well thats the first full week of chemo & radiotherapy over with, only 5 weeks left

[onlyjoking9329]

Steve has been very brave this week and has had the treatment that he was saying he would not have.
He is very tired and getting pain in his head so taking a lot of pain relief which makes him feel very odd.
He has finally been honest with his family which i know was very hard for him.
i am so very very proud of him.

we already get DLA for three kids with autism and have a mobility car, so we have that sorted, it is sad to admit that steve doesn't have long to live

WW how is your FIL doing now?
mac nurse is fab

So glad to see you are getting brill support from the mac nurse.
So to see Steve is struggling so much. It is such an awful decision for him to make but it does sound as though he is coming to terms with it now, not that that makes it any easier.
Wishing you all much love x

WW sorry to hear that
steve has had a crap day and didn't want to go to hospital i managed to get him there stopping a coulpe of times for hom to be sick.
then when we got there he was sick in an old ladys handbag
saw the consultant who has changed his anti sickness tablets again.
hoping tomorrow will be easier.

onlyjoking - just popping on to chech on things for you, I am thinkg of you everyday and please just remeber that everyday, no matter how sick Steve is is a day to be treasured and remembered for ever

OJ sorry to hear this news, nothing constructive to say just sending you very big hugs

thanks, we do try to treasure the time we have but that is difficult as steve sleeps most of the time now apart from the daily hospital trips.
The chemo and radiotherapy are really difficult for him and spending lots of time in the cancer wards is hard too.
Steve decided again last night that he was going to stop all treatment as it was making him feel so crap

Hun this must be so painful for you all. you must be so strong to be holding it together, you may feel that you are not holding it together but i for one think you are doing a super job.
Are you getting any time for yourself?
how are the kids dealing with it?
are they asking questions?
how do you feel about Him refusing treatment?

Nothing to say OJ just sending you lot's of hugs.
I suppose this is the only part of this god awful thing that he has any control over.

we are just getting throu the days as best as possible, the difficulty is that steve has severe memory loss and so forgets what his prognosis is, i don't forget
i do get time to my self cos steve is in bed all the time but i can't leave him for long.
The kids are saying things like Dad has been poorly for a long time hasn't he? i just agreed that he has been poorly for a long time, what else can i say?
they have difficulties understanding stuff, i have difficulties understanding this stuff too.
life is cruel and unfair and i try to protect the kids from knowing that.

the mac nurse is very good but not used to autism. the kids SN school will help however they can, but we haven't found any specialists as such

how are things going OJ?
is steve still doing the treatment?
still thinking about you all.

steve having a bad day, kids falling out, just the usual stuff here.
i could really enjoy a holiday right now.

OJ! Sorry you're having a bad day. Hope Steve is feeling better later and the kids make up soon.

steve is no better but the kids calmed down a bit, i think they are worrying about their Dad being poorly

Just popping in OJ to check hoe your all doing it's not a good day today. Hope tommorrow fairs better. Did you try contacting Winstons wish for the kids ?

no haven't looked at it yet, i will do at some point but it feels odd cos Steve is still with us.
have ordered some childrens books so may get some ideas from them

OJ sorry to see you are having a bad day and that steve is not very well.
how much longer is this round of treatment?

He has 4 more weeks of radio and chemo at the same time, thou he doesn't have radio at the weekends.
he won't be given any more radio after that