it is Steves last week of radiotherapy & chemo, so why can't i feel happy about it?

[onlyjoking9329]

it is the last week of steves treatment and we are having mixed feelings about it, a lot of people have said i bet you will be glad once treatment has finished and at the begining of the 6 weeks i thought that would be true.
however now the end of treatment is close i am now worrying and this might sound odd.
whilst i can take steve to hospital everyday ( i feel that i am doing something)
we have the nurses and drs around to deal with any problems and stuff.
we have other people at hospital fighting the same stuff we will miss them.
at the moment we feel proactive as we are actively doing the treatment once this is finished then the tumour will just continue to grow unchecked and there is nothing we can do about it.
we will have to wait 4 weeks after the end of treatment to see if tumour has shrunk or stayed the same, we don't get another shot at the treatment so it needs to have worked in order to buy steve more time.
after the scan we wait 2 weeks for the results depending on the results steve may get more chemo 1 week in 4 this will take place around christmas

Oh god oj, this is so bloody shit, not a helpful comment i know, but you know where i am coming from xx

why why why ?

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yep it feels like shit alright

OJ-I am shit at things liek this but every post you make hits home.I only wish I could do the same for you.

Oh God I am really shit but am thinking of you and sending every single positive vibe I have your way.....

all positive vibes welcome.
tomorrow is a new day, it had better be better!

Hi OJ,
Heres sending you all armfuls of hugs and good vibes, sleep well, xxx

oj, thinking of you and steve xxxxx

It will be better....nopromises but am trying hard for you

sorry today has been so tough.

OJ, you're doing great, can't believe you're sparing teacher's feelings at school too - like you don't have enough to look after already. I'm with you on the why, why, why questions and hope you have a better day tomorrow. xx

more hugs

Evening O.J.
Seems like I haven't spoken to you for ages,you are missed over at the .S.
I am under orders to get you back on FB as well,so try again we are all over there

Sounds like you have had a couple of crappy days mate,people seem either cautious or semi cautious when it comes to illness,understandably,but not when you are the person wanting straight answers.

Sending you loads of hugs and you know I think about you all constantly,hope tonight is a peaceful one for you.x.

can you get in touch with someone like the woman on mummy diaries to help you ? I just had a quick look at their website - they have quite a few links to other groups - some you have already mentioned - but it may be worth contacting others to help you get through this.

I am guessing Steve is not up to making memory boxes for them - but maybe you can be doing that now - sort of with him but without being explicit - it might help you as well as them.

if wishes and hugs could make this all go away then we would be fine.
i have had a look on winstons wish site not found anything aimed at kids with autism thou, even the NAS have nothing useful, everthing is aimed at older/more able kids.
someone suggested a charity in oxford i forget the name but they do a pack aimed at SN kids and i have emailed them but i am waiting for them to get back to me.

OJ-Just a thought about helping the kids to understand. When my Mum died 18 months ago, my DS (aged 7 a the time and has AS) had some one-to-one sessions with a drama therapist who works at his school. She was really great and it helped a lot. Would you be able to access a drama therpist? Your local NAS support group may be able to help find one?

I would think your kids are a special case that are not covered by the generic website - I would try and make personal contact with Winston's wish and see what they can offer - because I guess any help at all would be welcome.

Onlyjoking - I am in Oxford, so if you don't hear back from them, or if I can help to chase them up at all, do let me know. I'll happily go and bang on a door.

Thinking of you.

thanks NQGU, it was a charity called seesaw?

No problem. Do you want to CAT me with a copy of the email you sent to them, setting out what you are hoping for, so that I don't give them mixed messages? Or just CAT me anyway and I'll reply so that you have got my email address.

i have a few contacts in the autism world, my mate and i set up the local autism support group!
they don't have a drama therapist at the kids school, the ed Psyc may be able to help so thats something i can check out.
the memory box is a good idea but would have to be done under cover
we have been making use of the video camera and taking lots of photos too.

can you talk to Steve about what he would like for the kids as they get older - and somehow record it. Get him to talk about things he remembers about when they were little.

He doesn't need to know you are collecting it all together - but at least that way they get some contact with his own words and thoughts.

Not easy to do - but at least you get to feel you are doing something positive.

thats a great idea, i do think as time moves on and steve gets worse he will accept what is happening and then will be able to do stuff like write letters and maybe make a video, but not just yet it's not real for him now.

that sounds like a great idea OJ - but only when you are both ready...

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i don't know when we will be ready to do this, it's not really something to look forward too and doesn't feel very positive IYKWIM

Hi OJ

Sorry you are having a shit week

Thinking of you and Steve

Ju