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lurking on the fringes for 10 months


jay
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Hi Jayne,


Sorry that I haven't anything any more practical to write but just wanted to say that you know you aren't alone. You have friends on this forum who know what you are going through. All thinking of you..


Cathy xx

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A miracle has happened, husband phonbed in mass panic breathless wanting all his finance stuff bringing in, he was very breathless, rushed to the hospital to find him sitting up saying panic over, I was worried about my leg as they think there is a blood clot, inflammatory marker up, im sorting this out this morning,


Was told an end of life care plan was in action on Friday, told yesterday afternoon this is no longer the case his jaundice is clearing up and his biliary sepsis, The doctors and nurses are totally amazed and cant believe it. One said we don't know how this has happened, but we think its because hes fairly young and fighting so hard. I know we still have a massive mountain to climb butat the moment im no longer going to slide off the bottom of this mountain, we are pulling ourselves up by our finger nails. I truly cant believe it

love to all . xxxxxxxxxxxxxxx

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What a fantastic bit of news! This thing changes direction so rapidly sometimes and it is good to see this has happened in a good way for a change. Keep clawing up that mountain and I hope you reach the summit!


Steve

X

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Thanks Steve,They had told hubby in the morning and with all the morphine hes on he hadn't told me, so I didn't find out until 4 yesterday afternoon.

They are now wanting to put him back on oral morphine as they say his digestive system is working again ! Talk yesterday of with drawing some of the care they had promised at home but I said I would feel more happy with the original care promised on Friday, just for a few days to make sure the pain is really under control as I don't want a repeat of the pain he suffered for five weeks before drain was put in last Tuesday.

x

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Dear Jayne,

I opened your post with trepidation this morning, to find such great news. What an incredible man you have there. I think you are right to want the care package, you both might feel anxious when he comes home, and having people coming in initially will really help.

Take care,

Nikki

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Brill news this billary sepsis is a little B as well but at least everything as clicked in and he is on mend, remembered when beloved had it, thought he was on his way out but that morning when he got up and said *im going to maw lawn* well you know how I felt , Just need to get your leg on the mend know take care x

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Jayne, that's fantastic news, I'm so pleased for you. Hope you get him home soon with support the need, until you are both comfortable again. Hope your little girl is OK too.


Fiona X

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Sorry im not on much but live at the hospital to keep an eye on his care !!!!! hES DING SO WELL, WALKING A LITTLE, BUT HAS BEEN AWAKE MOST OF THE NIGHT WITH PAIN, ORAMORPH NOT TOUCHING IT, I THINK HE NEEDS TO GO BACK ON IV PAIN RELIEF, PHOEND PALLIATIVE CARE AND LEFT A MESSAGE AND WIL PHONE THE WONDERFUL NURSES ON HERE AT TEN, SORRY IM IN CAPS AS OFF TO HOSPITAL TO HELP SHOP MY WONDERFUL HUBBY,

I HAVE ENOUGH MATERIAL FOR A PANARAMA EPISODE ON HOSPITALS, IVE SLEPT THERE FOR 5 NIGHTS!

X

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Hi Jayne,

So pleased to hear that he is doing so well. It does sound like he needs to be back on the syringe driver, oramorph has never touched Paul's pain, you must be so frustrated and exhausted. Have you got a hospice nearby who could take over his care? Ours have been fab at supporting us and keeping Paul out of hospital for the past year.

Take care,

Nikki

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Drain was taking off Wednesday by morning 8 hours later in pain, went in to see him Thursday morning, rolling eyes, jerking, told me it was because of the morphine, I spent the next four hours telling them the jaundice was back, they were wanting to discharge him eventually after blood tests I was right, drain bag back on hes come back, registrar (one who wanted to discharge him !)said 2 days of antibiotics, consultant said 5 days antibiotics , went in today to find out registrar has gone back to his own plan and is finishing antibiotics at the weekend, im checking with nurses tonight and will e mail his consultant in the morning for clarification as when the cxare plan has changed again !!! On the plus side he is improving and starting to eat again, hubby told registrar how little he'd eaten today, registrar replied you've eaten as much as me, in fact more, so im taking the lovely registrar two muffins tonight !!!!!!!!!!!!!!!

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Hes home,but not good at all, registrar said a few days or a few weeks, hes not in pain, just sleeping, eating a little, just totally heart breaking to watch, he was the spit of Gary Barlow and now looks like hes 80, I just cant believe how its happened so quickly,hes so thin, frail, cant hardly speak as his voice is so croaky,i keep going into the garden to cry,jem is seeing no more of my tears!

x

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Ahhh Jayne, I am so sorry and sad to read your lines. It is an awful illness! It must be heartbreaking for you now. How is your daughter? How is she coping?

Please keep strong, I am thinking of you a lot!!!

Susanna xxx

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Dear Jayne,

I am so very sorry, I hope you are getting lots of support. You have been amazingly strong and wonderful, so don't worry about having to let it out.

You are always in my thoughts,

Nikki

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As hard as it is at least he's home and you can be with him. Our saddest thoughts was dad was 4 days from being sent home and having palliative care but passed away in a London hospital at 1am, we couldn't get there in time to say goodbye and how much we loved him.big hugs to you, you are doing a fantastic job.

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Jayne, I'm sorry to hear of your husband's struggle and really understand the need to be alone to cry. You sound so strong to be able to hold it together at all. My thoughts are with your, your husband and daughter. Fiona X

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Jayne I am so sorry you and your family are in this awful situation. We were in this situation in Feb this year. Bringing my husband home knowing that there was nothing more to be done was heartbreaking. We had wonderful support from our GP and district nurses. Stuart's wish was to be at home and I am so glad he was. If you need any aids for the home like a shower seat your district or MacMillan nurse will sort it out.


I used to go in the garage for a good cry. I think it is important to let it out. My thoughts are with you, best wishes Sue.

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Hello Jayne,

Just wanted to say 'Hang on in there'. This is a terrible time for you all and nothing can take the pain away for you. We are all thinking of you and your family.

Hilary

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You know my thoughts are always with the 3 of you cos I'm bothering you all day by text but I'm adding my extra support here and let those tears flow when you need to, nobody can be a rock 24/7 xxx

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