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Advanced prostat cancer part 2

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User

Posted 09 Dec 2016 at 09:29

All those in the real know are advising you Julie and I don't have that knowledge but my gut feeling is drag him down there

We can't control the winds - but we can adjust our sails

User

Posted 09 Dec 2016 at 11:55

Always best to check if only to eliminate SCC as an outcome and that needs to be avoided. Thinking of you and Trevor.

User

Posted 09 Dec 2016 at 12:07

Expect you and Lionel are in A&E now Julie...hope everything is getting sorted out. Thinking of you.

Hugs

Eleanor

User

Posted 09 Dec 2016 at 19:11

What's happening Julie - I am getting twitchy :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Dec 2016 at 21:47

So ok Lionel was certainly not dancing on the ceileing this morning but he was tiptowing around A&E at 11am . Upshot is it's probably not spcc but almost certainly tumours pressing somewhere .
I had to leave him in A&E to get back home , I feel like I am torn in two at the moment.
So urgent MRI has been ordered and referrals to the hospice for pain management. He has slept since getting home .
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 10 Dec 2016 at 00:09

Hopefully the hospice staff will work their magic with the pain control cocktails - I trust hospice pain clinics much more than GPs or hospitals.

I know I bang on about the myth of pain control but these last few days with my stepmum were shocking. In the first couple of days she was writhing in agony but only had 2 paracetamol in 24 hours. When I complained they said she had to request pain relief otherwise they couldn't give her anything despite her being written up for morphine and tramadol by IV. A day later she was in an induced coma.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Dec 2016 at 20:57

Oh Lyn I can only imagine what a difficult time you have had, my mum had a very rare type of skin cancer 1 in 500 people world wide and then an even rarer complication . She eventually had a stroke due to the cancer in her brain we sat by her bedside for a week just waiting for the end and there where moments when I just knew she was in pain.

It is the pain part that I cannot deal with I suppose I feel helpless and as a person that likes to organise and sort anything and everything that's when I I go into melt down. None of us like to see our loved ones in pain.

We have had a pain free almost 3 years and that has probably lulled me into a false sense of sequirity don't get me wrong I have always known what the finale conclusion was ! Is going to be.
But and you guys all know I am famous for my Buts did it have to be right in front of Xmas ? There is never a good time but if there is a worst time then this is it.

At the moment I am exhausted but I have to keep everything together for Trevor and the boys and I will watch this space. Just ordered the Brussels and Turkey even though Trevor can't chew it and the boys will be stuffed with selection boxes . Xmas will be as normal .

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Dec 2016 at 14:20

The 'Myth of Pain Control' ?

I am so glad Lyn brought that up again.

For years now I've railed against against this practice of mythical pain relief administered by hospitals.

Why the hell do they think a few paracetamol tablets will bring instant relief?http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

I too trust only in hospices to give the correct medication to take away terrible pain.

I've witnessed the total neglect of patients writhing in pain in a hospital bed, and my many experiences go back to 2000 when my mother died.

Nothing has changed in 16 yrs.

You really have to get very stroppy to get anything done, and it should never be like this.

My 87 yr old mother-in -law as just been in hospital for 7 weeks after breaking her femur, and although given good pain relief for the first two days after the op, they then dished out paracetamol.

I can tell you It was very hard to be firm and demanding yet polite at the same time as I argued the case with staff.

By some miracle I never once used the word 'Bollocks!'.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-yell.gif

Wishing you all the best for your stepmum, Lyn.

And Julie, may you and Trevor have that HAPPY & NORMAL Christmas.

Big warm hugs,

George

B2PCa

User

Posted 11 Dec 2016 at 14:31

Useful to know...

Does anyone have any info about why hospitals are not good at pain relief? Is there some 'unexpected consequences' bit of policy or a counterproductive risk assessment somewhere that prevents doctors/nurses acting in the best interests of patients? Is this a general problem or specific to certain hospitals/departments? If we could find the source of the problem maybe we could find a way to solve it.

User

Posted 11 Dec 2016 at 15:31

So sorry to read your post Julie, I too have left my OH half in hospital this weekend (see my thread). I have read your many posts and you are a real fighter be strong but be kind to yourself xx

Molly

User

Posted 11 Dec 2016 at 16:02

Before Tony got referred to the hospice team, he contacted his GP about painkillers. She was happy to prescribe a regime that included codeine-based drugs and (later) morphine, and told him to take them regularly, four times a day. When the hospice nurse came on the scene, the morphine dose was gradually increased, and Tony had skilled advice from her about how to tweak and adjust the dose as needed.

User

Posted 12 Dec 2016 at 19:47

Hi Julie
I hope things are getting a little better. If you are stuck anytime you know I am not fat away
Great with dogs and kids and rubbish at shopping
Call anytime and I will be there
All my best
Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 12 Dec 2016 at 20:03

George you are just a little Geordie Diamond 💍.
Si thank you so much love you loads and may well be calling soon
Marje what can I say but thank you from an incredibly brave lady.

So things are not so good and seem to be getting progressively and swiftly worse, he has no appetite and is sleeping pretty much most of the time. The Raduim at Addenbrooks is starting tomorrow and he is adamant that he will not accept hospital transport ! He is such a bugger. He is planning to drive himself it is a 2 hour round trip. He can barely walk to get in the car. It is a sharp reminder of where we were 3 plus years ago. I do think this is a result of stopping the Zometa.

I must admit to feeling pretty low and James burst in tears tonight .
From a very lonely and sad lady over and out .
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 12 Dec 2016 at 20:08

Oh Julie I'm so sorry to see this :-(
Is James your 17 year old?
I haven't got anything useful to say but I hope you can get some rest as you must be completely exhausted. Sending love x

User

Posted 12 Dec 2016 at 20:18

Julie, such a difficult time. Stopping drugs is often as hard as starting them as I experienced last year. Hopefully the body adjusts but it can take time. I hope we hear better news soon and try and take a moment for yourself you need that too and I know easier said than done.

User

Posted 12 Dec 2016 at 20:23

Julie, believe me, what you are going through now requires more bravery than where I am now. You are worried sick about Trevor all the time, trying to stay strong for him, trying to look after yourself and keep everything as normal as it can be for your boys, but aware all the time of how much you have lost already. You know it isn't going to end happily, and you may, even in your more optimistic moments, be experiencing "anticipatory grief". I didn't come across this phrase until after Tony died, and it made a lot of sense to me.
PM me if you want to chat about this.

How is the pain control? Have you got the hospice team on the case yet?

Marje

User

Posted 12 Dec 2016 at 20:24

Julie

XXX

Barry (Bazza)

User

Posted 12 Dec 2016 at 20:42

Sending love and positive vibes to you both , Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 12 Dec 2016 at 21:10

Sending strength to you all and wishes that things improve
Chris

User

Posted 12 Dec 2016 at 21:11

Julie I'm not sure what to say. You are always so upbeat and strong so to hear you feeling like this is very worrying.
You do need some time for you, to recharge and for your boys as well as Trevor.

Please don't feel lonely we are all here

((((((Hugs)))))))

Bri xx

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