can i ask you lovely lot to cross fingers and fanjos for Steves scan results.

[onlyjoking9329]

what a weekend.
Steves been in bed since saturday feeling sick but not been sick, he is struggling to balance and has been in a lot of pain.
Steve ended up with the doctor out again last night and was given morphine. he slept much better last night
it's so hard to be optimistic about scan results when he is feeling so crap.
on the one hand we want the scan results out of the way, but on the other hand we don't want to know, just in case it isn't the best news. the timing is crap and we just can't get into the christmas spirit.
the kids have several things on at school the next two weeks and don't know if we will be able to go.
sorry if it sounds like i am always moaning but mumsnet is my sounding board.

Thinking of you all OJ xxxx

Sorry it's not the news you (and the whole of MN) were hopng for OJ but, am delighted the tumour hasn't grown.

Thinking of you and you family XXX

OJ, I am sorry it's not better news, and the annoyances with the pharmacy systems failure are not what you need right now XXX

Only just seen this OJ - I am sorry you didn't get the news you were hoping for, but at least it hasn't got any bigger. Sorry about the rubbish pharmacy too - that sounds ridiculously annoying!!! xxx

OJ will say a prayer for you and Steve, I have spent a week in hospital with my baby and know how worrying these thing can be.

yes the meds are powerful and have a warning label "these drugs are cytoxic, only to be handled by patient"
well have just got home, it took nearly 2 hours just to get there cos the M1 was shut.
steve has had his chemo and his mum will be here to stay with him whilst i go to school.
steves not to happy cos he has to have five chemo tablets
1 X 250mg
1x 20mg
3x 5mg

Are they big OJ? I'm not great at taking stuff, needs to be caplet style for me to take easily.... Can he drink and eat with them or is it just water at the time? Cos disguising with eating and drinking footstuffs might make it easier, iyswim?

Sorry the news yesterday wasn't as good as you'd hoped for, but also heartened to see that there was no more growth.

The multiple meds get to be a real PITA.

at the moment dh takes 12 tablets in the morning, three at lunch and 9 at night!

I wonder how on earth people cope with this if they are perhaps elderly and confused!

It is all I can do to keep on top of it.

Evening OJ sorry been having a bit of a mare here and first chance to pop on. As everyone else says sorry it hasn't shrunk but glad it hasn't grown. At least treatment not in vain and who knows how things might turn out in next few months at least there will be more treatment hope Steve doesn't find it too hard and you get some good days to come

thats part of the problem MB steve is confused so i have to give him all his meds.i did get some of those tablet holders but they are not big enough and i can't touch the chemo tabs anyway.
when Steve is confused and aggitated things are even more fun cos he refuses to take his meds and i have found several under pillows and bed.
our pharmacy were meant to be delivering his anti-sickness and pain killers today after 4, they haven't been and i left steves mum here with him so she could put meds away safely, fingers crossed for a good night as he only has 2 pain relief tabs left of course had the consultant written him up yesterday for the pain killer & anti sickness meds we would be running short now.

Hi OJ, so so sorry the news wasn't the best news, but glad it hasn't grown, will steve get more radiotherapy to shrink it?
sounds like a cock up with his chemo meds i didn't know that they had to be done by a separate place.
you still blow me away with how strong you are.
your love for Steve and your kids shines through your posts, how do you stay so strong?
so how has today been and how has he been on the chemo?
how are you coping with it all?
have you talked it through with your cancer nurse?

well we think of it as medieum news, not the best but not the worst.
No steve can't be given any more radio 6 weeks is the most they will give for the brain because of the brain damage it causes.
the Mac nurse will be coming in the morning so will speak to her then.
Steve not feeling great, he is feeling really tired and feeling sick, but not been sick so fingers crossed.

I don't know what to say oj but I think of you and all that you are going through.

steve has just been sick three times
o have given him another anti -sickness tablet and am hoping he will keep it down, these are the ones that we had to fight for as they cost £7.19p each

a rough night as steve not comfy but not been sick, the alarm clock didn't wake me this morning so it was a bit hectic getting 3 kids bathed and fed before the school bus, but i did it
the mac nurse has been today and is going to sort out some morphine for Steve which should help she is also sorting out some other meds cos he can't swallow one lots he has been given.
i love our mac nurse

Mac nurses are BRILL aren't they OJ- full of good practical ideas & tricks up their sleeve to answer most problems & listening ear for off-loading about the ones that can't be fixed!!

At least if Steve hasn't been sick you can get him loaded up with anti-emetics as much as possible. Bad enough feeling so rough without the vomiting poor love.

well after seeing our mac nurse i felt a lots better she is the only one who really really "gets it" without me having to hold stuff back IYKWIM, she said she would yalk to GP and get steve writrem up for morphine.
so i then went to see our three in the school carol concert at the church, bawled my eyes out but no one minded as they were all at it!
got home and Mac nurse phoned to say prescription ready at 4.30, so i took three kids up to the doctors got script and went to the chemist, who didn't have the morphine vials in stock, so off to chemist numbeer 2 & 3 they said the same thing and asked why the doc had written him up for the 5ml vials? they usually just give bottles of which they had plenty.
so back to the fecking doctors with three kids in tow to get the dragon receptionist to go talk to the doctor and change the script, it all seemed to much hard work for receptionist, so i took the kids to the play corner and went back to see the receptionist and told her that as my husband was dying i felt that it was rather important to making living as comfy as possible for him & that i didn't think that was too much to ask. i got the new prescription in a few minutes
so Steve is now pain free and in a very tranquil state.

Oh FFS at the evil dragon!!! Have people got no idea? You'd think that with the job she's in she'd be a bit more sensitive!!!

Sorry, I'm just so angry for you that you had that on top of it all! GRRRRRRRRRRR!

Well, at least it's done now. So, do any of your pharmacies deliver? Get these meds delivered from now on, ask Mac nurse to help you get it organised. I KNOW we have that up here in Scotland, you MUST have it where you are...

don't get me started on the non drlivery stuff, they were supposed to deliver 3 different meds yesterday 1 of them was steves pain relief that the consultant forgot to give him steves mum came to sit as i had to got to something at school and they never arrived, by the time i got home it was too late to contact chemist as it was closed, steve only had 2 tablets to last the night
hene we were up most of the night.
i phoned chemist this morning to be told they had the pain relief and 1 other med but had ordered the other stuff (not urgent for us)so they had decided to not send anything until they had them all
after pointing out that Syeve had had a crap night due to pain and no Fecking meds strong enough to deal with it, the meds were delivered within ten minutes
i am getting good at bolshy

Well done you OJ

Well done OJ- sadly getting bolshie is the only way to get things done in the NHS these days it seems

Well done OJ for saying what you did.

Cxx