What can I expect from a Macmillian Nurse?

[Katymac]

My Dad is quite poorly again (lung cancer and now a second brain growth

The Macmillian nurses have been conspicuous by their absence ; we have a named nurse we haven't met and have spoken to 2 or 3 times in 20 months

When we ring for help we get no calls back or response at all

Is it a funding thing? Should we be looking for help from other sources?

[rogueantimatter]

Oh no.

I'd recommend calling one of the British cancer support charities to ask how you can get help. Or a national Macmillan number.

When my mum had metastatic cancer the macmillan nurse was in touch very regularly and visited her approximately every other day. She helped her with claiming for benefits and organised for her to get specialist equipment in her home. She advised about the macmillan hospice too.

When I had cancer a macmillan nurse phoned to clarify the result of the first scan, then a few weeks later to see how I was doing and stressed that she was the person I should call if I had any questions. I saw her in hospital a couple of times.

That was eight and four years ago in Scotland so I don't know what it's like anywhere else in UK but it seems strange that you haven't even had any contact.

Very sorry to hear your dad is so poorly.

[Katymac]

I rang again this morning & she's out & may ring me back this afternoon

[Katymac]

Sorry

Thanks rogue

[rogueantimatter]

I think she will.

Best wishes to you and your dad.

[Blue2014]

The McMillan nurse we had came very rarely but coordinated things in the back ground. We did have to chase her quite a lot in the early stages though

[Katymac]

My mu has (foolishly IMO) cancelled the oncology appt on Friday as she can't get him there
Apparently in our area co-ordinating that is the responsibility of the Macmillian nurse

[louisaglasson]

She needs to phone the Oncology unit (or maybe you could?) as I'm sure they'd be able to arrange transport for him if she can't get him there. He can't not go to it.

[derxa]

She was hopeless in my dad's case, sorry.

[Katymac]

The hospital can only do cars - they can't do getting him out of bed & downstairs sadly

[louisaglasson]

I'm not sure if that's right. Have you rung the Patient Transport Service yourself to ask them what alternatives there are? Or the GP surgery? He won't be the first patient in this position and there is transport that is not by car as some people will need ambulance transport.

[Blue2014]

If (and sorry to be so direct asking this) his diagnosis is terminal ask for an end of life social worker - ours was brilliant in arranging carers to help my mum out

[Katymac]

Thanks Blue - I think that's why he needs to go to the appointment on Friday

We are only assuming that the tumour/growth has come back by his recurrence of the symptoms - I suppose it could be a series of strokes

[Katymac]

The GP has confirmed this is it & asked if he wants to go to hospital or not

No point to have the appt on Friday

[Blue2014]

I'm sorry things are so hard Katy I know how hard all this can be

[louisaglasson]

Oh ok. Hope they manage to get some support.

[ApplesinmyPocket]

So sorry, Katy. I hope some help is soon put in place; poor Dad, Mum, and you.

[Katymac]

Funnily enough the MacMillian Nurse rang 20 minutes after the Doctor left the house

She is coming tomorrow to sort out a hospital bed & carers

[ImperialBlether]

My dad has lung cancer and has a MacMillan nurse. It was arranged through the specialist nurse at the hospital - he was absolutely great at organising everything. The MacMillan nurse comes out every three weeks now - when he really wasn't well she came out weekly, but would come out more frequently, too, if he needed it. She's arranged a Marie Curie nurse to come out for a few nights when he wasn't well and we were worried about him falling in the night if he went to the bathroom. She also will push along the district nurse and the doctor if necessary. I'm appalled your dad has had such poor treatment and think you should be making a complaint.

[Whatevva]

The Macmillian nurse for FIL was nowhere to be seen and the district nurses filled the gap admirably. They had a fund that we gave some of the money from the funeral to.

When MIL was ill, there was a Macmillan nurse this time - he came 3 times, adjusted the morphine dose (this needed doing by every doctor etc that saw her anyway) then went off sick and we never saw him or anyone else again. The district nurses were good though, came in every night to put her to bed and change her patch, and got equipment in. MIL sorted most things out herself, with help from DH.

[Katymac]

I imagine we will be too busy with hosital beds & carers to worry too much about what came before

[Katymac]

She should be there before 9

[gruffaloshmuffalo]

Katy I'm sorry you're going through all this. I don't have experience of Macmillon, but wanted to let you know I cared

[Chopchopbusybusy]

I wasn't impressed by the Macmillan nurses when my Mum had cancer. I lived 450 miles from my Mum and although I spent as much time with her as possible after her diagnosis I couldn't be there all the time. I think the Macmillan nurse visited twice and I'm not sure she arranged anything. Fortunately, my mum was the sort of person who asked for help from other places. GP, district nurse and was sent ambulance transport for hospital appointments as she was in a wheelchair.
Sorry you're going through this

[Katymac]

OK apparently the NHS are going to move all the furniture so we can fit a bad in the dining alcove.....so I guess DH & I will go up this weekend and move it all

Thanks guys - but don't sympathise too much or I'll have a break down

My mum is seeing if we can find some curtains to match her lounge ones to put across the conservatory door to give him warmth & privacy

[louisaglasson]

I misunderstood your post yesterday, I'm sorry. I thought you meant the GP had said this is it, car or nothing.

I have cancer. I have found Macmillan helpful on the phone, but support at home I have had from the local hospice so it might be that Macmillan isn't the only option. Whatever is available in your area I hope they get everything they need.

Not an easy time for any of you and I wish you strength .