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Marmalade

Re: Ascites

Postby Marmalade » Sun Sep 18, 2016 3:41 pm

Darling Veema,

It's a tough time, the crying is absolutely ok. Whenever you like you just let it come. Like me you are a toughie and don't like others to see you buckle but you are at home and you can do what you like. Actually you can also do it in public if it helps and I've had a couple of episodes in shops that I am not proud of but hey ho!

For what it's worth I think you should spend as much time with Nige as you both want and can afford. Sadly PC is a life limiting disease that has no cure as yet so if he wants you to be with him because he feels so ill or is frightened and you can bear it, then yes, be with him! It doesn't matter if its a blip or not, time is limited be it a day, a week a month, a year or five years, its still limited so make the most of it. It's not for everyone, I know that so if you need to be away from it then perhaps you can do something more flexible?

Hold on to the memories and talk with Nige about them. Louis and I used to cry together but we also used to laugh and enjoy the memories. I've been throwing old paperwork out today and find he has kept every bit of paper on the children, cars, university applications, school reports, begging letters the lot, even the notices for having the banns read when they got married. It's a sad business.

Nige may have an infection which is causing the delirium and making him feel bad so I think you should call the GP or maybe speak to one of the nurses on here if you are not sure.

I know it's not much help but I think of you all the time and wish and pray that you both get some respite. Much love M xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Ascites

Postby Veema » Mon Sep 19, 2016 3:09 pm

The hospice nurse has just been. I've now been signed off work for the foreseeable future, which doesn't sound like it's going to be long...she's given him a month at the outset. He doesn't know this, he doesn't want to know. The 'just in case' crisis pack is coming tomorrow along with the DNAR paperwork. He's now got morphine for his 'discomfort'.

I went into work this morning and cried on the headteacher, who told me to go straight home, I cried on my class teacher and I cried on the IT bloke! I've just been to collect the meds from the chemist and cried in there too! I really need to get a grip...the laser eye people said I might have dry eyes following my surgery...well they were wrong!

I need to tell the kids tonight. Nige has two lads from his first marriage who are in their twenties...such lovely lads (you wouldn't have heard me saying that when they were teens), I think they know it's coming...in fact one of them said at the weekend that they just wished he'd go as they hated seeing him so ill. But Phoebe...she's a different matter...I have no idea how she will react. It really couldn't come at a worse time for her...she's just gone into year 6, which is a tough year, we are looking at high schools over the next couple of weeks and getting that application in and she's got her SATS next May...add to that all the hormones that are starting to rage around her little body...its a recipe for a meltdown. And the poor dog hasn't got a clue what's going on!

So...even though I always knew this was coming, I never really imagined we'd get here. There's a good chance that this time next month it will all be over.

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Ascites

Postby Dandygal76 » Mon Sep 19, 2016 6:21 pm

Hi V

I am so sorry you have received such devastating news. I would be crying to everyone in your shoes as well.. what the hell else are you supposed to do?? It is a terrible time for it to happen to your daughter as well, what a bless of an age to lose her daddy. There is no easy way to do these things and I think you just have to take a deep breath, bite the bullet and then you will know what fallout you are dealing with. Could the school not get her some counselling as well? My son's school got some in for him and it really helped him to have an independent outlet as I think with my son he did not want to add to meltdown and kept it all in.

I hate teenagers as well... at least you are through that bit with the boys. I also know what you mean, I never think the time will come with dad and it all feels so surreal after a while doesn't it and then with every story we hear... bam and then it turns.

I hope dearly that you get the support to keep Nige pain free and as comfortable as possible.

Much love to all of your family. You are a strong lady and you will steer your family through this.. She lions as Marmalade has said!

xxx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Ascites

Postby Proud Wife » Mon Sep 19, 2016 6:31 pm

Hello V

I am so sorry sweetheart. Even if you expected that type of news, it hits you like a sledgehammer. Try not to think more than one day ahead. I am pleased Nige doesn't know, he doesn't need to know in my opinion and thank goodness you've now been signed off. Priority is keeping Nige comfortable and making sure you and Phoebe are okay - well as okay as you can be in these circumstances. My heart goes out to you all. I hope that the morphine will help Nige and whatever time you have left (no-one knows how long) try to make the best of it if you can.

Don't forget, we are all here for you xx

Marmalade

Re: Ascites

Postby Marmalade » Mon Sep 19, 2016 7:06 pm

Darling Veema,

No one can make this any easier. You just cry my love and don't be too sure that Nige isn't aware. I think people always know but don't always want to talk about it. I was very lucky that Louis and I could cry together. It does stabilise and because they are still with us it seems everyone was wrong, then the next wave hits, that's why it's called the roller coaster.

I was just a bit younger than your daughter when my dad died and it was awful but it always is. I would say let her share the grief and have as much time and involvement as she wants. Exams are important but they can be taken later if she is not up to it, the door doesn't close on education but her time with dad is limited.

I am so very sorry V because you have been so brave and strong. I know you don't want to be like this but it is a normal reaction, you are not cracking up, you are just unbelievably sad and perhaps angry that you have to deal with this. As you know from our journey, no one can say how long it will be. I just hope you can find some calm so that however long it is, it can be the very best it can be for you all. M xx
Last edited by Marmalade on Tue Sep 20, 2016 11:45 pm, edited 1 time in total.

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Ascites

Postby Justamo » Mon Sep 19, 2016 8:19 pm

V, you are a strong woman. Crying is not a sign of weakness, it is simply a way of dealing with stress, and God knows your stress must be overwhelming. You have done every single thing you can for Nige and Phoebe so care for yourself as well. Give Phoebe a cuddle, try to find the words to tell her how much her daddy loves her, spend time with Nige, and - if you can - take a relaxing bath.
Sit with him for as long as you can, doze if you want to and cry if you want to.
Every single person on this forum is with you in spirit. I am shortly going out to my special spot in the garden where a rosary hangs on a nail in the fence and I'll pray that this dreadful time will at least be peaceful.
Take care if yourself my love.
Mo

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Ascites

Postby Veema » Mon Sep 19, 2016 9:32 pm

I've told her...she cried, said that she loves him and doesn't want him to die and why is this happening to her and that nothing will be the same again...I told her I felt exactly the same.

I made a huge point of it being okay to feel upset and cry, because it is so very sad...I've told her that she hasn't to keep things bottled up for fear of upsetting me, that I'm upset anyway and if she feels like a cry, have a cry or if she wants to talk about anything she can...to any of us.

I've also told her that although it will be horrible without him, that we will be okay...we won't have to move house and nothing like that will change and we've got a lovely big supportive family.

Then her friends came and called for her and she went out to play.

Thank you for all your lovely words. I feel so lucky that we've had 2 years since he was diagnosed...and they haven't been a bad 2 years either. Lots of people don't get that.

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Ascites

Postby Dandygal76 » Mon Sep 19, 2016 10:06 pm

Children are amazingly resilient aren't they. A close friend of mine has 4 kids who were from toddler to 10 and their mum broke her leg and then got gangrene and died. I was in awe of how they dealt with it. Life is full of wonders at that age and sadness only has a limited space. I think the worst moment for my friend was when he went to pick up the 7 year old boy from school one day and he came running out and then stopped dead in his tracks and looked disappointed to not see his mum standing there and then said I wish my mum was still here. The point is not a negative one, they just get on with life and then they think about it. It doesn't consume their day like it does with us as adults and they naturally get on with life. My cousin also lost her mum at a very similar age to phoebe and it was the same, life carried on.. it was sad but didn't consume everything. I hope that makes sense... I am hoping to be reassuring. I think everything you said to her tonight was absolutely spot on you amazing lady. x

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Ascites

Postby Justamo » Mon Sep 19, 2016 10:12 pm

Veema, I am astonished, but somehow not surprised, that in the midst of your own personal misery you have the compassion and kindness to post on poor Budgie's thread.

Lucky Phoebe to have such a truly lovely person for her Mum.

Have a peaceful night, we are all thinking of you.
Mo

Marmalade

Re: Ascites

Postby Marmalade » Tue Sep 20, 2016 7:16 am

Well done V perfect. You did a great job and it was great because you were honest and spoke from the heart.

I hope you had a little rest. M xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Ascites

Postby Veema » Tue Sep 20, 2016 10:40 pm

Well the crying seems to have abated for now.

Bed has arrived and he's asleep in it now whilst I'm sat on the little sofa bed just looking at him. His boys have been tonight whilst Phoebe and I have been to look at a high school...they've had a talk with him and a cry...they need looking after every bit as much as Phoebe does. I've told them that if their mum wants to come and see him, she can...there's never been any animosity between me and her (she decided she was a lesbian), so I'm happy for her to come. I have noticed that all and sundry are crawling out of the woodwork wanting to come and see him though, people who haven't bothered for the past 2 years...they can get lost, he needs to spend this precious time with those who truly care about him.

I've been looking at funeral directors today...no idea how I'm going to choose one and coffins are a minefield! I have decided that when I die I don't want a funeral...it's a lot of faff...I'll just have a direct cremation...it was good enough for David Bowie!

I'm going to bed alone tonight...it's something I'm going to have to get used to, but I can always open up the sofa bed if I want to stay in here with him.

Oh...and a district nurse turned up about half an hour ago...no idea why...I hope they aren't going to be making an appearance every night!

Peaceful dreams everyone.

Vx

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Ascites

Postby Justamo » Tue Sep 20, 2016 11:07 pm

Hello V
I've been checking this thread every half hour this evening just to see if there was any news.

I'm glad Nige's sons have been to see him. I know what you mean about all sorts of people crawling out from under their stones, and as you say - if they haven't been near Nige all the time he was ill then there's very little point in their circling around now. He only needs the people who truly love him around him. And you don't have to put up with these people either. Avoid them if you can because at an emotional time like this it's easy to take out your hurt on the all and sundry, especially if you feel a bit slighted by them in the first place.

Just focus on Nige and Phoebe. You are doing so well and we are all thinking about you. Actually, I was thinking about you at 3.30 this morning! And I checked the forum then just in case you were awake and 'talking' to us.

Good night and God bless,
Love
Mo

Marmalade

Re: Ascites

Postby Marmalade » Tue Sep 20, 2016 11:56 pm

Hi V,

Just checking in. We are all walking with you and Nige on this journey, you can't see us but we are here. I used to lie with Louis sometimes, bit of a squeeze but we both got comfort from the contact. Thinking of you all and wishing you a peaceful night m xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Ascites

Postby Veema » Wed Sep 21, 2016 8:49 am

Justamo wrote:
> Hello V
> I've been checking this thread every half hour this evening just to see if
> there was any news.
>
> I'm glad Nige's sons have been to see him. I know what you mean about all
> sorts of people crawling out from under their stones, and as you say - if
> they haven't been near Nige all the time he was ill then there's very
> little point in their circling around now. He only needs the people who
> truly love him around him. And you don't have to put up with these people
> either. Avoid them if you can because at an emotional time like this it's
> easy to take out your hurt on the all and sundry, especially if you feel a
> bit slighted by them in the first place.
>
> Just focus on Nige and Phoebe. You are doing so well and we are all
> thinking about you. Actually, I was thinking about you at 3.30 this
> morning! And I checked the forum then just in case you were awake and
> 'talking' to us.
>
> Good night and God bless,
> Love
> Mo

I was up and about at 3.30 this morning...he was calling out and when I went in, he had no idea who I was...I think he was dreaming, seems fine this morning.

He's actually feeling comfy in the bed, bet he wishes now that he hadn't resisted it for so long. I've given up trying to shove food into him, but all he managed to get down yesterday was a scandishake and it makes me feel like I'm failing him...I know deep down that I'm not. Anyway, he's asked for a weetabix this morning.

I found out yesterday that one of my close friends at school has recently found out she's got breast cancer...I'm gutted for her and sad that she thought she couldn't tell me, although I know why she hasn't. I know I've got a lot on my own plate, but doesn't mean I can't support her in a virtual, sending positive vibes sort of way. Anyway, she's having a lumpectomy today, so I'm thinking about her too.

I've no idea where the day went yesterday, what with people calling and the phone is constantly ringing! I had planned on doing the ironing whilst watching a film, but this morning the child has gone to school in yesterday's t-shirt!

Off to feed the dog now...she's sat almost on the keyboard looking intently at me which means she's hungry (although she has just pinched a piece of my toast).

Vx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Ascites

Postby sandraW » Wed Sep 21, 2016 11:41 am

Hi V,
Glad to hear that Nige likes his bed and is comfy in it.
Its all just so sad for you all, but how wonderful that you can all come together as a family even to the extent of boys mum being included too.
It must be so hard for Phoebe bless her, wondering why all this is happening to her, we had granddaughters who loved there granddad dearly but were not in the mist of it all like Phoebe is.
I am sending you all love and strength for the journey take care sandrax xx