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PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Mon Feb 24, 2014 1:44 pm

No problem Leila.

I think what is important for you right now is not to accept "blame" for trying to give good information. As Julia says, it could be that you need to just leave it for now, and let the dust settle, so to speak, and not mention it for a while. Take a small "step" back, although, I and others know you will always be there for your dad.

We would not normally contact someone unless they gave their permission first - usually, folk come to us (via phone, email or even the forums as you have), and we take it from there. We do not give medical "advice", as we don't have individual case notes in front of us for anyone, but we do give out INFORMATION, which is exactly what we did regarding the dose of enzymes.
My suggestion would be that you advise your dad to speak to his specialist dietitian, and get his advice that way, and perhaps then he will trust what they say. The main and most important thing here is that his symptoms are controlled, and that if he needs a higher dose of enzymes, that these are given to him.

Do give us a call if you want to chat further - easier on the phone.

Kind regards,

Jeni.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 4:40 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:29 pm, edited 1 time in total.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

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

Postby J_T » Mon Feb 24, 2014 5:01 pm

So, so pleased and relieved to hear your news Leila. No wonder your dad is over whelmed he has a lot to deal with.

GPs may see one or two cases of pc in their careers and unless you are at a specialist hospital for pc Im afraid some of the medics are not that clued up as you have already found. This is why your dads doctors may not be so on the ball with all aspects of his condition. Be prepared to be the key mover and shaker when it comes to your dads treatment and dont be afraid to question decisions.

You will always get support here.

Regards
Julia x

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

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

Postby Slewis7313 » Mon Feb 24, 2014 5:01 pm

Hey Leila, that was obviously a painful process but great that you have finally got the right result. Please pass on my best wishes to your Dad and hopefully he will reap the Creon rewards soon!

Steve
X

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

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

Postby J_T » Mon Feb 24, 2014 5:02 pm

double post

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Mon Feb 24, 2014 5:14 pm

Wonderful news Leila! I have also emailed you!

Jeni.

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

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

Postby Cathy » Mon Feb 24, 2014 5:56 pm

Hi Leila

Well done!!! Give yourself a huge pat on the back from me. I'm really impressed with how you have managed all of that and well done Jeni for coming up with such helpful suggestions...

Cathy xxx

Fifi

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

Postby Fifi » Mon Feb 24, 2014 6:50 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:30 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 » Mon Feb 24, 2014 8:19 pm

oh leila,

my heart bleeds for you, I found this initially with my mom she would fight against anything I had researched (mostly on this site) ... the district nurses are great BUT they aren't specialists and with varying degrees of knowledge, they will normally say speak to your macmillan nurse, they or your gp can arrange for yours to visit if you do not have one yet, it eveyr much sounds like you need one)... (you do sometimes get macmillan nurses though who come out and tend to your loved one, I found I got these mostly on an evening, but that was pure luck)..My mom fought against creon as well..infact I can say if she didn't take enough she was on the toilet with a backup for days and days wherein the waste she produced was far above what she was taking in) this was due to the fat exiting the body through lack of enzymes and made mom quite sick ... my mom never took creon with tea and coffee but she would take 40,000 with a main meal (or high fat food) for eg if you wanted a cream cake 'snack' I would take 40,000 with that...a low fat biscuit I would say 1x10,000 the higher the fat content the more creon needed ... but like everyone has said u cannot overdose on this ... its not an exact science everyone is different but eventually if you persist with these for your loved one their weight will steady out and the weight loss should slowdown/stop (this can need tweaking throughout)...
One thing I can tell you .. after a coupla mths of looking after my mom I was actually more informed than my local GP .. he would ask me how things were and I would make suggestions to him .. you pick up so much listening to your macmillan specialist speaking to your GP .. they say jump the doc says how high and it pretty much turned out that way with me and my moms gp as well ... the moderators on here are amazing and can give out more specialised advice than we can they are amazing, I would take that advice and it gave me confidence to look after my mom...we are all carers of loved ones who are passed or who are on that journey and its our own personal experiences showing here .. I am not medically trained but I did nurse my mom 24/7 for the entirety of her pancreatic cancer journey...I can tell you that you need to question everything..double check meds ... ask what they are for... your loved one wil grow confidence in you as time goes by, also as you grow confidence in yourself...my mom felt safer with me than ANYONE else ... including the medical professionals .. this was because I questioned everything and a lot of the time that changed the way she was treat, what medications she was prescribed etc, you learn to check for patterns in the way medicines work etc ... the nurses and docs arent there 24/7 unless your loved one is hospitalised and no one knows your loved one better than you, they will also rely heavily on carers information as they can only know what they have been told .. sitting down and just accepting is not the way to go ... your loved one will thank you for it eventually .. my mom used to say a lot..I wouldnt be here if it wasnt for you ... you will be their eyes and ears when they can't be... it will take time your poor dad is going through a horrific time and one of the hardest things I found with my mom was when she realised she had grown dependent on me that was the toughest time for her the loss of independence...she fought against me when I had left my entire family to move in with her for the 8 mths and 1 week she fought this horrific disease...I did become her punching bag (so to speak) for a while, where eventually I said, you are seeing me as someone who is taking away your indepence when in actual fact you 'are' dependent on me ... there are of course varying degrees of dependence and a lot of that depends on how medicines effect you .. my mom had some awful reactions to drugs .. morphine would make her hallucinate and effect her mobility to the point where she couldnt even hold her own weight sitting up or hold a cup without spilling the contents...some drugs just dont suit...and she ahd tried different drugs until we found one that gave mom a new lease of life..one wk she was as I described ... change of drugs ... within 1 week she was back to herself and out shopping ... I think though if your dad will allow you to be there when doctors are and sees that you are asking 'the right questions' thats a start in seeing you in a different light...you can't force this and its all going to be in baby steps ... once your dads macmillan nurse is there and you start sharing info with the macmillan nurse that you have gleamed from this site/moderators... then your dads confidence will only grow in new info you bring about ... I think you are doing really well considering and am so pleased Jeni was able to help out ... your dad was frightened and overwhelmed and everything was too much....you get so much info thrown at you sometimes you dont hear it all ... the doctors will go into more detail usually if you probe (no question is too silly) our gp got used to seeing me with my list of questions when I let him in .. thinking about it now I'm smiling .. if I didn't have my writing pad in my hand he would say .. no questions today? lol .. I would say OH theres always questions :D .... usually I would say I need this, this, this, this .. and this isnt working, whats the next step? I've been told we can try this? why havent we tried it yet? etc ... I think though you've already cracked part of the confidence barrier with your dad and am sure he'll be more ready to listen to new suggestions from you ... keep on keeping up the fight honey ..

love and hugz
marie

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 » Mon Feb 24, 2014 8:32 pm

This is my thread btw honey...you'll see my journey on here with info on the drugs problems we faced and how it was overcome ... some of the things on there might help you question when/if you face these issues yourselves .. drugs suit everyone differently its just really to let you know what questions it raised for me ... thread is 'tired' u can copy and paste the link below

http://forum.pancreaticcancer.org.uk/vi ... f=4&t=1057

hugz
xx
marie

Fifi

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

Postby Fifi » Mon Feb 24, 2014 8:47 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:30 pm, edited 1 time in total.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

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

Postby nikkis » Mon Feb 24, 2014 8:54 pm

Leila, you have done such a fab job, I think it is very hard to take advice from your child, but your love and care for your Dad has meant that you have really been able to get through to him, and I really hope he feels better soon.

I often find that by mentioning things I have learned here, and from Jeni, I can really surprise the medical profession,and they are convinced I know what I am talking about! I have a nursing background but knew nothing about pancreatic cancer , and there is very little knowledge out there.
Nikki

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

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

Postby InfoForMum » Mon Feb 24, 2014 9:25 pm

Leila, so identify with this. Thankfully my Mum is open to what I bring her, but I know, had it been my Dad, I would have been in a desperate position always being told to not contradict the doctors even when I knew they were wrong.

Cracking job hon and trust your instincts.

Sarah
XXX

Fifi

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

Postby Fifi » Mon Feb 24, 2014 9:36 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:30 pm, edited 1 time in total.

Fifi

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

Postby Fifi » Mon Feb 24, 2014 9:41 pm

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Last edited by Fifi on Wed Mar 05, 2014 7:31 pm, edited 1 time in total.