She's gone

[EmmaR]

Sarah ,

Please take time off ! take rest ! you've earned it and feel happy that you mum feels so good and positive at the moment .

Emma x

[InfoForMum]

Thanks lovely ladies. The petition reaching the target gave both of us a big boost, but think I'm going to put a lid on stuff for a while and chill out with her.

XXX

[Slewis7313]

You must be frazzled out with everything youv've been doing since your Mum was diagnosed. It's great to hear that you can take it easy for a while and enjoy some time with your Mum. Also great to hear she is doing well att the moment.

Take care (both)

Steve

X

[nikkis]

So glad to hear your Mum feels so well Sarah. I have just agreed with my employers that I am going to take a year career break (they have been fab), so don't feel guilty about taking a bit of time off yourself, this is exhausting. Hope the Wunderkind can come up with something good,

Take care,

Nikki

[InfoForMum]

Not such a good time. Mum's in hospital with an infection I think is linked to her stent. She was shivering uncontrollably, throwing up constantly and high temp. Ambulance in and IV fluids and antibiotics overnight. Low liver pain on palpation & bloods, x-ray done. More vomiting overnight, was bile-like, but now also some fresh blood. No-one will speak to us! Dunno what's been found and what's planned.

Sis is here and very greatful for that as I'm poorly with cough that's bin around for six weeks. My bloods/x-ray were OK, but spiked a 39.8 temp last night.

Horridness

[sandraW]

Hi Sarah,

Sorry to hear both you and your Mum are not too good, glad you have your sister there to help look after you both, thinking of you take care sandrax

[J_T]

Sorry to hear of your mum's infection Sarah, they are a bugger those infections! Hope they get back with battle plan pretty sharpish.

Good that you have your sister around when you're not feeling top jolly yourself.

Get well soon!

Julia x

[Slewis7313]

Thinking about you both Sarah and hope things pick up for the weekend.

Take care

Steve

X

[belgrade]

Thinking about you and your Mum and hope things will improve for you both.

Hilary x

[MSH]

Hoping you and your Mum are on the road to recovery very soon.

[Cathy]

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

[RLF]

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

[InfoForMum]

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

Sarah

[Bookgirl2]

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

[InfoForMum]

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/viewtopic.php?f=26&t=1440

Take care

Sarah