A forum for any other issues around pancreatic cancer

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Reaching out

Postby rsk1974 » Sun Jul 19, 2015 4:29 pm

Hi Lisa, sending you strength and love, infections can cause confusion in dreams etc,but without being blunt it may be the cancer taking hold. Lots of love.x

Lisa Kelly
Posts: 14
Joined: Mon Jul 13, 2015 10:03 am

Re: Reaching out

Postby Lisa Kelly » Sun Jul 19, 2015 5:04 pm

I have thought of the infection too but it seems the more antibiotics he has the worse he gets. He is now on oral antibiotics as opposed to IV ones. Can't wait to see consultant tomorrow to discuss what they think they have spotted on the liver. We are all too aware that it is common to get a secondary cancer, this is what we are expecting to hear.
The nurses don't seem too concerned over his decline, I wonder if we care and see more because 1) we love him and 2) we knew what he was like the day before he was admitted...
I haven't ever really thought about the end until now.
Thank you for those who post support on here x

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Reaching out

Postby rsk1974 » Sun Jul 19, 2015 5:29 pm

The nurses are just doing their job and don't really know how your dad before he was admitted, and if they are not concerned then take that as a positive. The nurses where good with us and we asked them what to expect when the end was near. U remember on the Monday mum asked one and said I don't think he will last until the weekend and the nurse said no, dad passed away on the Thursday night. If you have the strength ask all the questions you have.x

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

Re: Reaching out

Postby LMD » Sun Jul 19, 2015 9:36 pm

Thinking of you Lisa xxx

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

Re: Reaching out

Postby sandraW » Mon Jul 20, 2015 12:32 am

Hi Lisa,
Just to let you know I am thinking of you and all the family, it is so hard, as I know from personal experience, just try to stay strong. take care love sandraxx

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Reaching out

Postby jay » Mon Jul 20, 2015 8:12 am

Thinking of you all Lisa,
love Jayne
xx

Lisa Kelly
Posts: 14
Joined: Mon Jul 13, 2015 10:03 am

Re: Reaching out

Postby Lisa Kelly » Thu Jul 23, 2015 7:06 am

On Monday, my dad discharged himself from hospital as he was determined to be at home. After treating him for an infection the doctors then thought that his stent may actually be blocked...This procedure would have meant he had to endure another ERCP, which he was strongly against. He barely tolerated the original fitting of the stent ups on his diagnosis in Sept '14, he knew he didn't want to repeat it now- being as frail a he is. Not even sure that a consultant would have even contemplated carrying out the procedure anyway.
His face was full of joy and relief as the ambulance team brought him home. He has had relatively comfortable nights. He is drinking less and resting more but there are times he is quite animated but quickly tires.
The district nurse has visited and our local hospice nurses have telephoned to start putting together a care plan. They are arranging a GP visit as she wants a DNR on his notes, should the need arise.
We are taking each and every day as a bonus and are relieved that he doesn't seem to be in pain, just exhausted and frail.
The family are supporting his wishes and are finding strength from his strong mind.
We thank you for keeping us in your thoughts.

XXXXX

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Reaching out

Postby kittycat » Thu Jul 23, 2015 8:29 am

Hi Lisa, so glad your dad is home and out of pain - he's in the best best place with all of his loved ones around him. Thinking of you at this difficult time.

Sue

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

Re: Reaching out

Postby sandraW » Thu Jul 23, 2015 11:10 am

Hi Lisa,
I am so glad your dad managed to get back home, its my only regret that I didn't manage to get Trevor back home, where he really wanted to be, but they couldn't get his pain relief sorted in time.
You all sound as though you are doing a marvellous job supporting dad in his wishes, and as for the DNR I think its important too to get that sorted, as awful as it sounds its important in our kind of cases, when death can be a blessed relief, even though we don't want to loose our loved ones.
I am send love and strength to you and all the family, please take care sandrax xx

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Reaching out

Postby Sueoliver » Thu Jul 23, 2015 9:19 pm

Hi Lisa
I am so glad your Dad is home. My Mum always wants to be at home. My Mum has a DNR on her notes as well. I found this hard but I Understand why! We also have visits from the district nurses and community pallative nurses from the hospice. They are all wonderful and supportive.
You are doing a wonderful job supporting your Dad and I am sure he is very appreciative. I know how hard it is and I take one day at a time now. My Mum's aim is to go to her Granddaughters wedding on the 29th August and I think determination and will power will get her there!
Stay strong and take care of yourself as well.
Love Sue x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Reaching out

Postby EmmaR » Sat Jul 25, 2015 12:15 am

Oh how I remember the DNR request the lovely young district nurse was in the bedroom with my hubby when her eyes filled with tears and she said to me come out to the kitchen I can't ask you in front of Jon but I think we have to have a DNR in place this reduced me to near histerics as we had been married for 51 years and together for 4 years before that and he had only been diagnosed 8 weeks before ! I said I can't agree to that but there was also an out of hours GP there and he said it won't be you agreeing to let him go it will be the PC but it would be the kindest thing to do for him ..... Still sad 18 months later but life does go on and you deal with each day as it comes but my biggest rant is still PC that Bloody Disease .
Lisa stay strong and don't give up hope !
EmmaR x

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Reaching out

Postby Didge » Sat Jul 25, 2015 12:49 pm

I despair that we live in such a regulated age that this has to be asked. For years doctors just did their stuff. I don't believe asking these questions is right. It causes lots of upset. People can ask themselves if they want their feelings known, otherwise it should be left to common sense when the time comes.

Lisa Kelly
Posts: 14
Joined: Mon Jul 13, 2015 10:03 am

Re: Reaching out

Postby Lisa Kelly » Sun Jul 26, 2015 7:32 pm

Thanks for people's kind words, best wishes and support.
Dad's appetite is improving, likely due to the anti depressant the palliative nurse team advised, but he still can't really eat. A mouthful and he has had enough.
Still taking sips of water but his urinary output is getting less, now looking at max 400ml in 24 hours. The urine is a dark orange colour and today we noticed some orange bits in it too...we will mention this to the nurse tomorrow, I assume this is due to him not drinking enough and the possible damage to his liver (be it an infection, blockage or secondary tumour).
He is now having the ascities (excuse spelling?) drained daily as opposed to every 2nd day. In the last 4 days he has had just less than 9l drained off of his abdomen.
Has anyone else got experience with the ascites? Is it normal for the amount to increase? There's no way he is taking on that amount of fluid?,
As ever, all comments taken on board and greatly appreciated.

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Reaching out

Postby WilliamS » Sun Jul 26, 2015 8:57 pm

Hi Lisa
My Dad is due to have his first ascites drain next week. His doctor said the amount to drain is not related to the amount of fluids he drinks. The ascites is fluid made by the body for example if the cancer cells irritate the lining of the abdomen and make it produce too much fluid or if the liver is damaged or if lymph glands are blocked.
I hope that the draining gives your Dad some relief and that he's comfortable.

Lisa Kelly
Posts: 14
Joined: Mon Jul 13, 2015 10:03 am

Re: Reaching out

Postby Lisa Kelly » Sun Jul 26, 2015 9:57 pm

Hi William, the draining does bring relief it just last for shorter periods of time now. Mum manages the draining at home as dad has a rocket drain fitted, this allows for regular draining. My mum is a pro at it.
Initially,Mae were told to not take more than 2l every few days (as it could affect BP and cause shock), anyway it's now 2l mostly on a daily basis. GP and nurses are ok with this as it means dad is more comfortable.
I hope your father's drain goes well and it too brings relief for him. Before dad had the permenant drain fitted, he had it drained twice as a day patient.
Thanks for posting x