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lurking on the fringes for 10 months


jay
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Im a lot stronger today, jem, I can write his name now as I was always frightened he would read my messages is a lot less confused,i have just asked him the football scores as hes watching the football channel, could tell me, hes an avid Newcastle fan,


I will ask about a shower seat, brill idea, he even managed rice, fahitas, which I cant spell and asked for salsa with his doritos last night, telling carer not to come tonight as we are planning in lying in our bed together,

thank you for all of your support, really appreciate my forum family,

love your texts rob

xx

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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PCUK Nurse Dianne

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

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Dear Jayne,

I am so sorry to hear that Jem has lost his brave fight, I can hardly begin to imagine what you are going through. You are right it is disgraceful that pain is not better managed. A hospice doctor told us that a previously fit young male can need and tolerate vastly larger quantities of painkillers than an older person with the same disease, and Diamorphine is not always the best thing for pancreatic cancer sufferers, but this message does not seem to be getting through.

I wish you and Jessica the strength to get through the coming days and weeks. You have been relentless in your determination to get the best care for Jem, and your love for each other shone through your writing, and that love will always be with you.

Take care,

Nikki

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Jayne, so so sorry you have lost your beloved Jem, as Nikki says you have done everything possible to make sure he got the best care. I am sending cyber (((hugs))) to you and to Jessica please take care and come back and visit us here when you feel able to. sandrax xx

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