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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:
imaginaryfriend · 20/09/2007 10:00

OJ, your story should be reported somewhere as a series of horrible NHS mistakes. First they tell him to go home with a stress headache, then they misread the scan and now this! I'd like to say I'm surprised but having dealt with NHS myself and having a brother as a nurse it seems all too familiar.

I'm really glad to hear Steve had a good day though

I read your threads all the time and don't feel I have any valuable or helpful contributions, not having been in this situation. But just wanted you to know that even though I don't know you your story is very moving and I'm often thinking of you both.

Original poster
onlyjoking9329 · 20/09/2007 12:57

yes it does seem like they have messed up many times and you have to wonder how things would have gone had i not been able/willing to pester them into doing things, you should not have to thou. of course some people for whatever reason are not able to battle with all of this stuff and get left with shoddy services.

OP posts:
Paulatwinmum · 20/09/2007 13:21

If things dont get any better with the NHS. contact PALS - patient and liason service. on their website it says when you need advice, support or dont know where to turn. they can investigate or even get things moving.

Hope things are moving now. xxxx

wishingchair · 20/09/2007 13:27

Hey oj. Just wanted to say I do think about you ... I think you're doing so well. Hope they get teh scan etc sorted soon. DH now in the (can't remember the proper word) but the next stage of the chemo and it's a much bigger dose than when he was having the radio. It's taking it out of him. Agree ... you have to hassle, pester, and push for everything. Shouldn't have to. Best wishes from me x

Bundle · 20/09/2007 13:28

the shuffling paper gp would be funny if it wasn't so tragic..

Original poster
onlyjoking9329 · 20/09/2007 13:35

i am sure things will improve once we get the Mac nurse involved.

Hello wishing chair i have been wondering how you were. i have heard that the chemo is tough how long is DH s chemo treatment for?

OP posts:
wishingchair · 20/09/2007 13:56

Been on holiday ... during which I managed to break my leg. You couldn't write the script could you? So DH has had to undergo chemo and do everything else ... DD1 started school, DD2 started nursery, and I can't walk or drive. He can't drive either cos of the seizure. So it's not exactly been stressfree at our house!

I don't think the chemo is as bad as some other types. When having radio he would get up, have chemo, hour later have radio, come home, have something to eat (chemo has to be on empty stomach), go to bed till mid afternoon. Maybe need another nap ... often around tea/bath/bed

This next stage is for 5 days in every 28 for 6 months. He originally had 150mg a day, now he's having 400mg. It just makes him tired. Felt occasionally nauseous and sick one but think that was cos he took it right before bed at night and with no food later to help absorb it, it was just too much. So now he has it a couple of hours before evening meal. Theory is he can sleep it off during normal nighttime sleep but he still needs a nap in the day.

Not being able to rest cos of my leg has made it worse. I've noticed his memory/concentration has suffered this month.

His hair is growing back in some places but not everywhere. Watched Buzzcocks last night and he realised if what hair he's got grew long, he'd look just like Bill Bailey!

We've been together 16 years too ...

wishingchair · 20/09/2007 14:02

by the way ... the day before his chemo/radio started he had to go in to pick the chemo drugs up ... he came home with a MASSIVE box ... it was a bit unsettling. He has pills because he had a seizure, but then had to have steroids (cos the radio can aggravate and cause swelling), tummy protectors cos of the steroids, anti-nausea, and then the chemo. He had 150mg but had to take 5 pills to make up that dosage. He got so expert he could take 7 in one go!

But they all have to be taken differently - some with food, others on empty stomach. You need one of those weekly pill organisers and make sure you go through it with someone (dr/pharmacist) to make sure you've got it organised properly.

Good fun eh

Original poster
onlyjoking9329 · 20/09/2007 14:04

oh no, a broken leg is not good.
hope your girls have settled into school/nursery
steve is to have 5/28 too thou don't yet know the dose. i am hoping treatment is bearable for steve cos i know he will stop the treatment if it makes him really bad has your DH any tips for getting throu the radio/shemo?

OP posts:
Original poster
onlyjoking9329 · 20/09/2007 14:06

Steve is to have temozolomide tabs, big problem is that he doesn't like taking meds so that will be fun.

OP posts:
Blandmum · 20/09/2007 14:10

SHIT! This shouldn't be happeneing to you.

It didn't happen to us

WTF is your GP playing at??? you shouldn't have to be doing this sweethreat, it is tough enough for you as itis.

Original poster
onlyjoking9329 · 20/09/2007 14:13

well steves oncologist didn't refer us, dunno if he was waiting to do it another time. but anyway i think it is sorted now, will keep everything crossed until we have actually seen the Mac nurse

OP posts:
Original poster
onlyjoking9329 · 20/09/2007 14:15

steve should start treatment next thursday thou he has yet to be called in for scan simulation which he has to have before treatment starts

OP posts:
Blandmum · 20/09/2007 14:26

We were refered by the oncologist, and in fact there was a Macmillan nurse in the room with us when we were given the diagnosis.

Once dh changed hospitals (the dx was done in one an hour away from us due to RAF 'stuff') we were linked up with the local macmillan nurse, within about a week.

She sorted out all the paperwork for dh's dla, blue badge etc etc.

We saw her yesterday, she was chuffed to bits with the scan results, and is wondering if dh's GI pain could be diverticulitis. She has also sorted out aromatherapy, relaxation tecniques and reiki head massage (!) to help dh cope with the chemo!

wishingchair · 20/09/2007 16:24

Makes me despair the mismatch of treatmetn and care we have.

We were given 2 yr prognosis by registrar who was only 3 weeks into the job. We were then left. We went to this lovely centre next door that is funded by donations and got a shoulder to cry on. But that was essentially it.

Biggest tip he can give for getting through radio/chemo is that yes there aer lots of pills and it makes you tired, but it does work. Looking at the before/after mri scans, it looks like it has shrunk his tumour from egg size to pea size. If you are looking at prolonging life, radio and temozolomide will do that. But lots of rest and don't set any expectations of how you're going to feel.

The dosage of temozolomide is based on his height/build. It is so much per sq m.

It is hard watching them go through this isn't it.

Original poster
onlyjoking9329 · 20/09/2007 21:03

wow, the lovely Mac nurse phoned this afternoon, she is off on hols next week but is sorting out someone else to ring and i guess sort out a vist.

OP posts:
toomanywrinkles · 20/09/2007 22:21

Well done on getting it sorted.

Original poster
onlyjoking9329 · 21/09/2007 09:48

at last it feels like we are getting somewhere!

OP posts:
mummydoit · 21/09/2007 09:50

Nothing ever goes smoothly, does it? I hope you get to see one soon and that she can help you out. I'm trying to persuade Dad to have one as he's back in hospital now with an infection and Mum is spending all day, every day nursing him. Even when he gets home, she has to tube-feed him every three hours and she's wearing herself out. Dad is being stubborn, though, and still refusing to have one . Glad Steve has agreed, though. Any help at all has to be good.

Original poster
onlyjoking9329 · 21/09/2007 09:59

i reckon stubborn goes with the territory thou.
i think it is a big acceptance thing having the Mac nurses, i don't know if your dad realizes how stressful it is for your mum.
Steve things he is the only one affected by it he says that he doesn't ever want to go into hospital or a hospice cos he prefers to be at home.

OP posts:
mummydoit · 21/09/2007 12:50

I'm sure Dad has no idea how hard it is for Mum, just as Steve has no idea how tough it is on you. I don't know if you've found this with Steve but both DH and my Dad become very dependent when things are tough. When DH was having chemo, he turned into a child. I'd have to open pill packets for him and pour him a glass of water. Physically, he was perfectly capable of doing things for himself but mentally he just needed to be cared for. Dad is the same. Even before he got so ill, he liked Mum to run around for him. I think it must give them some sense of security.

Original poster
onlyjoking9329 · 21/09/2007 13:07

no steve is the opposite and thinks he can do stuff like climbing a ladder to cut back the ivy. he gets very cross when he finds that he can't do it.
He also regularly thinks he does not need his meds, AD's and pain killers. i have been trying to get him to see the importance of taken his meds as his chemo is tablet form, plus anti sickness and steroids, have told him if he doesn't agree to take them i will sort out rectal meds

OP posts:
Original poster
onlyjoking9329 · 22/09/2007 17:10

had a phone call to say the mac nurse is coming tomorrow

OP posts:
Blandmum · 22/09/2007 17:12

fantastic!

Blandmum · 22/09/2007 17:13

They took my dh, who was skeletal and dying, and turned him back into dh, who is, at present putting together a table from Ikea. And is swearing. Loudly!

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