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lurking on the fringes for 10 months


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When i arrived at the hospital yesterday husband had just been told he was getting his stent fitted at half 3. It was 2 o clock and there was a little confusion as he had eaten some lunch but in the end that was fine as he was just sedated. Had to lie totally horizontal for 6 hrs afterwards which made trying to pass water extremely difficult.


Lyn- what a lovely thing for your Grandaughter to say, children definitely keep us going

Jayne

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Hi Jayne,

Glad your husband has finally got his stent fitted and that he is feeling a little better and that he is eating, I hope he continues to improve and that he is soon back home.

Children are certainly amazing, love the bit about the biscuit, must be very hard for you with a young child, but as you say you have to keep going for her sake, and a brave face does help somehow.

We are still waiting for the appointment for Trevor's scan, was supposed to have been requested on 1st August but found out yesterday that as the Professor was on annual leave it wasn't requested until Friday last week,the 15th. We had a few days away with our granddaughters last week and I was worried that we might miss the appointment, certainly glad we went now, bit cross about it really, but what can we do, we are only one of many.

take care sandrax

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Jayne,

So glad to hear it has been done, hope he is starting to feel the benefit. That's a wonderful analogy from your daughter, a future as a writer for her maybe? Our eldest got her GCSE results today and has done incredibly well, despite all the stress of the last year. They make you so very proud,

Best wishes,

Nikki

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Hes home and a tiny bit better ! Sleeping quite a bit with the morphine.


Sandra- glad you got away with your Granddaughters last week and hope Trevor gets his scan appointment soon.

Nikki- fabulous news about your daughter.

I had palpitations last night for two hours, not going to drink as much coffee today, and planning on sleeping in the spare room as I constantly ask him every half hour, how are you and do you want a hot water bottle. Doing his head in !

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Jayne,

I know what you mean about the checking on how he is, just hope you sleep better in the spare room, I tried that but kept waking up as I was dreaming he was shouting for me, so went back in our bed, and just kept quiet.....hopefully tonight you will be so tired you will sleep.

Nicky huge congratulations to your daughter on her results, you have every right to be proud of her.

take care both sandrax

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Thanks Ladies, I was dreading this day back in January, thinking we would be without Paul, but we all went to the school today and then for lunch. He is suffering from over indulgence now though! She actually got 10 A* (doesn't get it from me!).


If I had a pound for every time I ask Paul if he is ok, and he tells me I only asked 5 minutes before!

Hope you sleep better tonight Jayne, I think at some point your body is so exhausted it just gives in to sleep.

Hassle them Sandra if that appointment doesn't come soon, the not knowing is unbearable.

Nikki

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Jayne, glad things seem to be getting a bit better. Your daughter sounds gorgeous, what a lovely thing to say and your granddaughter too Lyn.


Nikki, your daughter is brilliant to get 10A* at any time! but with everything you've got going on and it's widely recognised that the exams are that much harder this year. What a star and how proud you must both be.


Fiona X

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PCUK Nurse Jeni

Absolutely amazing Nikki! WOW!


What a star she is herself - you must have had broad smiles on your faces all day. What an amazing student in such a difficult time as well.


Congrats to her - the future is wide open to her now.


KR,


Jeni.

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Husband is still in agony, pain in stomach and back. Phoned hospital for advice but as hes discharged suggested I take him to his GP, the one who missed his jaundice two weeks ago and said his urine was a funny colour due to oramorph.

He wont go to a and e.

Does have an appointment with his GP tonight but ive also e mailed his surgeon asking for advice.

The snowball is just getting bigger and bigger !

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Hi Jayne,

Sorry to hear your stress continues. I don't know anything about the type of stent your husband has, but when paul a plastic stent before surgery he was in agony. They x rayed and found it wasn't quite in the right place. They pulled it out slightly, it was still painful for a couple of weeks but much better.


Hope things improve soon,

Nikki

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Thanks Nikki,Got some fantastic advice form Jeni on the site this afternoon, have printed it out so he can tell his doctor what to look for. Also excellent advice about pain relief.

Husband asked the registrar on Wednesday would he be getting an x ray to check stent was in the correct place, his reply it is as you are not jaundice !

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Jayne,

Hope you get something sorted for your husband this evening with the GP, good old Jeni, at least you are armed with all the info to get some help. I suppose its difficult for the GP's as they don't know much about PC, we have no confidence in ours at all, but lets hope with Jeni's guidance they can sort something for you take care sandrax

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GP said no infection from stent- you have cancer that's whats causing the pain !

When he came in from doctors was so ill I wanted to phone an ambulance but he refused saying he was shaking with the cold. Had a terrible night BUT TEMP WAS OK, took his temperature at half 8 it was 38.9, straight to a and e, straight into emergency part, as blood pressure was so low, heart racing, rigors, very confused.

Hes been admitted think its infection caused by the stent,hes on a drip, catherter, and oxygen. Had an ultra sound and they want to check his latest ct scan but it was done at the hospital he had his stent, different trust so sorting it out,

Hes had a comfortable night.

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Grrr. It is so easy to put things down to the cancer, doctors have looked at me sadly when I have suggested in the past that Paul's various problems are caused by something other than the cancer, but I am usually right! You must both be so fed up that he is back in, waiting for things to get sorted again.

Thinking of you,

Nikki

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Oh love feel for you (was trying to stop off sight while we are not at hospital for six weeks but its addictive) this sound just like beloved when he had his sent everything fine only home 4 hours back to a and e with tremendous paid, turns out his stent had hit some gunge. as you blood pressure was so low, heart racing on a drip, anti biotics catheter, and oxygen , ended up having a catheter bag to drain gall bladder as full of black stuff (full story on one of my posts) he in the right place but its a weekend and hospitals at weekend I don't like keep strong x PS to all who are dealing with this you know the person who is dealing with this B go with what you think I would say you are usually right most of the time if something is wrong x

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ah thanks wacky, have texted hubby about possibly stent has hit gall bladder, sounds very similar,


Nikki- in future I am going with my instincts and not going to be fobbed off anymore


When I took socks off at hospital he had rash on his feet, doctor put pen round to track rash when he became more with it an hour later husband said what are those black dots on my feet, I know I had a rash from scratching, had doctor and I in fits,!!!!

Also when registrar asked was his temperature normal I replied yes its 36.5, it was then I realised he was talking to the nurse!!

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Jay, it just beggars belief the way that people are treated by GPs, especially, they definitely need to improve and hospitals, although I know all aren't bad. I think it's good that you answered re his temp, at least you know what's going on and he's lucky to have you in his corner. Throughout all this I really worry for those vulnerable people on their own what with lack of interest to investigate by GPs, confusion at hospitals and patronising Macmillan nurses, all of these seem to think that PC is always a death sentence. It has got to change.


Hope you both manage to get home and done semblance of normal soon. Fiona X

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Fiona you are so right. I really worry about people who don't have anyone to fight their corner. Cant believe my husband was displaying all the original pc symptoms 5 weeks ago, same ones he had in October,and GP missed them.

His infection level in blood are decreasing but his bilirubin levels are increasing. They say he might have a small infection which is causing this, presume they mean a different infection to the sepsis which is in his notes

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Husband is extremely ill with biliary sepsis. he's getting moved to the regional centre tomorrow. Hes been practically unconscious today. Horrendous yellow colour and seeing things due to the toxins in his brain.

Jayne

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Hi Wacky, just read about your husbands infection with his stent, feel a bit better he was out of it for a few days, hope that doesn't sound awful and hope you know what I mean. x

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Still the same, except slightly more yellow the nurse said this morning. His fabulous surgeon has e mailed me back saying he will take a look at him and see what he can do today. x

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Dear Jayne,

You poor things. Hope the transfer goes smoothly and things start improving for you. Glad the surgeons coming, sounds like he is the man to make some decisions.

Thinking of you both,

Nikki

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