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

Re: lurking on the fringes for 10 months

Postby jay » Mon Sep 15, 2014 11:45 am

didn't sleep in our bed as hes used to the head part being raised on the hospital bed, but I slept on the sofa, much better sleep, sent carer away again last night as at the minute im doing all the care and jem feels uncomfortable with them in the house.
Just been shown how to fill my own syringes with saline to flush his drain as the ones ive been using you can only get in hospital, hes had a yoghurt and cereal bar for breakfast, not as confused,
love Jayne
x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: lurking on the fringes for 10 months

Postby Bowie » Mon Sep 15, 2014 8:20 pm

Jayne, glad you've got him home. Completely understand about Jem not wanting others in the house, I know that James would feel the same. Thinking of you both and hoping everything is as good as possible. Fiona X

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: lurking on the fringes for 10 months

Postby sandraW » Mon Sep 15, 2014 10:08 pm

Jayne, you sound you as though you have everything under control, and doing things the way you and Jem want to do them, good for you. But just don't do too much, thinking of you both take care sandrax

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

Re: lurking on the fringes for 10 months

Postby jay » Mon Sep 15, 2014 10:31 pm

hes eaten today and would you believe it came with me to the bank, shattered afterwards, I forgot identification and went back by myself, the clerk said your husband looked ill, I burst into tears,but im truly blessed for having this extra time
xxx

SusannaUK
Posts: 112
Joined: Wed Aug 20, 2014 3:32 pm

Re: lurking on the fringes for 10 months

Postby SusannaUK » Mon Sep 15, 2014 10:48 pm

Jayne, it's so hard. I am not surprised that you burst into tears. But you are doing a fantastic job, you keep everything under control.
I am glad that you are together at home and even he got tired it is good that he was able to go out a little bit with you.
How is your daughter?
Thinking of you a lot!
Susanna x

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

Re: lurking on the fringes for 10 months

Postby jay » Mon Sep 15, 2014 10:53 pm

Our daughter seems ok but keeps saying I think hes a bit better do you
,getting used to the night carer, hes lovely, doesn't mind me sleeping on the sofa as hes in the other room, x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: lurking on the fringes for 10 months

Postby nikkis » Mon Sep 15, 2014 10:54 pm

It's being able to do the little, ordinary things together that is so special isn't it Jayne? Glad to hear it sounds like you are coping so well, I am sure it is your care and love that has made Jem a little stronger.
Nikkix

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

Re: lurking on the fringes for 10 months

Postby jay » Fri Sep 19, 2014 7:06 am

Jem died on Wednesday afternoon.I cant believe Ive just written that, it feels like im dreaming, in fact the whole of the last 11 montns has been a horrible nitemare.
He suddenly developed horrendous pain on Tuesday morning, oramorph did touch it, phoned for an ambulance. Hospital tried iv moprphine but that didn't work. I remembered after the drain was fitted they tried pethadine and iv buscapan. Nurse went running down to maternity for the pethadine which kept the pain manageable on Tuesday night but by the Wednesday morning the pain was back and they had to sedate him
It was truly peaceful in the last few hours. I got to say everything I need to say and climbed right into the bed with him. My heart is totally broken but I will stay strong as I promised Jem I would look after our wonderful daughter Jessica and that I would be ok,
Jayne
x

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

Re: lurking on the fringes for 10 months

Postby jay » Fri Sep 19, 2014 7:07 am

sorry typing too quickly oramorph didn't touch the pain, I did tell the nurses and doctors that in 2014 its disgraceful pain is not managed better!They said Jem was one of the people morphine iv didn't work on, x

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

Re: lurking on the fringes for 10 months

Postby Didge » Fri Sep 19, 2014 7:42 am

Jayne, I am so so sorry to hear your sad but inevitable news following the recent deterioration. My heart goes out to you and your daughter. I will be thinking of you in the days to come. No more pain now for your darling. lots of love x

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

Re: lurking on the fringes for 10 months

Postby Sueoliver » Fri Sep 19, 2014 7:45 am

I am so so sorry Jayne there are no words. Stay strong for your daughter and take care of yourself. Thinking of you. Sue x

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: lurking on the fringes for 10 months

Postby wackywacky » Fri Sep 19, 2014 8:57 am

So sorry Jayne im no good at this but thinking about you and your daughter take care x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: lurking on the fringes for 10 months

Postby Bowie » Fri Sep 19, 2014 9:43 am

Dear Jayne, I am so sorry to hear your news, but at least Jem is out of pain and at peace knowing he's got you to look after Jessica. Thinking about you both and crying as I type this at the unfairness of this b*****d disease, causing much suffering and
leaving loved ones bereft. Fiona X

PCUK Nurse Dianne
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: lurking on the fringes for 10 months

Postby PCUK Nurse Dianne » Fri Sep 19, 2014 10:58 am

Dear Jayne,

I am sorry sorry to hear your sad news of Jeremy's passing. On behalf of Jeni and myself please accept our heartfelt condolences. We know that you have been a rock, and an amazing carer over these past very difficult weeks. Please do not hesitate to be in contact if we can help in any way.

Our deepest sympathy to you and Jessica.

Dianne & Jeni
Support team

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

Re: lurking on the fringes for 10 months

Postby jay » Fri Sep 19, 2014 11:06 am

Thank you so much to everyone and the wonderful Dianne and Jeni, I just wish the doctors and nurses at the hospital had just half your knowledge,
Jayne
xxx