A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Joined: Fri Mar 15, 2013 5:43 pm

Re: A New Chapter

Postby Cathy » Fri Apr 18, 2014 5:22 pm

Hi Sarah

So sorry to hear this.

Let us know when you can how your Mum is and hope you feel better yourself too

Cathy xx

Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: A New Chapter

Postby RLF » Sat Apr 19, 2014 9:04 am

I'm sorry to hear you're having a rough time at the moment and hope you both feel better soon x

Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Wed Apr 23, 2014 4:38 pm

Been horridly lax looking after you guys so thanks for still looking out for me and Mum. Steve - hope you're in or imminently off to Cyprus! Cathy, hope you're not on the hook for snagging the greenhouse if you messed it up, but then again the company sounds like a revisit would be worthwhile! Nikki, hope Mr Nikki is bearing up - I've been horrifically bad searching out your updates and think of you both often.

Mum's still in hospital. She's not eaten more than half a meal or drunk more than a glass of water (cumulatively) for a week. Infection (was cholangitis e.g. bile duct infection) now under control and liver function improving (bilirubin decrease stalled at 100 for a couple of days from pre stent replacement 150, but now down to 50). She's very very fatigued and a bit confused though. Part drugs, part lack of food (she's on fluid IV) and part anaemia. On top she's developping pressure sores as she's only comfy pain-wise laying on her side and doesn't want to be out of it for more than a few minutes a day.

Turns out she also has duodenal ulcers. Looks to be tumour growth through. Very big shock for her and still seems to be bleeding now. Even when that was suspected some bright spark stuck doggedly to ward routine of anti-coagulant injections so days 2/3 she was throwing up fresh blood. Now less fresh, but still vomit with blood every day to 2 days. Possible transfusion tomorrow as haemaglobin down from 12 to 10 since yesterday (normal to wait until 8ish before as transfusing has it's own fun factors.

She told me 2 days ago she just wanted to fade away. I told her that wasn't an option as I wanted to take her home and dying would put a kink in that plan - she thankfully laughed. I've organised palliative specialist nurses to come in - referral should have been 6 days ago, but someone didn't do it. Also going to have to make some plans for care package at home eventually.

Was getting my info in dribs and drabs until this pm. Was obviously hacking off one prickly nurse by asking about this and that so resorted to having a total sobbing meltdown in front of the reception desk (not a hard reach to achieve as have been feeling very out of control and worried). That's rallied the troops and now feel she's being cared for as needed (she was mainly already, but a couple of things had been missed and no-one felt any need to talk to me).

Fingers crossed she picks up or i'll be asking my sis to come back down (she left on Tuesday).

Love to all


Posts: 13
Joined: Sat Jan 04, 2014 9:05 pm

Re: A New Chapter

Postby Bookgirl2 » Wed Apr 23, 2014 4:51 pm

Hi Sarah

We haven't 'spoken' before but I just wanted to say hello and send my best wishes for you and your mum. It really touched a nerve when I read that the palliative care nurse referral hadn't happened when it should. This happened too many times with my mum and she never did get the proper care she needed until the day before she passed away so it is worth keeping very much on top of that (as I'm sure you are!) It's great that you are able retain your sense of humour and make your mum laugh - it's so hard at times like keep smiling but it must help her so much that you can maintain a light-hearted manner some of the time even when you are crying inside. I do hope your mum rallies enough to come home with you soon. Very best, Susan x

Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: She's Gone

Postby InfoForMum » Tue May 27, 2014 11:06 pm

Hi all,

The subject doesn't quite say it all, so I've broken a habit and posted Mum's final story in the right forum.

http://forum.pancreaticcancer.org.uk/vi ... =26&t=1440

Take care