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

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
raun cesar
Posts: 30
Joined: Thu Mar 02, 2017 9:22 am

Re: Our story...

Postby raun cesar » Tue Jun 06, 2017 9:25 am

Attitude is what change things and it seems your stepdad got it. I wish you all the strength to support him. As a carer your mom can claim allowance…Good Luck!!

WhatEvenisaPancreas
Posts: 9
Joined: Sun May 14, 2017 12:14 pm

Re: Our story...

Postby WhatEvenisaPancreas » Fri Sep 01, 2017 9:17 pm

Hello everyone,

We are in a very, very different place now unfortunately. I'm not really sure where to turn or what the answer is, or what to even say, so I'm just going to spill it out as it comes.

My step dad is now a shadow of himself, he was slim to begin with but has lost a lot of weight (in the past 4 weeks he has lost 21lb) and looks horrific. He doesn't eat (hasn't eaten since Monday) and spends all but an hour or so in bed everyday. He is constantly tired.

He finished his first round of folfirinox, the scan showed the tumour in his pancreas had shrunk and the lesions in his liver had begun to die. For one reason or another he ended up having 9 weeks or more off before beginning round 2. He had the first lot, went back to the oncologist for his bloods to be taken ready for his next dose and they refused it as he'd lost 13lb.

He's since decided he's not having any more chemo any way and has had his PICC line out.

I don't know what to do. Neither does my mum. He's just wasting away! He's tried the drinks, they give him heartburn and won't drink them, he's on steroids which sometimes make him feel hunger but every time he eats he pukes it back up (he's just puked back his coffee for goodness sake) and so doesn't want to eat because he doesn't want to puke.

The oncologist is organising another scan to check what's going on, which scares the living stuff out of me, and wonders if there is perhaps a blockage.

Is there a blockage? Is he just dying? Is this what happens towards the end? I guess what I'm trying to ask is is this normal??

He has never asked about a time frame. This is the most stressful thing I've ever endured! Please shed some light if you're able. Xx
Last edited by WhatEvenisaPancreas on Fri Sep 01, 2017 10:32 pm, edited 1 time in total.

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Our story...

Postby Justamo » Fri Sep 01, 2017 9:47 pm

Kathryn, I'm so, so sorry to hear this news. I don't blame him one little bit for not wanting to eat when all he does it throw up.

My darling cousin died quite recently. Despite being a professor of medicine she forgot all about her training and asked her own doctor what was going to happen 'at the end'. She was told that gradually she would eat less and less, drink less and less, and sleep more and more. And then she wouldn't wake up. Sounds very simplistic, but it comforted Joan and therefore it comforted her partner and me. And that's exactly what did happen - at home, in her own bed, with her dog lying beside her and her partner holding her hand.

You will get some very sensible and informative answers from others on this forum, I hope they can help you. Meantime I am thinking of you and your mum and praying for you all.

Love and hugs
Mo

WhatEvenisaPancreas
Posts: 9
Joined: Sun May 14, 2017 12:14 pm

Re: Our story...

Postby WhatEvenisaPancreas » Sat Sep 02, 2017 5:55 am

Mo, thank you. I think the problem is that I have never really accepted that this would kill him. He seemed pretty invincible. This is all just so sad. I really struggle to know what to say to him, how to be around him etc. Just all so heartbreaking.

Constant crashing waves of realisation. X

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Our story...

Postby Veebee » Sat Sep 02, 2017 1:35 pm

Hello I'm sorry to read that your stepdad and your Mum and yourself are at this stage of this dreadful disease. I don't know what else to say to you but just be with him and make sure he knows that he's not alone. The hard reality of the situation with my late husband didn't dawn on me until his last hours and even then, I thought he had a UTI and he would have antibiotics and hang on somewhat longer. We go on so long with them through the ups and downs of this illness that when the actual time comes for us to face up to the facts, then, we want to believe that they'll hang just a bit longer and, maybe, rally once more. My thoughts are with you all. xxx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 9:38 pm

Re: Our story...

Postby Justamo » Sun Sep 03, 2017 7:08 pm

Thinking of you Kathryn, and hope you're coping.
Love, Mo

WhatEvenisaPancreas
Posts: 9
Joined: Sun May 14, 2017 12:14 pm

Re: Our story...

Postby WhatEvenisaPancreas » Mon Sep 11, 2017 8:48 pm

Hello everyone.

Unfortunately, or fortunately perhaps, my step dad passed away in the early hours of yesterday morning.

The very next day after sending my last post he was taken to hospital. It turned out it wasn't the coffee he puked, but dried blood. They gave him fluids and waited until he'd eaten a meal, kept it down, and then discharged him. The following evening he was taken by ambulance to the hospital after continuing to puke old blood where, thankfully, they admitted him. They ran some tests, gave him xrays and put a camera down his throat and couldn't find active bleeding, only an ulcer at the bottom of his esophagus which they assumed had been bleeding.

His red blood cell count was very low so they transfused him with 3 units over the course of 3 days but it didn't make a difference. Nobody really explained how poorly he was, although we had an idea.

He was admitted Sunday evening, and whilst visiting Wednesday evening he became very anxious and delirious, seeing cracks in the wall, restless etc. And the following morning we had a call from the nurse to say he had deteriorated significantly and he'd been put on a syringe driver. She advised us to go, and so we did.

He was conscious, he explained he was told there was nothing more they could do and whilst he wasn't worried about dying, he was worried about us. We had time to talk though his worries, reassure him, and spend such lovely quality of time with him, reminiscing, laughing and joking. We spent the entire day and night with him and by the evening he was quite out of it, sleeping a lot, waking up and giving us a smile. It was a lovely time, yet so sad. They fast tracked the getting home process and he was able to be taken home the following morning at 10am.

By this point he was unable to hold a conversation and was very sleepy but unable to rest as he was puking blood every 15 minutes. It was a fight to keep his symptoms under control. Thankfully, Saturday evening after another call to 111, some hit squad angels disguised as community nurses arrived and actually sat us down and had a conversation with us. They explained he was hours away, what to expect, and prescribed his everything they could. From then on he was absolutely peaceful. No more blood. It was a lovely time where we could spend time together, talk to him, have him squeeze our hand and reminisce.

I just wanted to share my experience and to say thank you. Whilst I didn't post often, I read a lot and was always amazed at the support on offer and the honestly and vulnerability of the posts. This really is an amazing place.

To those people still coping, I wish you all the very best and send you all my love and strength.

Kathryn xxx

sandraW
Posts: 1028
Joined: Thu Oct 31, 2013 5:38 pm

Re: Our story...

Postby sandraW » Tue Sep 12, 2017 9:17 am

Kathryn,

I am sorry to hear your step dad has passed away, this disease is relentless, it is truly horrible.
Even though your Dad dd not have an easy passing, I am glad you managed to get him home and that the "angels" gave him the help he needed.
As you say the forum is an amazing place, I got lots of support when I needed it too, sending you love, strength and a ((hug)) for the next stage of this journey, take care sandrax xx

Veema
Posts: 476
Joined: Mon Feb 02, 2015 5:35 pm

Re: Our story...

Postby Veema » Tue Sep 12, 2017 4:09 pm

So sorry Kathryn...there are no words that will make you feel any better, but you can take comfort from the fact that his death was peaceful and you were with him.

Much love and strength...my Dad died 2 weeks ago and I'm finding it much worse than when my husband died...you just expect them to be around forever.

Vx

PCUK Nurse Jeni
Posts: 1002
Joined: Mon Jun 14, 2010 12:30 pm

Re: Our story...

Postby PCUK Nurse Jeni » Wed Sep 13, 2017 4:04 pm

Dear Kathryn,

We are very sorry to hear of your stepdad's passing.
Sending our condolences to you and your family at this sad time.

Kind regards,

Jeni.

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