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jacquik
Posts: 14
Joined: Tue Jan 08, 2013 7:01 pm

Re: Poorly dad

Postby jacquik » Tue Feb 26, 2013 8:07 pm

Petra, Sue, Deb, moderator, your words help so much, it gets worse though...
Sunday ;
Many offers of help and supprt from friends. Went to see dad this afternoon, George(daughter) and Cas met us there. (she managed not to cry till we were walking away from him after sayng see you later) He was awake today but very fretful. He's losing his voice, very croaky and dry, difficult to understand but it seems a Mac nurse had been to see him and explained things to him very well and left him scared and panicky. He told me the next time I saw him it would be because the nurse called me! He knew there was nothing they could do and knew they were doing nothing, theyre letting me die he said. When I offered him a drink he said whats the point. They've took away his drain, the dripless drip is still there accompanied now by an empty bottle of liquid parecetemol.
Last week when I told my friend I was worried about dad taking an overdose he said its not that easy, you have to take anti emetics too. When they called to tell me about LCP they aid they'd given him anti emetics and morphine. Euthenasia? Bloody cruel watching him so afraid and old, so helpless in the hands of an NHS that gets a bonus for using LCP. Did my two GP visits completely miss ascites even though they should have known its possible? Did they ignore it hoping he'd just die at home? I am somewhere between angry and sad. I feel let down by a health service that sent my dad for endoscopy more than six times, various different scans but not the one(more expensive) scan that finally found the cancer. Six years. Six years from when he first went to the GP with pain. Ignored, delayed, postponed, too late. I know two years ago the consultant suspected PC because of the questions he asked dad about his symptoms. Guess I am just angry and looking to apportion blame. I'll blame Cancer. I'll blame his overuse of talc.

Tuesday : Yesterday we went to see him and he was here and there but still drinking. Bag was back to drain, urine normal colour in other bag.
Today we went and found the Mac nurse he's been assigned now with a big long list of questions. So she found us the consultant we saw friday.
Acute or chronic renal failure I asked...
'I don't know thats not really my field.'
You told us he had renal failure and would need dialasis..
'No I never said that'
My partner chimes in..yes you did.
Has his blood been tested?
'No we don't do that unless theres a change in condition.'
(I looked at his obs by his bed, they stopped just after they'd LCP'd him so how would they know if theres a change?)
Is he having any other treatment for ascites?
'There are no other treatments.'
(I thought there were another two things including intravenous albumin to prevent low blood pressure but as theyre not checking his blood pressure...)
I asked him why he'd initiated LCP as the guidelines are thus:
Bed bound
Semi-comatose
Only able to take small sips
Unable to take tablets.
When dad went in he was bedbound by the nurses because of his blood pressure and the ascites
He was conscious and holding a conversation with the nurses
He'd drunk half a bottle of drink before he left home in the ambulance
He'd also taken his tablets that morning
His answer....
'Those are just guidelines :-S He has advanced PC and and there would be problems in the future.'
So if I thought I was going to die tommorrow should I start on the LCP today I asked him?!?
He just kept pointing out dad had advanced PC but didn't know if he had any mets.
Friday he gave me one lot of information that made LCP seem dads only option.
And they did it then told me on sat anyway.
Today his information is completely different

I asked if he'd looked at dads notes and treated the man or treated the 80 year old. He said this is what we usually do and when I said so you treated the 80 year old not the person he was silent.

So the consultant had put him on the LCP for a reason that might occur in the future, that he wasn't an expert in and lied to my face (with someone witnessing both times) about what he'd said on friday.

I asked if he'd seen dad over the weekend and explained things a little too well. He said he had seen him and explained things so I think that explains the mystery of the scared old man my dad became who said 'they're just going to let me die, no point in drinking they're just going to kill me anyway' Even today through his sedative(midazolam) induced haze he told me he didn't know what they were giving him, he knew he'd beed 'drugged'. Now he can't even manage to ask for a drink they've got him so hazy.
And the best of all ..well...they were going to send him to a care home, no closer, to die. The mac nurse asked if they were going to be able to keep draining the ascites to keep him more comfortable. No that would be sealed as there are no actual nurses at the care home and he'd just be left to swell up again.
Mac nurse said well I think we'd better keep him here in the hospital then hadn't we.
I wish she'd met him before then she'd understand how bad he's got since sat. But she first saw him after 2 days on LCP.
LCP is supposed to relieve suffering. My active dad thought the worse thing in the world would be to die like he is, a slow lingering death getting a little worse each day. He hates drugs and not feeling in control...paracetemol for a hip replacement! seriously.
I've done alot of reading about all the things the consultant said were wrong with dad.
I made notes and everything!
I don't like condescention. (even if I can't spell it!)
I'm vaguely intelligent.
I was lied to.
And my dad is still fighting to be here.
Christ I'm angry.
What on earth can I do.
Jacqui x

PCUK Nurse Jeni
Posts: 1115
Joined: Mon Jun 14, 2010 1:30 pm

Re: Poorly dad

Postby PCUK Nurse Jeni » Wed Feb 27, 2013 1:12 pm

Hi Jacqui,

I am really sorry to hear about all of this, and the feelings it has left in you.

If you don't mind, I would like to email you privately to address some of the issues, if we can.

Jeni.

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Poorly dad

Postby DRAD3 » Wed Feb 27, 2013 6:37 pm

Hi Jacqui
I totally understand your anger. My husband was also a fighter, never really came to terms fully with what was going to happen and resisted the medical intervention towards the end - it was upsetting to watch and was hard for me to make decisions because what I wanted for him (a pain free, peaceful death at home) became a battle (doctor wanted me to admit him to a hospice as things became harder, my husband was in denial about what was happening altogether). With the help of Jeni, here at PCUK, I educated myself about what to expect so that I could ease my husband along that awful path - so he wasn't alone, didn't feel completely powerless, and was in an environment that was familiar at a time he was most frightened. It was the hardest thing I have ever done and I am still not sure I got it completely right. I guess ultimately he was given increasing amounts of morphine and sedative and it was, as you say, euthanasia. I didn't want the situation in the first place and, like you, I have incredible anger about it but I couldn't do anything about it, what was done, was done...if I could have turned back the clock, I certainly would have but would it have changed anything? Could it have been avoided, could we have done something sooner? I am left with many, many questions like this (that is why I give my time to PCUK, I want to help them get these answers). You Dad is obviously very frightened, Jacqui, and feeling completely powerless - all I can suggest is to just allow him to feel whatever he is feeling, safe in the knowledge that he has you in his corner. It is an awful, awful thing and you must be overwhelmed by it all. I am so sorry. Sending lots of love and strength to you, your lovely Dad and the rest of your family.
Deb
x

jacquik
Posts: 14
Joined: Tue Jan 08, 2013 7:01 pm

Re: Poorly dad

Postby jacquik » Wed Feb 27, 2013 11:37 pm

Moderator thankyou for the e mail and Deb thankyou so much, you really help so very much and I know when this is 'over' my son and I want to start raising money for PCUK. And hopefully raise awareness. You really are a great bunch here!!
Jacqui x

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Poorly dad

Postby DRAD3 » Thu Feb 28, 2013 7:41 pm

You are very, very welcome, Jacqui. Continuing to think of you and sending you strength and a big hug from your forum family. xxx

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Poorly dad

Postby Catherine » Thu Feb 28, 2013 10:20 pm

Oh Jacqui,

I'm sorry I can't offer any advice, words or wisdom or anything that may help at this awful time for you. It seems so unfair and I am not surprised you are angry. I've been reading your posts and thinking how dreadful for you all. I just thought that I would let you know I am thinking of you at this time

Lots of love Catherine xxx

jacquik
Posts: 14
Joined: Tue Jan 08, 2013 7:01 pm

Re: Poorly dad

Postby jacquik » Fri Mar 01, 2013 5:46 pm

Thankyou Catherine, Deb, everyone,
Today, fri, I phoned the palliative care nurse at eleven this morning to ask if dad was still alive! She was shocked and phoned the ward (she had trouble getting through), which I couldn't get hold of and phoned me back half an hour later to tell me dad had died at 8.20 last night.
No one had called me, I had my phone next to me constantly and good signal.
I got a phone call from a sister an hour later appologising profusely promising to find out why I wasn't contacted.
So dads gone.
Lots of phone calls, lots of tears, lots of lists, lots of anger at not being told until I chased. We were actually planning to go to the hospital to see him as they hadn't called!
At least he finally has some peace, and all his friends and mine are being very supportive. It reminds me what a good man my dad was and how well liked he was.
Thankyou all again, I'll be back when I get a moment!!!
I never realised just how much there was to find when someone dies! And so many calls. Oh well, I'd better go walk his dog:)
No flowers at the funeral- donations to PCUK :)
Jacqui xxxx

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Poorly dad

Postby DRAD3 » Fri Mar 01, 2013 7:16 pm

Jacqui - I am in profound shock! I cannot believe that your Dad passed away and no-one contacted you. Totally and utterly unacceptable. I am so, so angry on your behalf. And now I feel utter sadness and am sending you the biggest of hugs that I hope will go some way to comfort you at this terrible time. May your lovely Dad rest in peace. Your are right, things do suddenly get very busy, which will help - you take care, rest lots when you can, between the million and one things to do but above all remember that we are here and are thinking of you.
Lots of love
Deb
x

Catherine
Posts: 88
Joined: Sat Nov 24, 2012 11:31 pm

Re: Poorly dad

Postby Catherine » Fri Mar 01, 2013 9:13 pm

Oh my goodness! I am so dreadfully sorry about your dads passing. But even more so that you were not told. That is disgraceful and completely unacceptable. My heart goes out to you and your family. Sending you lots of love xxxxxxx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Poorly dad

Postby laura » Fri Mar 01, 2013 11:39 pm

dear jacqui, have been reading posts, but not posting, but your last post really got to me, i am really so very sorry about all the trauma your much loved dad and you have been through, i am sending much love and strength to you. laura xxx

PCUK Nurse Jeni
Posts: 1115
Joined: Mon Jun 14, 2010 1:30 pm

Re: Poorly dad

Postby PCUK Nurse Jeni » Mon Mar 04, 2013 10:08 am

Hi Jacqui,

I am so sorry to hear the news that your dad has died. Also very sorry about the way that you found out, and glad to hear that the sister is looking into it.

On behalf of the charity, please accept our condolences at this sad time, as well as my personal sympathies. Yes, it will of course be a busy time for you right now, but do stay in touch if you can.

Kind regards,

Jeni.

Morwenna
Posts: 50
Joined: Mon Dec 03, 2012 6:43 pm

Re: Poorly dad

Postby Morwenna » Mon Mar 04, 2013 7:20 pm

Jacqui
So sorry to hear of your Dad's passing.
Sending you much love
Morwenna x

jacquik
Posts: 14
Joined: Tue Jan 08, 2013 7:01 pm

Re: Poorly dad

Postby jacquik » Mon Mar 04, 2013 11:19 pm

Morwenna, Jeni, Laura, Deb and Catherine, thankyou all for your support, it really has meant so very much being able to rant and share and sometimes just read.
I've PCUK down as my charity on the funeral order and in the newspaper, cos like I told my dad when I got lots of £1 items, if I can help someone elses daughter, mother, son whoever not feel the way I felt then its money well spent.
Least theres lots of farmwork to occupy my mind till the funeral on the 15th.
Just no one to ask which implement to use!
I do miss him. All his friends have been amazing offering help and support, I hope he knew how well like he was.
Thankyou for listening and not complaining when I cry on the keyboard!
Love, Jacqui xxx
My father is a farmer-
That's all he'll ever be.
The values that the land taught him,
He handed down to me.
I love my farmer father-
I'm thankful that he's mine...
I pray that God would bless him,
Today and for all time.

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Poorly dad

Postby yorkypaul » Mon Mar 04, 2013 11:34 pm

Jacqui
I am so sorry for the loss of your amazing Dad. I live in the rural community in East Yorkshire and, though not a farmer myself, have some farmer friends. I admire the work they do and their affinity with nature. The rest of us could learn a lot from them. Your Dad sounds as though he was at one with his occupation, and I admire him so much for that. I also admire the way you have stood beside him through this ordeal. He is resting now, but will always be with you. My thoughts and prayers are with you.
Hugs,
Paul x

petra
Posts: 42
Joined: Mon Jan 07, 2013 6:16 pm

Re: Poorly dad

Postby petra » Mon Mar 04, 2013 11:39 pm

Jacqui, I'm so very sorry about your dads passing and the awful way that you found out. May he rest in peace and watch over you and his farm always! Your poem made me cry!!! Much love from Petra xxxxxxxxx