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sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Thu Jun 18, 2015 9:36 pm

So I have now got script for creon demanded appointment from our specialist this Tuesday even though they didn't have one ? Have spoken to nurse from this site only now have to speak to dietician .I have succeeded more today than in 3 months .I am now ready to battle Ty all for support and help x

Fifi

Re: frustrated

Postby Fifi » Fri Jun 19, 2015 5:42 pm

Hi Sheena,

Pleased you spoke with one of the nurses. I am sure she/he was some help to you.

Unfortunately, we are all very experienced with this. It is a huge fight. The patient fights the disease, we fight the system.
Please keep posting on here, and please ask questions you need to. Someone will be able to offer you advice.

How is your husband today?

Leila xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Fri Jun 19, 2015 9:22 pm

Any help on creon dosage please . Unhappy we wasted 3 months my hubby wouldn't be so skinny know if drs actually knew what they were doing

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Fri Jun 19, 2015 9:26 pm

Ty Leila he is in good spirits has discussed his funeral and sorted out clothes for charity ,I am finding this strange as he never parts with anything ,do you think he knows he hasn't much time left it just being organised I on the other hand am feeling very emotional , And finding it hard to concentrate hopefully weekend will be a bit better

Fifi

Re: frustrated

Postby Fifi » Fri Jun 19, 2015 10:32 pm

Creon dosage is very personal. Some people may only need one woth food, others might need 15. What strength is he taking? You need to remember that they are enzymes, not medications. He can take as many as he needs, you cannot overdose.
You need creon for the digestion of fat, not the amount of food on a plate. The more fat, the more creon is needed. If his stools are still yellow, that is one indication that he needs more.
Dad would have 12 40,000 with a main meal.
Unfortunately, you have to play around with it until it suits him.
What is he taking now?

With the regards to him clearing out some clothes, that must be very tough for you to see. Dad never did that, but he did used to remind me what I needed to do when he had passed away. I think possibly, he just trying to get some acceptance maybe? I know how hard it is. Lets try and get the creon sorted for him, and hopefully he can start putting on a little weight. He will feel so much better if that could happen.

Leila xx

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: frustrated

Postby EmmaR » Sat Jun 20, 2015 1:29 am

Sheena oh I do feel for you the saddest day before my hubby passed away was when he took his golf clubs out the boot of our car and stored them away saying I won't be playing golf again as they were always on the car ready for his morning round of golf it broke my heart but all I can say is be strong and somehow we do find the strength to cope against all odds but belive me the sadness never ever goes away but precious memories live for ever so carry on making those memories for as long as you can and stay positive and don't give up hope !
EmmaR x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sat Jun 20, 2015 7:32 pm

Dear Emma I am trying to be strong but feeling very tired I am not sleeping well ,came home from work ha has now sorted through paper work he has tired himself out .I know he thinks he is helping me but I feel so sad he is doing this ,has started on creon so hope will not lose any more weight ,it's so sad to see him so thin he has aged so much .the only consolation I have is we had a lovely holiday at Xmas in vienna if only we knew what was around the corner we would of stayed longer and done so much more .thinking of you all we are all doing a grand job x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Sat Jun 20, 2015 7:36 pm

Dear Leila he is on 10,000 dosage have given him 2 with snacks etc and 4 with his larger meals had a bit of diaroah today so maybe to many.

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Mon Jun 22, 2015 6:12 pm

So we get to see oncologist tomorrow not sure to be scared worried or just grateful hoping that all our questions will be answered it's been along time getting this far

Fifi

Re: frustrated

Postby Fifi » Mon Jun 22, 2015 6:24 pm

Sheena,

He isnt having a high dose of creon. Have they only offered the 10,000 ones? Is the consistancy of the diarrhoea changing? I know they don't like to talk about thag, but he must if you are to help with that.

My advice for the oncologist tomorrow, is to take a book with you. Write questions in it tonight, and read them out to him tomorrow. Don't be scared to ask anything. Make sure he answers your questions.
I had a book with Dad and it was a god send. I constantly wrote everything down in it. You find that when you get to an appointment, you mind is blank. It is only when you get home, you think, I should have asked that.

Good luck

Leila xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Mon Jun 22, 2015 9:18 pm

Ty Leila I am doing that tonight I don't feel comfortable with oncologist it feels like you just get in then your back out ,I will ask for higher dose creon .Just need answers now fed up of being left in the dark

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: frustrated

Postby kittycat » Tue Jun 23, 2015 9:31 am

Hi Sheena, hop it all goes well today. Don't let them rush you, you need answers to your questions and my goodness, you've waited long enough for the appointment, but they should have some sort of plan of action for you. I know how painful it is and you've waited so long so good luck today.

Sue

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: frustrated

Postby sheena » Tue Jun 23, 2015 8:33 pm

So on Tuesday we start chemo hooray .oncologist was a bit confusing said he had our appointment for biopsy but then went on to say all that could go wrong and that he was 90% sure that is was cancer and the biopsy would only confirm this .then went on to say as Steve didn't want treatment it wasn't worth having.at no stage did Steve say he didn't want chemo ,it was oncologist that said he needs biopsy before he started it .So we have wasted precious weeks .Will be given a dietician appointment hopefully for next week.So no biopsy, and straight into chemo as much as I'm angry as this could have been done weeks ago I'm just glad we are getting somewhere .question have any of you been asked if you have private insurance we were asked twice today does this give you better treatment?

Fifi

Re: frustrated

Postby Fifi » Tue Jun 23, 2015 9:01 pm

Brilliant Sheena, progress at last. What chemo is he having?

We were never asked if we had private insurance. I am sure some otheres here will be able to answer that for you.

Steve must be relieved to be starting chemo finally.

Leila xx

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: frustrated

Postby kittycat » Wed Jun 24, 2015 4:10 pm

Good news at last, you must feel that you're getting somewhere now. We've never been asked about private medical insurance and must admit, it does seem a bit strange. Do you know which chemo he will be having yet.

Sue