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

Poorly dad

Postby jacquik » Fri Feb 08, 2013 8:14 pm

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

Re: Poorly dad

Postby Morwenna » Sat Feb 09, 2013 10:52 am

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

Re: Poorly dad

Postby DRAD3 » Sat Feb 09, 2013 8:08 pm

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

Re: Poorly dad

Postby jacquik » Sun Feb 10, 2013 11:01 am

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

Re: Poorly dad

Postby DRAD3 » Mon Feb 11, 2013 7:04 pm

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
Posts: 308
Joined: Tue Aug 14, 2012 3:29 pm

Re: Poorly dad

Postby PCUK Nurse Dianne » Tue Feb 12, 2013 3:37 pm

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

Re: Poorly dad

Postby jacquik » Fri Feb 15, 2013 6:48 pm

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

Re: Poorly dad

Postby DRAD3 » Fri Feb 15, 2013 8:11 pm

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

Re: Poorly dad

Postby jacquik » Fri Feb 15, 2013 9:35 pm

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

Re: Poorly dad

Postby DRAD3 » Sat Feb 16, 2013 7:18 pm

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

Re: Poorly dad

Postby jacquik » Sat Feb 23, 2013 9:08 pm

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

Re: Poorly dad

Postby petra » Sun Feb 24, 2013 3:11 am

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
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Poorly dad

Postby susikus » Sun Feb 24, 2013 7:58 am

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
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Poorly dad

Postby PCUK Nurse Jeni » Mon Feb 25, 2013 5:41 pm

So sorry to hear this Jacqui.

We are thinking of you.

Support Team.

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

Re: Poorly dad

Postby DRAD3 » Mon Feb 25, 2013 8:21 pm

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