Come on Eileen (My Mam) Died 11.08.12

[NICOLA]

This is a lovely and very helpful site I stumbled across whilst trying to find more info on my mam's pc. I would just like to share our story with everyone. My mam was taken into hospital (on her birthday Feb 3rd, she is 68yrs young) with jaundice and abdo pain, after many tests, ultrasound blood tests and after nearly 2 wks a CT scan she was told on Feb 14th (happy valentines day) that she has pc. Devastated doesnt cover what we all felt we have cried rivers. Anyway the docs explained that a stent needed to be fitted to open up the blockage and get rid of the jaundice, after this my mam really seemed to quickly loose weight and was in more pain, the docs had a meeting and we were told they couldnt operate, too dangerous, now we are waiting for her to start chemo Gem something, but when she asked does it look good for her the Oncologist said No there is only a 20% chance of the chemo working. Im lucky that my mam has my dad and brother living with her and I just live 15min drive so she has great support and we are making her stay possitive and convincing her that she will be one of the 20% if not the next stage is radiotherapy but hopfully it doesnt come to that. xx Stay strong xx

Edited August 11, 2012 by NICOLA

[ali]

Hi

sorry to read about your news and it is really scarey

If you post here, you will get lots of support and advice

One thing--keep asking the hospital doctors "what is happening and their plans" for your mum--as symptoms change rapidly and so do there planned procedures.

Sorry but this is an awful disease to treat as usually well established before diagnosed---sorry to be so truthful-but i found this out last year (with my own mum )and i imagine you would want the realistic truth--unfortunately not always given this information by hospital staff

Hope things go to plan and your mum gets her chemo

Take care

Helen

xx

[laura]

hi nicola, welcome to your other family, sad circumstance i know, but hopefully you will find us useful and suportive!

awful shock, the diagnosis, isnt it? but that bits over now, and you can start focusing on getting the best care and attention you can for your mum.

now you have an ocology team, you should also have a specialist nurse who will be with you for the duration, she should be able to answer any questions, offer help and generally be your link to the specialist,

if you can get a macmillan nurse to come and see you, they are sooooo helpful, or thats what we have found, with pain control, changing meds, and are there for the family,not just your mum, which area are you nicola?

my hubby brian, was diagnosed feb 2010, operation was unsuccessful, has had 19 months of chemo Gemcap, is that what your mums been offered, as chemo goes this one is gentler, bri certainly tolerated it well. dont jump to far ahead, enjoy the now, NOBODY knows when, how long etc , that applies to all of us, life will change, just a differant life, be positive, so important, if i can be of any more use please write, chin up all the best

laura x [bri is 63 and we were told 6 months ish!]

[ali]

hi laura

thanks for re-enforcing my views on obtaining "information and questioning everything " re. treatment plan etc.

xx

[louiepc]

Hi Nicola,

Welcome to the site, I am sure you will find out lots of information and useful tips to help not only mum, but the whole family.

It is terrible when being told this devastating news, I don't know about you, although seeing as you are on here I'm sure you have already done so, but when I was told, the first thing I did was google everything and anything on PC.

Yes the outlook isn't too great, but for some, fortunate people, the outlook is better than hoped for. I know it's easy to say, but try and keep positive. Your mum is going to have chemo - great, and if that doesn't work she is being offered radiotherapy. Fantastic. My mum didn't get offered radio.

Things will change as I am sure you have already found, rather rapidly. What used to be normal, goes out the window. It's just a different form of normality. Life takes a different turn, and it really brings things into perspective, you suddenly hear conversations that once may have made you mad, you brush them off, they are no longer important, your mum, will be the most important thing in your life.

I know when my mum was diagnosed, I was, like you was absolutely terrified beyond belief, but I did also find myself, taking a step back and looking at the bigger picture, so to speak. I took everytime I was with mum, or spoke to mum as precious moments, and that is also what I told my kids to do. With wonderful memories, it becomes bearable, and no-one can ever take those memories away from you.

Make sure that your mum is on good pain relief, creon (helps with digestion of food), food supplements, and like Laura said, if you have Mcmillan in your area (we have Ellenor Lions) get them on board, they are brilliant, have great tips on lots of areas of pc. Our local ellenor Lions hospice, does brilliant alternative therapies, reflexology, massage, things like that. Unfortunately we didn't know until it was too late, but mum loved her pampering, but didn't want to go to a normal beauty salon, looking so poorly.

Take care, and use this site as much as you need.

Louie xxx

[lynbo]

Hi Nicola

I think we may live quite close? I read your post and felt deflated for you, this site is a great source of support and info, let us know what's happening with you, and if you want to get in touch, I'd swap emails with you through Jeni, puck moderator xxxx

[laura]

hi there helen, how are you?! we must have been typing at the same time, cos i couldnt get my post to register at first, so we were thinking/typing the same thoughts at the same time, the things we learn over time eh? hope your doing ok, love laura x

[rachelqt]

Hi Nicola,

Sorry to hear about your mum. It is such a shock to the system when first diagnosed. It is very painful but as time goes by you seem to learn/adapt to live with it a little better.

I think that with you all staying so positive for for Mum is wonderful and really helps with the road in front of you. There is more often very sad experiences on this forum but there is a some that are positive too. It just goes to show how individual PC is for everyone.

My Dad (61) was diagnosed with inoperable PC with a prognosis of 6-12 months in Sept 11. He went dramatically downhill with jaundice, 3 stone weight lost and no energy. At one stage we were called for by the hospital and told he would not see the week in. Now 8 months down the line he has astounded us as to how well he is doing! He has had 4 months of Gemcitabine and now 2 months of a break from chemo. He has almost put the 3 stone back on and goes walking everyday! Although he has been blessed as he has suffered no pain after his Jaundice cleared up. First scan will be soon to see how well his treatment has worked for him. We are all feeling nervous as we know how sneaky this disease is!

This forum is a great place for support and advise. I wish your mum all the very best with her treatment and as you say 'Stay Strong'!

Love Rachel xx

[NICOLA]

Just got in from work 1st dayback after Easter and all I could think of was my mam, she's going to die, she's going to die, im not going to see her again, you'll be busy doing somthing and you forget then it just hits you again. So I came on here to see if any messages and you lot have cheered me right up.

Helen Ali, Im always pestering the docs/nurses and asking lots of questions, your right the awful truth was never given at first which Im sort of glad in a way I think its best for my mam just finding out bit by bit Thanks for your message x

Laura, Im in Tyne & Wear. Yes my mam has been offered Gemcap to be administered at home which she's over the moon about no having to be in hospital all day, tho oncologist said its one of the not too bad chemos and she shouldnt loose her hair, I hope you keep posting about your Brian I would like to follow his story, Thanks for your message x

Louie,Your right I have started giving my mam a kiss/hug everytime I say goodbye to her which I never used to, I too think every moment with mam is precious although I havent told my kids yet they are 8 + 5 so I think I will talk to my hubby on that one. I will also enquire about mccmillan and alternative therapies/pampering although I know she wont go near a hospice.

Rachel wow your story has really cheered my up, most of the stuff ive googled and stories Ive read are bad and it all happens so quick, your dad gives us hope I will follow his progress, Thanks again xx

Thank you to you all is nice to be able to talk to ppl going through the same nightmare x

Nicolax

[louiepc]

Hi Nicola,

I'm glad we have all managed to cheer you up.

It is awful, it hits you like a tonne of bricks, I can completely understand where you are coming from, days of the complete disbelief, and then thinking will Mum be here for such and such. Please try and not think too long term. Everyone is different with PC, Laura's Bri has been diagnosed for 2 years, Rachel's dad has done brilliantly. There are people on here who have really positive experiences.

Take care,

louie xx

[ali]

Hi Laura/Louie

I am doing ok

Reading Louie s post just to me and now yours to me,really means a lot and brings happy tears--thank you both and also hope you are both doing ok. X

Nicola Hope things going ok and your mum is comfortable. X

[Nardobd]

Hi Nicola

Just adding my voice of support to the others. I hope your Mam responds to chemo well.

Nicki

[NICOLA]

Hi Everyone

Just an update on my little mam "Eileen" she's had 3 lots of Chemo now, the first one was pretty bad and she was in a lot of pain, we got her some stronger pain killers just incase for the 2nd week, oromorp I think it's called. Her 2nd treatment was much better, she wasnt in any pain and hasnt been having any pain since.

She usually has her chemo at home but for the 3rd week the nurse couldnt get a vein (apparently the chemo is affecting her viens) so I had to take her to the chemo centre at the hospital yesterday (what a lovley up beat place, I was expecting doom and gloom) the nurse managed to get a vein and she was given her treatment. There was talk of fitting a hickman Central line if they can find a vein the next few times.

My mam seems to slowly be responding to the Chemo (fingers and everything else I can cross are crossed)

Ive found the biggest help for me is when ppl ask hows your mam? and I can tell them whats going on, some ppl I know are scared to ask.

Thanks for listening

Nicolax

[rachelqt]

Hi Nicola,

Glad things seem to be more positive for your Mam. Delighted that her pain has eased! My Dad also had alot of trouble with the veins for chemo, they ended up having to use an ultrasound machine on his arm to help find a vein for every treatment. This worked really well! Might be worth asking about for your Mam.

Takecare Rachel x

[NICOLA]

Thanks Rachel, they never mentioned this, i will bear in mind x

Nicola

[francis]

I Nicola I'm so pleased that things are going well for your mam. My mothers name is also Eileen and she's 68. They have had trouble finding her veins because she was dehydrated. Hopefully she will be starting chemo soon! X

[NICOLA]

Thanks Francis, again she's had to miss another treatment (postponed to tues), they have said its probably because she's dehydrated so gonna get her to drink more.

[francis]

Hey Nicola, how are you and your mam? My mam is supposed to be having chemo on wednesday so lets keep everything crossed for them, yours for tuesday and mine for wednesday! Thanks to Louie Ive been giving my mam a kiss when I leave her too. Thank you Louie x

Well my mam is getting very tired and weak so wednesday cant come quick enough. Stay strong Nicola I'll be thinking of you both! X

[NICOLA]

Update....Had to take mam into hospital today, everything was going so well with her treatment 5 weeks into it now. But the last couple of days she has gone down hill, they are keeping her in giving her fluids any antibiotics. She's so weak...

Hopfully she'll pick up when the antibiotics kick in, then the plan is to give her a mild steriod to help her start eating again....awful to think of my little mam in hospital especially on a night but I know she's in the right place.

[laura]

hi nicola,, sorry to read your news about mum, you must feel so anxious, its not "being there" thats the rotten part isnt it?

hopefully she will soon respond to treatment and be back home with you, hospitals got to be the best place for her whilst shes unwell, keep your chin up, let us know how she goes on. love laura x

[NICOLA]

Mam got told yesterday the cancer has got bigger and has spread.

Ive got a meeting with the doc/consultant at 4pm today to discuss how bad.

There is talk of discontinuing the chemo even though she's only had 5 weeks worth !!!

Feels like everyone is giving up.

Had a call from cancer care nurse today and she pretty much said its time to accept the worst.

[suef]

Dear Nicola,

I am so sorry to hear such bad news. But don't give up hope yet. Let us know what the doctor says at 4pm. We are here for you.

Be strong!

Love,

SueF

[louiepc]

Dear nicola, I'm sorry to hear about your mum. I hope your meeting gave you some answers and hope. I was in exactly the same boat and know how frightening this news is.

Take care, lots of love louie x

[NICOLA]

Consultant said it has grown a small amount on pancreas, small spots on liver and not sure about lungs. He said its bad, have to wait to see the oncologist on wed and he will decide if we should continue with chemo. Im hoping he agrees to continue as she has only had 5 treatments and they were interupted.

[suef]

Dear Nicola, I am so sorry. Now you have to wait till Wednesday, very hard over the bank holiday with people in a festive mood. Do take care of yourself, as well as looking after your mother. I wish you much strength xx