Thank you

[spongle15]

I stumbled across this site last night while trying to find our something about Creon, the medicine used to replace pancreatic enzymes. Thank you so much to all of you, your courage, optimism, honesty and love came flooding out to me and for the first time since entering the shadow of Pancreatic Cancer felt like there were others who understood how I am feeling.

A week ago my Dad was told that he had a large inoperable tumour in his pancreas that goes around the artery, and that it looks likely that it has spread to his liver. He has had biopsies taken and we are painfully waiting for the results. He has been suffering from terrible diarrhoea for over 3 months now and after weeks and weeks of tests and waiting was finally referred for a colonoscopy. This came back clear and we thought that he was in the clear for Cancer. A subsequent CT scan however, showed a 'shadow' on his pancreas and he was referred for an endoscopic ultrasound and biopsies. The ultrasound revealed the extent of the tumour and the fact that it is around the main artery. It also showed up lesions on his liver and biopsies were taken from there too. We are still waiting for these results.

He was prescribed Creaon a couple of weeks ago but it has been having no effect to date. I found a post that Jeni made a year or so ago to someone else that talked about doses and the use of imodium. The dose that you recommended Jeni was over 3 times higher than that which Dad has been prescribed. I printed this out and showed it to Dad this morning, he has increased his dose today and speaking to him this evening says it is the best he has been with food since March. He has promised to phone the hospital tomorrow to check that they are happy with him increasing the dose, but it was wonderful to just hear him sounding positive about something - thank you Jeni for that post you made so long ago.

As you will all no doubt understand so well, I am still in a state of shock about all of this, I seem to cry at the drop of a hat and have moments when I can hardly breathe for the pain. I feel so helpless and when I desperately want to make it all better for him I can't. I cry for him, for his wife, for my children who adore him and are too young to understand and for myself - I cannot begin to imagine the pain of when he is gone.

But for now I am determined to fight, for him and with him. I want to make every day as good as it can be and be there to share in his sadness and despair as well as moments of joy - which I am determined he will continue to have.

Thank you all so much again for already giving me so much strength. Having never before been involved in any online forums, and in fact always been a bit sceptical of them, I know that I will now continue to read what you all write and gain comfort from hearing what others are going through and all your remarkable stories.

love

Emma x

[wobblybobbly]

"As you will all no doubt understand so well, I am still in a state of shock about all of this, I seem to cry at the drop of a hat and have moments when I can hardly breathe for the pain. I feel so helpless and when I desperately want to make it all better for him I can't. I cry for him, for his wife, for my children who adore him and are too young to understand and for myself - I cannot begin to imagine the pain of when he is gone".

Hi Emma

The words above, that you wrote so eloquently, describe how I am feeling at the moment too. I just wanted to let you know I am thinking of you. My dad has just been diagnosed too, and this rollercoaster of emotions is just so hard. My dad had a biopsy on his liver yesterday and we too are in dire straits awaiting the results.

We can all get through this together.

Take care

Alison

xx

[spongle15]

Thanks Alison,

your post on the 6th of June was one of the first things I read on this site and my heart went out to you immediately - I felt as though I could have written it myself. I must have read it minutes after you posted it, but at that time was not registered and couldn't post anything. We seem to be in exactly the same position at exactly the same time - although as we both know the pain is enormous, it somehow helps me more than I could imagine to know that there are others who are going through the same thing.

The waiting for results is impossible, every day feels like a week. But at the same time I am frightened of when the results come and what they will show. At least at the moment we can all still have a glimmer of hope that it is not as bad as we fear.

I will be thinking of you.

Emma x

[PCUK Nurse Jeni]

Hi Emma,

I am sorry to hear about your dad, and what he has been going through.

I am glad that upping the dose of creon seems to have helped. It is often started off on a small dose, but we find that this does not seem adequate for most people with pancreatic cancer. It is sometimes a trial and error with the enzymes, but mostly patients seem to find a dose which suits them, and also, what dose they need with certain foods -ie: smaller dose with a snack, and larger dose with a main meal. Increase it again if the meal contains more fat than normal, but DO NOT cut fat out of his diet! He should take it even with a snack.

Also, ensure that he takes it with a small glass of water, JUST BEFORE he eats.

If you require any further help, please email me at the support address (see top of forum for this).

KR,

Jeni.

[Nardobd]

What a lovely first post Emma! Thanks for your kind words and it's so nice to think that we've helped you in some small way, even if it's only making you feel less alone. We're just unfortunate enough to all be in the same boat and helping each other out with support from Jeni and others.

There are some lovely people on this forum and a wealth of knowledge, information and experience - everyone's experience is different but I'm sure you'll find a lot of kindred spirits on here. We'll try to share in your joyful times and support you in the not-so-good periods.

Hope to hear how your Dad gets on with the biopsy results.

Nicki