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.

OJ sorry i haven't been around for a couple of days. So soory to see you have been through the mill again esp if it's all to do with the steroids again ! Can you not just refuse to reduce them or at least get the consultant to compromise somewhat with you. It all seems so ridiculous that he keeps having to go through this when they reduce them because of the 'long term' effects.
Wishing you all much love and hoping he has amoresettled night x

thinking of you.
xxx

well i am not sure about inspirational
pissed maybe
the steroids are a joke really the consultant was cross that i upped them last time we saw him and he says he wants steve off them for when he sees him next.
consultant said "it will be disappointing
for him maybe if steve can't get off the helping steve have
some quality of life steroids cos that would indicate that the treatment has not worked.

Hey you ? don?t do yourself down ? pished/smished/inshirational ?.all the same?.you do a blardy fantastic job with Steve and your kids ? I couldn?t do even a 10-th of what you do every day ? even with the booooozzzzzeeee !!!
Hope things get better very soon for you.
Love Val.

lovey, valnben is right you do yourself down, you are fab i don't quite know how you do it but you do.
much love.
G&S

the booze always helps

Hi OJ, just wanted to post to say I haven't posted much on your threads but I do know your situation and I am thinking of you.

Hope youre having a better morning oj, thinking of you

Steve hasn't made it out of bed yet, he is not in pain just feeling dizzy and crap.

Sorry Steve is feeling bad again OJ. It must be so frustrating that you are getting such mixed messages from the medical people and having to do so much chasing.

As an aside I think that anyone who can type like you (with all that striking out done perfectly) while pissed is actually quite inspirational.

well he is much better than he was on wed and thursday

It really is catch 22 though isn't r/e steroids. Tbh it's all relative to Steve quality of life now. In an ideal world yes Steve wouldn't be on them however you also wouldn't be in this situation and would have no idea what a grade 4 glioblastoma is !
Surelt they should be looking at how to help Steve in the here and now ?
As for you don't put yourself down you really are doing a fab job in a crappy situation.
Hope Steve managed/manages to get up today.

the Mac nurse isn't worried about the steroids she says everyone has a maintenece dose. the bad news is that if steve is needing to keep upping the steroids then it is due to swelling in his head that could be tumour growth or fluid. we won't know until 11th dec.
he has been out of it for most of the day so i have had to wake him to try and get fluids into him, he has been sick again today but only three times, he is very unsteady on his feet and has a tremor, not sure if this is tumour or his MS.
his mum came today and was shaken when she saw him

OJ. Am totally at a loss to know what to post.

Would like it to be something totally uplifting and helpful but there really isn't anything.

We are here. Whenever and for whatever.

Hope Steve is better tomorrow.

oj wishing you strength

i just get fed up sometimes and then i wonder if this is it will things get better for Steve or is this as good as it's gonna be?

oh OJ

Hoping things will get better, oj - you all deserve some good times.

(Of course you get fed up sometimes, but still you do a fantastic job of smiling through for your family. You are great.)

for you all oj.

it's the always not knowing that gets us down, you would think if someone time was limited then you would want to make the most of the time you had left, but Stve is not well enough to get out of bed even at the moment and weekends are hard cos trying to spend time with Steve and the kids is tricky. Steve is still pretty much oblivious to his situation which i find hard to deal with, cos we can't talk about things

You are living day by day OJ, that's pretty damn hard.

you have so much to deal with OJ, three kids are hard enough then add in the autism top that off with steves brain tumour, i could cry for the unfairness of it all.
i can see what you are saying about making the most of the time you have but you must feel like life is on hold but yet time is slipping away.
big hugs to you Babe ((((OJ))))

oh god OJ it must be so hard for you especially if Steve doesn't really understand the situation. {{hugs}}

i think thats the big problem, the person that knows me best, the person that i can turn to and talk and share things with is no longer the same. and that is so hard, Steve doesn't realize any of this which is a blessing in a way.

oh OJ my sweet