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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:
Original poster
onlyjoking9329 · 22/09/2007 18:54

My Dh is also swearing at the moment as he is setting up a turntable that i got him so he can play all his old LPs.
it is encouraging to see how good the mac nurses have been for your DH.
thankyou for helping me to talk steve into it.

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roisin · 22/09/2007 19:31

One thing Mac nurses sorted out for my dad was to go and have a look at the hospice and the services they provided before he needed them, well before in fact.

He had no intention of ever going into the hospice, but going and visiting actually put his mind at rest and made him accept that they might provide a useful service at some point. In the end he didn't need to, and was able to stay home through a 'hospice at home' service, which he was linked to by the Mac Nurses.

Hope things go well tomorrow with the visit.

Original poster
onlyjoking9329 · 22/09/2007 19:35

we are having to go very slowly with steve cos of the brain tumour he is very confused and forgetful, to the extent that he forgets that he is terminally ill. so it is a massive step for him to except the mac nurse and he has only agreed to that as he thinks it will help me, once they are here he won't be able to resist talking to them but he is steadfast that he does not "need" them

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lizziemun · 22/09/2007 21:02

Onlyjoking

I think you will find the Macmillan Nurses will go and do what you want them to do.

My dad (he has Asbestoes (Sp)) has found them very usefull in helping him and hasn't been forced into anything he doesn't need yet.

But they have given him all the information that he and his wife need to know now and how they/can help him when he needs them.

Original poster
onlyjoking9329 · 22/09/2007 21:56

i think they will be very useful, they will have to go slowly or steve will ban them from the house
we have had a frank exchange of views today as steve indidts he has taken his meds when i know he hasn't he then is sure i am trying to kill him by giving him an overdose

OP posts:
Christie · 22/09/2007 23:06

This reply has been deleted

Message withdrawn at poster's request.

TotalChaos · 22/09/2007 23:08

Hope the visit goes well tomorrow, I would think that the MM nurses would be used to stubborn independent males!

LilyLoo · 23/09/2007 09:05

OJ great news that Steve has decided to see the mm nurses, i hope they can help you out and offer you all the support you need today.
As for the gp and oncologist, it is a catalogue of errors but as you knoe i am in the camp of but not as iv'e said before thank god Steve has you, and you are doing a fantastic job, although you shouldn't have to.
Let's hope today the mm nurses can go about relieving some of your pressure.

Original poster
onlyjoking9329 · 23/09/2007 19:26

Thanks folks, steve had a rubbish day today, not really in pain but discomfort in his eyes and numbness down his left side.
Mac nurse came and stayed for two hours, she was lovely she didn't seem to mind being asked her DOB by DS and lots of other stuff.
she has made things a bit clearer for us both, thou we had to be careful what we said as the kids were around.
She was fab with the kids and stayed for two hours eating cream cake and drinking coffee, she promised the girls that next time she comes she will bring cherry bakewells

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Blandmum · 23/09/2007 19:28

Glad that she was nice. I know it can be tough when the children are around.

When is she coming back?

what has she sugested?

Original poster
onlyjoking9329 · 23/09/2007 19:36

we found we were talking in code a bit. she left the next vist up to us we have some hospital appts for the next 6 weeks. We have her number, steve starts treatment on thursday so we will be at hospital every weekday for six weeks so i think we will be able to ask them questions and find out stuff, she said that she thought we would be given our six weeks of time slots at the start of treatment, i hope so cos childcare is a little trick anyway never mind at short notice.
his scan tomorrow is at 3pm, they are having tea at the girls TAs house

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Peachy · 23/09/2007 19:37

Had to pmsl at the eating cake bit- yep sounds like the ones I used to work with! bit they wouldn't refer if not rterminal- that wasn't policy when i worked there, wonder if it has changed?

glad she was great with the kids, that was one piece of feedback we always got- that when theyc ame they belonged to the whole family and didnt seem like yet another professional.

REALLY hope she amkes things just that bi8t easier for you lot, at elast she's another person to carry the burden, they're good at that.

massivebigpantsface · 23/09/2007 19:40

Just saw this thread oj, the macmillan nurses are wonderful (ime), I hope that you find some comfort and relief from their support x

Original poster
onlyjoking9329 · 23/09/2007 19:42

it was our GP that said they could only refer terminal people dunno if that is just our GP being mean or what.
the kids loved her and although they were told she was a nurse none of them asked why she was here. she did ask on the phone if she should take her badges off before visting, which was good cos i wouldn't have thought of it and DS can read and would have asked questions

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toomanywrinkles · 23/09/2007 22:14

So glad that the meeting went well. LOL at your DS asking her DOB
It sounds like she will be very helpful to you as a family.
How does Steve feel the meeting went?

imaginaryfriend · 23/09/2007 22:14

OJ, is there anyone who can help you to explain to the kids what's happening with their dad?

Do you think Steve knows he's 'terminally ill' now or is he still in denial? And how are you coping yourself? You're managing to stay so remarkably cheerful. I really admire you.

Original poster
onlyjoking9329 · 23/09/2007 22:27

Steve was pleased with the meeting
it went well as a getting to know you meeting as the kids were around so having to be very careful. she spent a lot of time talking to him about the importance of his meda as he often refuses to take them and will insist that he has already had them when i have them locked in the safe when he is like that he will insist that i am trying to kill him for the insurance money then later he doesn't remember a thing it's a crap kind of tumour as he is affected in so many ways but he doesn't always realize it, which is a blessing for him i guess.

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Original poster
onlyjoking9329 · 23/09/2007 22:35

the kids know that Daddy has a headache and that the doctors are trying to sort it DDs think calpol is the answer. thing is this could go on for months most info says 6-12 months but given that they were slow to DX steve we can't really be sure of time scales. whilst thing are as they are the kids are just accepting things and i don't think they need to know for a while yet, i don't really want them to know until they have to and i don't know when that will be, Steve knows on a good day that he is going to die from this
i think the mac nurse will be able to help with talking to the kids at some point, just not yet and to be honest it breaks my heart to think of them knowing and not being able to understand it. i would love to be able to sheild them from it.

OP posts:
imaginaryfriend · 23/09/2007 22:46

onlyjoking, so .

If only a miracle could occur.

Original poster
onlyjoking9329 · 23/09/2007 23:06

if only it could. for now we have to deal with the harsh reality, it is crap but we are getting used to it, it's amazing what becomes your "norm" MN has given me a place to be sad/ angry and have laugh sometimes too.

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toomanywrinkles · 23/09/2007 23:49

i wish you could have a miracle too. this must be so hard for you, i really don't know how you get throu the days.It must be hard when your DH is confused it must seem like you are the only one that knows what is happening with things. i so wished i had a magic wand i would wave it for you to make things more bearable. i only have one child i can't begin to imagine how you cope with three and with steve being so poorly.
i know (having looked at your profile) that you three very beautiful children have autism but i don't really know much about autism so i don't really know how you appoach this stuff with them, would you be able to get any extra help with the kids?
sorry if that is a silly question but i don't know much about autism

Original poster
onlyjoking9329 · 24/09/2007 10:15

thanks, we get throu the day because we have to there is no other option, it isn't easy some days, everyday is different.
i think one of the hardest cruelist things with this type of brain tumour is that is steals the persons personality and robs them of everything slowly but surely
it is hard to briefly explain austism, heck i am still learning. they have difficulties understanding the world around them, they have difficulties in understanding too much speech so thing have to be pretty much kept to the important words EG toilet first then play. iam hoping not to have to say anything until i have to, the kids SN school are aware of the situation and will help out as much as possible.

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LilyLoo · 24/09/2007 19:36

OJ glad the meeting went well and you liked her, someone else to take the share of the burden for you at least.
How did the scan go today ?

Original poster
onlyjoking9329 · 24/09/2007 20:22

scan was ok but steve very tearful afterwards, he says it is just sinking in and sitting in the cancer unit he is finding hard. today was one of those days where he knows he is going to die.
they have given him a treatment start date thursday at 4.10, they did say they would try to give us mornings because of the kids and trying to get childcare for them.
also he will probably not feel very good after treatment so would be nice if he gets some time before the kids come home from school.
fingers crossed that the other 29 appts will be a better time.

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Tamum · 24/09/2007 20:24

Oh oj, it must be so hard. Every day brings something else to cope with, doesn't it

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