A forum for family, friends and carers of pancreatic cancer patients

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pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

my dad

Postby pauline » Tue May 26, 2009 7:10 am

hi

we were only told 3 months ago that my dad has p/c it had already spread to the liver and other parts we are all so angry with the gp because he has been going back and forth to the doctors for the last 1 year

we were told upto a year with chemo but he hadn't really started (he had 1 lot) when they said nothing else can be done then told he has 4-8 weeks left how can this be he was a very fit man going to the gym 3 times aweek to now sleeping most of the time , none of us can get our head around things.

many thanks for reading this

Pauline

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: my dad

Postby chinup » Tue May 26, 2009 8:36 am

Dear Pauline

I'm so sorry and understand the terrible pain you are all going through now. It took months to get to the bottom of my mum's problems, she was backwards and forwards being treated from everything from IBS to depression. We couldn't get appointments, test results, nobody seemed to want to know. When they did diagnose they told us she had advanced pancreatic cancer and they did what they do with everybody with this disease who they can't operate on - started her on chemoptherapy for palliative care. No other options suggested by them at all, they just wrote her off basically. She stuck it out for a good while. But it robbed her of any quality time left in her her life and looking back we wish we had thought through it more carefully and spared her the additional agony, but at the time we couldn't think straight at all.

Your poor dad, how old is he? All I can say is to make sure that he is as pain free and comfortable as possible and get all the help and support you can.

It's awful to read about yet another person having to wait until it's pretty much too late before they do anything. You're in my thoughts. XX

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: my dad

Postby Nardobd » Tue May 26, 2009 6:01 pm

Hi Pauline and I'm so sorry to hear about your Dad. Is he at least on adequate pain relief? If he needs further painkillers or more nursing care then you might need to engage some pester-power tactics with the NHS. If your Dad wants a second opinion then he's entitled to that too.

Other than the NHS, do ensure that you contact your local Macmillan branch. They offer support and services to anyone affected by cancer (not only cancer patients). I know that you're only thinking of your Dad right now but you need some support too - even if it's only a way to vent some of the anger, helplessness and hurt that you're feeling.

I'll keep you and your family in my thoughts and prayers.

Nicki x

Lisa

Re: my dad

Postby Lisa » Tue May 26, 2009 8:18 pm

Hi Pauline,

I'm so sorry to hear about your dad! I'm also new to this, my mom was diagnosed 7 weeks ago with advanced p/c thats spread to liver and possibly lungs, after months of dead ends and fighting for appointments.

She has her first appointment this week to discuss treatment so unfortunately i can't really offer you any advice.
But i wanted to let you know that I can understand a bit what your going through and how angry/baffled/useless you feel!
Its like being stuck in a bad dream!

Please let us know how its going with your dad (and you!).

Kind Regards
Lisa x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: my dad

Postby Ellie » Tue May 26, 2009 8:32 pm

Hi Pauline

So very sorry to hear about your Dad. It seems pancreatic cancer is so hard to diagnose and often, there are not many treatments which can be offered.

I sincerely hope your Dad is kept comfortable and pain free. Wishing you the strength to cope with this awful situation.

Sending you my thoughts and best wishes.

Ellie
x

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: my dad

Postby pauline » Tue May 26, 2009 10:55 pm

hi thank you all so much for your replies it really means a lot

my dad is 62 years old and untill 7 weeks ago was a very fit and able man the change in him is staggering to say the least. he is nearly pain free which is good news i saw him friday then again today and looks like he is taking a turn for the worst .
they have got support which is good but we all just feel so useless they is nothing we can do to help him we don't know what to say him or mum

thank you all again it has really helped knowing other people have gone or going through the same thing

lisa i do wish your mum and the rest of the family all the luck in the world XX

kind regards

pauline XX

chinup
Posts: 47
Joined: Mon Jul 07, 2008 2:22 pm

Re: my dad

Postby chinup » Wed May 27, 2009 12:28 pm

Hi Pauline,

62, your dad is no age at all bless him. Same with my mum - a 68 year old previously fit and well non smoker, non drinker, healthy lifestyle when she was diagnosed. It's all happening so quickly for you though, I am shocked that you have been give a diagnosis of 2-3 months so quickly, that seems to be unusual but them I guess i am getting to the stage where I am not surprised by very much with pancreatic cancer. It is reassuring that he is not in any pain. You could do with some answers and explanations though, it would help you all then you could start to help each other - it sounds like you are all in shock at the moment.

thinking of you XX

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: my dad

Postby Nardobd » Wed May 27, 2009 8:12 pm

Hi Pauline

As I'm in the same position as your Mum, I can confidently say that you're doing exactly the right thing by just being there for her and your Dad. There's no need to say anything profound. Don't underestimate the strength that you will give them both - your support is the one thing you can give in this situation.

Take care

Nicki

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: my dad

Postby pauline » Wed May 27, 2009 8:36 pm

hi nicki

thank you so much for your reply

i talk to mum and dad at least once a day as i live a fair way from them(1.30 drive) it's hard to get there all the time but i do get there at least 3 times a week which i have found really hard the 2 weeks because he has gone down hill so fast and it is very upsetting there is always a few tears but also a lot of laughter talking about things that my children and all the other grandchildren have said and done over the years.we all know now that all of the grandchilrden will not see thier grandad again as it to upstting for everybody,but they know how much they are loved by him and he know's how much he is loved by them

sorry i keep going on but i'm finding this helps writing everything down it helps me think stright so sorry if i am rambling on.

love pauline X

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: my dad

Postby Nardobd » Thu May 28, 2009 1:09 pm

Hi Pauline

Don't worry about rambling - I can talk (or type) for England! It does help to get it all out, even if it's repetitive and we've all been there.

"Being there" for someone doesn't necessarily involve physical presence - our oldest daughter has two (part time) jobs and we the youngest lives about an hour's drive away, so we don't always see them as much as we would like. However, I know that if we really needed them I would only have to phone. I speak to them frequently on the phone between visits and, in all honesty, sometimes that's easier because it's not quite so intense. That probably doesn't make any sense, so let me give you an example:

Yesterday, Ted had chemo and afterwards (as he always does) was coughing a lot. Either of our daughters would have worried about every single cough if they'd been there but I was able to talk to them calmly on the phone and let them know he was ok. I know he's ok and that it's just a side effect of the chemo but because they aren't always there when he's had chemo, they wouldn't know that. Their worry would trouble me (because they would ask if I was absolutely sure he was ok all the time and I'd begin to doubt myself) and just make it all a little bit more fraught.

We have two grandchildren too. Our daughter is worried they may forget their grandad, so she's making a "grandad book" with copies of pictures from happier times and little stories reminiscing about incidents such as the time Ted was holding our grandaughter over the pond to feed the fish and nearly dropped her - in his panic not to drop our grandaughter, he waded into the pond and got sopping wet! It's not necessarily the big things - little things like that really bring memories to life.

I'm sorry that your Dad is deteriorating so rapidly and that you're finding it so distressing. It's a huge trauma to have to come to terms with in such a short time. Tears are part of the process and we all fall apart sometimes but it's great that you have a lot of laughter too. That's really important!

Love
Nicki x

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: my dad

Postby pauline » Sat May 30, 2009 1:57 pm

hi all

just a quick update....

my dad went into hospital last night because of the amount of pain he is in, don't know yet what they are going to do but we are hoping he will be allowed to come home tomorrow or monday but we really don't know mum thinks he has had enough,
what are we going todo without him in our lives it's unthinkable to say the least.

anyway i do hope all of you are well and keep your chin up

lots of love
pauline
XX

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: my dad

Postby Nardobd » Sat May 30, 2009 6:18 pm

Hi Pauline and I'm sorry to hear your Dad is in so much pain. Let's hope they get it under control and that he can come home in the next few days. I can't bear thinking about the future without my hubby either and, although it's difficult, I try to just take one day at a time.

Do let us know how your Dad is getting on and remember that we're here for you. Take care.

My thoughts are with you and your family.

Love

Nicki x

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: my dad

Postby pauline » Sun May 31, 2009 10:06 pm

hi all

just a update...... my dad was allowed home from hospital last night but then took a turn for the worst last night. he is still holding he's own just about the district nurse has been really good she has been out twice today to help mum with him. we have been told that things are not looking good and to see him as quick as we can. i'm going tomorrow and one of my sisters and my brother is there now my sister will be there with my mum and dad untill the very end.

i want to thank all of you for your support you have given me over the last couple of months (even though i only joined last week i have been looking )

i will keep you all updated

love pauline XX

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: my dad

Postby Nardobd » Mon Jun 01, 2009 12:08 pm

Oh Pauline, I'm so very sorry to hear your news and my thoughts are with you and your family. Do keep us in the loop and don't forget that you always have a friendly ear here.

Love

Nicki xx

pauline
Posts: 48
Joined: Mon May 25, 2009 3:24 pm

Re: my dad

Postby pauline » Tue Jun 02, 2009 7:44 pm

hi all

just an update my wounderfull dad passed away today at 9.00 am all 4 of he's children and his beautyful wife our mum was with him at the end.

i am so angry we were left on own from 5 am untill he died no doctors no nurses not anyone,not even macmillan nurses
my dad was in so much pain he was very ill on monday my mum called the macmillan nurse and was told thst she would be out as arranged on tuesday(which she didn't keep) if she had then someone who knew what they were doing would have been with him.

the only thing that came out of this is he knew the ones with him were the ones who loved him the most are the ones who were with him at the end i'm greatfull for the time i spent with him

love to all of you that are going through this cancer

my best wishes

pauline

p.s i will keep writing if thats ok

xxxxxx