A forum for advanced pancreatic cancer issues

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ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: Come on Eileen (My Mam)

Postby ali » Wed Jun 06, 2012 7:25 pm

Hi Nicola
Thought you had an appt. arranged for today with the Oncologist??
this is not good enough!!!
get on the phone to his secretary or consultant's secretary in the morning and sad to say but Demand information ( in a nice polite way )
Sorry ,but your mum should not be suffering like this!!
There is palliative care out there and she deserves the best possible care!!
My rant over too
Take care and keep us posted
Helen. Xxx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Come on Eileen (My Mam)

Postby rachelqt » Wed Jun 06, 2012 7:41 pm

Hi Nicola,
That is so frustrating for you all!! As Helen says your mam deserves better care, so will do no harm to get back on the phone!
Funny that you mention the Creon, my dad was prescribed this for the first time today. He has been suffering with diarrhea for this past few weeks, the oncolgist thought it was too mild for Creon (2wks ago) but he had a bad bout last night and the local doctor has told him to try some with his evening meals. But typical the local pharmacy had none/never heard of it and has to be ordered in!!
Hope you get your Mam sorted, 2 weeks just seems too long to wait

Rachel xx

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Come on Eileen (My Mam)

Postby laura » Wed Jun 06, 2012 11:22 pm

hi nicola and rachel, sorry to hear of the delay for your mum nicola. endorse whats been said fone tomorrow and say this is your mums life they are playing with?
with regards to creon, am surprised youve not seen mine and others posts on creon! it is usually ESSENTIAL to take creon, some drs are unaware of how it works, as are some hospital wards!!!!
you should take capsules with ALL food, not needed with fruit, bri takes 25,000 units, two with breakfast, porridge etc, one with sandwich or piece of cake, two if meat in sandwich or if cake is large, fruity or full of cream, one with couple of biscuits, usually three with evening meal, space them out throughout meal so they are "mixed" in, they are in place of the pancreas aiding digestion, no good just taking at night meal only!!!! bri can take ten or twelve a day?
you CANNOT overdose on them, hope this helps you,[ and anyone new on here ] am off on holiday, to canterbury, on friday, so will catch up with you all on my return, wishing everyone well and take care of each other, love laura xxx

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Come on Eileen (My Mam)

Postby rachelqt » Thu Jun 07, 2012 10:33 am

Hi Laura,
I have been reading back on your posts to get all the info on creon as you seem to have great advise on it.
Dad never had any reason to use it before as he never suffered with diarrhea and was eating very well and putting weight on. Although this seems to have changed a little now. He is still eating reasonably well (breakfast, small snack & small dinner) but just not as good, a bit of weight loss and the dreaded diarrhea seems to have got out of control the other night. Although he had a heavy meal(more than his usual) out at a family function followed by a G&T(lol), so not sure if this was the reason for the really bad diarrhea. But it was enough for my mum to get the doctor the next morning and get the creon. So we are waiting to get it from the chemist, hopfully today!
How long has Bri been on creon and does he suffer from any diarrhea now? Also i think the doctor has precribed the powder, is the capsules better?
Sorry for all the questions Laura. Hope you and Bri had a great break!
Love Rachel Xxx

Support Team
Site Admin
Posts: 121
Joined: Fri Sep 23, 2005 3:50 pm

Re: Come on Eileen (My Mam)

Postby Support Team » Thu Jun 07, 2012 1:03 pm

Hi Rachel,

I know that you have received lots of helpful information on Creon from Laura's posts. I just thought you might also like to have a look at our information on Creon which you can find here http://www.pancreaticcancer.org.uk/info ... t-is-creon

Best wishes,

Anna

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: Come on Eileen (My Mam)

Postby francis » Thu Jun 07, 2012 2:50 pm

Hey Nicola, it's so frustrating isn't it?! All the delays and lack of communication! I did end up thinking "why don't you want to help my mum,why do you not think she's worth giving a chance!" Very upsetting!
If you cant speak to her oncologist give your mac millian nurse a call or ask the oncologists secretary to have the oncologist to give you a call... 2 weeks is a long time. Good luck Nicola X

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: Come on Eileen (My Mam)

Postby NICOLA » Tue Jun 19, 2012 5:03 pm

Hi Everyone, Just an update. Been to see oncologist today, as the Chemo wasnt working they are not going to continue with it, the cancer has spread to my mams lungs too. He said there's nothing more they can do, all they could offer was Radiotherapy if further down the line she gets any pain. We are all devastated, but she's not in any pain at the moment, just very weak.

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: Come on Eileen (My Mam)

Postby PCUK Nurse Jeni » Tue Jun 19, 2012 5:06 pm

Hi Nicola,

Sorry to hear about your mum.

If you would like to know anything more, or need help and support, please email us at support@pancreaticcancer.org.uk, or you can call us on (020) 3535 7099.

Kind regards,

Jeni.

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Come on Eileen (My Mam)

Postby laura » Tue Jun 19, 2012 7:17 pm

hello nicola, so sorry to read your post about your mam, i can totally understand your devastation, words seem so futile on top of news like that, i hope you all get the support and care that is fitting for your mam, and that she is kept comfortable, and you are supported also.
my thoughts and love are winging their way to you, we are all here for you,
love laura xxx

ali
Posts: 90
Joined: Sat Jun 25, 2011 9:22 am

Re: Come on Eileen (My Mam)

Postby ali » Tue Jun 19, 2012 8:36 pm

Hi Nicola
Sorry to read your update
Glad your mum not in too much pain
It is awful for her and your family but as devastated as you all are ,you will cope with what is ahead,it just happens as the choice is not yours.
Hope she is comfy and maybe back home or hospice and not in a General Hospital ward
Take care
thoughts are with you
Xx

Ella50
Posts: 57
Joined: Sat Jun 02, 2012 3:14 pm

Re: Come on Eileen (My Mam)

Postby Ella50 » Wed Jun 20, 2012 12:42 am

Hi Nicola..

Just wanted to say hi.. and to say how sorry I am to read about your mum..

Im quite new on here, and am so glad I found this amazing site, which seems so lovely and supportive.

This disease is devastating isnt it.

My mams pc has spread to the liver..
We have just had our first oncologist meeting, she couldnt be offered chemo as her liver damage is too bad..
She has been prescribed 2 weeks of steroids and then we have to go back and see him..
If the steroids dont help, what then.. its so scarey.

My thoughts are with you & your family,
Take care.. love Ella xx

NICOLA
Posts: 41
Joined: Tue Apr 10, 2012 10:09 pm

Re: Come on Eileen (My Mam)

Postby NICOLA » Mon Jul 02, 2012 9:25 pm

Just an update on my amazing mam, and for me to off load. So the same old story on here, she was doing so well on chemo, but after 5 sessions she was admitted to hospital she got so down and weak. Whilst in hospital they decided to do a scan, it showed the pc had grown a small amount and had spread to lungs/liver. We waited 2 weeks to see her oncologist and he told us what we were expecting, the chemo hasnt worked and there's nothing more they could do. Me and mum left the hospital not saying a word we got into my car and broke down into floods of tears.
I thought being told that your mum has cancer could be the worst possible news, but then you are told its spread, and then you are told there's nothing they can do.
Im so mad, why is this happening to my mam, the most loving person you could meet, she is going to be took away from her grandchildren too soon.
We managed to get our heads around the latest news and being off the chemo she picked right up, we planned to enjoy every day that she has left, we've had a great couple of weeks the last few weeks but the last couple of days she has been sick alot and the pain has got bad again, the doctor has been out and she's getting cyclozine injections for the sickness and morphine tables for the pain. I really fear that this may be the start of the end, but please god let it just be a bad couple of days. You get good days and bad days right ? :|

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Come on Eileen (My Mam)

Postby laura » Mon Jul 02, 2012 9:54 pm

oh nicola. so sorry to read your post, not having "heard" from you for a while, i was beggining to fear the worst!.
dont know what to say to you. life and this particular journey is so uncertain for all concerned, i guess what we cant change, we somehow have to try to accept [ easy for me , i know] i would hate for you to have regrets that you spend precious time, searching searching, for answers etc, when that time could be spent with your mam, loving and reassuring her if poss, i guess she must be feeling beside herself, not being able to "sort this one out", mums always think they are untouchable,
if you can try and get something from this time you have together, it doesnt make it any easier for you i know, but i guess there are people out there that would give anything to be able to say, and show their loved ones how much they mean to them, but they have people snatched away without any warning, i dont know which is easier to bear,
really thinking of you and hoping this is a blip, love to your mum and you
love laura xx

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: Come on Eileen (My Mam)

Postby francis » Sun Jul 08, 2012 11:00 am

Hi Nicola, I haven't been on here for a while, can't seem to look. I'm so sorry that the chemo isn't working, but I'm pleased to hear that youve had some quality time with her. I hope her bad couple of day's are over and she's stopped being sick and is comfortable. It's heart breaking not being able to do anything.
We are going in to see oncologist tomorrow, I'm dreading it! She has just finished 3 weeks of Gemcidabine with a week off. They only gave her 80% as I think the thought she was quite weak? I can't see that it's made any difference she seems to be getting weaker and more tired. She's also just finished another course of steroids. On a good note she still hasn't been sick since she has had the stent and is not in any pain. Take care Nicola Xxx

francis
Posts: 22
Joined: Wed Apr 11, 2012 9:19 pm

Re: Come on Eileen (My Mam)

Postby francis » Fri Jul 20, 2012 11:36 am

Hey Nicola how are you and your mam doing?? I just posted a brief update and saw that you hadn't posted for a while. I have been thinking about you and your mam and sending positive thoughts your way.xx