Poorly dad

[jacquik]

Hello everone, Im Jacqui and my dad was diagnosed with PC last July. He'd had problems with gallstones for years and nothing was done, jaundice followed, repeatedly and finally he went for a better endoscopy which found the tumour. My dad is 80, up until the diagnosis he still worked on our farm, driving tractors and tinkering! He's back in hospital as of yesterday, vomiting all week since sunday,nothing solid or liquid has stayed down, GP gave him anti sickness tablets and still it came, noticed wednesday "coffee grounds" black vomit. GP sent us to A & E. Finally saw a consultant today who is sending him for a Ct scan to find out whats wrong as they don't seem to have a clue. The consultant wanted something done for dad as he hadn't had surgery or chemo but he said the choice wasn't up to him but his boss. I keep getting a feeling that his age stops him getting the treatment he needs. His heart is ok, he was a strong healthy man and yet all they see is an 80 year old. Am I imaging agism or is this how everyone gets treated? Jacqui

[Morwenna]

Hi Jacqui

Sorry to hear about your dad being so poorly, its so hard seeing them like it. I don't know whether it is ageism but I certainly feel that when it's an inoperable tumour they are put to the back of the queue, thats how I have felt at times with my dad and he is only 62.

It sounds like things are moving a little now though if he is having a CT scan. If you email the support team on here they are a wealth of knowledge and will suggest alsorts of things you may be able to do or push for to help your dad.

Keep us posted on the results, I know just how you are feeling, keep strong..

Love Morwenna

[DRAD3]

Hi Jacqui

So very sorry to hear about your Dad. I would like to think that age doesn't come into it but that they deal with each case on its own merits and if your Dad is a fit and healthy 80 year old, it would be this that would be important in any decisions regarding treatment. I am assuming that since it was July when he was diagnosed, they have already decided against chemo? This seems unfair especially if you haven't had a clear explanation as to why. I hope the CT scan is helpful and you can find out what is going on. Do email or ring the support team - they are excellent in explaining what is going on, what particular symptoms might be caused by and what you can do. It is horrible to have to watch a loved one suffer and not feel like anyone or anything can help and my heart goes out to you, Jacqui. Know that you are not alone and there will always be someone here who will offer you some support. Do let us know how your Dad gets on and fingers crossed things improve for him.

much love

Deb

x

[jacquik]

Hi everyone, thankyou so much for the support, I've been reading the forum for months and finally needed the support I can see everyone gets here. It's really helpful to have an idea of what might happen.

Didn't get to talk to a doctor yesterday and all the nurses could tell me was that he could have water and jelly! He's tubed down to his stomach, he told me 3 litres came out when they did it, though he said it was very unpleasant to have done, bless him my dad turns into a little boy when he's ill and it breaks my heart.

Dad didn't know what the ct scan had told them but he said he was going for an endoscopy when they could get him in. He still has no idea what treatment he's be offered. He was very sleepy, though for once he said the hospital food smelt nice, mainly because he couldn't have any!

What makes everything worse is visiting my oldest friend whilst in the hospital who's been fighting cancer the last two years, holding her husbands hand on friday whilst he was told if there was no improvement by tomorrow that they were thinking of the Liverpool pathway.

I really hate cancer!

Going to see them both this afternoon.

Thankyou all again, my thoughts are with everyone here, Jacqui x

P.S. Dad was offered chemo, but was told that it wouldn't shrink the tumour, and wouldn't stop it growing.That it might give him an extra month maybe. Dad had seen what chemo had done to some of his friends and his quality of life was more important to him than the quantity.

[DRAD3]

Hi Jacqui - good news that your Dad was tempted by the food (typical that he couldn't partake!) Good news also that they are having a good look at what is going on - I do hope they can help and he is feeling better soon. Your Dad sounds like an amazing man - to take the brave decision against chemo in favour of quality of life - must be one of life's hardest decisions to make and I have great admiration for people who make it.

You are right, cancer is the most awful thing and I hate it too. I do hope your friend is OK today. You must be feeling very low with two people you care about going through such a difficult time.

Take care of yourself won't you?

lots of love

Deb

x

[PCUK Nurse Dianne]

Hi Jacqui,

I am sorry to hear the news about your father, especially that he has been vomiting and had to be admitted to hospital and also about the mention of his treatment options. I will email you directly with some questions that we can discuss.

Kind regards,

Dianne

Support Team

[jacquik]

Thankyou for you support Drad3, Morwenna and moderator2, dad finally came home last night.

He's had another stent put in, lots of drips, and found he had low calcium, asked the nurses if they knew where he'd bled and where the new stent was but no one seemed to know and his discharge letter was unreadable even by the discharge nurses! Helpful:)

He's in more pain now and he's finally thinking about upping his morphine dose, still being sick though less colourful, still no appetite but I suppose thats just part of it.

My dad is now skinnier than my teenage son, apart from the bloating he's come home from the hospital with.

Now eating none of his favourite foods (Down to jelly and build up shakes)and came home with a booklet from the dietician for a completely different stented problem with bits crossed out!

I like the advice for quote" if you think your stent is blocked":-:

" Drink fizzy drinks and jump up and down" I kid you not!!

I know my dad will die, we all do, but I never expected to watch him in this much discomfort, fading away, stuck in the house incapable of even walking round the farm he's loved for the last fifty odd years. Thankyou all for allowing me a space to rant, you are sanity saviours. Jacqui x

[DRAD3]

Hi Jacqui

You rant away my dear - totally understandable! Can't say I have seen the fizzy drink/jump advice before but I'm no expert! Great advice if you are a 14 year old - who at 80 (even if they are fit) likes fizzy drinks or jumping up and down - ridiculous! I suggest you give the support team a ring for their advice. I do hope you have community nurses coming in - they will help your Dad get his pain management right - so important. Perhaps once he is feeling more comfortable, he will get his appetite back and some strength. Getting everything as right as it can be at home can only help in this awful situation. I do hope you see some improvement, Jacqui. Sending you love and strength.

Deb

x

[jacquik]

Thanks Deb, and thanks to the support team for the e mail. The GP has been great so far but dad is stubborn(I wondered where I got it from) and won't have painkillers till he really needs them eg. tonight his morphine wore off about 6 so he had oromorph, but he still wants to leave it a few days to see if the pain goes away before he goes up to the next dose! He's only on 20mg twice a day. When he had his hip replaced he took paracetemol once and that was it!This is how I know he really is in pain. I just helped him to bed,gave him his medicine and tucked him in. It just makes me so very sad. I really appreciate you all x

My friend was put on the Liverpool pathway on monday. When I saw her that night I couldn't stay . Tuesday I went to sit with her and said hello and she woke up and talked with me for 20 minutes, wednesday she was eating and drinking, by thursday she'd decided she wanted to go home and things were being arranged. I know she'll never be able to walk now, its in her bones, liver everywhere. But she's coming home and thats hope enough.

Time is a precious thing, thankyou for using some of yours on me Jacqui x

[DRAD3]

Hi Jacqui. My husband was also stubborn and got very used to putting up with pain unnecessarily. We had a chat one day where I said to him that his body was having quite a job battling the cancer, that to also give it the additional job of tolerating pain was perhaps asking too much. By looking at pain medication as an additional weapon in the battle struck a chord with him and by seeing it as a ally, rather than an enemy seemed to work - try it.

I do hope your friend continues to receive good care and you get to share some more good times together.

You are right, time is precious, good times priceless.

much love

Deb

x

[jacquik]

Dad came home from hospital last thursday, the 14th feb, valentines day. He looked a bit bloated but he'd had a new stent fitted in his duodenum and his notes said he was eating and drinking (which I discovered he hadn't been).

Over the weekend he got more bloated and on monday I called the GP for a home visit as he could barely get out of bed and walk.(he walked out of the hospital the previous thurs). She changed his morphine tablets to patches and went. He got worse, more pain, more bloated.

Weds another doctor came out, put him back on tablets and gave him water pills. Seemed to ignore the fact that dad wasn't urinating. Thursday the district nurse came round.She arranged for home help and thought he had ascites.

By friday he was in so much discomfort and could barely move the district nurse told me to call 999. First paramedic thought his machine was broken when taking dads blood pressure as it was very low. Same with the ambulance crew and then in A & E. They all thought there machines weren't working as dad was still chatting with blood pressure so low he should have been unconsious. Took him to surgical assesment ward after finally putting him on a drip where the doctors decided, before even scanning him, that his kidneys were failing.

They decided it wasn't in dads interests to put him through dialasis or take him to critical care as his blood pressure was still very low. Today, saturday, they put him on the LCP.

They did it then called me to tell me they'd done it. Dad had told me at the beginning of this week that if this was the kind of life he had left he didn't want it to last very long. So I said ok to the LCP.

We went to see him this afternoon, he still has the drip attached but its turned off. They've finally drained his ascites a bit but he says he has no pain. he didn't wake up much, only for moments.

My partner and son were with me and we all just stood there with tears falling down our faces, talking to him when he woke up. He didn't want to die slowly. My poor daddy. I suppose he had nearly eight months after being diagnosed, he didn't have surgery or chemo, just my mothers herbal remedies!

I keep lookin at the clock thinking I'd better go see had in a minute...and he's in the hospital, so I go see his dog instead, she wanted to go with him in the ambulance, picked up her ball and wagged happily, bless her, and she keeps going and looking at his chair. Then again so do I.

This man made me a roundabout, from scrap and bits that worked when I was a little girl.

He made my daughter a playhouse from wood with a veranda and windows and curtains.

He taught my son to drive a tractor, me too many years ago.

He has always been my rock and my hero and I will miss him. He is everywhere around me on this farm, but it seems so very quiet without him here banging and inventing and creating.The last thing he created was a multi hook to hang my potato picking baskets up. A silly thing to stop them getting run over.

He's left designs in a book for two new sheds, always thinking and designing.

And sometimes I can hear him in my voice and feel him in my actions so he'll never be gone. I know he isn't dead but I also know he's not coming home.

Thankyou for being good listeners, even though I'll never meet any of you, you have given me the chance to say things I couldn't to anyone else and for that you have my heart felt thanks. Jacqui x

[petra]

Hang on in there my mate. Your dad knows you have done everything you could for him. Stay witth him and keep talking to him, he can still here u. Much love P xxxx

[susikus]

Hugs Jacqui, this is hard isn't it? You can still spend time with him, talk to him. Hearing is the last sense to go and he will know you are with him. Look after yourself and come and talk to us anytime. Your dad has done really well and so have you. Lots of love, Sue, xxxxx

[PCUK Nurse Jeni]

So sorry to hear this Jacqui.

We are thinking of you.

Support Team.

[DRAD3]

Hi Jacqui

My heart goes out to you - I so wish I could take away your pain and make everything OK but we are all powerless in this situation. All I can say is that I have been where you are and understand your sense of loss (even before it has happened) and your utter sadness. It is so unfair that your Dad has deteriorated and hard for you to come to terms with when you have constant reminders of what has been - he sounds like a wonderful man, creative and caring. I hope you have some time to tell him or show him how much he is loved and how he will be missed and that he is comfortable and peaceful on his journey.

We will continue to think of you all.

lots of love

Deb

x

[jacquik]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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