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

Re: Roger's Story

Postby kittycat » Mon Sep 14, 2015 4:03 am

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

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

Re: Roger's Story

Postby jay » Mon Sep 14, 2015 8:11 am

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

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

Re: Roger's Story

Postby Sueoliver » Mon Sep 14, 2015 8:55 am

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

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Roger's Story

Postby sandraW » Mon Sep 14, 2015 12:32 pm

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

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

Re: Roger's Story

Postby ElsieG » Mon Sep 14, 2015 2:02 pm

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

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

Re: Roger's Story

Postby sheena » Mon Sep 14, 2015 9:43 pm

Feeling for you at this awful time feeling selfish that Steve is still doing ok my God how much more can they throw at you sending hugs xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Roger's Story

Postby J_T » Tue Sep 15, 2015 11:22 am

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

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

Re: Roger's Story

Postby kittycat » Wed Sep 16, 2015 7:53 am

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

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

Re: Roger's Story

Postby jay » Wed Sep 16, 2015 9:01 am

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

Fifi

Re: Roger's Story

Postby Fifi » Fri Sep 18, 2015 12:47 pm

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

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

Re: Roger's Story

Postby kittycat » Mon Sep 21, 2015 6:54 am

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

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

Re: Roger's Story

Postby jay » Mon Sep 21, 2015 7:38 am

Hi Sue,
Good news Roger has had his stent fitted, hope you get him home soon,
thinking of you both
love Jayne
x

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

Re: Roger's Story

Postby Sueoliver » Mon Sep 21, 2015 9:01 pm

Hi Sue,
I'm really pleased Roger has had his stent fitted. I hope it helps him. I hope Roger gets home soon.
Thinking of you both.
Love Sue xxx

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

Re: Roger's Story

Postby sheena » Wed Sep 23, 2015 10:18 pm

So hope Roger gets back home take care of yourself in my prayers xx