VERY CONFUSED???? NEED ANSWERS:(
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Hi Lainy,
Aww thank you for your message, as time has passed by the guilt of what happened to dad is gradually easing alittle. I know I was his favorite & I’m so close to my parents , a little too close I think as hurts like hell to lose them. My dad was so very proud of my little business I have & encouraged me so much, he was always proud that I sent Cake toppers all over the world & had so much pride in telling everyone. Go on ebay & search edible cake toppers or search for this item number 160600010967 & you will see what I do. I only started doing toppers when my mum was diagnosed, she wanted me to try & focus on something, so off to college I went & gained my certificates in cake decorating & Caketoppers4you grew from there. I took a break for a while & now have thrown myself into my work, some kind of solice I suppose. I love what I do & my parents were so proud I achieved what I have in my business, if it weren’t for sitting here over the last month making 100’s & 100’s of decorations I think I would be alot more depressed that I am now.
Nikki x
Oh my, Nikki. That is a terrible story. Please, please know that your dad was not calling your name to take him home. I rather think it was his saying goodbye to you out loud and also by calling your name you should have comfort that you are the one he wanted to call. You really had a mess there and yes anyone has a right to leave any hospital when ever they want and in fact that way the hospital dissolves itself of any responsibility. I am taking a guess that the most upsetting thing to you through all this was hearing that he called your name and you were not there. I would believe that it was more important to him that you were home getting rest and caring for your mom. We can’t look back and try to figure out what was. We must go on and that is what I am sure your Father wants. If he was calling you that meant he was so very proud of you
and dare I say his favorite? That means a lot. I hope that one of these days you can feel him around you and see signs that he is watching over you yet!I’m so sorry about your dad. Both my mom and dad have died within the last 10 months. I understand the loss.
In reference to you mom: I do believe in miracles.
Kathy
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
Nikki, yes I would call a solicitor as I am going through the same thing with hospice. If you can go on You tube and pull up Teddy’s Hospice Story you will see. Teddy was on 350 mg of Morphine twice a day with a breakthrough of 175 mg every hour. In the end he was at a Hospice Facility for 4 days and they NEVER gave him his Morphine. My daughter and I were by his side and trusted them to be doing the right thing. He died very inhumanely and in excruiating pain until he started his Passing. We worked very hard for 4 months to make that time our precious moments and they stole that from me as all I can remember is his pain! I also have many stories on it here on our site. I went to a lawyer because the Director of their 22 facilities apologized to me, apologized on my video site, fired 3 nurses and said to me, “this has only happened 8 – 10 times in the last 10 years”. REALLY? Are you kidding me? With all that you can do to make a patient comfortable you train these nurses to be in the middle ages???? Sorry. I just still get so riled up and it will be 7 months tomorrow! I don’t care about the money but I can’t believe Teddy died the way he did for no reason. So, to me the reason is that this never happens again. Hospice is run by donations and by charging Medicare. I do not feel guilty at all, they are insured!
In 4 days Teddy did not eat, they never changed his gown, they never changed his bed, no bed baths and no rubbing the back. Heck, they hardly came in his room! But they charged Medicare $2000 a day! So, that is why I am glad you went to a solicitor. You go girl!Nikki, what a story! Leaves you speechless really!
Of course such a shock for you, but in the end; it couldn
Lainy,
Really are you happy that im seeking advice from a solictor?? Had a few dissapointing talks with a few distance friends & they think although its sad what happened, they think that taking legal advice with a possibility of seeking compensation for mum is wrong, they say this because treatment here is the NHS which us tax payers pay for, my arguement on this is these drs are paid high amounts for the jobs they do, if they get paid so well then why should they be allowed to make mistakes?? My feelings are its not about compensation, if that comes then so be it, but to me its more of a case of this not happening again. If there are ppl being diagnosed with terminal cancer & this is a mistake, imagine if it was the other way around, told you in the clear & then find out you not. Its going to be a case of fighting for the truth & the injustice they have caused us as a family. I buried my father 4 weeks ago today & I just hate Mon/Tues now as such a reminder. I did the stupid thing of having Dad & a pretty butterfly tattooed on my foot & lol my dad would so not approve, its a lovely reminder but boy does make my heart sink everytime I look at it. Hehe only 41 & hey ho there’s a first for everything. We do some weird things when dealing with grief.
Nikki x
Oh, Nikki, I am so happy you are seeking the help of a Solicitor. Good move.
If you are interested, what got me hoooked on the afterlife, were the very first 2 books written by Sylvia Brown on what may be beyond. Not only did I become a believer but they erased any fear I may have had of dying. You can probably get them in any Library as she is a very popular Psychic. HugsJim,
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
Hi Guys,
Aww yes in 1 way we do count our blessings that it looks like my mum will be ok, but on the other hand it has come as such a shock & to be told that 39 days after my father passed. I sat with him for 4.5years & watched him break his heart, just wish he couldve heard this good news. I know ppl say he is with me & knows, but im 1 of these ppl who is unsure of the afterlife, its not that I don’t believe it , its more of a case that how would I know he is watching over me, I miss him terribly & yes im extremely angry as it seems its not just a mistake by 1 dr but alot of drs & 3 hospitals, just beggars belief that an error like this couldve been made.
Nikki xx
Nikki x, I did have cc and my CA19-9 levels went to somewhat over 400. Following surgery 4/09. the levels eventually stabilized at < 20 and have stayed there. Note that the CA19-9 test has considerable variability (for the same patient), and as Lainy has pointed out, should be used in conjunction with other diagnostic tools such as imaging, ERCP, etc. It sounds like your family was put through a meatgrinder due to ineptitude by more than one practitioner. I guess now, you can start counting your blessings. Good luck to you and your family.
Hello Niknips, I as so sorry to read about the loss of your dad. It is so hard to lose a parent. He sounds like a kind and caring person.
Like the others said, don’t be afraid to get all your questions answered (you deserve that) and a second opinion. I would ask about the lymph nodes and diagphram involvement.
I understand the stress of a terminal diagnosis on the patient and caregivers. We are living with that right now with my husband in stage 4. I can understand your shock and anger. You need to know what’s happening. I would ask the doctor there about the CA 19-9 marker. Here in Canada they use a different number system than in the US so I would check on what is the normal range.
Don’t forget to look after yourself whilst caring for everyone else.
NancyDear Niknips, I am actually happy that you could go to your Dad’s gravesite and talk to him. I have this mental block where I can’t talk out loud to Teddy but I talk to him in my mind all the time. I have this big beautiful picture of him from our wedding 17 years ago hanging in the living room, and I would love it if I could talk to the picture, I can’t as I start sobbing. So I talk with my mind to him. Not sure it is the same but so far works for me.
I have an idea about that Doctor. If he won’t talk to your Mom I feel he is admitting his guilt and that is too bad because I am sure it would make you all feel better if he just acknowledged what went wrong. So, why don’t you and your Mom compose a letter to him and send it. Try not to sound too angry in it and perhaps you will get a reply. The other would be a letter to the Manager of the Hospital explaining the story and asking how the LAB work could all go so wrong. Lastly, when my daughter and I decided that what Teddy went through at the very end was inhumane we found a ‘Patient Advocate” and she helped get us on the way to what we are doing today. If you can, go on to ‘You Tube’ you can see my video of “Teddy’s Hospice Story”. The note underneath the video was sent to me by the Director of this Hospice of which there are 22 facilities and 1,800 employees here in Phoenix!
The CA19 markers do not mean that much unless used along with other LABS. The marker can even mean an infection. Teddy’s markers were up to about 300 but I have seen patients on here with markers in the thousands.
Honestly as time goes by you will always miss your Dad but not have the sad feelings you have now. Having the incident on your mind about your Mom aggravates the situation but I know that can’t be helped yet. I don’t know if you believe in the ‘beyond’ but I found that my strong belief that Teddy is all around me helps me immensely. I even have made a log of all the times I know he is here. Through Music, lights going on and off and much more. Some wonderful things have also happened to Andie of the UK since her father died a few months ago and to Jen of Calgary who just lost her father. I know to some it sounds strange but it does help us get through. How is your Mom doing?
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