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Original poster

DH back in hospital, i am worried /upset but kids blissfully unaware, thats autism for you

55 replies

onlyjoking9329 · 23/01/2007 21:18

DH went for a brain scan yesterday, he got a phone call at lunch time to say they had found some abnormalities and want him back in pronto,the nuero guy wanted the brain scan to check/rule out MS/ brain tumour.
he has gone back to hospital taken by his brother cos it ain't easy to find childcare for my three. meanwhile i am having to listen to the usual bizzare chats with my three waffling on about tescos blue milk. what time Beths imaginary baby needs to go to his imaginary nursery and what characters DS has unlocked on lego star wars, when all i really wanna do is curl up in a ball and sob
we were supposed to be going on holiday 15th feb so looks like we will have to cancel, which will not go down well with the kids.

OP posts:
Califrau · 24/01/2007 17:32

This reply has been deleted

Message withdrawn at poster's request.

Blandmum · 24/01/2007 17:38

Oh hell OJ, sending you all my best wishes and hugs.

Saker · 24/01/2007 18:38

I am so sorry to hear that.

Aloha · 24/01/2007 18:39

Oh no! What upsetting news. I wish you all well.

Original poster
onlyjoking9329 · 24/01/2007 19:46

now back from the hospital, the hospital have done a full body scan to check if any other tumours, they will be having a meeting about steve in the morning to decide on course of action. the top nuero bloke is doing the meeting and i need to go in tommorrow at midday, Steve was trying to be jovial but i know it was just a cover and that he is frightened.

OP posts:
Bowbelles · 24/01/2007 19:56

I'm so sorry OJ {{hugs}}. Keep positive.

jenk1 · 25/01/2007 17:42

oh no ive only just seen this OJ, im so sorry for you.

jen
xxx

mummy2aaron · 25/01/2007 19:51

OMG of course he is frightened hun, is there anyone at all that can help with the kids? You must be going through hell. Let me know if there is anything I can do for you even if it is only an online Tesco's order.

tamum · 25/01/2007 19:54

I'm so sorry onlyjoking. I really hope it's better than you fear.

Original poster
onlyjoking9329 · 25/01/2007 21:21

the three consultant came to see us today, Steve was just unwrapping
birthday pressies, Doc says oh happy birthday would you rather i came back
tomorrow.
steve said no tell us now . doc says two things happening,

  1. steve has got MS
  2. Steve has a Brain tumour, neuro bloke said he has a lot of experience of both of theses things BUT not when they present together. Dr also said the funny smells and tastes steve was getting were indicators of epilepsy, therefore no driving & no holiday. Dr says that he is gonna consult with the neurosurgeon to plan the course of action and hopes to have some sort of plan within next few days. All this waiting is just too much.
OP posts:
Saker · 25/01/2007 22:50

How awful. I am really sorry. I can't think of anything to say of practical value but couldn't not answer.

2mum · 25/01/2007 23:28

I have only just seen this oj, i am so sorry for you and your family. I dont know what to say just that i cant imagine what you are going through. You deserve some luck and i hope with treatment and surgery it will help improve your husband condition.

mummy2aaron · 26/01/2007 07:48

I have no experience of ms although my grandmother had a brain tumour but I was too young to remember so can't help there. This is so traumatic for you. I truly hope within the next few days a the Doc's will find something to help. xxx

jenk1 · 26/01/2007 16:30

im so sorry OJ, i dont know what else to say really

i hope they are able to help Steve live better with these conditions and that they come up with a plan to do this effectively.

please keep posting.

love jen
xx

blossomhill · 26/01/2007 19:31

Oj ~ I am so so sorry to hear this

Please keep posting, you know we are all here for you if you need to "talk"

Sending lots of love and hugs Blossom xxxxxx

coppertop · 26/01/2007 19:44

Sorry I've only just caught up with your news. I hope you can get some answers and a plan soon. xxx

caroline3 · 26/01/2007 22:09

OJ so sorry to hear your awful news. Life is so unfair sometimes. I really hope the medics are able to treat the tumour. I know a couple of people with MS and they do lead reasonably normal lives and don't seem too affected by the disease.

Original poster
onlyjoking9329 · 27/01/2007 20:20

update
Steve is home, they decided it was more of a risk to do a biopsy when he currently seems stable, they want him to go back in three months for further scans to check if any growth, doctor said we can't go on holiday and will review at next appt . steve will have to go back in if his condition gets worse. As steve hates hospitals i doubt he will tell me if he feels worse. Steve does understand that he has a tumour and MS but when he is confused he says he hasn't got one.
so it's a case of wait and see and cancel the holiday that we could really do with right now. we didn't want to have two weeks in lanzarote anyway, got to sort out with the insurance and see if we can at least get some of the money back.
and of course i have to try and explain to the kids that we are not going to lanzarote in 19 sleeps.

OP posts:
mummy2aaron · 27/01/2007 20:39

Oh heck - some normality is good but a terrible wait until something happens. Thinking of you all.xx

Original poster
onlyjoking9329 · 27/01/2007 20:47

i feel guilty as i have been feeling bitter/angry today, bit like the feeling i had when the kids were first DX, then i feel bad for feeling why is this happening to us.

OP posts:
Saker · 27/01/2007 23:09

I'm not surprised you feel angry and bitter. It's only natural. I think anyone would in your circumstances and I don't think you should feel guilty about it. I am sorry you are having to cancel your holiday as well and having to cope with explaining it to the kids. If the doctors are advising you not to go I should think you ought be entitled to all the money back - can you get them to write you a letter or something?

jenk1 · 28/01/2007 08:56

oh no, shame about the holiday, you should be able to get a full refund (with my ex travel agents hat on!) if its for medical reasons, you will need a letter from Steve,s GP/Consultant stating that he is not fit to travel for medical reasons and then send it to your insurance company.

I remember having to tell DS we werent going on holiday a couple of years ago, i think IIRC that i bought him a new game for his computer which calmed him down.

Are you getting any help with things like respite/Social Services etc?

Hugs

Jen
xx

Original poster
onlyjoking9329 · 28/01/2007 10:59

consultant did say he would do a letter for the insurance people, my girls will be ok afterall they are going to disneyland on school trip in july,with DS i will promote the fact that he will now be here for his girlfriends birthday.
i think its the uncertainty of the whole situation that is difficult, i mean how do you accept and live with all this stuff, i should be able to do it afterall i accept and live with all the autism stuff but this seems bigger, harder and just as unfair if you know what i mean, sorry for the ramble.

OP posts:
2shoes · 28/01/2007 12:32

only joking. I am thinking of you all. nust be such a hard time for you.XXX

Original poster
onlyjoking9329 · 28/01/2007 21:16

thanks, it has been a very difficult and uncertain time and i guess there is no telling when or how it will end

OP posts: