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

Re: Ascites

Postby Proud Wife » Sun Sep 04, 2016 7:51 pm

Hi Victoria

I hope you and Nige managed to have a better night and that he's now more comfy. Well done on your eye op, I'd love to have the courage to do that but I'm too much of a woos!

As for the blue badge, absolutely go for one. Disabled bays are vital for those that need them and seeing my hubby struggle to walk in the last few weeks, his blue badge was a life saver. It was also a bit of a bonus when he was not so ill to be brutally honest! Nige is entitled to one and fingers crossed he won't justify the need for one for ages but you will have it, nevertheless.

Wishing you the very best of luck with scans this coming week, will be thinking of you.

(((((hugs)))))

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

Re: Ascites

Postby Veema » Mon Sep 05, 2016 10:05 pm

Thanks all.

He's not really progressing much, although he is making the effort to get up, showered and dressed and is still sat here now watching telly. Still not eating much, dietician should have been in touch today, so will be ringing our hospice nurse tomorrow to see if she can chase that up...he just can't take any volume of food or drink, so the scandishakes he has, although tasty and full of calories and vitamins etc., are too much for him to get in. To be honest, I think he needs admitting and getting some sort of nutrition inside him via whatever means. If he continues like this, he'll be in no fit state to either start chemo again if the disease has progressed, or be fit for an op if the disease is stable and they decide to sort out the hernia.

I'm a terrible carer too...patience is limited and I'm shattered. The daughter is going on a school trip to London tomorrow (we live in Lancashire) and she's setting off from school at 6.15! Think I'd better get to bed!

Victoria x

Marmalade

Re: Ascites

Postby Marmalade » Tue Sep 06, 2016 7:54 am

Dearest Victoria,

One of the early lessons for me was when I was told to stop trying so hard. It was a real slap in the face but had to be said. I don't know how things are for you and Nige and what you have talked about but I was exhausting myself and Louis with my trying to cajole him into eating, drinking, keeping moving and doing some exercise etc.. all the things that would keep him going longer and keep him well. It was only when all that stopped and I took my lead from him that we could both get some rest and change gear.

If you were a rubbish carer you would not be on here fretting and worrying. You love him and want him to be well and get frustrated with waiting and watching him decline. Its absolutely normal in the circumstances. You have plenty to cope with without beating yourself up. You are doing a great job and the very best you can do. By the way, sometimes you need to tell yourself that you need to rest, exercise and eat well because you are worth looking after too! xx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Ascites

Postby Wife&Mum » Tue Sep 06, 2016 8:45 am

Marmalade, I hope you don't mind me asking but was it Louis who told you to stop trying so hard? I'd imagine that that is an extremely hard thing for a patient to tell their wife or husband, particularly if they have a young child. Much easier I would think if it's a doctor who plants the seed.

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

Re: Ascites

Postby Veema » Tue Sep 06, 2016 10:14 pm

His district nurse came out today...she couldn't believe the decline in him, she last came when he had the PICC line a couple of months back. She thinks it definitely looks like ascites to her and thinks it's unfair that they've not scanned him earlier...in hindsight I have to agree and I'm cross with myself for just going along with it.

Marmalade...he's not at that stage yet...he's still fighting the right, part of me wishes he would accept that he's not going to get better...I mean, he must know this, he must know that I know this...it makes it so hard.

Vx

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

Re: Ascites

Postby Proud Wife » Wed Sep 07, 2016 11:07 am

V, hindsight is a wonderful thing - don't beat yourself up. You have been brilliant. You are doing your utmost and more you can't do.

I'm afraid that if Nige accepts he's not going to get better, the end may come sooner rather than later. If thinking he's going to get better helps him, then go along with it. Just make sure you know his final wishes and that he gets his affairs in order if you possibly can. Although my hubby knew he was terminal, PC was never going to get the better of him and in the end he had me believing that too! Whatever gets you through this evil disease as best as possible - that's what you should be aiming for, as hard as it is for you my lovely, and I know just how hard that is.

Remember, we are all here for you. Stay strong
Love PW xx

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

Re: Ascites

Postby sandraW » Wed Sep 07, 2016 2:30 pm

Veema,
My husband Trevor was just the same, he knew really he wasn't going to get better, but his way of coping was to believe he was, end of.
It wasn't until 10 days before he actually died, when the consultant told him, as he had specifically asked how long he had got, that he would accept it, but I still think he just didn't want to believe it was true.
He didn't want to discuss funerals or such, unlike some who want to arrange everything themselves, he just wanted to live. He did say he wasn't frightened of dying he just didn't want to leave me as he knew I would be lonely, we had been together 49 years and married for 46 years, and I am.
I just went along with him because like you I knew really he did know, but just let Nige deal with it in his own way, who can say which is the RIGHT way anyway.
I am sat here having a little cry about the memories of it all and I send you love and strength because I understand exactly how you are feeling, take care sandrax xx

Marmalade

Re: Ascites

Postby Marmalade » Thu Sep 08, 2016 8:27 am

Dearest Victoria,

What a time you are both having, my heart is breaking just thinking about you. It's difficult to answer your questions, not because I don't know the answers but because I know full well how hard it is to cope with this ghastly disease and the trauma of knowing that it will claim it's victim if not in months, then in too few years. It's an abomination. There is a view that if you stop fighting the end comes sooner and this may be so but its not all about time. Quality of life, pain and suffering and the suffering of those around all come into it. More than anything it is about what the patient wants. What I will never accept is that facing a death without treatments is giving up or failure. I completely understand that for some, refusing to accept the prognosis is a coping mechanism and has been known to produce mini miracles. For others, especially the young, those months or years gained can bring such joy to their lives and those of their children that they are worth the fight. I lived in a house where my father was slowly dying throughout my childhood, I have mixed feelings but that's a different story.

It was my daughter who told me that I was making myself ill and my husband distressed by my constant attempts to keep him well. She is a doctor at a major teaching hospital but she is also a very loving daughter both to her father and to me. It was a vicious circle, I was trying to keep him going because it is the right thing to do and because I didn't want to see him die or be left alone. He was putting up with trying different food, drugs, activities and so on because he was afraid, not of death but of the process of dying, and because he didn't want to leave me on my own. I know this is familiar to many. Facing these issues brought us both peace.

The right thing to do is what Nige wants. If he wants to fight, then fight with all your might and I will be there praying for you and willing you on. If he is having treatment to prolong his life because of fear or because he sees not fighting as failing himself or you and the children, then those are the things that need to be resolved.

I hope I have not distressed you or anyone else. I have tried to answer you honestly but we all unique people and have different journeys and there is no 'one size fits all'. You are not failing him, you are doing your absolute best and you love him. The only thing I would urge is that you get the finances and work sorted so that you can have as much time with Nige and the children as you need and want.

Much love, M xx

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

Re: Ascites

Postby Veema » Fri Sep 09, 2016 8:47 pm

No change really over the past few days, so that's why I've not posted. I have read all your comments and they do help.

He goes through phases of being positive and upbeat to being so down in the dumps its scary. Had the scan last night, they were discussing it in the MDT meeting today...thought they might have phoned to say go and get it drained, but heard nothing...we've got oncology on Monday.

Hospice nurse is brilliant...she's sorted out the dietician, who came out to see him yesterday and she's got us loads of products coming...I've to buy some full fat milk powder, but can only find skimmed milk powder, so if anyone knows where I can get that, it would be much appreciated. District nurses came out today, he's got a small sore on his now non-existent bum...cream and dressings ordered. Pressure cushion has arrived today...it only took a week to get it! They want him to have a profiling bed, but he won't entertain the idea, but I think he'd be much more comfy in one rather than sitting up in bed.

Anyway...hoping for a peaceful weekend and I really need to rest, I'm shattered and becoming increasingly grumpy! Hope everyone else has a pleasant weekend.

Vx

Marmalade

Re: Ascites

Postby Marmalade » Sat Sep 10, 2016 10:45 am

Hi bee a, your husband can have a blow up mattress topper for his bed which will help and is what we had for Louis. I have one and can send it if you want or make the district nurses get you one. Nurses have my email. Don't be disappointed if your man rejects the food products, they are pretty grim. I got milk protein from Holland and Barrett but Louis hated it so we just liquidised ordinary high calorie food. Much love darling xx

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

Re: Ascites

Postby Dandygal76 » Sat Sep 10, 2016 12:32 pm

I just popped on here for quick look but on the way out... will respond more later. In the meantime,

https://www.amazon.co.uk/Organic-Whole- ... B00D2T08OE

xx

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

Re: Ascites

Postby Proud Wife » Sun Sep 11, 2016 2:26 pm

Thinking of both you and Nige. Hope this weekend has been more comfortable and that you've managed to get some much needed rest V xxx

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

Re: Ascites

Postby Veema » Sun Sep 11, 2016 5:02 pm

Had a much better day yesterday...think the extra calories from all the supplements are helping. He managed to be up and pottering for most of the day, although still uncomfortable. He now has the dressings for his bum...but seriously, no idea how I'm supposed to stick these things over the sore, but not over his bumhole!!! Had a few giggles doing that last night...at one time he'd never have shown me his bumhole...he'll show it anyone who will look now! Sorry if TMI.

Thanks for the link DG...I'll look into that, but I'm putting the procal powders into everything he has, so don't know how the milk stuff will help.

Got the dreaded oncologist appointment tomorrow and hopefully (really????) the results of the scan. I'm pretty sure there will be some spread to the liver this time, as Dr Google tells me that this is the main reason for ascites, but we'll see. Haven't had any blood tests for ages, so no idea what's happening with the CA19 levels.

He's been offered all sorts of things for the bed and refuses them all. He's an awkward sod.

When I got into bed last night, he gave me a really filthy look and wouldn't speak to me...when I asked him what on earth was wrong, he said that he knew I'd got myself another bloke and that I was just waiting for him to die...seriously...like I'd have any time to go and find myself another bloke even if the inclination was there!!!! Turns out he'd dreamt it.

So...lots of positive thoughts for tomorrow please...I think it will be a turning point one way or the other.

Vx

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

Re: Ascites

Postby Dandygal76 » Sun Sep 11, 2016 5:18 pm

Veema, waiting on scan results is always a grumpy time for everyone, my other half goes through hell the week before because I am an absolute nightmare and I would take the filthy look on the chin and just hope things are going to be okay tomorrow. It is the not knowing that is awful isn't it.

Dignity does tend to go by the wayside with PC doesn't it. I have never had so many adult discussions about poo consistency in my entire life compared to since January.

My dad is also an awkward sod... you have my absolute sympathy there.

I am sending you every cyber positive thought I can muster between now and your results tomorrow. x

Marmalade

Re: Ascites

Postby Marmalade » Mon Sep 12, 2016 6:23 pm

Darling Veema,

How are things. I read your last post and laughed, men can be faery odd at the best of times but the idea of going hunting for a toy boy between sticking plasters on his bum was just fabulous.

Hope the appointment went well and so pleased your man is feeling a little bit better. Don't push the bed thing, he will come to it in his own time and which of us wants to give up our independence by doing as we are told. He is his own man, good for him, you will have to settle for a sheepskin on the bed and tell him its a sex toy ha ha ha.

Much love, M xx