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PCUK Nurse Jeni
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Joined: Mon Jun 14, 2010 1:30 pm

Re: Wish someone would help him

Postby PCUK Nurse Jeni » Fri May 23, 2014 5:35 pm

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,


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Joined: Sun Feb 16, 2014 10:16 pm

Re: Wish someone would help him

Postby Lisajb » Fri May 23, 2014 8:49 pm

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

best wishes

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Joined: Sun Dec 29, 2013 10:35 am

Re: Wish someone would help him

Postby Didge » Sat May 24, 2014 10:44 am

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

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Joined: Fri Mar 15, 2013 5:43 pm

Re: Wish someone would help him

Postby Cathy » Sun May 25, 2014 5:57 pm

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


Re: Wish someone would help him

Postby Fifi » Fri May 30, 2014 8:42 pm

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.


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Joined: Sat Dec 08, 2012 8:48 pm

Re: Wish someone would help him

Postby Slewis7313 » Sat May 31, 2014 1:59 am

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


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Joined: Tue Dec 31, 2013 6:47 pm

Re: Wish someone would help him

Postby Charney22 » Sat May 31, 2014 7:09 am

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

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

Re: Wish someone would help him

Postby Didge » Sat May 31, 2014 8:17 am

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.

Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: Wish someone would help him

Postby Janiebobs » Sat May 31, 2014 9:02 am

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


Re: Wish someone would help him

Postby Fifi » Sat May 31, 2014 10:07 am

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


Re: Wish someone would help him

Postby Fifi » Sat May 31, 2014 10:27 am

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

Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Wish someone would help him

Postby jay » Sat May 31, 2014 12:50 pm

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

Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Wish someone would help him

Postby InfoForMum » Sat May 31, 2014 12:54 pm

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


Re: Wish someone would help him

Postby Fifi » Sat May 31, 2014 1:12 pm

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

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Joined: Tue Nov 19, 2013 9:30 am

Re: Wish someone would help him

Postby RLF » Sat May 31, 2014 1:51 pm

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.