad day. He went in on the Mon9/5/11 & by fri that week I was having a meeting with his drs saying my dads last wishes were to die at home & if you can’t find anything medically wrong with him, I’m taking him home. The drs response was ” In my medical opion your father inst dying” reasurring words at the time. The next day I get call from a nurse & she was quite amused at telling me ” your dad has asked me to ring you to tell you he is dying but he is not” she seemed to think it was funny & said he wants to talk to you, my dad then begged me to take him home, but by this time he was oxygen & I reassured him he needed to stay in hospital & we were getting emergency care put into place for at home. My dad went down hill fast & spent most of that weekend drifting in & out of sleep. Sun evening he asked me to help him to the bathroom & he collasped in my arms. Drs came from everywhere & he was placed once recovered back into bed, he had mobile scans & xrays & by 9pm I needed to take my mum home & get some sleep. I phoned at 11.30pm & a nurse said he was fine & very alert? I was like really are you sure as earlier he was drifting, she went & checked & came back and said “No Change im afraid from earlier” …………..That shocked me & I reassured her that if dad became worse or unsettled please ring & to also let the morning drs know that i’m coming straight down in the morning to take him home, as this was his right! Unfortunately I got a call from the dr at 5am the next morning to say my dad had died. You have no idea how awful I felt & the guilt at never getting him home. When me & my sister went to say goodbye to him, another patient opposite him told me he was calling out for me at 1.30am before he died. I took this so bad, all I kept thinking & still do is that my beloved father died alone & calling out for the ones he loved. To top all that off because he died 7 days after the op he needed a post mortem, that was inconclusive , tissue samples then had to be tested & was just bloody awful to be honest. Funeral was delayed & well its been horrendous really. I really don’t know how I have gotten through this last 7 weeks. I thought that nurses & drs cared about peoples last wishes & how & why in hell would nurses not tell you really how your father is, who are they to decide what is good for him? they don’t know him! My poor mum is so so flat & I will never forget standing outside her house on that sad morning & just sobbing with my sister as we knew what we were about to do. That poor woman cried her heart out & I will never ever forget that sound. So although im over the moon I really really am & im thanking my lucky stars that she will be ok, just on the down side she heard that 39 days after losing her soul mate, its pushed her over the edge & was just about the last straw. She looks so sad & is decorating the house room to room, my poor kids bless them. They wishing nan would stop, but I have to keep reminding them that Nanny can’t stop at the moment & just go with it, I think she is doing anything & everything , rather than sit there & reality set in , that her darling has gone & now she might of lived a living hell for all this time needlesly????

Niki x

Jim,

From what records we have been able to get from her GP is that her CA19-9 at their highest were 66 & this was all confirmed in Jan 2007 from CA19-9 ERCP & Biospies& CT Scans???? We now have a solictor dealing with it as we need to obtain all her hospital notes regarding this cancer.

Nikki x

Also 1 quick question,

What would be the sort of CA19-9 levels would you expect to see in someone with bile duct cancer??

My Mums at there highest was 66, now they are 40. After reading up alittle im confused as to what sort of levels she wouldve had with this type of cancer.

Nikki x

Hi,

Thank you for your comforting messages, it indeed is a very sad time for us & added strain now we are dealing with this. We are currently awaiting for a CT scan & will be seeking a 2nd opinion for sure. I’m just stunned that the drs couldve got it so wrong & more confusing as to how the cancer was confirmed with a biospies result???? thats the more worrying part that it was confirmed by a lab result?? How can they of made a mistake like that & if the result is from my mums sample how could a cancer be found & positive result then be told to the patient & then 4.5 years on find out that this mistake has been made? I feel for everyone on this site going through this terrible cancer. I took it very hard when my mum got diagnosed & spent along time coming to terms with the knowlegde that my mum was dying, I wouldn’t wish that on anyone & sadly most on this site know full well what im talking about, I spent alot of time researching in those early days & got very upset as it seemed there was no hope left but to enjoy what time we had left. Also since this has now come to light her original Oncologist is now refusing to see my mum?? why would he do that & doesn’t he think that after all this time he should have the balls to see her & offer an explantion?

Nikki x