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Posts: 2
Joined: Mon Apr 08, 2019 12:36 pm

Confused and worried

Postby Moonlightandjj » Wed Apr 10, 2019 2:11 pm

Good Afternoon,
I am not sure if I am being too over protective or not, but I am worried about my recently widowed dad.

On the 29th March he had the Whipples Procedure done, and spent longer in HDU then expected and was moved on to a surgical ward last Friday night. Saturday he got out of bed for the 1st time, sat in a chair, still had all tubes etc in place. Sunday had to stay in bed. Monday was allowed up and walked a bit and was told he could go home next day ( yesterday) if all was ok.
This came as a shock to all of us, as we was told before operation and in booklet it would be minimal 2 weeks stay, and everyday a little bit more walking etc.
Well yesterday ( Tuesday) came, yes midday you are going home!
Dad lives several hours away from hospital and so do I in another direction, but have been living at dad’s for months seeing hubby at weekends 🤣
Discharge from hospital was a complete farce! Medication which he took in, 28 day supply, his own, he left with 4 days of!..... where is the rest?
New medication that was needed, they either could only give him 2 from pharmacy and for the other one 2 from ward trolley. The drinks never appeared.
The discharge letter doesn’t mention that the new medication they gave him will last a day! Plus I was in a box NO directions and the other from the ward was just foil tablet cut, no information! Just can make out the name!
Dad hasn’t seen a dietitian, so we don’t know what he can eat, he’s only eaten a few mouthfuls in hospital.
He has not been given that enzyme replacement medication like he was told he would have to take.

He has been given injections ( low heparin) for next 15 days.

We are just at a lose to know what to do!

Don’t get me wrong the hospital staff and consultants and surgical team have been amazing, but feel the discharge side of things are really bad.

We don’t know what to do, nothing has happened like we was told it was going to, or read.
And we certainly don’t want to risk dad’s recovery by not missing anything we should.

Are we being too over protective, anxious and worried?
Or is it normal to leave hospital and not have your normal medication, not your new medication that you was told you was going to have, or see a dietitian?

Any advice would be great, so new to this, just don’t know what to do or expect

Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Confused and worried

Postby boa » Thu Apr 11, 2019 8:28 am

I very rarely post her nowadays but I see you haven't had a response from anyone. I think what you are experiencing is pretty normal discharge and often people are not sure what to do. I suggest you contact his GP today and I am sure they will be helpful. The main thing is to get Creon which will help him with digestion. The GP will be able to prescribe this. It's unusual not to have some sort of dietary advice and I'm certain the GP will put this in train.

Posts: 2
Joined: Mon Apr 08, 2019 12:36 pm

Re: Confused and worried

Postby Moonlightandjj » Thu Apr 11, 2019 8:53 am

Good morning,
Thank you for replying. Yes I think that is the best course of action as we feel as everything we was told would happen hasn’t.
Getting Creon is important, and as for dietary information I think google can help there !
Thank you again for replying

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

Re: Confused and worried

Postby sandraW » Thu Apr 11, 2019 10:49 am

Hi I too rarely post nowadays but just wanted to reply to you my husband had his op for removal of 2 thirds of his pancreas and spleen in September 2013. The care is the hospital was exemplary much like your Dad but the discharge was just as bad. Unfortunately the GP wasn't much use either, I contacted the named specialist nurse at the hospital and she sorted the creon, penicillin, and dietitian for us.Perhaps that's the way to go, you can also ring the nurses on the site here they are very knowledgeable, helpful and are a great source of support. My husband made a marvellous recovery after his surgery, but the cancer returned in his liver. Thinking of you and wishing you all the very best. sandrax x

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Confused and worried

Postby PCUK Nurse Jeni » Thu Apr 11, 2019 3:29 pm

Hi moonlight,

Sorry to hear all of the above.

I will just email you directly.

Kind regards,


Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707