Wish someone would help him

[Bowie]

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

Fiona X

[Guest]

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

[Guest]

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]

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

[Guest]

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]

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

Edited May 20, 2014 by Lisajb

[sandraW]

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

[Lisajb]

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]

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]

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.

[PCUK Nurse Jeni]

Steve and Rob,

What lovely supportive replies.

You are all Trojans, and it comes across even in the tough times.

It is lovely to see you support Lisa in this way.

Echo the comments to Leila - please do get in touch with us again.

Kind regards, and have a good weekend all,

Jeni.

[Lisajb]

Thank you Steve and Rob - you are both always so helpful to everyone.

best wishes

Lisa

[Didge]

Leila if you do read this, come back! Support groups are great and everyone wants to help each other but there are always differing opinions and with such life and death matters going on here, emotions are going to be high. I completely understand your anger and frustration though. So many times people stick to the roles and their boundaries, particularly when they feel helpless to sort a problem out. But your dad had such extreme problems that someone from the medical profession SHOULD have done more, at least to keep trying to find what the problem was. I have no problem with anger when it drives you to fight for someone (or yourself). Sometimes the likely alternative is withdrawal, acceptance and defeat. Acceptance of a situation has its place but not when it leads to later wondering if you could and should have done more. But all the comments here were meant kindly as we all feel for you and I am so worried to think of you out there with no support. I do hope you come back but if not find others to support you. I am thinking of you and your dad every day.

Didge x

[Cathy]

Hi Leila

Just catching up on the forum this afternoon.

I emailed you earlier today. Get back to me when you get a chance?

Cathy xx

[Guest]

Firstly, Lisa, it was not down to you in the slightest that I left. You are one of the reasons I came back. I thank you so much for you post, and I appreciate you taking the time to write that and to make it personally to me. It was just coincidence that I left around the same time. I feel absolutely terrible that you thought you was a reason. You honestly weren't. I left because mainly frustration. I get so angry and anxious with everything around me, sometimes I just to get rid of everything around me. Childish and pathetic, I know that now. I need to learn to take a step back sometimes.

Thank you for what you wrote, it does make sense to me and I understand what you are saying. It is just incredibly frustrating to me that mentally, to him, it is the diarrhoea that is killing him, and I feel helpless to help. I know the consultants are trying to help, and that possibly, they feel frustrated too. I just wish they would work quicker, they seem to think he has weeks to spare while we wait for results.

Steve, thank you. I know you always try to help, and that it must be awkward for you to respond sometimes. I appreciate it when you do reply, I know you are very busy and that your mind must be very preoccupied right now.

Rob, my dad isn't horrible to me.

Didge, someone else I appreciate all messages from, is you. You have always been so good to me. Well, as you can see, I'm back. Hope that's ok with some. I'm not used to feeling this way. I am not a angry person and normally say nothing to anyone. Right now, I'm so fired up and ready for anyone to challenge me. When we have appointments, I walk in, sit down and get my book out, and I'm ready for action. Even my dad says they are scared of me and he thinks they message each other and say " get ready if he brings his daughter!" Thank you for thinking of us, appreciate it.

Cathy, thank you for emailing me and showing me the way back here.

Jeni & Dianne, thank you for speaking to me and still helping me. I really really appreciate your help.

xxxxx

[Slewis7313]

Really glad you are back with us Leila. Also good to hear that they consider you a force to be reckoned with at the Hospital and that this will help you both through what seems like an endless struggle. You will see I am burning the midnight oil thanks to the Furry Fox, but all-in-all it's not too bad.

Regard to your Dad!

Speak soon

Steve

X

[Charney22]

It's nice to see you back. I would like to say a huge thank you for

Your donations to georgie s just giving page what a lovely lady you are

And your comment really touched her thank you again.

I hope your dad's condition is improving now and that he is feeling a bit

Better, keep fighting

Cheryl xxx

[Didge]

Leila, so glad to see you back! Me and my man are heading off to the West Country today for a week (fingers crossed - that's the pessimist in me!). Our first holiday together since we met last summer. It has put my mind at rest that you are ok before we go as I will not get on the computer as much. And the sun is shining today too.

x

[Janiebobs]

Hi Leila,

Glad you are back on the forum. I am pleased your Dad has you in his corner to fight for him. I am usually very calm but totally lost it in hospital this week - I felt so out of control and the doctors just seemed to be ignoring me and mum (they probably had too much to do) and I had to pick up Dad from his Chemo. Unfortunately it was my teenage daughter who was most mortified by my outburst!

Any way take care

Jane

[Guest]

Thank you all for welcolming me back. I was a little worried that I wouldn't be welcome. I think even though I sometimes feel alone in this, I'm not. We are all in the same boat one way or another and I just need to remember that. Also, pleased I am not in my own when it comes to finding a voice. Can be quite scary when you are normally very shy.

Cheryl, you are so very welcome. I promised Georgie I would donate every month until her trip, and I will. Can't always donate a lot but I do my best. She is doing something wonderful, for a great cause. I am proud of her. For someone so young, she is getting stuck in and seems dedicated to raising money, and that's amazing. Leila xx

[Guest]

Ok. Back to business.

My dad had his first stool on Thursday morning, for this year. He was so pleased. He thought he was turning a corner. He thought he could start to go out again soon. It ended there though, sadly. He is taking 15 Loperamide's, creon, codeine and 6 sachets of Questran. It isn't watery diarrhoea anymore, more like 'porridge', is how he describes it. It is still constant though.

Good news with his CA19-9 number, it has come down loads. His levels in March were 2587. They came down quite a lot in Aprils, it was then 2063. Had a email from the clinical trials nurse yesterday and his number is now 719. So even though he has missed some chemo sessions, and he has the lowest dose possible of chemo, it is working.

Leila xx

[jay]

Great news about your Dads 19.9 marker coming down. Glad to see you are back. Take care.

Jayne x

[InfoForMum]

Hi Fifi, what a dramatic rollercoaster. My stomach churns remembering times like this with Mum. It is brutally hard to step back from the fight and just support your dad and nigh on impossible without someone like a specialist nurse to talk you through current thoughts and investigations and next steps. I hope you have that now. You have every right to know where things stand, you are a critical part of your Dad's team, not someone for them to "manage" around.

I challenge anyone not to end up in a child like tantrum if people are talking about and not to them about something this vital. You have every right to ask for and get told their workings out, or to trust in them and regroup with your Dad.

One or two things that sprung to mind when reading about your Dad. NOT from a medical background, but coelliacs lose ability to digest food for weeks at a time if they eat any kind of gluten. It can be a latent tendency kicked into high gear by a traumatic event, especially one affecting the immune system as it's an auto immune disease. This happened to my Dad. A blood test can find the marker. Also assuming a stool sample was taken to look for any microbial or bacterial problem? Not all tests look for everything.

If I'm interfering I'm so sorry. I know that Mum always shared her very darkest thoughts with me, then coped better after doing so. Knowing it helped her and she had to have someone to voice her fear and anger to didn't make it less hard on me. That's why I asked my hypnotherapist friend to visit as she could do the same and not feel guilty about my upset. We were going to take the Big C center up on their free counselling and I'd be amazed if either PALS at the hossy, Big C or Macmillan don't offer the same near you.

Most of all take care of yourself. It is so so rough and you need to stay well yourself.

Sarah xxx

[Guest]

Thank you Sarah,

You are not interfering at all. I am so much more grateful and respectful for people to comment when they have just lost someone, I can't imagine how you do it, so thank you.

It's quite funny really, my dad has always been one for manners. As a child, it was always, speak when spoken to and never interrupt. It made me very shy and not easy to make friends with. Now it's a complete role reversal. My dad just sits there, never says a word. When he is spoken to, he looks at me. They ask about his medications, and he'll look at me and ask if he takes that. I find it hard to deal with my outbursts. Before we go in to appointments, my heart beats out my chest. Then on the journey home from my dads, I'm sad, and when I get home, I'm angry, and I can really lash out. My feelings can frighten me.

I've looked up Coeliacs and Crohns disease. I don't know if they would have picked these up in blood tests that he has? Or would bloods need to be tested specifically for this?

When we saw his Gastroenterologist last, he wanted 3 stool samples to test for, elastase, infection and inflammation. We will get the results of these on the 6th. I have also asked for a lactulose breath test, which we are still waiting to have. The consultant wasn't keen on me requesting this, so I guess he's in no rush.

Thank you again for replying.

Jayne, thank you and good to be back.

Leila xx

[RLF]

Fifi wrote:

> Rob, my dad isn't horrible to me.

I wasn't going to say anything, but I feel I should as I find it a little upsetting that of all I wrote that is what you choose to see. I never said he was horrible to you, I said he seems to take his frustrations out on you. I can only make that judgement from what you write on here, saying he says he doesn't want to see you, that you make him more ill, that you shouldn't by him tickets for an event that he might not be able to make it to. That to me sounds like he gets frustrated about his situation (quite understandably because it's an awful one to be in) and, like a lot of people in that situation takes it out on his loved ones ie. you.

I hope he continues to improve and I wish him all the best for the future, but now it's probably my turn to take a break from the forums. We're all in the same boat here and I don't like being made to look like the bad guy.