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

Re: Ascites

Postby Dandygal76 » Wed Sep 14, 2016 12:45 pm

Massive hugs to both of you. It is exhausting to be upset isn't it. I think you are both doing marvellously. One day at a time lovely people. x

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

Re: Ascites

Postby Proud Wife » Wed Sep 14, 2016 2:24 pm

I am so very sorry to hear about the spread V. I wish Nige the very best of luck for tomorrow's procedure.

Hang on in there.

Much love xx

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

Re: Ascites

Postby Veema » Wed Sep 14, 2016 10:05 pm

You did warn me PW...even so I am shocked at the amount of spread in just 7 weeks.

He's been much perkier today, I think that's because he knows things are happening and thinks he's going to feel marvellous after this drain...we will see how he feels in a couple of days.

I'm tired today, but have had a nice day at school. I look after a little girl with cerebral palsy for part of the day and her support worker commented on how much she has come on over the past few weeks, which makes all the effort with her worthwhile.

Marmalade I think you will have lots of ups and downs as you come to terms with living without Louis...but hopefully, the ups will eventually outweigh the downs...huge hugs to you and PW.

Vx

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

Re: Ascites

Postby Proud Wife » Wed Sep 14, 2016 11:23 pm

I only spoke from personal experience V, sadly enough. The more I think about it now, the more I realize just how rapid the spread was for my hubby. That's the nature of this rotten beast. Even bigger hugs to you. Xxx

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

Re: Ascites

Postby sandraW » Thu Sep 15, 2016 10:03 am

Veema, Just to let you know I am thinking of you both today, and I hope Nige feels better when he gets the fluid drained away.
This disease is relentless, it lulls us into a false sense of security, then rears its ugly head again.

The set backs knock you for 6, we found we needed 48 hours to absorb the news, digest it, have a good cry (me that is) and then just continue onward, we are very resilient, but is so hard to keep picking your self up and moving forward but its all we can do.

So lets hope Nige is more comfortable and he can get back home to his lovely room asap, take care sandrax xx

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

Re: Ascites

Postby Dandygal76 » Thu Sep 15, 2016 11:54 am

Hey Veema, I hope all goes well today and that Nige feels better after getting some treatment. It is good that he is feeling more positive so I hope you had a reasonable nice evening.

It does sound like your work is rewarding and there you was worrying about not being so good at the caring patience and you have a career in it! This disease is hard on the carers as well so never beat yourself up, my mum has her moments of frustration and sometimes a little resentment - especially as dad can be a stubborn one. I sometimes feel bad because I just don't see dad enough or I think I should have done something but it is so so exhausting to be on this 24 hours and I still have respite at home away from the front line.

I think everyone on this forum are doing their best and we all get every angle of the emotions around it all. Much love to you both. x

Marmalade

Re: Ascites

Postby Marmalade » Thu Sep 15, 2016 12:45 pm

All the very best for today both of you, it is at least a start on making Nige more comfortable. I will be thinking of you both M xx

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

Re: Ascites

Postby Veema » Thu Sep 15, 2016 9:35 pm

We are home...6.8 litres of fluid lighter!!!!

4 litres came out in less than an hour and then it slowed down. We were home for about 5pm and he is feeling very, very weak, but the difference in his body is very noticeable...I don't know if you can post photos or not, but he looks to be more comfortable now. There was a man in at the same time who has 8-10 litres drained off every 10 days!

It's so boring sat in hospital, I went through a huge bar of dairy milk wholenut, a sandwich, bag of crisps and several cups of tea and biscuits that the nurses kept bringing...they were really lovely, but I now feel huge!

Project bedroom will have to be at the weekend now. Nige has two lads from his first marriage and they are coming to help clear everything out on Saturday and my Dad is coming to help paint on Sunday, carpet down on Monday and bed due on Tuesday.

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

Re: Ascites

Postby Veema » Thu Sep 15, 2016 9:39 pm

Dandygal76 wrote:
>
> It does sound like your work is rewarding and there you was worrying about
> not being so good at the caring patience and you have a career in it!

Ha ha...I didn't want to look after this little girl, lovely as she is, because I don't have the patience, but school is totally underfunded and we've had to cut back, so didn't really have a choice. It's not as bad as I expected it to be, but I'm used to teaching maths to lower ability children, so it's a big difference. I do still get to teach the maths, just not as much.

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

Re: Ascites

Postby sandraW » Thu Sep 15, 2016 10:59 pm

Lets hope Nige feels better soon, now he's rid of that lot, nearly 7 litres that's amazing.
I am sure you needed the chocolate, crips and biscuits! you couldn't risk your blood sugar dropping now could you! I used to take my knitting, frilly scarves, sold lots for PC too, it kept my hands busy and was always a conversation opener with other patients and their friends and family night sandrax xx

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

Re: Ascites

Postby Proud Wife » Fri Sep 16, 2016 11:24 am

How's Nige this morning V?

How could you have eaten a whole bar of dairymilk wholenut. You should have eaten TWO at least.

Thinking of you xxx

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

Re: Ascites

Postby Veema » Fri Sep 16, 2016 9:24 pm

He's been very weary today, but they said he would be.

He's not really eaten much more either, but I'll see how he goes over the weekend...he's got about 1300 calories in today with scandishakes and procal powders, which isn't too bad. I've told him he should have had some wholenut as 3 pieces was 80 calories!

He's also become very clingy...didn't want me to go to work and has been constantly wanting me to hug him since I've got home, which is most unusual...I went into work because I think it's important that I go in whilst I can, then when I can't, they'll know I'm not swinging the lead...I don't think they would anyway, the head is fantastic and so supportive, but it makes me feel better.

I had a check up on my newly lasered eyes today...I've got better than 20/20 vision in my right eye and not quite 20/20 in my left, but better than driving standard so a pleasing result really.

Hope everyone has a nice weekend

Vx

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

Re: Ascites

Postby Veema » Sun Sep 18, 2016 1:13 pm

Having a tough weekend. There's been no improvement at all in his comfort levels, still can't sleep and his tummy looks like a big hard football again...can it fill up that quickly? How do you know when you are coming to an end of life scenario? He looks like death warmed up, no flesh on his body at all and yesterday he started with some mild delirium...not knowing where he is, talking rubbish etc. It's all very worrying. The hospice nurse is coming to tomorrow, so I'll ask her about it.

I'm having episodes of just sitting crying...I can't seem to stop and it's so unlike me, but I just feel so sad. It's not quiet crying either...it's big, wrenching sobs like I'm trying to get rid of the ache inside, but it's not going anywhere.

I don't really want to know timescales...but then I do...I need to know if I should be at home with him...I think I should be really...but then this could just be a blip...but I think I'm kidding myself thinking that...or maybe I'm being defeatist by not thinking that? I just want someone to tell me what to do.

I've just cut his hair...I used to moan about having to cut his hair...couldn't believe he wouldn't pay a fiver at the barbers...so then the tears came again thinking how mean I was and how I wish I could cut his hair for ever. Yesterday I was sat glossing the skirting boards in the room his bed is going in...there were little bits of pale green paint and bits of pink paint still visible from previous decorating...we decorated it pale green when I was pregnant and didn't know if we were having a boy or a girl...it was painted pale pink when Phoebe moved out of her cot into her pink castle bed...all lovely memories of happier times...oh to be back then.

Part of me just wants it all to be over (so selfish), but part of me just wants to hold onto him and never let go.

So sorry I'm being maudlin...must be PMT.

Vx

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

Re: Ascites

Postby Justamo » Sun Sep 18, 2016 2:43 pm

Poor Veema.I know the feeling that 'part of me wants it to be over...' I remember when my mother was dying of lung cancer I used to drive (about 2 hours) to the hospital each day and if she had rallied or improved slightly I found it hard to deal with. Of course I didn't want her to die, but I had become accustomed to the downward slope and the inevitable result and the occasional 'ups' knocked me off balance.

Peter and I have always been quite independent of each other during our 40 year marriage, we've each done our own thing, and we have seldom compromised. We holidayed apart until just a few years ago. But I think I put in a previous post how we had both become rather clingy. I think it's because we are in a new and hostile world which is dominated by PC and we're trying to steer our way through it. We've done cancer (mine) and heart surgeries (both of us) before but PC is a whole new ball game.

You are not maudlin, and I doubt it's PMT, but you are having a bad day and you're allowed to. It would be trite and silly to say 'cheer up' and I wouldn't insult you by doing so, but slowly your natural good sense will bring you up to a better frame of mind and you'll cope with it.

Listen to me, a PC virgin, dishing out support to somebody else. But I mean it V, you were almost one of the first to jump to my aid and I'll take a bet that there will be at least 5 other posts along with this one sending love and prayers and virtual hot chocolate to you.

Take care of yourself my love, and nobody can tell you if you need to be home with him. If YOU think you want to be with him, then just do it.

Mo XX

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

Re: Ascites

Postby Proud Wife » Sun Sep 18, 2016 3:23 pm

Hello V

I'm afraid there's just no answer as to when life may be coming to an end. Someone could be at death's door, stay there for a while and rally or they could go very quickly like my hubby did. I know exactly what you mean by wanting it over.....thats ONLY because you love Nige and can't stand to see him suffer the way he is. And then of course, you never want it to be over because you want your loved one no matter what.

I agree with Mo, only you can decide if you need to be a home now. If you feel in your heart of hearts the end is near and you'd never forgive yourself if you weren't there, then you will probably get your answer. I spent 8 days at the hospital and although it was exhausting, difficult, exceptionally emotional, sad, etc, I don't regret one single second because my darling hubby passed with the 2 loves of his life by his side, my son and I and I know deep down that I could not have done a single thing more. Having no regrets is so so important.

Having said all this, I was told at the hospital when I didn't want to go to sleep that someones your loved one will wait for you to leave the room - even if just to go to the loo - and will pass if they don't want you to witness it. Just go with your heart and what you feel is right for you and your family. There is no right or wrong here. Just do your best as you have throughout this ordeal.

Of course you are sitting there sobbing and I am too, for you, for Nige, for me, my son and of course my hubby and everyone else who has been affected by this vile, vile disease. Let it out sweetheart, you will only feel worse if you don't. Come on here whenever you need to, I will keep popping back to see if there's something moral cyber support I can offer you.

Lots of love and hugs
PW xx