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

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sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Wish someone would help him

Postby sandraW » Sat May 10, 2014 3:02 pm

Hi Leila,
I do think it is completely necessary to take both solutions and not eat as advised, I know it must be hard for your dad, but you might get a situation were they won't do the procedure or that they do it, and are still not able to diagnose your dad's problem, so I do think its important for him to follow instructions as far as he is able too, I really do feel for him. take care sandrax

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Wish someone would help him

Postby Didge » Sat May 10, 2014 4:49 pm

I agree. I think this is one situation where you have to play it by the book. it would be terrible if they can't see anything because of the system not being clear and then be back to square one. At least you'll be a little further down the road of hopefully getting an answer. x

Fifi

Re: Wish someone would help him

Postby Fifi » Sat May 10, 2014 5:47 pm

You are both right.

I just don't like the thought of it all for him. He keeps saying if they don't sort it, then he will starve to death. He says this is his last hope.

xx

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Wish someone would help him

Postby Cathy » Sun May 11, 2014 11:41 am

Hope you get something definite from it Leila.

Fingers crossed for you and your Dad

Cathy xx

Fifi

Re: Wish someone would help him

Postby Fifi » Mon May 12, 2014 10:25 pm

Dad had colonoscopy today.

Thankfully the Moviprep wasn't as horrific as we thought. Dad hasn't had stools since December, so I guess he was already flushed out and clean.

He never had a sedative. He says he wish he had, as it was horrible and a camera down the throat is very easy going compared. They took a biopsy of his small intestine. The consultant said he couldn't visibly see anything out the ordinary. He said he should have the results this week, fingers crossed.

x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Wish someone would help him

Postby Bowie » Mon May 12, 2014 11:19 pm

Leila, glad that's over for your dad and hope it is OK.

Fiona X

Fifi

Re: Wish someone would help him

Postby Fifi » Tue May 13, 2014 2:03 pm

We will have the results by this Friday. Have booked the day off work and will be there with him. He is very fragile now, as he has lost just so much weight. Having to not eat for the scan as well, has really knocked him back.

x

Fifi

Re: Wish someone would help him

Postby Fifi » Sun May 18, 2014 3:07 pm

We didn't get the results. We see him again on the 6th June. He will arrange for my dad to have the lactulose breath test. My dad also has to do another 3 stool tests, think they are clutching at straws.

My dad is back to having diarrhoea 10+ times a day. He is so depressed. He is always crying to me. Keeps saying he doesn't care about the cancer. He says he keeps thinking about suicide. He says no one wants to help him. No one is doing anything. He asks and asks, as I do, for someone to help his diarrhoea, but no one will. We are being ignored. No one knows the solution, so ignorance is their best bet, so it seems.

This is all so very cruel. No cancer symptoms for stage 4, yet my dad is housebound. He nearly weighs the same as me.

He has a huge appetite but within 20 minutes, it is in the toilet. Weight is falling off him. He sits in the house day after day, looking out the window. That is his life.

No one is helping.

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Wish someone would help him

Postby sandraW » Sun May 18, 2014 5:51 pm

Hi there Leila,
So sorry you hsven't had an answers to your dad's problem yet, it must be so worrying for you, the problem is we are all so different and perhaps the Dr's just can't find the answer yet. Let's hope they come up with a solution very soon, thinking of you both kind reagrds sandrax

Fifi

Re: Wish someone would help him

Postby Fifi » Sun May 18, 2014 5:57 pm

Thank you Sandra.

it has been like it for 6 month now. He really can't take anymore. I don't know how much longer he will put up with it.

x

Lisajb
Posts: 16
Joined: Sun Feb 16, 2014 10:16 pm

Re: Wish someone would help him

Postby Lisajb » Sun May 18, 2014 9:27 pm

Hello Leila
I am so sorry that your dad is feeling that people are choosing not to help him as I believe from all that you have described that it's not that no one will, it's that they don't know what is wrong or how to treat the symptoms even. As Sandra has just said, human beings are actually very complex and we all subscribe to the myth that medics know everything and anything can be cured. Unfortunately, and very sadly for us all on this forum, we come to realise that medical science is really only scratching the surface. Some amazing things can be done to save lives and cure illnesses but there is far more unknown about the functions of the body and brain than we realise. I think that sometimes the language used confuses the issue - when healthcare professionals say "nothing can be seen or detected" what they are actually saying is "using the knowledge we have about this bit of the body and the machinery and tests we have invented so far, nothing has been detected." This doesn't mean that there is nothing wrong, or that they are deliberately choosing not to do anything but they have no more tools or knowledge to draw upon and at this point they are often having to wait for the body to do something that medicine does know about or some bright spark to have a crazy idea that very occasionally sheds new light on things. Unfortunately medics are just human like the rest of us and there are only a couple of bright sparks in any group – the rest of us are average, hard working people who go to work with the best intention but sometimes the problems faced have no solutions yet.

I am not sure that this helps at all. Anger can be as destructive as any disease. Your dad is clearly very unwell and scared that no one knows why. This is one of the most scariest places to be as an individual - feeling scared and helpless with no safe place or person to make it right. You are admirably trying to take on that role but it's hard for you too. Fighting each other and fighting the medics leaves neither of you time to gain positive support and draw on those that want to help even though the answers may be genuinely unknown at the present time. People do their best thinking, most creative thinking, when they are nourished and encouraged, not when they are angry and scared - this is when the brain cuts off complex thought processes and draws only on basic survival strategies. You have a lot to give and clearly a lot of energy. Can you use it to encourage creative thinking and gather support from all around you?

I hope you receive this message as it is intended Leila - to offer you support and an opportunity to step back from the centre of the distressing situation you are in so that you can take a breath and maybe find another way of thinking about things. I am the biggest critic of medics - another long and sad story completely unconnected with PC - but I do know that the majority try to put into practice all that they have been taught and learned. Sometimes a small number break the rules but these are in the minority. It is the science, and sometimes the funding, that is lacking not the desire to do good.

Best wishes
Lisa
Last edited by Lisajb on Tue May 20, 2014 7:31 am, edited 1 time in total.

sandraW
Posts: 1044
Joined: Thu Oct 31, 2013 5:38 pm

Re: Wish someone would help him

Postby sandraW » Mon May 19, 2014 2:55 pm

Lisa what a truly lovely post I am sure Leila will take great strength from it sandrax

Lisajb
Posts: 16
Joined: Sun Feb 16, 2014 10:16 pm

Re: Wish someone would help him

Postby Lisajb » Fri May 23, 2014 4:06 pm

I am really sorry to discover that since posting last Sunday Leila has left the forum. I hope that my post was not solely responsible for her decision to leave and I want to offer my apology to anyone who may have considered me to be talking out of turn. It wasn't my intention to offend but to try to offer an alternative perspective. I recognise however that this may have come across as critical even though that wasn't intended.

Leila - if you do come back to the forum as a guest please accept my apology if I offended or upset you as that was never my intention. I think all forum members want to help each other and it is very difficult to convey empathy through the medium of computer messages at times.

kind regards
Lisa

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Wish someone would help him

Postby Slewis7313 » Fri May 23, 2014 4:58 pm

Lisa, when I saw your post in which you were very obviously trying to help Leila to deal with her and her father's predicament, I, like Sandra thought how well it was articulated and that it might help Leila to look at things from a different angle and perhaps as a result relieve some of the substantial and relentless pressure she seemed to be under for such a long time. I have so often wanted to say something to support Leila, but am in such a different (better?) place to her and have simply not been able to find the right words.

I know it was meant to support and absolutely not a criticism, so would also like to state that if Leila is reading this thread, please rejoin us as we are indeed all on the same side in the awful world that is Pancreatic Cancer and I would not wish you to become isolated in dealing with her Dad's illness.

Steve
X

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Wish someone would help him

Postby RLF » Fri May 23, 2014 5:08 pm

Lisa you said nothing wrong, you wrote very eloquently and with nothing but Leila's best interest at heart and it read that way.

I have no doubt the Drs do want to help her father, but sometimes it's very difficult to work out what the problem is, the body is a complex thing and just because they are Drs it doesn't mean they will always be able to find the exact reason, frustrating as that may be to all involved.

I think unfortunately for Leila her Dad is taking some of his frustrations out on her which will always be hard to deal with and maybe some time out away from here will do her good and to help clear her mind. I don't see you at fault at all here Lisa, there is no way you would have made her leave, your message was full of reason and good will.