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Original poster

Steve not very well at all today, Doctor has just been out to him

201 replies

onlyjoking9329 · 08/09/2007 20:56

he was in a lot of pain yesterday which has not improved today. he is much more confused so it is difficult to find out what is going on. his sight is much worse too and he is quite wobbly.
The doctor phoned the hospital and talked to them about it. the doc has given him a morphine injection and he is to go back on the steriods, which he has just been weaned off. the doctor will phone in the morning to see how he is. he is tucked up in bed now.

OP posts:
Blandmum · 15/09/2007 20:55

I know that feeling. People do it out of the best of reasons, but it doesn't help does it?

fransmom · 15/09/2007 20:55

hi oj ((((((((((((())))))))))))))
maybe sometimes that might be somebody's way (those that are outside of your situation) of trying to help you? it might seem a slightly skewed way of doing things though.

Original poster
onlyjoking9329 · 15/09/2007 20:58

well i didn't say anything cos it gave steve some hope. i know people mean well but it ain't helpful
good news on the PCT funding the chemo they started to fund it in june so we will be ok.
how is your DH? is it tuesday you get results from scan?

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fransmom · 15/09/2007 21:00

that's good news then oj, maybe things will start moving again soon.

Original poster
onlyjoking9329 · 15/09/2007 21:07

well i thought i would have to battle for his treatment.
i am now in email contact with a lady whose DH has the same type/grade of tumour as steve they have the same consultant too, her DH is further along with the treatment and they did have to pay for the chemo drug for a few weeks 6K

OP posts:
fransmom · 15/09/2007 21:09

6k????????????

Original poster
onlyjoking9329 · 15/09/2007 21:19

15k for a course apparently but as they changed the ruling they only had to pay 6k

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fransmom · 15/09/2007 21:29

6k is such a lot.

it hought it was free on nhs? or am i just being naive???????

Original poster
onlyjoking9329 · 15/09/2007 21:35

it depends on if your local PCT (primary care trust) will fund it, ours have only recently agreed to fund it. they wouldn't agree to fund it before for GBM4s as they are not able to cure these types of tumours so i suppose they felt it was a waste of their money.

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fransmom · 15/09/2007 21:36

they only seem to think of monetary gains and numbers rather than people's quality of life. i am glad that things ahve changed for you

any further forward on the macmillan help for you?((((((((((((oj))))))))))

Original poster
onlyjoking9329 · 15/09/2007 21:43

well we are waiting for a call for steve to go in for a scan they said 7-10 days and we are now on day 11, have just read on the mac site that the best time for treatment is 4 weeks post op, steve had his op 6 weeks ago and as his tumour is the most aggressive who knows how much it will have grown. once we are back at the hospital and daily treatment starts then we will see consultant once a week so will hpoefully sort out the mac nurse then, thou steve still not keen i will sort it for me and when the mac nurse comes to vist i think he will probably join in.

OP posts:
fransmom · 15/09/2007 21:46

at delay in scan.

i think it might well be a good idea to contact mac on monday and see if they can sort out delay for you.

fransmom · 15/09/2007 21:47
Original poster
onlyjoking9329 · 15/09/2007 21:52

well steve had a 3 month delay on his second scan
yes i have already posted on the welcome thread, i think she is busy as she is not even on my MSN, i wonder what she is up to

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fransmom · 15/09/2007 21:58

oh gawd grief. def get on to mac. and put in written complaint to medical association about delay in scans.

as for misdee, oj i woouldn't know >

Original poster
onlyjoking9329 · 15/09/2007 22:03

well they didn't see the need to rush despite me phoning many times as they were convinced that his tumour was very slow growing and low grade, how wrong they were
as for what MD is up to my memory is hazy in that department

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lisad123 · 15/09/2007 22:06

noooo dont want to think of my sis and hubby doing that

Original poster
onlyjoking9329 · 15/09/2007 22:09

how are you doing Lisa?

OP posts:
gibberish · 15/09/2007 22:10

Hi OJ. Hope you are bearing up m'dear.

lisad123 · 15/09/2007 22:13

not oo bad onlyjoking. Had a lovely call from MD earlier saying that Peter was playing with girls, watching them in the garden, and enjoying being home
I feel like im fit to drop, but no LO yet
Hows steve doing today? How you holding up?

Original poster
onlyjoking9329 · 15/09/2007 22:14

i am feeling somewhat beter after three a large glass of rum and coke, everyone is in bed here and has been for hours, it does get a bit lonely in the evenings.

OP posts:
fransmom · 15/09/2007 22:16

it spoudns lijke we all had 3!
it does get wuite though doent it

lisad123 · 15/09/2007 22:18

well your welcome to chat to me on msn, its minx101 at hotmail dot com, if your bored

Original poster
onlyjoking9329 · 15/09/2007 22:18

it must be unbelieveable for sarah & peter, i bet they are pinching themselves.
not long for you to wait now thou lisa.
steve not so good today but he has had two really good days this week

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Original poster
onlyjoking9329 · 15/09/2007 22:22

i have added you lisa, as you prob know me and sarah would often chat on MSN until the early hours

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