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Original poster

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

165 replies

onlyjoking9329 · 22/11/2007 09:12

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.

OP posts:

Christie · 25/11/2007 22:22

This reply has been deleted

Message withdrawn at poster's request.

susiecutiemincepies · 25/11/2007 22:45

hey you, not posted for a while to you not seen any of your threads, so sorry!

i was just going to say, I have to take quite alot of morphine, for pain in various places. It doesn't make me spaced out, or sleepy.
I have a 10 month baby, and look after her alone mon- fri ( DH works away in week) and don't have any probs with the medication and looking after her. I'm only telling you this, as you may find it much better for steve to have his pain really well controlled and not have any peaks and troughs in it. I used to take a slow release morphine ( MST) which was also effective. I don't at the moment as i do sometimes have the odd day when its not so bad and I can take less morphine.

it is worth considering, along with a good anti-emmetic. It may improve his quality of life more, with less pain, and more controlled. I do understand his reluctance though.

BTW, Tramadol is basically a synthetic morphine, which has been 'tweeked' to help with the side effects of Morphine, and is supposed to be less addictive... not sure that it is though really. It is metabolised in the same way as morphine is, and the body uses it in the same way...IYSWIM?

Hope things a little more settled today, I really do. Will be thinking of you. take care.

Original poster

onlyjoking9329 · 25/11/2007 23:07

you are all very kind, i promise you i am nothing special i am just doing my job as wife and mother and like to help folks when i can, afterall you folks have helped me no end. morphine is an option at some point i am sure, but not needing it just yet.

OP posts:

yurt1 · 26/11/2007 00:27

we used to have a kettle (pre-ASD) that changed colour OJ. Can you imagine???

triplets · 26/11/2007 09:26

Goodmorning OJ,
Thank you for directing me to this thread. Another day begins, we none of us know what it has instore for us do we? Everyone should learn to live for today, that way we waste nothing, may sound easy to say, but folk like you and I who have known such stress and sadness in our lives do appreciate what we have now. How is Steve this morning?

Original poster

onlyjoking9329 · 26/11/2007 12:29

yurt there is no way we could have one of those,i mean i am trying to keep the kids away from the kettle all we need now is a kettle that pays a tune, but please don't make it barney or thomas

OP posts:

milfAKAmonkeymonkeymoomoo · 26/11/2007 14:12

How are things today OJ?

LilyLoo · 26/11/2007 17:18

How you all doing today ?
How kind of you to link to that other post.

Original poster

onlyjoking9329 · 26/11/2007 19:19

today has been much the same as the weekend steve is still in bed dunno if this is how its going to be now until he gets worse, i was supposed to be dropping his steroids again tomorrow but i don't think i should. if he stays like he is now i am not sure he will be well enough to have more chemo

OP posts:

TripleyXmasTippleTigger · 26/11/2007 19:26

hi O.J. I have no words of wisdom,just wanted you to know that I was around.x.

LilyLoo · 26/11/2007 20:01

oh dear will you get to see someone tom before you have to make decision r/e steroids ?

Original poster

onlyjoking9329 · 26/11/2007 20:04

no we won't get to see anyone thou will speak to the Mac nurse.
the worry is that if he is needing higher doses of steroids then the likelyhood is that the tumour is growing

OP posts:

LilyLoo · 26/11/2007 20:07

Oh OJ do speak to Mc nurse but know what your saying as this was what consultant didn't want to happen
It's shit and unfair it really is

Original poster

onlyjoking9329 · 26/11/2007 20:10

well you are right it is shit, i am clinging onto the hope that he might improve i really don't want to accept otherwise
got a letter from the DLA today to say they have recieved the forms and will be in touch shortly

OP posts:

LilyLoo · 26/11/2007 20:14

OJ where there's life there's always hope and i don't think you could carry on without it!
Bloody typical r/e dvla !

Original poster

onlyjoking9329 · 26/11/2007 20:33

Steve said today that he thinks he may die

OP posts:

milfAKAmonkeymonkeymoomoo · 26/11/2007 20:47

I think you need some definitive answers, not knowing one way or another is awful, when my DH was diagnosed they said they were going for a cure with the treatment. When he failed to respond and got steadily sicker the uncertainty was so stressful. It was almost a relief when they said he was finally terminal, gave me a chance to get used to the idea as much as is possible. He was also relieved as he knew he wouldn't suffer for an indeterminable length of time.

It's awful when they start to talk about dying, even if you know in your head that will happen your heart doesn't want to contemplate it and having that spoken about so clearly is too much.

Big hugs to you, keep talking we are all here to support you through every step of the way. x

Original poster

onlyjoking9329 · 26/11/2007 20:56

we were told in january that he had MS and a tumour but felt it was slow growing and therefore low grade.
it was only when he was rescaned in july they changed their minds he had surgery on 6th august sent home on the 9th of august and told in a phonecall on the 10th that it was high grade. on the 15th we were given the info on the type of tumour and we knew then it was terminal. Steve for the most part has forgotton that he was told 3-6 months thou treatment may extend this by up to 6 months but he has to be well enough to get the treatment, at the moment that doesn't look likely
steve has only talked about dying a few times he mostly talks about a cure or remission.

OP posts:

milfAKAmonkeymonkeymoomoo · 26/11/2007 21:07

You hang on hope though eh? Hope keeps you going through the longest nights. And doing something i.e. the chemo gives you that hope of more time.

Really feel for you, having walked that road, wish we could magic thsi away for you.

Original poster

onlyjoking9329 · 26/11/2007 21:11

i think thats part of it Steve has finished the radiotherapy and they won't give him anymore he may get more chemo but we have to wait until the scan on the 5th until the 11th when we see the consultant to see what will be offered, our PCT will only fund 6 rounds of chemo so we will just wait and see. it's all we can do really, thanks for your support it means a lot

OP posts:

triplets · 27/11/2007 14:38

Hi Oj,
Feel so heartbroken for you, life is certainly a bitch at times, we all admire your strength, and as said, we are all here for you if only to listen xxx

cookiesandscream · 27/11/2007 15:36

Oh OJ that must be so hard to hear him talk about dying.
you must be under so much stress you always come across as so strong but i bet there are times when it all seems too much too bear.
how is Steve today?
how are the kids dealing with it?
do you ever get a break?

LilyLoo · 27/11/2007 19:31

Still hoping for a better day for Steve ?
Did you have chance to discuss the steroids with the mac nurse today ?
Hope your coping x

Original poster

onlyjoking9329 · 27/11/2007 23:24

not a good day for Steve he woke up in the night a few times in pain he has been on max pain relief all day he's not able to stand up properly, it's so hard to see him like this, i wished i could make things better for him
i was supposed to drop his steroids down today but i haven't, this is no way of living for poor Steve

OP posts:

LilyLoo · 28/11/2007 09:46

Oh OJ i really am so sorry and wish something i could say would make a difference he is obviously really struggling has the nurse been round ?
Much love to you all

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