Come on Eileen (My Mam) Died 11.08.12

[ali]

Hi Nicola

be strong for your mum

this is surely a Horrific Illness

Do hope she is comfortable

thinking of you

Helen xxx

[laura]

hello nicola. am so sorry about your news, words seem so futile, when your wanting action!

im sure they are not giving up on your mum, sometimes it has to be kinder to look at quality of life over quantity, chemo is so poisionous in itself and can have unpleasant side effects for your mum, dont give up love, live and love your mum each day you have her. we all take so much for granted, i really wish you both strength and peace, thinking of you, love laura xx

[NICOLA]

Thanks Everyone, will let you know what happens on Wed, im going to push for Chemo as its really helped mam, she didnt have any side effects just tiredness. Been to see her today and she's really down, crying alot. xxx

[rachelqt]

Hi Nicola, im really sorry to read about your mum. This is a tough time for you all even more so when your mum is feeling so down. I really hope wednesday will be more positive for your mum, as the treatment was not to harsh on her you never know they might be willing to give it another go! Let us know how she gets on.

Takecare Rachel xx

[NICOLA]

Hi All, just come on for a rant it always helps, so my mam's been told her pc has spread a small amount, we were expecting to have a meeting with her oncologist today to discuss wheather of not to proceed with chemo (due for a treatment today), got a phone call this morning dont bother going for treatment until you have seen the oncologist, his next available appointment is 2 weeks time !!! To add to my fury Ive just leaned of a drug call Creon which she probably should have been taking !!! Rant over :-/

[ali]

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]

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]

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]

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]

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/information-and-support/living-with-pancreatic-cancer/living-with-pancreatic-cancer-faqs/what-is-creon

Best wishes,

Anna

[francis]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[NICOLA]

Hi Everyone and Hi Francis, we have had good days and bad days with my mam, she's mostly in bed now and very weak, she was put on a tablet form of morphine yesterday as the oromorph wasnt doing its job, she's also had her steriods upped to 4per day. I still cant believe this is happening to my mam, sometimes i'll be busy doing somthing and i'll forget then it hits me.

If only she could put some weight on, she's eating ok but just keeps loosing weight, she has lost 3 stone and is now down to 7.5st, she showed me the other day her legs and bottom and it broke my heart how thin she is. I think thats why she is so weak because of the weight loss. People keep asking how Im doing and I tell them I cant belive Ive hardly cried I feel strangley calm about it all, I think Im the type of person who always looks on the bright side and after reading some of the stories on here and how quickly people have lost their loved ones, Im so greatful that we have got time with mam and time to prepare. I just pray to god its a peaceful ending and she has no pain. Thanks for listening. Nicola

[Ella50]

Hi Nicola,

Just like to say my heart goes out to you hun..

Surreal isnt it!?

It must bring comfort to your mother knowing your there for her and doing your best..

Its great to hear that your mam is still eating.. maybe with the extra steroids they will help with her appetite?! I thought steroids done nothing for my mam.. didnt know about the side effects at the time- They did cause thrush in my mams mouth, so made it sore to eat.. I learned that side effect from Jeni on here.. just felt like we kept hitting a brick wall as taking one thing affects another and then another... Keep enquiring..

As with the morphine tablets, I hope you do see a big improvement when her pain is managed better.

My mam had good and bad days also, it seems to be part of the illness and I found things changed so quickly- not sure if you read my post.

Take comfort in, as you said, that we are given the chance to talk and prepare which is priceless- as not many people get that opportunity.

Its great your so positive, your doing so well. Just embrace everything about her and I really do hope you have many good days to come..

The quickness of it all with my mam still amazes me.. but remember everyone walks this journey at different paces..

Still cant beleve my mams funeral was already a week ago today.

Look after yourself.. Keep posting and keep strong.. Love Ella xx

[NICOLA]

Mam's took another turn for the worst over the last few days, she's developed serious thrush in her mouth and has a chest infection she's so ill she can hardly talk. She's been given a mouth gel and a stronger course of anti biotics, the doctor came out today and said it wont be long now, perhaps weeks. Hope the anti biotics work, lots of tears and prayers tonight xxxx

[laura]

hello nicola, so sorry to read your post, your going to need all your reserves to cope with the future aren't you? lets hope that your dear mam is kept comfortable and pain free, and i hope you get plenty of support, sending you my good wishes and lots of strength, love laura xx

[PCUK Nurse Jeni]

Hi Nicola,

Very sorry to hear about your mum.

I hope that the medication works and that the thrush clears up in her mouth, as this can be very uncomfortable.

Hopefully, her pain relief is being closely monitored to make sure it is effective.

Kind regards,

Jeni.