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kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Tue Sep 01, 2015 7:58 am

Well, things are not good at the moment. Roger is in hospital for the second time in a fortnight. The first time he had a chest infection and had a dreadful time in hospital. Then last Friday he was in awful pain with his back and pain and discomfort in his stomach but the GP decided he didn't need a visit, just an increase in pain relief! Later that day he was admitted to hospital where they believe he has some sort of blockage (he is going more yellow every day so it could be his stent is blocked), but on Thursday we saw the oncologist who thought that there was something more than the CT scan was showing and that it would be discussed at the end of this week. I think anymore Folfirinox is out of the question because he has had 6 cycles and reacted so badly to all of them that his quality of life has been seriously impaired, but at least we tried. It was suggested that he has no more chemo until there is movement on the tumour and then go for Gemcetabine but I'm conscious that he's just had Nanoknife and that needs chemo to do its job.

In the meantime Roger was in a lot of pain and was constipated too. They x rayed his abdomen to look for a blockage which showed that it was distended and thought that once his bowels were opened things would settle down. He is on a syringe driver for the pain and it is just good to see him pain free at last. Nothing much has happened over the weekend because it just doesn't in hospital does it, but at least he's comfortable at the moment and hopefully we'll have more news soon. He's pretty well wired up with fluids, a catheter, syringe driver and another attachment in his arm for dealing with breakthrough pain but he's not too bad in himself, cheerful most of the time at least. I'm not sure if he's going to come through this or what's going to happen next and its pretty scary and I just down't know how you all cope. I just hope we have some good news today.

Sue

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Roger's Story

Postby WilliamS » Tue Sep 01, 2015 8:12 am

Every day is different - this disease really is a rollercoaster. Fingers crossed for better news this week. Best wishes.

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

Re: Roger's Story

Postby jay » Tue Sep 01, 2015 9:22 am

Massive hugs Sue, thinking of you both. love Jayne
x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Tue Sep 01, 2015 10:07 am

Thank you, Jay, I see you lost your hubby last year - I don't know how you coped. I've spoken to Macmillan this morning and she says to take one day at a time and I try to do this but it's so hard, especially when you see the one you love suffering so. I'm off to the hospital now as I need to be with him as much as I can, for both our sakes, and I'm just hoping there is some better news today.

Sue

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

Re: Roger's Story

Postby Sueoliver » Tue Sep 01, 2015 1:00 pm

Hi Sue,
I know exactly how you feel. Hang on in there! Thinking of you both and I hope things start to get better.
Lots of love,
Sue xxx

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Wed Sep 02, 2015 6:41 am

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

ronanronan
Posts: 2
Joined: Tue Sep 01, 2015 9:01 am

Re: Roger's Story

Postby ronanronan » Wed Sep 02, 2015 7:29 am

wow....such an amazing and touching story

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Roger's Story

Postby WilliamS » Wed Sep 02, 2015 7:57 am

Hope you get some answers today Sue. Good luck.

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: Roger's Story

Postby allyc1 » Wed Sep 02, 2015 8:25 am

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

ElsieG
Posts: 21
Joined: Thu Jul 30, 2015 9:04 pm

Re: Roger's Story

Postby ElsieG » Wed Sep 02, 2015 10:05 am

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

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

Re: Roger's Story

Postby jay » Wed Sep 02, 2015 10:55 am

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

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Fri Sep 04, 2015 8:46 am

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

allyc1
Posts: 68
Joined: Tue Jul 14, 2015 7:57 pm

Re: Roger's Story

Postby allyc1 » Fri Sep 04, 2015 9:00 am

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

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Thu Sep 10, 2015 6:38 am

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

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Roger's Story

Postby sheena » Sat Sep 12, 2015 10:39 pm

Hope all ok my lovely life is so full of ups and downs wouldn't it be lovely to have a normal week t c xx