please help me

[jadco]

My lovely mum has been told she has 6mts. She is my best friend and I can't stop crying. I am taking sleeping tablets at night and anti-depressants during the day and I still can't cope. I am barely functioning. Everyone else seems to be coping with this news - or at least they are managing it but I can't stop crying. I feel helpless. I just want to have some peace of mind so I can face this with her and support her. Please help me, please

[Vanhalen]

Dear jadco

I wish I could help you. I don't know if it's any comfort or help, but I'm going through exactly the same thing as you. In fact, your words could have been written by me, although I havent gone down the medication road , yet.! It's surely got to be all about what you do with your mum in the time available.????

I know that's what I'm thinking of at the moment. Tomorrow we will find out how long we have to deal with these things.

Just enjoy being with your mum, your best friend, although I know it's difficult.

I'm no expert, obviously, but I don't think there are any.?

Take care of mum and you. !

R

[lynbo]

Dear Jadco

Although they have said 6 months, no one can be certain, it's not easy, I know, but try not to live on a 'time bomb' and positive thinking, your mum will be so upset to think you are upset, crazy I know, but the ones who are ill think of others before themselves.

I don't know what else to say other than, try to be strong, words are easy, actions hard, I know.

Keep in touch xx

[Ellie]

Hi

So sorry to read your message.

I know it's hard but try to take one day at a time and not think about the future. The doctors don't always get these things right. If it it helps to know this, my husband was given 6-12 months - in June 2008 and, although not well, he is still here! Everyone is different.

Like the other replies have said - just take the time to talk to your mum, tell her all the things you want and make the very most of every day you have together.

Try to stay strong.

Ellie

x

[jadco]

thank you so much for your words of support.

Vanhalen - i hope you get some positive news today.

Ellie - its great to hear about your husband. What treatment does he have?

My mum is having GemCap and is on a vacine trial - she started treatment yesterday.

She was operated on but didnt need a whipple - just part of her pancreaus and her spleen removed- she had chemo at the time but went into toxic shock so treatment hd to be reduced to 75%.

Now its in her liver and bowel and the docs are not offering any real hope - just trying to slow it.

Somedays I am strong - others I just fall apart and can barely breathe with the pain

[DRAD3]

My husband was diagnosed with pancreatic cancer and has just started the GEMCAP treatment. He is 46 years old and we have a 12 year old daughter. We are absolutely devastated and I, like you, had days when I could not stop crying. I try to focus on what needs to be done each day and not to think too far ahead. Tears come very easily and unexpectedly and when I read your message, I cried with you and my heart reached out to you. It is the most awful thing to have to face. Don't be hard on yourself if you feel you are not coping. There are no rules and everyone is different - those who appear to be coping will be hurting just as much, but will not show it in the same way. I cry - it is a release and I think it is good to sometimes just let go. I try (not always successfully) to hide my upset in front of my husband - he needs me to be strong. I think it would weaken his strength if he was having to worry about me - about me coping now and when he is gone. He needs to know I am and will be OK so he can focus on staying with us for as long as possible. Try and be strong for your Mum as she will also be worrying about you. It does not mean you have to hold in your feelings, letting your Mum know how devastated you are and how much this hurts because you love her so much cannot hurt her but see if you can muster your inner strength so that you can show her that you will help her through this, that she isn't alone and that she does not have to worry about anything but fighting this horrible disease.

This is the first time I have posted a message but I feel your pain and am crying now - be strong - you are not alone either.

With love.

[jadco]

Thank you so much DRAD3 - i feel privileged that you found the strength to reply to me. I have contacted my doc today and he has been very sympathetic ...I know that i need to be strong for her - my god - she is amazing how she is coping and you are right - i don't want her to worry about how i will cope when she is gone. I love her too much to put that burden on her. So, I will try to 'restrict' my sobbing so as not to upset her. You are doing a wonderful job - i can't even express how much i wish i could hug you. I hope you have some support as you are having to support both your husband and your little daughter. I hope your husband is feeling well today.

Thank you with all of my heart x

[lynbo]

Hi drad3, jadco, Ellie,

All of you, a big hug, I didn't come on here when my husband was poorly, well at all , only when he passed away.

My best friend did though, and she said that, even though we were dealt this awful disease she truly believed my husband would get better, because of our determination, so, like what's been said, everyone is different, so positive thoughts all the way. Love a lot, and no regrets.

My husband was actually cycling to work and doing a 10 hour manual job when he was diagnosed! He felt ill, but not enough to stay off work, which shows his positive attitude was the key.

Prayers for everyone on here

Xxxxxx

[DRAD3]

Dear all

I always feel like I am held in a big hug each time I visit this site and I hope you all feel it too. What a wonderful way we can support each other through these awful days. My husband is on week four of his first cycle and is enjoying his short respite from the "medication". What a difference! I came home on Sunday morning, having took my daughter to her ice skating lesson, to find him in the kitchen, cooking tea (for mother's day), with music blasting and actually dancing! I almost cried (again) - it was a wonderful sight. He is full of beans again today and we have just been out for some lunch together (although he didn't enjoy his because his tastebuds are not his own anymore!) - precious moments - I wish I could freeze time. We were both both so depressed last week, him feeling so tired and poorly and fed up and me feeling sorry for myself and generally angry at the world (why me, why him, why?!) Today I feel happy and crying out of gratitude for a good day. What a rollercoaster we are on. Love to you all and enjoy your wonderful moments. Freeze them in your mind because they are the memories that will get us through the dark days.

xx

[lawalsh]

Dear DRAD3,

My heart goes out to you...reading your words, was just like me 5 weeks ago when I heard the news about my dad. I have been on the worst emotional rollercoaster of my life, and I have cried a river, I really have, it's just the shock and my heart aches, IT ACHES, physical pain and heart ache that I know medication can't cure. It's a pain that I hope will fade.

The reason this forum is so successful is that you think you're alone on 'an island of pain and sheer heartache', then someone sends you a message and you're not alone. Get it all off your chest here, it's good that you do, because then you can build your strength for the practical part of all of what you're going to come into contact next.

But listen, this I think is the 'shock' stage for you, and lets face it, your husband is very young, same age as me, and I feel 18!! They always tell you the worst case scenario, but, and this is a big 'BUT', the doctors don't know, we don't know how long we've got, do we? You're a mum and I'm right with you there, me too, and you're looking and thinking of your kids, but strength does come. I don't know where or why, nor where from, but it does, and you soldier on and investigate, explore/rationalise every alternative, complementary, dietary avenue.

I will tell you now, I have fallen apart 'big time', but, my dad is at terms with it all, and he is great!! I have got to know more of my dad in the last 5 weeks than in 46 years. I've said all I have wanted to say, made practical lists with him of things he wants to carry on...... (daft things like the garden plants, my mum eating healthily when she's only cooking for one, ...sounds bonkers....but I do get where he is coming from) and for us all to enjoy the time we have with him.

Really, what I want to say to you, is take one day at a time. We have had 3 friends that we have lost in the past 6 months, actually with no warning, no illness, no time for goodbye, all under 40 (one was actually a child) due to random events.

Doctors are'nt always right with prognosis, and things/people do surprise you, most usually the patient, they are the strongest!!! I've met people with PC, given less than a year, lived far, far, far longer. Be brave, be strong, love your husband, your marriage (and forget every squabble-just not worth it!!!!), when you've got yourself together, we're all here waiting, we're listening, we're hurting too, but we're united in fighting for a way forward.

A big hug to you, God Bless xxx

[Ellie]

To Lesley Ann - Glad to see you back on the forum. Posted a message under a different thread to you.

To Vanhalen - hope news was good for you recently. Let us know how things are going.

To drad3 - Good that you decided to post on here & glad to hear your husband was so bright the other day!

To jadco - how are things with you?

So many people with loved ones in so many different stages of this awful illness, but all united in supporting each other and helping to cope with the shock and grief.

Just to say I am thinking of you all and wishing you all strength to fight, strength to be positive and strength to make the most of each and every day with your families.

Best wishes

Ellie

xx

[lawalsh]

I wrote a reply to you in a draft late last night, and then one to Drad who's husband has PC, I have just looked and my post to you isn't there, but my message to Drad is, which I find strange, but anyway, I will take it from the draft, cut and paste it again, sadly the chronology won't be in order, but anyway, here's what I wrote.....

Dear Jadco,

I am so sorry to hear about your mum, and the prognosis she has been given, heartbreaking since as you say, she's your best friend as well as your mum. Six months is so short and you must be devastated, I was given that news too only 3 weeks ago and have cried and cried and cried. However, this last 10 days I was away and had time to think. I've read lots of books in that time, or parts of books that were relevant, and her time could be longer than six months, the doctors don't know, not really. There are some very surprising stories on here, and on the US forum of the equivalent of this site, the US forum has a tab called 'success stories', some are amazing, and almost all the patients have thrived due to sheer determination. It's hard to remain positive when you have been given such awful news, but a few weeks on, I've found strength, surprisingly mainly from my dad. He has astounded us all, he is determined to live as long as possible, he wants to be like Ted on here, Nicki's husband, who is still living two years after diagnosis, with a similar prognosis, I think. Ted sounds to have fought all the way, and I do think that must be a massive contributing factor.

From now, it's one day at a time, baby steps, learning about what's on offer, looking at complementary therapies too, I think they help. We have given my dad all sorts of positive thinking books to read, and he is so uplifted by them, he is very very positive, and that is helping my mum, and all of us.

Bye for now, we're all here, it's a long hard journey and we're all at different stages of it, but we're all here to support each other, cry your heart out here, tell us how you feel, and keep your strength for your mum.

Sending you a big hug,

Lesley Ann xxx

[Charlotte]

Hi jadco,

I'm in a similar situation to you - my Mum was diagnosed with advanced pancreatic cancer at the beginning of March, and she's also on the Telovac trial. I just wanted to share something that I've found really helpful, in case it could work for you too (or anyone else on here for that matter) - of course, different things work for different people.

When Mum was first diagnosed, I started to email a group of her family and friends with updates as to how she was doing. Lots of people wanted to know how she was, and this seemed to be the easiest way to keep them all posted. More and more people have asked to join the email list, and I now send out a message to 'the fanclub' every one or two weeks. People often write back really lovely replies - sometimes talking about how much my Mum means to them, sometimes just sending news of their day-to-day lives or photos of their kids and grandchildren, always sending lots of love and support. I read the messages out to Mum and I think it really helps her to know that so many people are wishing her well. It helps me too - sometimes I get upset when I read the replies (though I try to hide it from Mum), but mostly it's a comfort to know that all those people all over the world (Mum is from Uruguay) are thinking of her and sending her positive thoughts. It also feels good to be doing something nice for her. And I've been totally humbled by how many people care so deeply.

How is your Mum doing these days?

Charlotte x

[jadco]

Thank you to everyone who has taken the time to reply...you are all amazing. On the whole mum is well, still mobiel, active, cooking and eating which is brilliant. She has had a couple of blips with treatment - a severe rash that led to an overnight stay in hospital and some swelling in her feel and legs. She had a scan this week to see if the chemo is having any effect on slowing the growth and the results are due on Monday .... just keeping everything crossed.

The early days of diagnosis were terrifying but for the most part I have been able to gather myself and manage better - I know that the strength i have is due entirely to the loving care I have had invested in me from my mum every day of my life.

Mum is on the Tolvac study and is due to receive the vaccines next week - I hope and pray that the side effects of flu symptoms are minimal and her final journey...no matter its length...is comfortable and punctuated with fun and laughter

[millyjo]

Dear Jadco,

Sorry to here about your mum.

It is such devastating news to here that someone so precious has been given a limited time to live.

I know I went into shock when told my mum had 2 months, it was unbelievable. Funny thing was though, I cried very little and just carried on caring for her almost like remote control. It is only now even after almost two years since she died, that I weep. I do believe that had I had cried during the horror that is this disease, whilst mum was suffering, I might not be suffering quite so much now.

Everyone is different I suppose.

I'm pleased to here that your mum is on a trial, fingers crossed that there is a positive outcome, there has to be a miracle one day hasn't there.

This forum is so supportive and informative, and there are so many lovely people out there.

Keep as strong as you can, look after yourself too.

Thinking of you and your mum.

Millyjo x

[Charlotte]

Hi jadco,

My Mum suffered a lot with swelling in her legs too - my brother got married on Saturday and at one point she was worried she wasn't going to be able to get any shoes on for the wedding, which was really upsetting her. It also made her legs and feet really tender and uncomfortable. Jeni suggested we ask the nurses if she could be prescribed a mild diuretic and it worked a treat - her legs are totally back to normal again.

Good luck for the results today, and for your Mum starting on the vaccine treatment, we'll be thinking of you.

Charlotte x

[jadco]

Mums scan results were amazing. She was only able to tolerate 4 out of 6 sessions (2 were cancelled as her bloods were too low) and despite this the chemo has managed to reduce the liver tumor by half and the bowel tumor has also reduced. Wonder Woman !!!! She has now finished the Chemo and is beginning the Telovac trial. I will keep you posted on how that goes. We got her support tights (very attractive) which have really helped with the swelling.

Thank you again for all the support and the replies.

[PCUK Nurse Jeni]

Fantastic to have some good news!

Well done to your mum.

Jeni.