A forum for any other issues around pancreatic cancer

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Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Time

Postby sandraW » Tue Aug 14, 2018 11:38 am

Fairy, I am so very sorry to hear about your Mum. The feelings you have about not having done enough are what we all feel, because we love them so much we want to do all we can to help make them well again, but unfortunately we can't make that happen as much as we wish we could.
My husband was in denial too, that was his way of handling it, who can blame them, it takes someone very strong to face up to something so serious. I am sure your mum is frightened but I am sure the hospice will understand this and adjust her drugs to make it easier for her.
All I can do is send you love and strength to help you and your mum face this difficult journey, my husband in very similar circumstances to your mum, just went to sleep, it was very peaceful I wish the same for your mum, sending love and hugs sandrax

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Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Tue Aug 14, 2018 7:04 pm

Thank you so much for your kind words. I just hope as you say the hospice can find the right drugs to keep mum comfortable. Think that’s about all I can hope for. Sending you some love too, I’m sure losing your husband has been so very hard. Thank you for caring enough to post,
Love from
Fairy x

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Joined: Wed Jun 20, 2018 7:22 pm

Re: Time

Postby Kerry » Tue Aug 14, 2018 10:02 pm

Fairy please don’t feel guilty. The pain of seeing a parent going through this is more than enough to bear and from what you’ve said you can’t of done anymore.
I’ve said it before but this disease is cruel and wicked. We can only do our best to support our loved ones each step of the way and take each hour of each day at a time.

My poor dad has gone downhill today. The nurse spoke to me today to say he had entered the ‘deterioring’ stage and the doctor later told us he was now in the ‘dying stage’. Even though I knew it was coming it’s still so hard to take in. I’ve been offered some counciling at the hospice and I’ve decided to accept. I have so many emotions all mixed up and although I’m sure it’s normal I decided it may help to talk to someone outside of the family.

I truly hope you find some support and I hope your mum is kept as comfortable as she can be.

Kerry xx

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Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Fri Aug 17, 2018 11:06 am

I am truly sorry to hear about your dad, there is no limit to this disease and it’s wickedness.
I think counselling sounds like a way to talk some of your feelings out, it’s so hard to know what to do with it all.
The hospice are talking about sending mum home next week if she remains stable over the weekend, part of me is pleased and part of me terrified at what comes next. Do I give up work to care for her as she deteriorates, how do I know when the time is right? Feels like I’m flailing around in the dark. Can I get the help at home that I need at the right time? No answers really, one day at a time.
Please stay in touch, sending you love at this very difficult time xXx

Posts: 11
Joined: Tue Jul 24, 2018 9:25 pm

Re: Time

Postby Fairy » Tue Sep 18, 2018 10:34 pm

PCUK Nurse Rachel R wrote:
> Hi Fairy
> I am glad to hear that Mum is going to the hospice for a time and I do hope
> they are able to get on top of her symptoms. Please do keep us updated.
> Thinking of you.
> Rachel
> Rachel Richardson
> Pancreatic Cancer Specialist Nurse
> Support Team
> Pancreatic Cancer UK
> email: nurse@pancreaticcancer.org.uk
> support line: 0808 801 0707

Dear Rachel,

I am sorry to bother you but tonight I find myself at my mums, staying the night for the first time as she’s really not very well. She has her syringe driver with ranitidine, metaclopromide and oxycodone in it. She’s taking gabapentin too 600mg three times a day, lansoprozole and paracetamol. She fell yesterday trying to go to the toilet, I managed to get her up with a struggle and I think she’s lucky to have escaped with bruises.
Her appetite isnt great but she’s really only complaining of tightness around her tummy says she feels it’s gripping her. I have liquid oxycodone that I’m allowed to top her up with so one day at a time.
I am concerned about her urine though it’s so dark like mahogany......the hospice said that as her most recent scan showed the cancer had invaded the liver I presume it’s that that is causing the problem. This probably sounds daft but she smells different too, the jaundice is awful. She is sleeping all the time now, I’m hoping Marie curie nurses can help me overnight sometimes, I’m a wife and mum to three kids with a full time job, I have so much to organise. My head is overloaded.
I just hope she’s not in too much pain, she’s had enough now. Thanks for listening, Amanda xXx

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Joined: Thu Oct 31, 2013 5:38 pm

Re: Time

Postby sandraW » Wed Sep 19, 2018 8:31 am

Just wanted to respond to your post, this is exactly how my husband was, it will be the jaundice that is causing the dark urine. And I also understand what you say about your mum smelling different too that also happened with my husband. I hope you can get some help, as its so tiring for you too, sending love and a hug sandrax xx

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Time

Postby PCUK Nurse Jeni » Thu Sep 20, 2018 5:04 pm

Hello Fairy,

Sorry to hear about your mum, and that she has had a fall - just wondering, did you call the ambulance when she fell to make sure she was ok? Has she complained at all since then, or is there any obvious injury? Has the gp checked her over or not?

You mention the tummy feeling tight - does she have any fluid in her tummy at all, are you aware or not? And if so, has she been given any offer to treat this? Sometimes, fluid can accumulate in the abdominal cavity, and this can cause the tummy to feel tight - many would describe it as a "pregnant belly" or being tight like a drum, so to speak. Is she feeling uncomfortable at night trying to get into a comfortable position? Have you been using the oxycodone at all, and how often have you had to use it? Has anyone reviewed her medication at all?

As Sandra has said, the urine issues will be caused by the jaundice - do you know if she has a stent inserted at all? Is your mum just under the care of the gp now?

Have you had a referral done for Marie Curie? Are you able to see your own gp for some help with regards to some time off? It does seem as though you have a lot on your plate right now, and it might be good for you to have some time to allow you to concentrate on your mum right now.

Please do contact us at the below email address should you need to.

Kind regards,


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