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Original poster

things going downhill fast, awaiting emergency doctor.

360 replies

onlyjoking9329 · 21/10/2007 12:47

Steve has got much worse since yesterday morning. he was sick six times and he is the same today, he has a lot of swelling around his head and eye
i phoned the docs and got thou to NHS direct.
they asked if steve would go into hospital, had to say no as he wants to stay at home.
just need to get the swelling, pain & sickness sorted out.
the doctor will be here within an hour

OP posts:

Original poster

onlyjoking9329 · 02/11/2007 09:13

enjoy your walk, i like dogs but am seriously allergic and the girls are terrified of dogs so we don't get to do family walks.

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cookiesandscream · 02/11/2007 20:38

oh dear OJ i didn't know that he won't get any more radio. so this lot of treatment needs to have shrunk it then?
i feel so helpless on your behalf god knows how you feel, are you able to talk about it with steve or is the denial in the way?
hope you got to see the MAC nurse and she was able to offer you and listening ear.
how is steve today?

Blandmum · 02/11/2007 20:41

Hugs to you OJ. How much support are you getting from the Macmillan nurses?

i think that you need to see them for you and not just for the help that they give to Steve.

Oh god, I wish that neither of us were in this situation sweetheart

Original poster

onlyjoking9329 · 02/11/2007 21:05

yes thats about the size of it this treatment need to have shrunk it really.
Steve is so much in denial which is a blessing for him so i don't want to take that away from him but it does mean i can't talk to him about stuff.
the radio to the brain causes brain damage which is why they will only give 6 weeks. which it hard as is his only chance to shrink it and we have to wait another 5 week to see if it has worked.
i did see the Mac nurse. steve refused to see her but wrote her a letter saying that he has come to terms with the fact that he will die from this but that he doesn't want to talk about it as there is no point as the end result is the same.
he sees that i need to talk about it so he went for a sleep when she came.
it was good to talk to her and say stuff that i keep to myself but the talk has made me take stock of stuff that i didn't want to think about.
MB i so value your input and i know you are dealing with much more than i am right now i hope i can be as strong as you.

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cookiesandscream · 02/11/2007 21:39

Jesus this stuff is so hard for you to deal with how do you get throu the days?
it is just too cruel how do you keep your chin up and continue to be so blinking chirpy if i had a hat i would take it off to you.
it sounds like the meeting with your nurse was useful but painful, will you see her again soon even if Steve does not want to see her?
how are the kids coping?
how are you coping?
and are your families helping out lots? (crossing fingers that family are helping}

notsofarnow · 02/11/2007 21:55

OJ praying for you all hun!

Original poster

onlyjoking9329 · 02/11/2007 22:38

thanks for your prayers

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TRIPLETlightEMup · 03/11/2007 10:02

O.J how are you feeling this morning?

TimeForMe · 03/11/2007 11:39

Hi OJ

I just wondered if you have seen That's Life magazize this week? There is a story in there that reminded me a lot of your situation with steve.

Thinking of you, praying for you and sending you lots of love xx

Original poster

onlyjoking9329 · 03/11/2007 15:13

yes i saw that magazine story it was very sad and i could see lots of things that were similar to us.
Steve is not very good today. he started to go downhill yesterday really.
we are supossed to be going to his mum and step dads house for a family get together tea & fireworks, i don't think we will make it, i have phoned to warn that we might not make it.
steve is snoring and the kids are pestering as they wanted to go to grans. will have to do it another time i guess.

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Blandmum · 03/11/2007 15:16

We are due to go to a friends for an hour tonight for fireworks and some hot dogs, So Dh is resting up. I hope that he is well enough to go, but if not, I'll take them, as they only live across the road.

We 'hosted' last years do.

I hope that you get to go.

How is Steve otherwise? Have the increased steroids worked?

GunpowderTreasonAndSquonk · 03/11/2007 15:23

hi, oj... only just seen this.

just wanted to say hello really, and let you know that you and steve are in my thoughts.

Original poster

onlyjoking9329 · 03/11/2007 15:26

he is tired and in pain swelling around his head very wobbly on his legs and easily confused. i do wish he would stop telling the kids that its half term this week
well i don't think the increase in steroids have helped but maybe tomorrow will be better, i think i may have a battle with the consultant on tues cos she said to drop steds from 8mg to 6mg this week and she wants to drop them again on tuesday
i hope you all get to go to your firework thing tonight and thatDH is more comfy.
thankyou for talking me into getting a MAC nurse you were right it does help

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Blandmum · 03/11/2007 15:28

Ours is an angel, she really is.

I couldn't have coped without her. I'm glad yours is helping you. Are you getting any other support? are the family clued up about what is happeneing, and can they help you out at all?

Original poster

onlyjoking9329 · 03/11/2007 15:33

well i don't have any family, steves family are very good at visting often whilst i make coffee and cakes for them but they don't help
i have a meeting on weds with the SALT to see if she has anything useful i can use to help with the kids, i did order some book but i don't think they are ASD friendly IYKWIM.
funnily enough i did get an email from JKP to tell me new book coming out soon... Autism & loss.

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cookiesandscream · 03/11/2007 23:01

Hi OJ how are things?
did you get to go out? i am still amazed at the bravery you and mb have in dealing with this stuff.

Original poster

onlyjoking9329 · 03/11/2007 23:44

we are ok, steve is snoring
we got out for a couple of hours which was fab.
i am hoping that tomorrow will be better for steve.
i love him so much and hate to see him suffering.
this disease is so cruel and unfair why did it have to come along and impact on our lives?

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TotalChaos · 03/11/2007 23:52

it's shit and unfair OJ. sorry I can't think of anything more sensitive and profound to say. am glad you got out for a few hours.

controlfreaky2 · 03/11/2007 23:53

hi there oj.
sorry things are so hard for you and steve. glad you managed to get out for a few fireworks though

cookiesandscream · 03/11/2007 23:57

i agree with TC you are right there it is unfair and just plain wrong.
i am glad you got to go out. i know i prob sound like a stuck record but i so admire the way you are dealing with this.
i wish you much peace
(((OJ)))

Original poster

onlyjoking9329 · 04/11/2007 00:01

We did get to go out and i am thankful that we did, we videoed the fireworks and stuff which was nice and will be great to look back on, making memories is good

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controlfreaky2 · 04/11/2007 00:05

stay strong...... and dont stay up too late! (pats oj on virtual shoulder and shuffles off to bed....)

Original poster

onlyjoking9329 · 04/11/2007 00:06

i always stay up late its my time

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controlfreaky2 · 04/11/2007 00:10

hmm. ok then.... but not TOO late ok?

Original poster

onlyjoking9329 · 04/11/2007 00:12

ok i will try but i find by the end of the day i need some time when i am not a carer IYKWIM

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