Just had the phone call to say ....STEVE IS COMING HOME ON MONDAY !

[onlyjoking9329]

Hi Oj..............what a devil! Humour is a wonderful thing esp at such times as these, you are truly amazing and inspirational to me, xx

OJ, glad to hear that you are finding things to laugh about. I can just imagine the satisfied on Steve's face knowing that he's evaded the tablets so skillfully. I hope your back gets better. Lifting is tough even when you've not got a bad back. Take care of yourself. I hope Elliot lets you sleep a bit longer tomorrow. It was really good to talk to you last night. The story of Elliot being asked to make a cup of tea by the carer still had me today. Love to you, Steve & the kids. xxx

we have Carol again tonight, she always brings goodies all the staff have been great which is a relief cos it would be difficult having them here otherwise. the kids are used to the regular staff now and are happy to go and climb in bed with steve for a snuggle.
Izabella it was lovely to talk to you again last night, you are very easy to talk to and i know you have been where we are now.
Steve is now asleep so i will be heading off soon to get a few hours before i get woken up.

Just checking in OJ. Along with the many others who are trying to be here to hold your hand.

Any help I can give I gladly would even though I may be many miles literally, I am only a post away

all hand holding is welcome, i wouldn't be coping so well without you all. i thought Steve was settled for the night but he has just been awake needing a wee, he still says he needs to go to the loo which is in the utility room next to his room but as he cannot stand up witout help he cant use the loo he protests about using the commode everytime.

Hope he and you manage to get back off to sleep again. It is evading me somewhat tongiht

what is keeping you awake?

trivial compared to what you are going through. I have the BRACA2 Breast cancer gene and am due to have some profelatic surgery, but have discovered I am servely anemic and can not get iron levels, B12 or folate levels up. So I am seeing a consultant about it in 3 weeks time..... But it is giving me insomnia, leg cramps and palpertations (side effects)

Oh TMH hope you are ok that sounds awful. Hope the insomnia gives up and lets you sleep soon.

OJ had to post tonight and you have made me laugh through your adversity as usual. Hope your back gets better and that Elliot enjoyed his B'day money. Wishing you two can drift off to sleep and have a peaceful night.

Night night God bless xxx

Morning OJ! I'm glad that you and Steve are still managng to laugh - it really is great Take care. x

Well thats hardly trivial Madhouse, it must be a major concern for you.
do you have to get iron levels right before surgery?
Steves B12 was not very good so he had injections when in the hospice.
Steve not eaten yet today he has had a few sips of tea but dosn't stay awake long enough to have much more. he is struggling with holding his head up and leans to the right all the time.
The district nurse is coming out to see steve tomorrow, he has been home three weeks now and he has got lots worse in that time.
i know the end is getting closer for steve and in some respects i dont want to deal with that i want to freeze things for how they are now, we just don't want him to die ever

Oh sweetheart, I know just how you feel.

I'm so sorry and wish that I could stop the clock for you.

I wish that I could halt time for you both. You are in my thoughts. x

clock stopping and time freezing would be good skills to have, it wouldn't be fair on Steve thou he has had enough and is hoping that it will all be over soon
The Mac nurse said it might be weeks but so hard to tell.

In his less frequent waking moments, OJ, what does he mostly talk about?

Thinking of you OJ and sending lots of love. Powerlessness is a horrible feeling xxx

it is hard to have a conversation with him as he is so confused most of the time, he waas maiking us smile last night he was talking to a teddy bear saying you want to watch yourself cos they will be making you take tablets and have a wash and shave
he still enjoys a cuddle so we do a lot of that, He calls me that there lady who brings the trifles round.

Your 12:34 post just made me cry.

I am overwhelmed with admiration and respect for you. I know I couldn't live like you are doing. I would fall apart. You are keeping everything together and are being the best mum and wife in the whole world.

Every moment must be so incredibly precious to you OJ.

he just sleeps so much at the moment, i am trying to keep the kids occupied so they dont go waking him up then when he is awake i try to get the kids and myself to spend some time with him, we have been looking at photo albums and watching the digital photo frame, he seems to have a pattern of being awake for a chunk of an hour our two in the late evening but the kids are in bed by then.
the waking moments are very precious times.

Just had a thought. When Steve is awake late can you video him as he and you chat and cuddle so the children can see him that way?

Sorry if it is a daft idea.

OJ, I understand what you say when you mentioned that it would be unfair on Steve.

Dh was in a lot of pain last week and his quality of life was very. very poor. This week he is under better control, but we know what is coming.

I hope that everything goes as easily as it can

oj - I hope you can find time to enjoy the precious moments you have left.

those moments of laughter will be important to hold onto in the weeks to come

So sad OJ. And MB.

I think of both of you and your families often.

Oh Darling girl.