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Original poster

Steve has finally agreed to have the macmillan nurses in, but.......

101 replies

onlyjoking9329 · 18/09/2007 19:02

after making a few calls it transpires that he should have been refered by the oncologist, his oncologist hasn't seen him since 15th aug and wont be seeing him til at least 2nd oct, so i was told to phone our GP, our GP says sorry but we can only refer terminal people i asked him if he had in fact read Steves notes after much shuffling of paper he said ok i will refer him today.
Does everything have to be a battle, or does it just seem that way to me?

OP posts:
FioFio · 24/09/2007 20:26

This reply has been deleted

Message withdrawn

imaginaryfriend · 24/09/2007 21:51

OJ You must feel like crying all the time yourself

DottyDot · 24/09/2007 21:52

OJ - thinking of you xxx

Original poster
onlyjoking9329 · 24/09/2007 22:22

i must admit it has broken me today.
i laid with steve tonight and hugged him whilst he cried. he is asleep now so i have had time to think feels and sob.

OP posts:
imaginaryfriend · 24/09/2007 22:39
Sad
slowreader · 24/09/2007 22:52

Onlyjoking I am so sorry.
I think you live quite close to me.
If you ever think I can help please say.

Original poster
onlyjoking9329 · 24/09/2007 22:58

Thanks slowreader, i will bear that in mind, i am near nottingham

OP posts:
Christie · 24/09/2007 23:05

This reply has been deleted

Message withdrawn at poster's request.

Original poster
onlyjoking9329 · 24/09/2007 23:09

all kind thoughts are welcome, you are all very lovely listening to me worrying and whinging on.

OP posts:
toomanywrinkles · 24/09/2007 23:42

Babes you are doing so well do not ever feel like you are whingeing you really are not.
bless you for worrying about others.
Do you know i am a long time lurker but i come out of lurkyness to post on your threads because as much as you may not see it, i am inspired by your posts.
you amaze me.
how many people could cope day in day out with the stuff you deal with and you do it with such grace dignity and humour. your love for Steve and your kids shine through. there are maybe 1000 mumsnetters and i don't see that any of them are dealing with the stuff that you are dealing with what with the kids and steve, you are amazing i wished i lived nearer i would be over to help you as much as i could. you really make me evaluate my DH and my life in general.

Original poster
onlyjoking9329 · 25/09/2007 10:38

Wrinkles you are very kind, i am nothing special i am pretty much doing the same as everyone else and looking after my loved ones, we just have a few extra challenges along the way
i kind of muddle throu and hope no one notices that i haven't hoovered and other non essential stuff.

OP posts:
LilyLoo · 25/09/2007 12:25

Poor Steve and you , cuddles are all you can do OJ.
The hard thing is you can have many more days of coming to terms with things as they forget many conversations.
That's just typical for the treatment time, will you be able to get thte kids sorted out ? Hopefully when you are there you will have some say in making the time for the next appointment.
Hoping there are less tears today, i'm sure your due a 'good' day

pagwatch · 25/09/2007 12:33

onlyjoking.
It is unfairthat you have to deal with this. It must be very hard to find some sense of balance. You are dealing withtheneeds of all around you and with ASD I know you have the added problem of trying to interpret how your DC's are processing what is going on.
My son with ASD didn't understand that my dad had died for several months later - and when he finally understood he was so happy but I realised that it had been a strange comfort to me - as if in DS's world somewhere my dad was still there iyswim.
You are juggling so many things and so many emotions - but you ARE doing it and getting up and putting one foot in front ofthe other.
I know you have no choice but that does not make it any less brave or make you any less admirable.
I hope you are getting some support and some comfort from the knowledge that so many people are thinking of you. I know it is so inadequate but I hope on some level it helps.

Original poster
onlyjoking9329 · 25/09/2007 15:17

Lily, when we go on thursday we will get the other 29 appts am keeping fingers crossed that they are not at silly o'clock.
DSs respite carers are going to pick all three up from the school bus stop and keep them until we have finished

OP posts:
LilyLoo · 25/09/2007 15:26

Will keep my fingers crossed for you then OJ.

ju · 25/09/2007 22:40

OJ thinking of you and your family

Fingers crossed for Thursday

chonky · 25/09/2007 22:42

Thinking of you OJ

slowreader · 26/09/2007 09:24

I am near Chesterfield OJ, I thought we were closer but still not a million miles away from you if I can ever help.

Original poster
onlyjoking9329 · 26/09/2007 12:24

Thanks, i will get all 29 appts covered somehow, at least i will have time to plan ahead

OP posts:
bigcar · 26/09/2007 12:51

oj, so glad Steve has agreed to see the mm nurses, they really are fab. My mum had the same with her meds, she was always convinced she had taken them already or that shed had the wrong ones, it is a battle, but it is worth it. As for stubborness, I think it can help, I'm convinced mums stubborness kept her going as long as she did, even if it made a small amount of the time difficult for me. Hopefully youll get a good time for Steves other appointments, they sound quite understanding.

Sunshinemummy · 26/09/2007 12:52

Agree re. Macmillan nurses - they really are wonderful and they're a great help to all the family not just the patient.

Original poster
onlyjoking9329 · 26/09/2007 13:17

the MM nurse is lovely
we are taking bets on how many out of 30 appt are in the mornigs as they said they would try to give us mornings if poss.

OP posts:
LilyLoo · 26/09/2007 14:24

Can imagine not many but hey who knows

imaginaryfriend · 26/09/2007 17:21

Good luck, OJ.

... and by the way if anybody has the right to be 'worrying and whinging on' it's you!

Pixiefish · 26/09/2007 17:41

glad he's agreed to the mac nurse and that she's lovely. My cousin is a Mac nurse and I think they are a certain 'type' of person.

Sending you and Steve love and hugs

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