DH has to go in hospital tomorrow for brain tumour removal, am frightened.

[onlyjoking9329]

had a phone call form neuro bloke at hospital this morning to say scan shows aggressive growth of tumour. tumour now thought to be higher grade
have sorted out for the kids to be looked after, they are blissfully unaware.

how is he today OJ?

Sounding like vaguely good news then, oj. Hope Steve continues to be chatty and starts making more sense soon

they have taken out as much as they could but couldn't take it all out, they are talking about radiotherapy and regular scans, they know it will come back as it can't all be removed, it is just a case of keeping a close eye on it.

OJ

Just read this thread - sending love and best wishes to you, DH and kids.

Keep strong and keep in touch with MN'ers.

Munch
xxxxx

Just seen this, OnlyJoking, lots of best wishes coming your way from me.

My thoughts and prayers are with you, your dh and family oj x

Mhamai

thankyou everyone. we are keeping everything crossed for the test results of the tumour.

Only just seen this thread, but send love, prayers and best wishes to you, Steve and your family. I hope everything looks up from here for you. x

OJ Dont worry about it not all being removed; my grans wasnt all removed (1963 so pre-scans, scalpel only surgery and in the very early days of chemo so they couldnt offer her anything like that)in fact they didnt replace the piece of skull they had removed but left her with a circular soft spot about 2" in diameter because they estimated that it had taken 5 yrs to grow and would probaby grow to the same size again in another 5 years, and not having a solid barrier, but just a flap of skin to restrict it was supposed to give her a few more months!!! (Oh the joys of the early days of brain surgery!)It never grew again because as I said in an earlier post she lived until she was 85! I hope the same happens for Steve.

Good vibes to you & Steve, OJ. Just read this & what an ordeal for you all. Here's to hoping the prognosis is good & recovery fast.

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been away and only just seen this. Wishing you all be very best wishes. What hospital is he in? Very scary. Lots of prayers for strength and recovery. xxx

Been thinking of you all OJ.

onlyjoking - thought I'd post, not email. I'm so glad steve got through his surgery ok but really sorry they didn't get it all. BUT, as you know, my dh's brain tumour is either grade 3 or 4 so pretty aggressive too. Surgery isn't an option for him due to the appearance of the tumour and where it is etc, but the radiotherapy and chemotherapy have shrunk it down to 1cm in size. His prognosis has changed us being told in april he had only months - 2 yrs max to 5-10+ yrs (assuming it doesn't all go wrong in the short term). So although radiotherapy and chemo don't seem as good as scooping it all out in surgery, they do work. I had such low expectations ... the tumour on his first scan looked massive, but this time it was tiny. Only down side to the radiotherapy is their hair falls out in patches all over the place (DH has shaved his head now ... he'd have a crazy mullet otherwise) ... least of your worries really but just wanted to pre-warn you!

DH is taking temozolomide chemo ... only just been approved and is proven to have good results working alongside radiotherapy. I never thought I'd be in the situation where I would be literally sobbing with happiness that my husband was being told he had 5-10 years to live ... how your sense of perspective changes eh?!

Thinking of you all x

just got back, another long day, the nurse thinks he will be able to come home tomorrow, she says he will need to rest our house is not restful.
he will have to go back to have staples removed and go back for the results and go back to see the neuro bloke.

my goodness that is quick

to be honest i was shocked that they would send him home so soon, it is gonna be hard when he comes home, cos the kids won't understand leave dad alone.
Elliot darling please take that metal detector away from your dads staples and step away from the magnets too.
looks like i will be using a lot of the respite family.

thanks wishing chair i am so pleased for you all that you have been given a better outcome, steve is sporting a dodgy haircut and some lovely support stocking too!

Well, apart from them always being short of beds, most people hate being in hospital and do get more rest at home even with loads of stuff going on.

Your case is different though and I agree with Cf, tell them.

(We have a small local hospital which is used for eg people with broken legs who can't go home yet but don't need to be in the Infirmary any more, or elderley people whose relatives need a break etc - very pleasant and def restful - is there anything like that anywhere near you?)

they are well aware of our situation, steve is desparate to see the kids. he hasn't seen them since saturday. he is doing fantastic, it will just be hard work caring for the kids and steve, the kids will be wanting to go out and i don't know that i can leave steve on his own as he gets confused with his meds and stuff.

OJ -tomorrow? Shit that is too soon. Tell them you cannot have him tomorrow- these poeple have no concept of an ASD household. I found it hard enough being discharged home 3 days after a c-section with ds3. You can't be on your knees. Do you have people who come in and help?

we don't get any help at home but we have had a lot of help this week with the kids.

i think we will have to put a baby gate or two across our bedroom door to keep the kids out so steve can rest upstairs in the daytime.
it would be much easier if it wasn't the school holidays.

If he's anything like my dh after his biopsy (not as invasive as an op but similar), he'll be on loads of steroids too. They can make them go a bit loopy. You're right, he will need to rest but he might be up and about faster than you think. If you tell the hospital you don't think you can cope, shouldn't they bring in social services to do an assessment to arrange home help for you? I didn't think they could discharge someone if they weren't going to be ok at home. Maybe I'm being naive. You could also try contacting MacMillan ... they might have contacts of organisations that can help (I did a quick google search and Sue Ryder specifically provide in or out of home care for people with neurological problems ... but I'm guessing you need someone to help with the kids, shopping, cooking, washing etc.). Aren't there just general volunteer groups that do stuff like that?? No idea how you find them though ... yellow pages??