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Original poster

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

198 replies

onlyjoking9329 · 10/12/2007 12:08

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.

OP posts:

fortyplus · 13/12/2007 23:06

Oh OJ... it must be so hard to deal with this. I would've punched someone by now and I'm very placid in rl.

Original poster

onlyjoking9329 · 13/12/2007 23:09

yes i am very placid too until someone messes with the ones i love then i have been known to lose it a little

OP posts:

chikenmother · 13/12/2007 23:21

Hi OJ, it´s been a while. I just want to send you my support, hou have been incredibly brave until now and I´sure you must be tired and angry too. Well you can moan with us, you must have some comfort, you ust be strong for the times to come. I send you my deepest well wishers. XXX

fortyplus · 13/12/2007 23:22

Glad you can still raise a smile

smartiejake · 13/12/2007 23:27

Not posted before but my problems pale into tiny insignificance compared to yours.
Wishing you and your family the very best good vibes I can.
Thinking of you xxx

Original poster

onlyjoking9329 · 13/12/2007 23:36

i don't have the monopoly on problems, we all have things that are difficult for us.
there are people who have far more to deal with than us, i wouldn't want people to think well i can moan/whinge/complain cos my stress/worry is less than OJ's
i just need to use MN as my sounding board and you lot are great you never tell me to sod off and stop moaning, thou i sometimes say that to myself

OP posts:

mummyvontummy · 13/12/2007 23:37

OJ, have skipped over a couple of pages but have been following your thread for a while-they don't always stop chemo at 6 months, they tend to stop when it stops being effective. My mum's been on hers since June and it stopped working 2 months ago, so they have put her on a different drug trial for another six months. I know she hasn't got the same thing but with mum they don't cure her but they do stabalize her so that she can still do things like play with dd etc, so they like to use them until they are no longer effective, so a little ray of hope there xx

Cosmo74 · 13/12/2007 23:37

How do you cope with all that - you are an absolute angel and the most wonderful Mother and wife anyone could wish for - you make me feel so humble - I am not very religious but will say a prayer for you and your family - hope you have an easy Xmas - remember as well as takin care of kids and hubby look after yourself.

i will be thinking of you - good luckxxx

Original poster

onlyjoking9329 · 13/12/2007 23:50

with the type of tumour Syeve has glioblastoma multiforme grade four the chemo is proven to only work for 6 month Max, there is a new treatment where they put a wafer type thing inside the brain that is a chemo based thing but the current guidelines are that it is only used when they do the first debulk surgery and only if the tumour is a certain size, Steve didn't meet the critera for that treatment as he was too advanced, i have made friends with a lady whos DH has the same tumour as steve and he was DX5 months before Steve and he has just had his sixth month of chemo and they have told him he won't get any more treatment he is much better than steve he has no pain no memory loss or confusion he goes out to work on non chemo weeks. they are going private and getting a 2nd opinion so we will follow their progress and see what happens

OP posts:

Cosmo74 · 14/12/2007 00:13

my love and thought go out to you - stay strong and we are all here when you need it. you put things into perspective for the rest of us who argue over the silly things in life.

you are an inspiration.

thank you for sharing you thought and feeling with me.

Look after yourself

Aren't MacMillan nurse great - my sister is one and we recently lost my uncle but without the mac nurses i don't think my family could have coped - all praise to them.

wrinklytum · 14/12/2007 00:17

Hugs,OJ.tHINKING OF YOU AND FAMILY XXX

Original poster

onlyjoking9329 · 14/12/2007 09:06

thanks,, Steve very up and down all night and had 4 lots of morphine in the night, Mac nurse says to give him 5mls which is 10mg of morphine, i am worried about him becoming dependant on morphine and needing high doses and spending all of his time in a morphine haze, on the other hand at least he is pain free this way.
what is hard to adjust to is that when i look at steve the outside packaging looks much the same but its like lots of the contents have been taken away, he is so different and i miss the Steve i used to have and i know i can't get him back IYKWIM

OP posts:

ajandjjmum · 14/12/2007 09:24

I am so full of admiration for you oj, and how you are coping.

Maybe your old Steve is in there - and he must be thinking what an ace he picked when he chose you!

DingDongMummyLinOnHigh · 14/12/2007 09:50

oj glad yo have steve,s meds sorted out ,nothing seems to go to plan does it.Hope you have a good day ,dont forget to come and see us in scuttle x

cookiesandscream · 14/12/2007 11:42

blimey you go girl, sad that you have to keep sorting out the drugs and stuff but where would steve be without you to battle for him.
i am feeling sad for you that you have a different Steve than you used to have.

Happy birthday (as i may not be around tomorrow)
It's your birthday tomorrow isn't it? i seem to recall that you said steve was having chemo on your birthday . i so hope you birthday can be a bit special in some way.
((((((( hugs)))))))))))

Original poster

onlyjoking9329 · 14/12/2007 15:46

yes it is my birthday tomorrow and the kids are excited about it, i just don't feel like celebrating which is daft cos i should be making the effort to make the most of our time but just feel like can't be bothered.

OP posts:

trulymadlydeeply · 15/12/2007 08:02

Happy Birthday, OJ. Hope it's as good as it can be (((hands over large bottle of wine and huge box of choccies))).

Original poster

onlyjoking9329 · 15/12/2007 14:35

scoffs the chocolates and leggs it with the wine

OP posts:

JackieNoel · 15/12/2007 14:40

Happy birthday.

hazygirl · 15/12/2007 14:46

happy birthday oj you certainly deserve it ,im thinking of youx

lilyloo · 15/12/2007 17:09

Happy Birthday OJ hope you have found some things to smile about today

Original poster

onlyjoking9329 · 15/12/2007 17:17

Have had a lovely day see Here
Steve struggling a bit today i am hoping he will feel much better next week when chemo has finished, he is in a morphine haze today.

OP posts:

fortyplus · 16/12/2007 01:31

Pleased you had such a lovely day

That thing you said about 'not getting your Steve back'. You know, he may surprise you. We lost a dear friend a couple of years ago. He had a very aggressive kidney tumour with lots of secondaries especially in his lungs. Not the brain though. Near the end he'd been on so much morphine it was really crap, but apparently the day he actually died he was up and insisting on taking himself to the loo and things like that and was much more 'normal'.

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