Having got throu to the dragon doctor receptionist, i am waiting to hear from doctor but i think Steve will be going into hospital today

[onlyjoking9329]

well not much sleep last night, steve in a lot of pain and painkillers not working this morning he
is being very sick, i have phoned and left a message for the Mac nurse and i have
phoned and left a message for the doctor, i am hoping they can sort out the
pain for him.
i have trolly dollied throu getting the kids up bathed fed and off to
school, both Beth and Elliot tearful this morning and i am hopeless at
dealing with it all right now.
i will wait for a phonecall from doctor but i think he will want steve in
hospital, Steve doesn't want to be in hospital.

i am off to drink too much coffee.

oh Sweetie that must be so hard to adjust to, i would imagine that you are grieving for the way things used to be.
how long have you been together?
i wished i could promise you that things will improve.
you are one strong lady and i can hear you saying "but i don't want to have to be strong"
you have a lot of mates on here OJ you know we will help you however & whenever we can.

you are right it is hard to adjust.
we have been together for 16 years, i know i have lots of support on here i don't know how i would get throu without being able to type it all out on here.
thanks for allowing me to do that

Sending you all lots of love and hugs

Steve hasn't made it out of bed today he has only been sick once
i am hoping that he will improve somewhat as if he stays like he is he won't be well enough to have anymore chemo

Oh Oj nothing i can really say other than not a day goes by when i don't think of you. I only have the experience i had with my mum to go by and am sure that each situation is different. However i know what you mean about talking about things and making plans. We never got to do that either as when she did get ill she was never really able to do it. It seems different to other cancers in that they don't reall seem to be compos mentis for much of the time through their illness. It is absolutely the worst thing to see them get so poorly before your eyes. You really can only take it a day at a time and just hope that he will have more good days to come. It's funny how that can be relative though as what was a good day originally drastically changes the further down this path you go!
Am thinking of you all and hoping the kids going off to school tom will give you some much needed time together as i know the weekends are so tough, take care

OJ Thinking of you all.xxx

Thinking of you OJ.

Lily you are right our "normal" seems to change daily, it is like living with someone with dementia, he woke me at 2am to tell me to go and fill the kettle up ready for the morning i can't share decision making with him about anything and it feels lonely here at times.
thanks for letting me waffle on it does help

Bless you OJ we are all here however i know none of us can really fill Steves shoes
It's a good job you can keep your sense of humour as sometimes it's the only thing to get you through it! Take it you didn't put the kettle on then

OJ just a thought but when my mum took a turn for the worse and we knew she wasn't going to improve we gave her a diary. TBH most of it is jumbled up nonsense but there are some really lovely things in it when she was obviously having 'better' days, It's something i'll treasure forever and it has brought me many days of comfort and smiles as well as tears. She was never one for keeping a diary but as she was in bed for so much of the time it gave her a chance to get some of her thoughts down. Might be worth trying it with Steve ?

no i didn't put the kettle on at 2am, i did at 3.30 cos he kept going on about it.
i have to find things to laugh at.

OJ {HUGS} Your kettle story reminds me of a lovely bloke I nursed who was most put out that I was unable to make him roast lamb and all the trimmings at 4am on a nightshift(sadly our ward was not geared up for producing a roast ).(We compromised with tea and toast)

Well obviously 3.30 is much more acceptable

i would love him to do a diary but his sights bad and his reading & writing make him cross cos he says it's like he is suddenly Dyslexic all the letters are jumbled, i would write stuff for him but he wouldn't let me. we have been using the video camera more.

Videocam sounds like a lovely idea.

He does all sorts of things, he is forever moving things around but can't remember moving stuff. he emptied the wardrobe in the middle of the night looking for a letter that didn't exist

oh bloody hell OJ- we have enough fights with ds1 in this house about the sodding kettle (he like tshe sound it makes and he also likes making cups of tea- no teabag though- which he then likes to pour immediately down the sink-- insane child) if dh started banging on about the kettle in the middle of the night I think I'd lose the plot. You really are amazing you know (although I wouldn't go so far as to say angelic and chosen )

I really hope you're getting some real life support too. A chance for some free up time and some wine.

Much love to you.

Cxxx

Hello wrinkly, yes tea & toast better at 4am.
Steve has been veggie for 20+ years but now eats meat!
i wouldn't be surprized to find him smoking a cigar, he has never smoked yet....

Yurt have you seen those seethrou kettles can you imagine how much ASD kids would like those!

I lost my first DH to cancer and I felt like I lost him before he went IYKWIM I think much of the battle with cancer is not knowing what will happen next.

Hugs to you OJ.

OJ .It must be so hard.You will be getting minimal sleep as well.Could you get any night sitters so you could get a break,or is that unfeasible?I think that brain tumour must be the worst thing.I have looked after patients with brain involvement from lymphoma and it is the complete personality change that is the hardest thing for their family.Like you say,much like dementia patients.

you are so right monkey in some ways i feel like i have already lost my DH and i know it is not going to get any better

no we couldn't do night time carers it would unsettle the kids too much, i get by i try and have a snooze with him when the kids are at school

can any of you lovely lot help this lady
Here

I will crosseverything for a better day for you tomorrow OJ.
you really are so kind to support others when i guess your own heart is heavy.
much love OJ
are the kids are ok?