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Roger was in no pain yesterday but still on fluids and the catheter. I'm concerned that they're getting him ready for coming home as they were asking about support at home with practical things and are sending the Occupational Health people to see me and also about going home with the syringe driver in place. He's eating OK really but is feeling pretty dreadful and sleeps a lot of the time which I thought was due to the morphine. Much as I want him home asap, he's not ready yet. There's no talk about doing tests or replacing his stent to ease the jaundice and although I was at the hospital yesterday by 11.15, the doctor had already been so I intend to be earlier today and request an appointment to discuss next steps. Mentally he's very alert but not fit to come home and I really do fear for the future. I know hospital beds are precious, and I do want to look after him at home, there's no way he can come home yet. Wish me luck today as I feel I'm going to need it.


Sue

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Hi Sue

My dad seems to be going through the same asRoger at the moment. He has been into hospital 3 times in 2 weeks, he went jaundiced and felt terribly sick he has biliarysepsis and they changed his stent. He is in so much pain and none of thebpain relief is working, they are waiting for a nerve block?Is this what Roger has had?

It's awful to watch your loved one deteriorate, I try stay strong when I'm with my dad then go To bit's at home. Stay strong

Alison x

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Am thinking of you and Roger and fingers crossed you get some input & answers from the hospital today. You have been so kind with your messages of support to me and J and we are so grateful. God bless you both. Xx

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Hugs Sue, glad Roger wasn't in pain yesterday, I swear you find the strength from somewhere, it doesn't get easier but you learn to live with the pain, and live one day at a time.I hope you are getting some rest and eating. I used to sleep on the hospital floor as I couldn't sleep at home thinking Jem might be in pain, (sometimes the nurses gave me a mattress to lie on )

Thinking of you both

love Jayne

x

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I didn't think it could happen but Roger is now off fluids, morphine driver and catheter although there was a bit of a hiccup with the last one when things took a little longer to get working than had been hoped. He has had an ultrasound scan which shows that his stent is blocked and will now have and ECRP? and, if it looks straightforward, then his stent will be replaced. His pain isn't quite managed yet but they're working on that and his blood sugars are all over the place but at long last we have a diabetic specialist nurse looking at that. He's proper fed up and doesn't really know if he'll come out of this and I can't blame him as it seems to be one problem after another but I can't help but try to look on the bright side and hope that he'll come home and have a bit of quality time. Fortunately he's still active and able to walk and climb the stairs (slowly), so that's a good thing and I think he's getting as good care as possible. Lets see what today brings! Sorry to go on so, but it's nice to talk to others who know what we're going through.


Sue

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Thinking of you both.My dad got admitted again last night. In so much pain while waiting for a nerve block which probably won't be done till next week. My dad has being extremely confused and forgetting everything also. You definitely have to find an inner strength. Hugs and kisses xx

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Roger is still in hospital and due to have an ECRP tomorrow when they will replace his stent in his bilary duct and insert one into his duodenum as the mass seems to be pressing on it and causing a blockage. Unfortunately they've decided to change his insulin and he only starts that today and needs to have a BS reading of over 4 when he goes for his procedures and as he will only have been on this new insulin 24 hours we're not sure how it will affect his BS - I just wish they'd have left it until after Friday. On the plus side his pain is controlled but he is quite weak and pretty fed up with little interest in doing anything at all. I look at how he was a few weeks ago and he seems to be going downhill. I asked if he will feel better after the stents are sorted but was told that gradually he may, which doesn't inspire a lot of confidence. Hopefully he will be home over the weekend and I can only keep my fingers crossed that things do improve.


Sue

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Unfortunately Roger wasn't able to have the ECRP after all. There was a terrible problem at the hospital on Thursday because of getting him to transferred to the hospital doing the procedure and the fact that Roger has diabetes and they wanted him there the night before but didn't have a bed for him, even though they knew from the Monday before that he was booked in for it. Eventually though he did get there but they couldn't get the camera down as it appears that the tumour is pressing on the duodenum and causing a blockage. This was devastating news for us but not as bad as on Saturday when they told us that Roger has just weeks left. He's been in denial and said very little on Saturday or Sunday - he still won't speak about it and it's very hard trying to shoulder it all alone. Today we will see the Doctor to discuss next steps and Macmillan will be coming to see us to offer support but I really can't believe we have come to this. It's been so difficult all through this journey and it's just getting harder and harder. I'll be glad when today is over and we know what is happening - nothing happens in hospital at the weekend and I think that is pretty poor in this day and age, but me moaning isn't going to help my lovely Roger. He doesn't deserve all this and I just pray that he won't linger too long and that the end will be peaceful.


Sue

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What can I say Sue, but I am so so sorry. The next few weeks are going to be really hard but try and show Rodger you are going to be ok. This is what worried my husband the most. I was given an extra 3 and a half weeks with Jem after they told me he would die on the operating table and some of those moments were amazing.I hope Rodger stays pain free. Massive hug

love Jayne

xxx

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I am so sorry to hear this news Sue. My Mum had a operation to bypass the bowel as the Tumour was blocking it. They said she might not make it but she did and it meant she got to see her Grandaughter married! Have they mentioned an operation? Nobody deserves this and it is heartbreaking. Try and be strong for Roger he will need to know you will be ok!

Take care of yourself as well and I am thinking of you.

Love Sue xxx

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Sue,

I am so sorry to hear your news, Trevor was just the same, he too was in denial, he didn't want to discuss things either, as Sue and Jay have already said, just try to let him know you will be fine, we all know you won't, but try to be strong. It is hard but you are doing it for him, just hold that in your heart and mind, and I am sure you will cope, you just have too.

Its devastating, but I took strength from the fact that I knew Trevor would not want to stay on the disease's terms, only on his terms. We were incredibly lucky that for us it was quick and very peaceful. I am not trying to wish Rodger's life away, I am sure as Jayne says you can still have precious time together, just enjoy every day you have, as hard as it is, and try not to worry to much about how it might happen, just go with the flow.

I am sending a big cyber (((hug))) to you all, and please let us know how you are doing love sandrax xxx

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Sue,


I am so very sorry to read this news. It must be heartbreaking for you both. My husband John appears to be having more pain and discomfort and is losing weight rapidly still despite everything being done and is so exhausted, so we too feel the end may be sooner than we had anticipated. He wants so much to be here to see our grandchild born in January. God Bless you both and spend every minute you can together. Xx

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So sorry to hear your latest news. I can relate to the way you are feeling very much. This is such a cruel disease to deal with. My heart goes out to your lovely Roger.


Much love

Julia x

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This week has been pretty bad. I still can't take it all in but most of the staff at the hospital have been wonderful. I'm there pretty much 12 hours a day as Roger feels pretty vulnerable and just likes to see me there and there is nowhere I'd rather be. He is to have an external drain fitted tomorrow if his blood clotting test today is OK and this will help the jaundice but the major problem won't change. He is still eating but very withdrawn and doesn't want to see anyone. He is pain free which is good but everyday I just see him getting weaker even though he says he feels OK - I know he's putting a brave face on for me. We are also due to see Macmillan tomorrow and I just hope she will be gentle with him - he knows whats happening but obviously doesn't want to talk about it and I hope she won't storm on as the doctor did on Saturday. Where do these people learn their bedside manner!!!


Sue

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Sending a massive hug Sue, so glad roger is pain free.Jem had a drain fitted and I was shown how to flush it. It really helped the jaundice as he had the highest bilrubin levels the hospital had ever seen , over 950.

Hope you are getting some sleep.

love Jayne

x

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Oh Sue,


How so very sad to read. I can't imagine what your lovely Roger must be feeling, but so pleased you are staying with him.


You're all he needs.


MacMillan nurses can be a little to the point. Can you try to wait for them just outside Roger's room, when you know they will be coming, and have a chat with them first. I don't think they mean to be harsh, but they are. My Dad didn't want to talk about it to anyone but me, and the macmillan nurse went straight in and said, "I'm a Palliative nurse, that means I deal with end of life care ". If I knew thats how she would be, she wouldn't have taken. Step through the door. She was very good with helping me get help with work, and with Dad's medications, but anything else they were terrible.


Take care yourself Sue. I know it is easier said than done, but you need to think and know what you are doing.


Leila xxx

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the good news is that Roger had his stent fitted and they managed to put a stent within his existing stent so no need for an external bag. The hospital then fast tracked him to the local hospice which looked fine and he certainly wasn't ready to go home, but it is not where he needs to be. I see too much there and am surrounded by death and Roger knows exactly what is happening and I'm sure I can care for him at home. I have so many questions for the doctor this morning and I'm not sure I want to know all the answers but what else can I do. We're both living an absolute nightmare and I just don't how how much more we can take. I just hope that I can get him back here this week and we can have a bit of peace together.


Sue

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