A forum for family, friends and carers of pancreatic cancer patients

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Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Diet help and advice

Postby Elle » Wed Apr 11, 2018 8:00 pm

Hi all
I was tempted to write chapter and verse about my awful month long roller coaster journey supporting my dad through his journey to diagnosis, however, I would appreciate some pointers about diet.
My dad is expected to be ‘sent home to die’ as he put it, on Friday. The hospital food has been awful and I’m hoping some proper nutritious food will help him feel a bit better.
I think fatty/fried foods as well as red meat are not the best things, and I understand that chicken/fish/veg and some fruit would be better. Is there anything I should be aware of to avoid or include? I don’t want to give him anything that will make life more difficult for him. He has spoken to a dietitian but the only info I got from that was to not eat too much fruit in one sitting.
He has no appetite, and no sense of taste and he has always been a healthy eater, and I know he misses enjoying his dinner like he used to.
Any ideas would be much appreciated.
Many thanks x

sandraW
Posts: 1026
Joined: Thu Oct 31, 2013 5:38 pm

Re: Diet help and advice

Postby sandraW » Thu Apr 12, 2018 12:07 pm

Hi Elle, I am so sorry to hear about your Dad, this disease is truly horrendous.
The big thing I think we have all learnt is not to insist that the patients eats, we were lucky in that my husband had a good appetite, but lots of others are just like your Dad. The drinks on prescription from the GP Fortisip, Ensure etc are very good, my husband liked the small Fortisip as he could manage those easily but its all down to preference. I used to put cream in my husband's porridge, and butter and cream in mashed potato etc, to try and increase his calories, but its the nature of the disease it seems to take appetite away. Please give our nurses a call they are very approachable and very knowledgeable, and they will be able to give you lots of advise. sending you love and strength sandrax xx

PCUK Nurse Dianne
Posts: 260
Joined: Tue Aug 14, 2012 2:29 pm

Re: Diet help and advice

Postby PCUK Nurse Dianne » Thu Apr 12, 2018 4:11 pm

Hi Elle,

I am sure this is a very difficult and stressful time for you and the family Elle. As Sandra has suggested above, there are some solutions. I would be more than happy to have a discussion with you tomorrow if you wish to call on our support line, or alternatively send me an email and I can discuss with you this way.

Our contact details are below.

Kind regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support Service
Ph: 0808 801 0707 (10-4 Monday to Friday)
email: nurse@pancreaticcancer.org.uk

Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Re: Diet help and advice

Postby Elle » Thu Apr 12, 2018 5:35 pm

Thanks for your reply, good advice and best wishes Sandra.
I was wondering if fats were a good idea or not, as currently he’s not been given anything to help with his digestion even though I’ve mentioned it to the doctors.
He won’t be home tomorrow as his care plan etc is still being sorted out so I have a few days at least to get sorted, and I’ll contact the nurses as you suggested.
And thanks Dianne too, I shall try and phone tomorrow.
Thanks again, the support you’ve created here on the website is such a great help to so many xx

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diet help and advice

Postby Veema » Sat Apr 14, 2018 7:38 am

Hi Elle, I hope you managed to get through to the nurses and have some good advice to hand.

I am surprised he hasn't been given creon to help with digestion, but if he's as far along as you seem to make out, like Sandra says, the eating thing (or not eating as it is) is common and creon may not help. I think for us carers, watching someone not want to eat is one of the hardest things and we nag, nag, nag them to try to eat something, even the tiniest amount, because if they are eating, there's a chance they might get a bit better...if they don't eat, well...that's it isn't it. We've all done it and we've all realised that once we stop the nagging and just go with whatever our patient feels like, then things do seem calmer and less fraught. As for what to eat...I'd personally let him eat whatever he wants.

Our dietician gave us scandishakes, fortisip, calogen extra shots (tiny shot amount, great for when they just can't deal with volume) and the best thing of all was procal powder. The procal is a powder you can add to almost any food or drink to boost calories and protein without adding volume or taste. You don't need a dietician to get these things, ask the GP to prescribe them.

Lots of love and strength...it's an awful situation, that many of us have been through...shout if you need anything, a rant, a moan, a cry.

Vx

Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Re: Diet help and advice

Postby Elle » Sat Apr 14, 2018 2:49 pm

Thanks Veema
I didn’t get a chance to call the nurses yesterday and now my dad doesn’t look like he is going to make it home. Not sure he’s going to make it to a hospice either.
Such a cruel disease 😢

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diet help and advice

Postby Veema » Sun Apr 15, 2018 8:41 am

Elle, so sorry to hear that. Both my husband and Dad died in hospital and it was calm and peaceful, we felt looked after and were also given privacy and as much time as we needed with them after they had died. He'll probably slip into an unawareness anyway, so he won't know.

All I can wish for you all now is peace. Sending love.

Vx

Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Re: Diet help and advice

Postby Elle » Fri Apr 20, 2018 10:51 am

My dad managed to get into a lovely hospice and I’m grateful for that as he’s being so well cared for in a lovely environment. The Drs here unlike the hospital have been very honest about the situation and have said he only has a matter of days left.
I’m finding it so difficult at the moment, my head is all over the place and I’m finding it hard to keep my emotions in check, I’d prefer not to be walking around crying all the time at the drop of a hat. I’m terrible at good-byes at the best of times but this is a whole new level.

sandraW
Posts: 1026
Joined: Thu Oct 31, 2013 5:38 pm

Re: Diet help and advice

Postby sandraW » Fri Apr 20, 2018 11:45 am

Elle, Just make the best of the time you have left, tell your dad how much you love him and talk to him about all the lovely times and memories you have made together. At least you will get the chance to do this, its terribly sad but at least he is being well cared for. sending love and strength sandrax xx

PCUK Nurse Jeni
Posts: 984
Joined: Mon Jun 14, 2010 12:30 pm

Re: Diet help and advice

Postby PCUK Nurse Jeni » Fri Apr 20, 2018 4:09 pm

Hi Elle,

So sorry to hear this, but its wonderful that your dad is in a hospice - they are kind and caring places.

I hope the weekend is not to bad for you all.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Support Service
Ph: 0808 801 0707 (10-4 Monday to Friday)
email: nurse@pancreaticcancer.org.uk

Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Re: Diet help and advice

Postby Elle » Fri Apr 20, 2018 7:24 pm

Thanks for your support everyone xx

Derek’s Daughter
Posts: 5
Joined: Tue Apr 03, 2018 4:54 pm

Re: Diet help and advice

Postby Derek’s Daughter » Fri Apr 20, 2018 7:38 pm

Hi Elle,

I am very sorry to hear about your Dad. As you might remember from my post, I am going through exactly the same as you with mine at the moment. Turns out his cancer is like some kind of uber PC. I am a blur of emotions and half the time feel like a zombie. Just can’t get my head around the speed of this disease and for me, I think that’s much of the problem.. I am still in shock that this is even happening and still have to remind myself when I wake up in the morning. Anyway I think it’s probably very normal to feel ‘all over the shop’ (I use that phrase a lot!).

As Sandra has said, I try to find positivity that we have the chance to say good-bye to him and that we had so much time already (although not enough of course).

I heard advice as follows which I found really comforting so thought I’d pass on..

Treasure every moment, to say everything you want to, to ask every question you never dared to before and tell him things you never thought you could. Ask what he wants for you (and the kids) so you can see it through in his memory. That's what still keeps me going through tough times now. I do things now which I know would make him proud and fight on in his spirit.

Sometimes people hang in because they feel they still have a purpose and need to be here for you so in the end you just have to let him know that you are happy and healthy and everything's going to be fine and that he doesn't need to worry about you. It is hard but in the end you'll be glad you did.

Not my words of wisdom but I found them helpful. I hope you do too.

Wishing you lots of love and strength for the next few days. You’re really not alone in this.
Xx

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diet help and advice

Postby Veema » Fri Apr 20, 2018 8:13 pm

Elle, heart breaking as it is, it's great that he's got a bed in a hospice, you will all be beautifully looked after and Dad will be kept comfortable.

Loads of love

Vx

Elle
Posts: 10
Joined: Mon Apr 09, 2018 9:40 pm

Re: Diet help and advice

Postby Elle » Mon Apr 23, 2018 5:13 pm

The rollercoaster continues as my dad seems to be picking up quite well and the hospice are suggesting we consider where he goes next! I’m trying to be mindful that anything could happen next but it is encouraging at the moment.
Thanks for the messages of support.
Dereks daughter - thanks and yes I understand what you’re going through, and if there is a way we can message each other directly I would be up for that if you would, if it’s even possible? But either way sending my love and thoughts.

Lots of love and hugs to you all x

Veema
Posts: 466
Joined: Mon Feb 02, 2015 5:35 pm

Re: Diet help and advice

Postby Veema » Mon Apr 23, 2018 6:12 pm

If you want to contact each other off the forum, message the nurses and they will put you in touch by your email address.

I'm pleased he's picking up a bit Elle, it often happens when symptoms are managed properly and hospices are fab for that.

Vx