Can i just scream/rant/cry here for a while have just posted Steves DLA forms off and feeling sad & crap about it all

[onlyjoking9329]

i have just posted steves DLA forms and think it is very unfair that after years of doing the Farkin forms for three kids with Autism that i have had to do one for Steve, the lovely macmillan nurse came yesterday to help with the form and as we are applying under the
farking special rules it did mean that we didn't have to fill the whole forms out but it does say quite clearly that it is for people who have less than 6 months to live and that has made me sad
Steves consultant had to fill in a form to say that he could apply under the special rules and his report made difficult reading.
the bit where he put " very poor prognosis" has hit me very badly.
Steve is blissfully unaware of any of this which is hard as i can't talk to him about it.
sorry for the long waffley self pitying thread but i just needed to let it out
to be honest i am not bothered about the money side of the DLA but do need a blue badge for steve as mobility is an issue.

Dont know what to say I'm so sorry that you are going through this

Hugs xxxxxx

Hello there,
i have not written here before but today i felt that i needed to.
i do not know your history but reading this page i see you are living with Steve who has Cancer, if you don't mind me asking what sort of cancer does he have?

My wonderful sister died from Cancer last year so i probably know a fraction of what you all dealing with.

OJ my love, I'm thinking of you constantly.

been a good day we had some mates over this morning then steve had a snooze whilst i took the kids to the cinema, he has done really well today and only had three lots of oainkillers
thelastword {cool name} So sorry to hear about your sister.
Steve has a Glioblastoma multiforme grade 4.
it is incureable because of its many deep roots that cannot be removed so it just keeps growing, his treatment is to try and stall its growth.

I really have nothing of worth to say, but want to send you some (((cyberhugs))))...not sure you are the hugging type...but it's just so sad for all of you
You are one strong person, you know...I think I would just break down and dissolve

Hi there
that is the same tumour my sister had, she started having fits and after scans she was told she had a tumour. she lived for 8 months after being given the news, it is a terrible cancer to have i feel for you.

Steve has not had any full seizures....yet
thats probably why it took so long to get a clear DX for him. Steve has been told 3-6 months but hoping treatment will extend it, 8 months seems to be average on the brain tumour forum i am on.

I just want to send you a hug. I'm thinking of you xx

a quiet day here today, the kids have gone out with respite family and will be back at 7, Steve and i were going out for lunch but he is not feeling up to it so is having a stay in bed day, i have laid with him for a while and spent some time Baking and ironing.
i am hoping he will wake up soon or he will be up all night again.

sounds like a mixed weekend in your house.
a shame you didn't get to eat out but nice that you got some time to bake and other stuff.

glad you had a reasonable weekend OJ, i bet

you are tired, mind you i bet you are

always tired.

Do you get much sleep?

Hi Oj just catching up with your new thread. Shame about lunch but guess it was nice for you to get some time to lay down together in peace.
What have you got coming up next week or is it all pretty quiet until scan ?

well i made steves fav chocolate orange cake X 3 he woke up for a few hours and is now fast asleep.
he wakes up 2/3 times a night and the girls wake up in the night and often need to have there beds changed, DS wakes up between 4-5
so i am kind of used to broken nights.

i really don't know how you manage on so little sleepm any chance of a sleep in the day?

OJ, I've been reading your threads but have never commented as there really isn't anything I can say to help. I'm so sorry that you and your family are going through this. I just hope that should I ever be in a similar situation I can be even half as courageous as you are being. You really are a wonderful wife and mother.

Just read that back - should be that you're a wonderful woman in your own right and also happen to be a fantastic wife and mother!!

Hi OJ,
Just checking to see how you are all doing , sending you love, xx

well i did have a little sleep today
Bamamama you are very kind but i love being my kids mum and Steves wife. i wouldn't swop

Glad you got some sleep today,OJ.Hope Steve had a good day xxx

not much sleep last night so he has been asleep a lot today, but we had a curry delivered tonight which was nice
He is in bed now and fingers crossed that he sleeps better tonight.

Curry,yum!!Are the dcs OK?Hope you have a settled night.DD saw her portage worker today who is fab.She has even done some crawling,yay!!!She was shattered tonight though!!Not even up to watching Night Garden!

yes the kids are fine not asking any tricky questions thankfully.
portage are great we had a lovely lady that worked with DS. good news on the crawling.
My three love in the night garden too.

Its lovely isn't it?I think it is cos it is so "gentle" Iykwim,calming music,simple bright figures.I find it quite bizarre but both dcs love it,ds nt and almost 4 loves it too.Have bought dd the little library of ITNG for her birthday.Cant find the Iggle Piggle character anywhere,though!!!Boots have sold out

Did you get any further with the tricky questions thing?Have the Macs offered any positive suggestions?(Please ignore if you don't want to talk re this.)

OJ I think you're amazing. I'm so sorry you are facing this. I hope you have lots more happy times with Steve to come x