Ascites

[PCUK Nurse Jeni]

Hi V,

Not to intrude on the wonderful support from the forum members, but would just like to say our thoughts are with you, and that you are clearly doing such a wonderful job at caring for Nige. Also telling your daughter - never easy, but as Marmalade says, from the heart.

You are in our thoughts, as is everyone affected in any way by pancreatic cancer.

It is good to hear that Nige is settled in the bed and that the pain is being treated with the morphine. You are incredibly strong.

Lovely to see all the support from so many forum members - invaluable.

Kind regards,

Jeni,

On behalf of the nursing team at Pancreatic Cancer UK.

[Dandygal76]

Hi Veema

I hope you have a more settled night tonight and I am glad that Nige is feeling more comfy in his bed. You are not failing him because you cannot get him to eat, it is the natural path he is taking and we have seen many times that as they get more poorly they eat less and less and there is nothing you can do about that. Also, we have seen with our friends on this journey that it just gets too stressful on the eating front for both of you and it is more important nige is comfy and that you reduce both your stress now and try and have quality time together. It is nice that you have family around to comfort you all.

I am sorry about your friend getting breast cancer and I hope she has a fighting chance with it. I can understand why she did not want to tell you with everything going on. Of course your thoughts are with her but hopefully you will have many years together as friends and you will have plenty of time to be a support to her.

I am sure a bit of disorganisation and the odd 2nd day shirt will not be scorned upon, I can't even believe you are managing to iron around everything. You are so strong. I am in awe of all of you who I have witnessed go through the end stage of this horrible disease. I still can't imagine it and I know for a fact if it happens to dad I will not have such composure.

We are here for you lovely.

Much Love

xx

Edited September 22, 2016 by Dandygal76

[Justamo]

Hope things are OK with you tonight V. Thinking of you, and praying that all is calm and peaceful.

I read once that kids don't remember if their pyjamas are ironed, but they do remember if you told them a bedtime story . . .

Love

Mo

[Veema]

Yes...she's 10 and I still read her a bedtime story.

[Proud Wife]

Hi Veema

Just to say hello and thinking of you all. Hope Nige is comfortable. Stay strong sweetheart xx

[Guest]

Hi V,

Just got home from seeing my sister and popped on here to see how you and Nige were. It doesn't seem enough I know but we are here in the wings willing things to be peaceful and easy for you all.

Don't worry about the food or anything else, the time for fretting and coercing has run its course and now is all about doing things that give you all pleasure and or comfort whatever that is. No one knows better than I how hard it is to stop trying but PW is right, let it all go now, don't measure time or dates any more than you need to and do whatever Nige wants, then there will be no regrets.

I wish you all a pleasant evening and a restful night. Big hugs, M xx

[Veema]

He's gone.

We had an awful night last night, he was vomiting and had diarrhoea and I sat up with him all night. At 5am this morning, he wanted to get in the bath, so he had a lovely bath and I let the water out for him and then he couldn't get out of the bath...he just kept collapsing in a heap...I phoned the out of hours district nurses, who were useless and didn't seem like they could help, in the end I managed to get him onto the side of the bath and my dad came and helped me carry him into the bedroom...by this point he wasn't breathing and semi concious, so I rang for the ambulance, who took an age to come. The fast response paramedic came and he was useless too...Nige came round a bit and said he needed the toilet, but the paramedic wasn't for letting us move him...he was crying out for the toilet and so me and my Dad carried him back into the bathroom, trailing poo as we went...poor, poor Nige...we managed to get him onto the loo, but he lost conciousness again. The ambulance then arrived and the two paramedics were fab...they got a line in, fluids in and got his blood pressure back up enough to get him into the ambulance...all the while, Phoebe is witnessing this...she was so brave and so helpful, ringing her brothers and getting them to come and keep us all updated on what was going on.

Anyway, we got him to the hospital, he was very confused and restless all morning. The lads had just gone to get a drink when all his statistics started dropping. I got them back in time and we all just sat there with him whilst he breathed his last few breaths and finally left us at 3.23pm. Bizarrely, Phoebe was born at 3.23 in the morning.

I cannot believe how quickly it has all been at the end. I'm pleased in a way that he didn't linger on, because he was suffering and uncomfortable. I have lost my best friend, my lover, my rock...I will miss him forever.

Vx

[sandraW]

Oh V, I am so so sorry to hear that you have lost your beloved Nige, and how truly traumatic it must have been for you all. Its all much worse in the night getting the help you need, but at least as you say he didn't linger and you were all with him when he left you.

You must be in total shock, all I can do is let you know I am thinking of you all, send you a massive cyber ((HUG)) and wish you love and strength, thinking of Phoebe too bless her, take care love sandrax xx

[Proud Wife]

Dearest V

I am so terribly sorry to hear your devastating news. Your last paragraph sums it all up. What a brave and wonderful daughter Nige has left you with, it must have been so frightening for her. You are all far too young for this to have happened and I am so very sad that yet another family has been left bereft. As you say, he did not linger which I truly believe is the kindest way. I take comfort in the fact that hubby went within 8 days - Nige was just as fast. Right now your emotions must be all over the place and you probably don't know which was is up but I hope, in time, the speed will bring you a little bit of comfort too.

I am sending you, Phoebe and the lads all my love and wishing you strength for the coming weeks. Always remember, we are here for you whenever you need us. You will all be in my prayers tonight, may Nige rest peacefully. xxx

[Guest]

Darling V,

I am so very sorry that your lovely man has gone and I am weeping for your loss. You did a grand job and tried your very best to do what he wanted not what others told you to do. What a star you have in Phoebe, its an awful thing to witness the frailty of life but you did it together and what's a bit of poo in the great scheme of life, only what happens when we are born. That closeness can never be taken away from either of you and will be a very strong bond. I am pleased that his end was more peaceful, his labours done. Death like birth is a labour, its reward is an end to pain, fear and indignity.

Phoebe will never be without him because he is in her genes and is part of her. A little bit of him lives on, his legacy.

I will pray and grieve with you and your family as you have done for me. All the wonderful people on here are wrapping their love around you and holding you. You may not see us be we are here, will always be here keeping our vigil. Nige is at rest now and your task for him is done so you can rest awhile too. There will be time enough for all the emotions, no need to hurry them.

Peace be with you this night V, and may beautiful angels watch over you all xxx

[WifeampMum]

Dear V

Sending my love and sincere condolences at this heartbreaking time.

I have been following your thread and your love and devotion to Nige shone through. You couldn't have done any more.

I wish you strength and will be thinking of you and Phoebe.

W&M xx

[Justamo]

Oh Veema, I'm so very sorry for your loss. Nobody could have tried harder than you to make Nige happy and comfortable. Poor Phoebe too; and the boys. The ritual of the funeral will help you cope for the first few days and of course we are all here as well.

It seems to me that there are no strangers or newbies on this forum, just friends you haven't met yet.

Take care of yourself and your lovely daughter.

God bless

Mo

[Dandygal76]

Oh my Veema, I have just come on here and read this. I am so sorry that your lovely Nige is gone and my heart goes out to you, Phoebe, the boys and all of your family. What a shock for you all that it happened so quickly, I woke up expecting the same themes of the week on here when I logged on but our friends are right, we have seen some awful stories on here and Nige did it exactly the right way if anyone could say that of this vile disease.

Marmalade is right that you have each other and this will bring you closer and you are strong and will steer your family through these trepid waters, We are here for you always and you did everything you could, don't ever doubt that.

There are no words I can say beyond what has already been said.

So much love to you all. xxx

[Veema]

He really was lovely, totally spoiled me, looked after us and was generally just the nicest man. He was so full of life, even after he was diagnosed and it was only these past couple of weeks that he started to slow down. Everyone is in shock that it happened so fast...he wasn't ready, he'd started writing things in a little red book, but it wasn't finished, passwords and usernames for emails etc. I know he'd wanted to write letters to the children, but he never got round to doing that either.

I've no idea what the process is now...I rang some random undertaker yesterday...the photos of them on their website made them look like something from the Adamms Family, which we all had a good laugh about, but the lady was lovely when I spoke to her on the phone. I need to speak to the vicar today...I'm not over keen on him (he wouldn't baptise Phoebe unless we did 7 weeks of bible study classes despite her being at risk of sudden cardiac death with her heart condition), but I want the comfort of a religious ceremony despite being really bloody angry with God right now...we're not particularly God fearing, but we did go to church and enjoyed it.

Our house always felt cramped, never enough space, but now it feels huge and empty...I'm sat here in bed looking out onto the landing and thinking about Phoebe and me rolling about in good sized 4 bed house, but I can't move. We need to stay here for her, for now at least.

Nige has a sister, who was there with us when he died yesterday...I'm going to have to be gentle but firm with her...she lost her husband suddenly a couple of years ago and is now trying to 'advise' me on what I should do. I know she's only trying to help, but I want to do this my way with Phoebe's and the boy's (Jamie and Ashley) input and no one else's. She's coming over again today, but all I really want is my mum and a bit of time for me and Phoebe on our own.

Going to write a list today...there seems to be so much to do and it's a bit overwhelming...one thing at a time...but there's still loads of people I need to tell. I also want any donations to go to the chemo unit we went to...they were fantastic, but I don't know if you can make donations to a specific hospital department or not...I'll have to ring them too.

I'm rambling now...sorry...but it feels good to get it out.

Very appreciative of all the love and good wishes.

Vx

[sandraW]

V, Good to hear from you, you are right to do it your way, now is not the time to takes other peoples wishes into consideration, just you the boys and Phoebe should decide what to do.

Nige sounds just like my Trevor, they were not going to die, so why did they need to worry about sorting things out there was plenty of time to do that in their minds. We are all different some want to plan everything others like them don't/ can't face the thought of leaving us.

Trevor's story was similar to Nige's in many ways, he to had surgery, chemo, then the cancer came back and he like Nige was functioning well until a couple of weeks before his death, he had about 20 months from diagnosis, I think we were one of the lucky ones.

All the planning is overwhelming, but you will get through it, because you are doing it for Nige.

I'm sure you will make the time for you and Phoebe, just to be together. I can't imagine how she must be feeling, she still has you, her brothers and grandparents, but her world must be very badly shaken, its the sort of nightmare that no child should have to face, life is so cruel.

Please remember to take care of yourself too, love sandrax xx

[sandraW]

V, Good to hear from you, you are right to do it your way, now is not the time to takes other peoples wishes into consideration, just you the boys and Phoebe should decide what to do.

Nige sounds just like my Trevor, they were not going to die, so why did they need to worry about sorting things out there was plenty of time to do that in their minds. We are all different some want to plan everything others like them don't/ can't face the thought of leaving us.

Trevor's story was similar to Nige's in many ways, he to had surgery, chemo, then the cancer came back and he like Nige was functioning well until a couple of weeks before his death, he had about 20 months from diagnosis, I think we were one of the lucky ones.

All the planning is overwhelming, but you will get through it, because you are doing it for Nige.

I'm sure you will make the time for you and Phoebe, just to be together. I can't imagine how she must be feeling, she still has you, her brothers and grandparents, but her world must be very badly shaken, its the sort of nightmare that no child should have to face, life is so cruel.

Please remember to take care of yourself too, love sandrax xx

[jay]

I am so sorry Veema , sending you a massive hug.

love Jayne

x

[Proud Wife]

You are not rambling at all V, I'm only pleased it feels good to let it out. I think you should gently tell your sister in law today that you need to do it your way and if you want advice, you'll ask for it, as these situations can often quickly escalate and you just don't need that.

Don't even think about a house move now. I did quickly afterwards and lived to regret it because I just couldn't think straight. My mum waited a year after my dad died before downsizing and then she was able to make the right decision. You have far too much going at the moment, just concentrate on the here and now, do what needs to be done for Nige's final send off and go at a speed that feels right for you.

And as Sandra says, please, please take care of yourself too. When the time is right, google GLENN HARROLD. His dulcit tones are lulling me to sleep now every night and help me switch off an overly active mind.

Lots of love xx

[Dandygal76]

V, I feel immensely under-qualified to offer up too much advice on the other side of the PC divide. I can only imagine how sereal but overwhelming today must be for you. We are all here for you and I am sending you all lots of cyber hugs. x

[Guest]

Hi V,

Hope you and Phoebe are able to rest a bit and that there is some warm sunshine where you are. This is just to let you know I was thinking of you.

M xxxxx

[Guest]

Still here holding your cyber hand, best I can do but you are not alone xxx

[Justamo]

Me too V, hope you had an OK-ish day.

Mo

[Dandygal76]

Much love to you all V. x

[Veema]

We are doing remarkably well. I've been, with the boys, and arranged the funeral today (next monday, 10.30). I chose a random funeral director off the internet and he was lovely...I really wanted silver cars, but they only had black, but he phoned about an hour after we had come home and said that he had managed to borrow a brand new, silver hearse and matching car off another funeral director, which I thought was lovely. Just need to see the vicar now.

Going to register the death tomorrow, so I think that will be hard. Me and the lads sat down this morning listening to Queen songs for the crem...we've chosen Heaven for Everyone to go in with and You're My Best Friend to come out to. I cried a lot this morning, but have been fine since.

Phoebe is doing ok...she wanted to go to school today, so I took her in...she goes to the school where I work, so I went in and said hi to everyone and told the head that I wasn't going back until after half term, which she was okay with. When Phoebe came home, she said she'd never had so many hugs...I know the feeling!

I hate bed time. I hate going to bed alone. I always hated it when Nige had to stay away for work purposes, its so lonely. I really miss him...I even miss poorly Nige...I'd do anything to be badgering him to eat something, or traipsing up and down stairs being his beck and call girl. He really was my best friend.

Vx

[sandraW]

V, I understand exactly how you are feeling, glad you are coping alright, it is so hard sandrax xx