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Original poster

Today we got Steves brain tumour results back

756 replies

onlyjoking9329 · 10/08/2007 14:52

had a phone call from the hospital.
Steves tumour is grade 4.

OP posts:
Sobernow · 18/08/2007 22:42

This reply has been deleted

Message withdrawn at poster's request.

Original poster
onlyjoking9329 · 18/08/2007 23:20

was a lovely night not too many tears and lots of giggles, talked about when us and mates went to lanzarote for my 40th and when we went to portugal together, it did hit home that we won't be able to go there as a family again
they helped us with our lovely chocolate hamper, and with the tia maria and wine!

OP posts:
mummydoit · 18/08/2007 23:39

So pleased you had a good night. Here's to many more!

Original poster
onlyjoking9329 · 19/08/2007 00:04

We are trying to make the most of the time that we have, not sure how the treatment is gonna affect him so we have just over two weeks to do what we can.
this time of night is always hardest Steve is in bed and i sit alone thinking about all sorts of stuff.
thank goodness for mumsnet.

OP posts:
Original poster
onlyjoking9329 · 19/08/2007 00:05

How's your DH doing?

OP posts:
Original poster
onlyjoking9329 · 19/08/2007 01:18

better get off to bed just done meds and changed his ice pack, he has a lot of pain and swelling around the scar so wears a very funky lycra hat with an ice pack in it, but it needs changing a few times in the night.
at least the postie won't be waking us up in the morning

OP posts:
forsale · 19/08/2007 01:43

you sound amazing onlyjoking to be dealing with all this.

ho9w are you feeling?

UCM · 19/08/2007 01:48

Only Joking, I am so sorry that you are both going through this. xxxxxxxxxxxx

mummydoit · 19/08/2007 08:31

He's not too bad, thanks, OJ. Still can't eat (just getting by on fluids) but he's almost finished his radiotherapy and we're hoping to see some improvement after that. He's a bit down at the moment as the oncologist told him last week that it can take several weeks after radiotherapy to see an effect. He was counting on seeing an improvement as soon as it finished. Not a lot we can do about it, though. Just wait and see what happens.

Original poster
onlyjoking9329 · 19/08/2007 10:41

why cant he eat?

OP posts:
Original poster
onlyjoking9329 · 19/08/2007 11:20

Steve had a rough night we were downstairs having a drink at 2am and again at 3.30 and 6am. he is really tired today so he's gone to have a sleep whilst i take the kids to the cinema.
dunno if he feels worse because his steriods have been reduced or something else

OP posts:
LilyLoo · 19/08/2007 11:22

fab you had a good night OJ it's good to just think of something else for a short time isn't it ?
Hope you have a good day today and the hotel idea sounds wondeful !

LilyLoo · 19/08/2007 11:23

sorry x post oj, sorry the night didn't end on a high note. Why have they reduced his steroids ?
What are you going to watch at the cinema ?

Original poster
onlyjoking9329 · 19/08/2007 11:30

consultant wants him off the steriods , he has been on them since before his surgery, i have a three week plan to reduce them, having 2 tabs 1 one and 1 the next for a week then 1 a day for a week then 1 alternate days. he has to going back a step if he gets worse, just debating how long we leave it before deciding he is worse, it could be cos of meds or it might be something else.

OP posts:
LilyLoo · 19/08/2007 11:34

Can you not give his consultant a call if he is feeling rough and see what he says ? It is surprising how much they help them feel better though my mum never came off hers so i not sure if this is normal hopefully mummydoit might be around to give you more advice on this.

Christie · 19/08/2007 11:59

This reply has been deleted

Message withdrawn at poster's request.

mummydoit · 19/08/2007 13:02

Sorry to hear Steve didn't sleep too well. I don't know much about steroids, I'm afraid. DH only had them while he was having chemo and, even then, only took them for three days in each three week cycle. He was warned not to take them late in the day as they would affect his sleep. He had to take them by early afternoon at the latest. If he's changed the times he takes them, that might have an influence. Otherwise, I'm afraid I have no idea. I'd be inclined to call the hospital for advice. Ours told us not to be afraid to call them with any query, big or small - that's what they're there for.

Original poster
onlyjoking9329 · 19/08/2007 16:38

he takes them first thing in morning along with something to protect his stomach from the steriods.
will see if any better tomorrow and then phone the Doc

OP posts:
mummydoit · 19/08/2007 18:48

Can't be the timing, then. Best see what the doctor says tomorrow. Hope you both get a better night tonight.

mummydoit · 19/08/2007 18:53

OJ, just realised you asked me why DH can't eat and I didn't reply. How rude!!! It's because his tumour is in his oesophagus and stomach and it blocks food getting down. It got progressively worse and, by diagnosis, he could barely swallow liquid. We had some improvement after chemo but it seems to have gone downhill again. He's back on liquids again which isn't much fun. We're just hoping the radiotherapy will do the trick. If not, it's back on the chemo. Worst case scenario, if nothing shrinks the tumour, is a stomach tube. My Dad has just had to have one of those inserted as his tumour didn't respond to treatment . On the plus side, DH got heartburn today for the first time since pre-diagnosis. It seems a strange thing to be pleased about but we're thinking if acid can get up past the tumour, maybe soon food can get down! Fingers crossed anyway!

mummydoit · 19/08/2007 18:53

OJ, just realised you asked me why DH can't eat and I didn't reply. How rude!!! It's because his tumour is in his oesophagus and stomach and it blocks food getting down. It got progressively worse and, by diagnosis, he could barely swallow liquid. We had some improvement after chemo but it seems to have gone downhill again. He's back on liquids again which isn't much fun. We're just hoping the radiotherapy will do the trick. If not, it's back on the chemo. Worst case scenario, if nothing shrinks the tumour, is a stomach tube. My Dad has just had to have one of those inserted as his tumour didn't respond to treatment . On the plus side, DH got heartburn today for the first time since pre-diagnosis. It seems a strange thing to be pleased about but we're thinking if acid can get up past the tumour, maybe soon food can get down! Fingers crossed anyway!

mummydoit · 19/08/2007 18:54

Sorry - didn't mean to post that twice .

toomanywrinkles · 19/08/2007 19:00

oh no OJ
I have been away but have thought of you often,i was so praying for good news for you both. Have you been given any indication of time?
i will contact you directly as i really would like to do something for you all, you are so strong and have so much to cope with

xxx

Original poster
onlyjoking9329 · 19/08/2007 19:33

Thanks mummydoit, i should have realize the reson why he couldn't eat solids, has he lost much weight?
what treatment it he on at the moment?
steve is eating quite well at the moment but that is probably due to the steriods.

OP posts:
looseleaf · 19/08/2007 19:57

OJ I'm so, so sorry. I really hope you're feeling the strength of everyone's support as it must be so tough to go through this.

My MIL was diagnosed with a grade 4 glioblastoma last October and is still doing really well. That probably doesn't help, but she was told there was no cure either and just a question of time. I will really be thinking of you and also hope you have a really good 3 weeks pre-treatment and that the radiotherapy not too awful (my MIL always sounded upbeat about hers but I think she's like that as never complains!)