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

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Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad

Postby Janiebobs » Mon Apr 28, 2014 9:36 pm

Hi Jeni,
Thank you for the advice. His district nurse is getting him a support stocking and his GP prescribed an antibiotic and some ointment. He is seeing the oncologist tomorrow so I will remind him to tell him.
Jane

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad

Postby Janiebobs » Fri May 30, 2014 10:57 pm

Dad had a scan last week and it was good news we were told that the tumour/mass had not grown and remained stable. Though Dad had missed the last 2 of his gemcitabine chemo sessions (3:2 and 3:3) due to low blood count (neutrophils 0.9) . He is still got active cellulitis and inflammation in his legs. On Wednesday he started a new cycle and his oncologist has reduced the dose so that hopefully he will be able to complete the course.
My poor mam has been in hospital for the last 3 weeks with a fractured neck (she had a fall) and dad is unable to visit her often because of his immunity problems. We are trying to organise a care package for both of them then she can come home. As you can imagine it's more worry and stress on my poor Dad (and us!)
Jane

Fifi

Re: My lovely Dad

Postby Fifi » Sat May 31, 2014 9:39 am

Hi Jane,

My dad often misses chemo due to low bloods. He has never done a full cycle. Yet his tumour on his pancreas hasn't grown and the spots on his liver have shrunk considerably, i think the patient gets very down when they miss a session as they assume it's growing. It is great news about your dad. I bet the anxiety of not seeing your mum is very hard fir him though. I think the anxiety alone can make a big impact. Really hope you get your mum home some.

Leila xx

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad

Postby Janiebobs » Sun Nov 09, 2014 12:40 am

Hi it has been so long since I posted. Dad completed 6 cycles of Gemcitabine and his last scan his tumour has remained stable.
Unfortunately Dad's jaundice returned and after having a few infections he was admitted to hospital again and a scan revealed his stent (metal uncovered) was blocked. The consultant hoped he would be able to fit a new covered stent, unfortunately he had to order it in so the ERCP was delayed for a further week. Dad's appetite has become very small and he wasn't drinking sufficiently so we returned to A&E and while they were checking him he was given fluids.
We have started dad on Ensure high protein drinks - he wondered of he should be taking Creon?
Two days after his new stent has been fitted I can see that the yellowing of his skin has reduced. But he is still incredibly weak struggling with mobility and he seems to need to have a wee every 2 hours.
His McMillan nurse has organised the OT to see him to arrange mobility aids.
We are hoping this is a temporary blip and that his strength and mobility return.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My lovely Dad

Postby Slewis7313 » Sun Nov 09, 2014 9:53 am

Hi Jane and sorry to hear your Dad has been through the mill lately, but good that the new stent seems to be clearing the jaundice. My understamding as far as the Creons are concerned is that he must continue to take them even with Ensure.....it is the only way he can get the nutritional value and energy from any kind of food. As we also keep repeating, better too many Creons than too few.....too many are harmless!

Hope things continue to improve.


Steve
X

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad

Postby Janiebobs » Sun Nov 09, 2014 6:51 pm

Thank you Steve,
Dad has had to start taking the 10,000 Creons as he struggles to swallow the 40,000.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: My lovely Dad

Postby Slewis7313 » Sun Nov 09, 2014 8:05 pm

You can get 25,000 Creons if this helps......a little easier to swallow than the big 'uns!

Steve
X

Fifi

Re: My lovely Dad

Postby Fifi » Sun Nov 09, 2014 8:51 pm

Hi Janie,

If your dad is struggling taking the Creons and he needs a higher strength, he can open them up and sprinkle them onto chopped banana or apple sauce. Don't mix it, just sprinkle on top and eat immediatley after opening. It was Dianne and Jeni that told me this. Hope this helps.

Leila xx

PCUK Nurse Dianne
Posts: 287
Joined: Tue Aug 14, 2012 3:29 pm

Re: My lovely Dad

Postby PCUK Nurse Dianne » Tue Nov 11, 2014 11:12 am

Thanks Leila,

Great support you are giving. Janie please do feel free to be in touch with us if you do need some guidance with the pancreatic enzymes. Leila is right in some respects, and we did use to say that the microspheres (the small particles inside the capsule) from the pancreatic enzyme capsules should be sprinkled on the apple sauce/banana, however it is now recommended that it is mixed in with the toppings (ie apple sauce/banana). This should help reduce the potential problems that may result from some of the microspheres affecting the inside of the mouth. It is is also important to rinse the mouth with some water to ensure that any residual microspheres do not 'get caught' in the pockets inside the mouth as these may cause mouth ulcers (remember they are quite potent as they help to break down the food).
Don't hesitate to be in touch (support@pancreaticcancer.org.uk) if you would like some help with this.

Dianne
Support Team

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad:

Postby Janiebobs » Tue Dec 30, 2014 11:26 pm

Thank you all again for your support.
After dad had his stent replaced in November his jaundice has decreased but unfortunately he has more pain. Initially he was put on codeine but now he is on morphine (slow release tablets and liquid) and paracetamol. He had been put on steroids to help increase his appetite and he drinks Ensure to try and build him up.
My family went up to stay over Christmas and dad seemed much more reserved and down. On Saturday he told me he was in pain and the morphine was not helping so I took him to the out of hours doctor who thought dad had an infection and a noticed his lower abdomen was swollen and very painful when the doctor touched it. Dad got an antibiotic (he's allergic to penicillin) and he was told to take more morphine and see his own GP Monday.
However that evening dad was really struggling to drink without choking and I was worried that he was becoming dehydrated so I encouraged him to have more of his ensure drink before he went to bed. Then Dad was sick (dark brown and I could see the antibiotic had not been absorbed). So I called 111 for some advice and we got an out of hours doctor who when he saw my dad called for an ambulance. Dad had a blockage between his stomach and his intestines (I am not very sure if this has been caused by his tumour). This morning dad had a ERCP/OGD - another stent to help food leave his stomach. Dad is incredibly weak and needs nurses to help him get up out of bed and he hasn't eaten since last Friday. Saw his consultant who said barring infection and the bed situation Dad could be transferred back to his local hospital (he is currently at a hospital 50 miles from his home). We are all very worried about Dad.

sandraW
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: My lovely Dad

Postby sandraW » Wed Dec 31, 2014 12:23 am

Sorry to hear about your Dad, I am sure you are all very worried, especially him being so far away from home. Lets hope now he has had the stent fitted he will feel a little better, rhinking of you all, take care sandrax xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: My lovely Dad

Postby nikkis » Wed Dec 31, 2014 9:24 am

What a stressful time you have had, I am sorry. Hope your Dad starts to feel better soon, and get them to give him whatever it takes to keep the pain under control,
Best wishes,
Nikki

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: My lovely Dad

Postby LMD » Wed Dec 31, 2014 6:42 pm

Hi - hope your Dad feels better having had the stent fitted and that the antibiotic has cleared the infection?
It sounds as though you are doing an amazing job taking care of him. Thinking of you and hoping things improve and your Dad can be transferred to his local hospital. Much love x

Janiebobs
Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: My lovely Dad

Postby Janiebobs » Thu Jan 01, 2015 11:37 pm

Although the operation to fit the stent in his stomach was successful and Dad is no longer vomiting when he eats. My dad is struggling to eat as he has no appetite and not drinking. My brother who saw him today said Dad seems really down, he wonders if he has given up. Our Dad is fiercely independent and is having to rely on people for all his needs. I phoned up the ward this evening and suggested they try him on steroids as in October he was prescribed them and his appetite improved. I have asked if a MacMillan nurse could go and speak to him - he is till in the hospital 50 miles from his and my Mam's home so not in the area covered by his MacMillan nurse. The hospital are talking about transferring him to a community hospital or sending him home. He is determined not to go home as he is extremely weak and immobile and has been my Mam's carer for the last few years (she has onset dementia and broke her neck in May 2014). My Mam has a care package which has been in place since Dad was diagnosed and the carers have offered to help dad but he always refuses. My brother lives close to the hospital my dad is at, however I live 100 miles away and have to leave my parents home on Saturday as I go back to work on Monday. We are very worried and wondered if anyone had any suggestions how we could stimulate my Dad's appetite.
Many thanks
Jane

Fifi

Re: My lovely Dad

Postby Fifi » Sat Jan 03, 2015 2:18 pm

Sorry to read your dad isn't too good. I really want to help you with his loss of appetite, because I know how important it is. I don't know of any suggestions. Is there any particular food he likes the best? My dads appetite has always been pretty good, and when it has waned a bit, he has only wanted snack kind food. I think putting a meal on a standard plate, is a little too overwhelming sometimes. Could you try using a saucer plate? I know you can't get much on, but it might look more appealing to your dad.

Leila xx