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PCUK Nurse Jeni
Posts: 1084
Joined: Mon Jun 14, 2010 1:30 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby PCUK Nurse Jeni » Wed Feb 26, 2014 12:26 pm

No problem Sue!

Jeni.

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Wed Feb 26, 2014 7:20 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:33 pm, edited 1 time in total.

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby marie souter » Wed Feb 26, 2014 7:58 pm

Aw leila,

thanx for your kind words, at the time I was so exhausted but the urge to care for your loved one supercedes anything else..the thing is no medical professional will care as much as you..I can see this changing you...as you say you are normally a quiet person...and it does change you..you are going to be so much more assertive..I think it's like when you look after your kids..anyone messes with them you're like a lioness...your dad sounds like an amazing man I think as he sees the changes the creon will do for him he will be much happier to take it .. but remember to tell him sometimes it can need tweaking depending on what hes eating ..
I totally feel for your dad with the gastroenterologist, you;d like to think they would bend over backwards but its not always the case .. we got some very conflicting advice especially with the diabetes...eat what you want...don;t eat what you want...to and fro...in the end my mom had so little appetite I just said .. screw it and gave her what she wanted ... you can always ask the moderators for my email address if you feel you would like to know more of my 'practical journey' I really dont mind...I was lucky in the fact I was like a sponge...I agree with Nicky we do end up mini fonts of info...you pick so much of the terminology docs and nurses alike thought I had a medical background and relied on me heavily for my input..the only time I felt frustrated and not listened to was when we had 'locum' doctors I used to dread having to deal with them ... my mom did have bowel movement problems throughout, I think with this awful disease because it can effect the whole of the digestive tract its just an inevitable side effect, but like I say you do start noticing patterns, you will know when certain foods effect it...I used to keep a diary of bowel movements..nausea...food eaten/fluids and it really does help as this was a question I was often asked this is when you start seeing the patterns... you would be suprised how suddnely a week or two can pass without a bowel movement and you dont know...I did also originally kindof wonder what our macmillan nurse was there for UNTIL we had our first hiccup and it changed my entire opinion of them...they totally kick everyones bum when you see them in action its amazing...my advice honey...take each day as it comes .. look after and get through today, tomorrow will come soon enough..each day brings its own challenges its own rewards...you will have some amazing highs in all this as well...I think to be honest you are already showing your dad what a lioness you are what a strong lady you already are, you will end up his rock xxx baby steps honey

hugz
marie
xx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Creons, Nurses, and Here. I'm at a loss.

Postby marie souter » Wed Feb 26, 2014 8:07 pm

cathy, lol just imagining you singing .. 'we shall not we shall not be moved' handcuffing yourself to the docs desk lol...

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Wed Feb 26, 2014 10:39 pm

Leila, you did great! Well done!! I'm really pleased for you and proud :)

Marie, you have no idea!! I still have palpitations now thinking of it ;).

Cathy Xxxxx

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Slewis7313 » Thu Feb 27, 2014 8:44 am

Really pleased for you and your Dad Leila.

Steve
X

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Thu Feb 27, 2014 5:48 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:33 pm, edited 1 time in total.

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Sat Mar 01, 2014 10:18 am

Does anyone know please if my dad can take codeine and tramadol together? He has just started codeine yesterday ( to try and help with diarrhoea). He didn't take his tramadol last night and he had a lot of pain.

He has also just started getting jaw ache on the right side, is this a symptom of his cancer?

Leila x

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Sat Mar 01, 2014 7:06 pm

Hi Leila

I'm afraid I can't give any advice from my own experience but did a quick look on the Internet. Conflicting replies so I would say not to without getting advice from your GP.

As for jaw ache, I certainly haven't heard of this before. Has he had a dental check up recently? It is a good idea to do so for anyone undergoing or about to under go chemotherapy. It might be a referred pain from a tooth? Jonathan had receding gums after he started chemo which did make his mouth a little bit sensitive.

Sorry I can't be more helpful

Cathy xxx

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Sat Mar 01, 2014 7:42 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:33 pm, edited 1 time in total.

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Sat Mar 01, 2014 7:51 pm

Oh I'm sure it will be something very simple, just keep an eye on it and mention to GP if it doesn't get better. Might be an inner ear thing?

Cathy xxx

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Sat Mar 01, 2014 7:58 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:34 pm, edited 1 time in total.

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Sun Mar 02, 2014 12:59 pm

Hi Leila

It was bl**dy hard, I won't pretend it wasn't at times. I used this forum a lot for tips and advice and spoke to Jeni here too, again for advice. I held onto hope, there are some people who post on here who are still doing really well sometime after treatment.

Also, I lived with Jonathan so tried to remain upbeat and cheerful and positive around him as I believe that that helped him. There were moments, of course where I felt down when he was, or he was in pain so would get upset but those times I saved for when he wasn't around (I worked).

it's hard Leila. Don't beat yourself up if you feel down yourself at times but, for me, I tried to remain positive and focussed on the here and now.

Not sure if this helps.... Everyone copes differently I think. Are you getting any support yourself?

Cathy xxxx

Fifi

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Fifi » Sun Mar 02, 2014 1:31 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:34 pm, edited 1 time in total.

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

Re: Creons, Nurses, and Here. I'm at a loss.

Postby Cathy » Sun Mar 02, 2014 6:11 pm

Hi Leila

There is nothing silly about saying "we'll keep trying".. What else can we do?

I noticed on a different thread that your Dad is gong to start a clinical trial. Mike (cestrian on here) was part of a clinical trial and he had a really good experience being on it with the level of care etc so hopefully your Dad will have a similar experience. (Mike, hope you don't mind me saying this??). This could definitely help with his feeling down. Also the feeling that he is doing something proactive that could stop symptoms and hopefully stabilise and reduce the tumour should help with his moods. You now have a date for that starting (everything crossed) so you can remind your Dad of that when you talk to him. Your Dad agreeing to go onto the trial shows that he must have a positive feeling about doing so.

If you though it would be helpful to you you could ask your GP to refer you to psychological support and your Dads local community palliative care team (or Macmillans) are there to offer you support too.

Keep on keeping on!

Cathy xxx