pain relief

Hello Petersoh

I understand your concerns! I am no medical specialist but it seems to me that your husband is on a mega high lot of painkillers and is, perhaps, taking too much if he is 'away with the fairies'? You say your palliative care nurse is visitng 'soon'. Is that today?  If not, I think. my best advice would be to seek proper professional medical advice before the weekend from:  your local pharmacist, your GP or NHS111 or prostate cancer specialist nurse?  

HTH

Thank you.

It is today, we'll see what she says.

Hello Petersoh 

A warm welcome to the Macmillan Online Prostate Cancer group - although I am so sorry to find you here. I would echo the first post on the thread from Worriedwife and confirm that none of us are medically trained and you need to refer Peter back to his GP or Medical Team - if the symptoms are not any better it's best to call 111 for help and advice out of hours.

Her's our guide to accessing help and support during the Festive season:-

 Accessing support during the festive season 

There is our Support Line on 0808 808 00 00 (8am to 8pm 7 days - but check Festive Hours) they should be able to provide some additional help and support.

Not being medically trained I have no idea what his problem is, however here is a link which may prove helpful:-

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/metastatic-spinal-cord-compression

Do let us know how you get on and if I can do anything else for you please let me know.

Best wishes - Brian.

I'm returning to this to tell you what happened.

I had already asked the pharmacist before I posted this and he wasn't particularly concerned, neither was the palliative care nurse later that day.  Neither was her supervisor, our GP, or the palliative care consultant who came out later, although the consultant did switch him from morphine to oxycodone in case that helped.  It made no difference to his mental state, which had deteriorated gradually since I first noticed, but didn't help his pain quite as much, unfortunately.  By this time it's 10 January and I'm begging them to admit him to hospital because it's so obvious to me that there's something terribly wrong.

They got him to the top of the list for a hospice bed but of course there wasn't one available.

Over that weekend he had a couple of falls but he could always get himself up again.  Monday 13th the GP came out, unasked, but still wouldn't agree to hospital, still assuming his problem is medication side-effects, and of course Peter was much more lucid with the medics than when he was relaxed, with me.

I'd been sleeping in the spare room but moved back in with him because of the falls, found out that he was hardly sleeping at all now, although he'd been sleeping very heavily when they first started him on the overnight morphine.

Tuesday I decided he was going to hospital one way or another, of course I couldn't take him myself because he couldn't sit in the car.  He went to lie down and then fell when he got up, so I told him to stay on the floor, made him as comfortable as I could and called the ambulance.

They still wouldn't take him.   'He's alright now, talking to us' 'He says he doesn't want to go' 'You don't have Power of Attorney'.  I wouldn't let them go, so 1.5 hours later after they've talked to the GP and the palliative care team, they find him a bed in the smaller hospital in our area.

That was Tuesday.

Wednesday I visited him in the hospital, he was mobile and talking to me but not making much sense.

Thursday morning the ward Doctor phoned to see if I was coming in, he wanted to talk to me about tests they'd done.  When I get there the Doctor's on his lunch and Peter's unconscious, they said he'd been alert earlier, when they'd taken him for a scan, but at some point after that he'd lost consciousness.  

Eventually the Doctor tells me the scan showed a subdural haematoma, a bleed on the brain, which he thought would be from an earlier fall, which fitted in with my experience.  I couldn't date the fall because Peter could always get himself up again so wouldn't always tell me.  It was the Doctor in the Admissions Unit who'd realised there was something wrong and ordered the scan.  They wouldn't operate because of his frailty due to the cancer.

Peter never regained consciousness and died on Sunday 19th.

Keep fighting for your loved ones,  The doctors may be very clever but they don't know them like you do.

Very best wishes to everyone here.

Hello Petersoh 

Thank you so much for returning and taking the time to let us know how Peter got on - I am so sorry to read the final outcome - you have my sincere condolences. Words are not enough - I know!

Petersoh said:

Keep fighting for your loved ones,  The doctors may be very clever but they don't know them like you do.

You are so right in what you say - at the start of my personal journey - like most men - I kept saying there was nothing wrong with me - it took my wife to get me to the GP surgery and the next day I was in hospital on the Acute Medical Unit.

I know we can't bring Peter back but you now need to look after yourself - you have been through something no wife or partner should have to go through. 

If you want to talk to others who have been through what you have just been through we have this group which you may wish to join for support  - here's the link:

Bereaved spouses and partners forum 

Our Support Line will also be able to offer you some further help and support on 0808 808 00 00 (8am to 8pm 7 days a week).

If I can do anything for you please do contact me - either on this thread or by personal message - my message box is open - I do have some further links to outside support if you need them. 

We as a group are always here for you for support - please do just come online for a chat - you know where we are - no one should go through this without help and support.

Kind Regards - Brian.

Hello Petersoh

i am so sorry to read of your loss but very grateful to you for using your own difficult experiences to alert us all about the need to push for adequate care. 

The longer and further we travel on this journey, the more I realise that the NHS just does not pay sufficient attention to family members’ opinions, experiences or needs! I am now expressing this freely in our regular medical ‘encounter terms’! Sooner or later, maybe, someone will take notice!

I hope you will soon be able to put the worst experiences behind you and be able to remember, instead, the love and happiness you shared with Peter x