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Original poster

things going downhill fast, awaiting emergency doctor.

360 replies

onlyjoking9329 · 21/10/2007 12:47

Steve has got much worse since yesterday morning. he was sick six times and he is the same today, he has a lot of swelling around his head and eye
i phoned the docs and got thou to NHS direct.
they asked if steve would go into hospital, had to say no as he wants to stay at home.
just need to get the swelling, pain & sickness sorted out.
the doctor will be here within an hour

OP posts:
TimeForMe · 31/10/2007 09:44

Hi

I hope you don't mind me adding my two pence worth on your thread. I 'pop in' everyday just to see how you are all doing but i have never posted before.

I just wanted to say, with regard to Steve seeming to be in denial, that I wonder if he is trying to paint a pretty picture, so to speak, for yours and the childrens sake as much as his own. Maybe even more than his own.
I wonder if he is feeling your pain too and is trying, in his own way, to help you through it by talking this way. When you love someone so much you cannot bear to think of them being upset, in pain and scared (as you know) maybe Steve is trying to lessen the pain he thinks you are feeling.

It's just a thought though, feel free to ignore me

I do think about you and your family a lot though and wish you lots of love xx

TotalChaos · 31/10/2007 09:46

reading and thinking of you. not really got anything useful to say over the difficulties with steve and the DX, just want to acknowledge how awful and stressful this must be for you.

bogie · 31/10/2007 10:04

Hi OJ we are from notts aswell my uncle has had a treatment brought in from america (banned in the UK i think) that people are claming cured them of all sorts, cancer, aids ect. If you would like to see it he has a dvd of it and i could drop the dvd off to you at some point.
( i know i sound like a crazy woman but hes raving about it I don't know much about it. But it doesn't cost any thing just thought i would let you know.)
My email is [email protected]

HonoriaGlossop · 31/10/2007 10:09

I have often read your threads and though we don't 'know' eachother on here I do think of you and your family and I'm so sorry you're having to cope with this situation. It seems to me it must be double the pain for you, not only going through it as a partner, but feeling your kids pain as well. I'm so sorry. It's so unfair

Sending lots of positive thoughts.

bozza · 31/10/2007 10:13

OJ I understand how difficult it must be with you and Steve being in different places and how the tumour is affecting his memory. My Grandma had Alzheimers and would forget that people were dead (her parents, brothers etc) and be devestated if you told her. So in the end we tried to avoid giving an answer. But I can see it is much more of a difficult situation with Steve, as it is about himself and also you have the children to consider.

throckenholt · 31/10/2007 10:21

that must be so heartbreaking to deal with. Have you talked to the macmillan nurses about it ? Maybe they can offer you a sounding board or councelling where you can talk things through.

Is there anyone on the autism support groups who can talk things through with you about dealing with the single parent aspect.

It sounds horribly like planning for after Steve dies - but as you say - you are the one who has to deal with that reality - but now and in the future (while Steve is in some ways blissfully unaware). Take any help you can get to make it easier.

PrincessAfterLife · 31/10/2007 10:27

oh now I see that the DX makes it even more complex

wish I knew something useful to say

TrickORTripletEm · 31/10/2007 10:28

In my humble opion O.J. I would let Steve carry on. I wanted to discuss things with my dad,you know have a good conversation and say all the things I wanted to say,but he wouldn't have it,total denial. So painful for you I can imagine,but i guess it is just the way he deals with it. I know from what you said before that he likes to help as much as he can,perhaps its his way of helping you(even though its not) he probably has the exact same worries as you concerning the kids,so difficult for both of you.
You where I am,where all of us are.x.

(get your butt back to face book and try again!! We would love to have you on our friends list. I totally freaked out last night and left!! But I joined up again!!)

LilyLoo · 31/10/2007 10:55

OJ just popping in to send you all my love sorry things seem to be so tough again with Steve r/e forgetting the diagnosis.
I suppose for him it isn't as much of an issue of remebering his diagnosis as it is for you to keep up the pretence when he talks of the future. Sorry i haven't got any advice for you but sending you much love and hugs x

TheMadScaryHouse · 31/10/2007 11:00

OJ - Just a short message to say that I am popping on and keeping up to date with things. I hope that you are OK and that the children being back at school is making things a bit easier.

I am thinking of you

Original poster
onlyjoking9329 · 31/10/2007 12:22

his memory loss is kinda good/bad really cos he forgets his DX he thinks he is going to get better. The macmillan nurse is coming on friday to finish off steves DLA form, some days he is ok about applying for DLA other days he shouts and swears about it and says that he isn't entitled to it as he is not very ill
i have some books for the kids but not sure they are autism friendly.
i did get an email from jessica kingsley book place yesterday to say a new book coming soon Autism & loss

OP posts:
throckenholt · 31/10/2007 13:17

I know nothing much about autism - but I guess it is likely each of your kids may react differently - making it even more difficult to tackle it.

Have the school any suggestions on how to approach it ?

ernest · 31/10/2007 13:32

forgetting about dx is so cruel for you both. How terrible ?

ggglimpopo · 31/10/2007 13:46

Forgetting about the dx is a blessing for him and makes life all the harder for you. Can you treat it like that - as though it is a gift (the dream of a future) that nature through memory loss is giving him and that it is something that you can also give him. Hope is such a wonderful thing to have and such a terrible part of us to have broken.

I remember so well that bleak bleak time where I had no planning and no future seemed possible.

It must be almost impossible for you. How strong do we have to be sometime just to get through life?

I wish you all the very very best.

I also meant to say that my ex fil had carcinomatosis and the (joint) decision between us and the medics was that we would not tell him - he would never ever have coped. It was very hard but it gave him months of hope rather than of hopelessness. It may have been false hope but it did not change the prognosis and made all the difference to how he felt emotionally and about his illness.

ernest · 31/10/2007 14:03

I agree., I meant cruel for him if he is reminded and has to go through the shocking rediscovery. cruel for oj to have to bear such a heavy burden

TrickORTripletEm · 31/10/2007 14:35

O.J!! I tried to chase after you,hoping to be invited for cake. Did you see me or not? I was running after the school bus and I'm sure you looked around!!!

Have they all gone?
Original poster
onlyjoking9329 · 31/10/2007 20:37

been into school today and have made an appointment to see the speech therapist next week to see if she has any resources/ideas/contacts.
when Steve forgets i don't remind him it would be too cruel

OP posts:
RubyShivers · 31/10/2007 20:41

just wanted to say i am thinking of you and your family
you are in my thoughts and prayers
such a hard situation for you all
x

Original poster
onlyjoking9329 · 31/10/2007 21:14

Thanks Ruby, we will get throu this this is just a downward bit on the rollercoaster that is life

OP posts:
corblimeymadam · 31/10/2007 21:45

This reply has been deleted

Message withdrawn

Quattrocento · 31/10/2007 21:51

Thinking of you OJ, and so sorry you are going through this.

Hugs through the ether.

Original poster
onlyjoking9329 · 31/10/2007 21:54

Steve has had a crap day, he has had problems with balance and headaches, i wish they hadn't reduced his steroids as they really help him to have some quality to his life. thing is steve agreed with the doctor to reduce his steroids cos of the long term side affects this is he doctor who was going on about term effects of steroids which made Steve agree to the reduction.
this is the same doctor who told him had 3-6 months

OP posts:
cookiesandscream · 31/10/2007 22:28

am i reading this right, the DR says he has 3-6 months but is worried about the long term side effect of the drugs?
i really feel gor you OJ how much pain/pressure you must be under.
((((HUGS))))

TRIPLETlightEMup · 31/10/2007 22:42

I agree O.J. surely if it is making his day to day living more comfortable it's worth it isn't it?

throckenholt · 01/11/2007 07:58

can you talk to the consultant on your own - have a frank discussion about the prognosis and how to make it most bearable for both Steve and you.

Ask him frankly why the concern about long term side effects - because as far as you understand it there is no long term so it is not an issue. The short term is what is important.