please tell me about Macmillan nurses. Dad's prostate cancer is going from bad to very shit indeed....

[Meglet]

Dad (66yrs) was diagnosed with prostate and also bone cancer last summer. The original plan was to control it with hormone injections to keep his PSA levels under control which sort of worked for a few months but since the start of this year he's been going downhill, retired from work and can't really eat as he keeps being sick. And this week the GP said there were lumps in his stomach which he can feel from the outside, presumably cancer but they aren't willing to operate.

Dad only sees the consultant every 3 months (at this rate he'll be dead before the next appointment ), his GP just tells him to take more morphine to control the pain and him and my stepmum both have their heads in the sand .

They won't see the Macmillan nurse as dad thinks it's all 'mumbo-jumbo' and she had been speaking to them about actupuncture, massage etc.

What are Macmillan nurses for? Are they to liase with the NHS staff and advise on pain relief / treatment or are they just for alternative therapy to aid relaxation? Not sure whether I should encourage dad to try anything different. Me and my sister are left in the dark over this and despite seeing dad all the time we're not being told much.

Sorry you are going through this, but no direct experience that would help. I know that people think Macmillan nurses are complete stars.
It is awful when you feel in the dark about stuff - my Dad having a load of tests on Monday, and I have a feeling he will be the same if the news is bad.

noarguments Sorry your dad might be ill too. I know prostate cancer is controllable if caught early, but my dad just ignored the symptoms so he's stuffed.

I think I might call the Macmillan nurse to find out about palliative care as from the look of him we are going to be going down that road soon.

'Family' summit with my sister this evening to as she is going to try and persuade Dad & stepmum to let us contact the consultant direct, they are telling us bugger all.

Part of me doesn't know whether to burst into tears or start yelling at them down the phone (I'm so angry and worried) and get them to either be honest or proactive. He's going to suffer far more if they ignore it .

Macmillan are the lifeblood of palliative care/ home care for cancer patients.
they can help with getting financial help if needed, sort out respite for carers.

I was just 8 when I experienced Macmillan nursing(my dad had lung cancer), and now, 20 years on, I think of the amount of help my family had even back then when resources were hard to get hold of, it meant my mother had someone to talk to who wasn't family, but who knew what was happening. They helped in the aftermath of my fathers death- helped guide my mother through what needed to be done, etc

I am sorry for all the pain he and your mum are going through, but Macmillan are brilliant and I hope they would consider accepting the help.

I'm really sorry to hear about your dad.

Macmillan can provide a range of help.
From a practical point of view there knowledge of medications such as pain relief/ anti nausea is usually second to none.
They also have links with the local hospice which have palliative care consultants so can act as a liaison between pt and doctor.

Say your dad wanted to have all care at home for example, the macmillan team would be invaluable in ensuring that was made possible.

The best thing to find out more about what Macmillan and their nurses do is check out their website:

www.macmillan.org.uk/Home.aspx

The key thing when cancers get to a late stage, is the palliative care - this can make a huge difference to the patient and the family during this difficult time

My Granddad had bladder cancer which then returned a few years later and spread to his bones so I know what you are going through

Unfortunately, in some areas, you need to push to find out all the information/help that is available as the doctors/nurses don't always provide it

I hope this helps and happy to answer any more questions if I can

In short I would say he needs a Mac nurse - I mean, maybe a different one might help more, and not talk about acupuncture etc. if that woudld put him off.

The other option is to talk to your/his local hospice. He can be referred via the GP or hospital. They have outreach teams and will come out and make people comfortable at home, they are wonderful.

Those two organisations imo are the very best in dealing with palliative care.

I'm sorry you are going through this Meglet My FIL has prostate cancer and I suspect he may be only a few months behind your dad in terms of prognosis. He's been through an op, hormone treatment, chemo, nothing has worked. It's spread to his spine and his health is definitely deteriorating. There is nothing more for him apart from palliative care when the time comes

Macmillan nurses were involved with my MIL (she had a brain tumour) and they were a great support for her and my FIL. They helped alot with managing her pain and making sure she was comfortable and they supported my FIL aswell.