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Advanced prostat cancer part 2

User
Posted 16 July 2017 15:47:36(UTC)

Just back from ten days away with no wifi and I thought about you all a lot.

I was very apprehensive to open the page because I know how seriously ill Trevor was before I went.

What can I say. Wonderful homecoming news. Thanks for the update.

What a man

We can't control the winds - but we can adjust our sails
User
Posted 17 July 2017 20:42:49(UTC)
What fantastic news Julie, could not be happier to see this update. Amazing.

I expect you are shattered, please try to take care of yourself, I know it must be so hard to do with everything you've got going on but you are the family powerhouse and they need you.

Lots of love
Devonmaid xxx
User
Posted 18 July 2017 07:50:51(UTC)

really good,just hope i will be as brave as trevor.

User
Posted 18 July 2017 10:19:28(UTC)

Thrilled to bits for everyone in your world (dogs too!)

 

Kev

Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 18 July 2017 21:50:22(UTC)
So what a crazy roller coaster ride we have had in our pca journey .! We have just about ridden every loop the loop possible .
Firstly the good news Trevor is recovering well and gaining strength daily he is still weak and his energy levels are soon exhausted he is very much battered / bruised and very wobbly around the edges but he is getting there and that spirit of his is fighting back. 🤗

THE FAT LADY HASNT EVEN GOT ON STAGE YET

Wiz visit yesterday and I will get to the scores on the doors but first the embarrassment on her face was obvious she admitted that the Drs on the general ward had totally misread Trevor's condition . She also admitted that heads had started to roll . So basically he went in for breakthrough pain and when the pain wasn't under control they upped the morphine level to such a high level that he was unable to communicate.

The pain wasn't actually coming from the cancer it was from the lung infection but we were told it was from mets in his sternum.
His blood results showed an infection but it was ignored , his swollen stomach was wrongly diagnosed as cancer in his liver , his confusion was wrongly diagnosed as cancer in his brain.
His kidney problems were wrongly diagnosed as cancer in his kidneys and when the DR on the general ward told me that Trevor only had weeks to go that was also wrong all of this was diagnosed with no hard facts , no scans just assumptions .
Basically they had written him of without hard evidence . But they hadn't asked me what I thought and they certainly hadn't asked Trevor.

If assumptions were the only thing to go on then Trevor would have died 10 years ago when he arrested with a heart attack in the Royal London ! But he didn't and I am famous for my Buts .
It is so scary that if I hadn't have been there fighting his corner then this post would have a very different outcome.
So the confusion wasn't spread to his brain but from overdose of morphine and the Sepsis
His swollen stomach was gas and food because he was unable to eat and couldn't pass stools
Kidney damage was because he wasn't able to drink himself and was severely dehydrated

His scans have confirmed .
No spread to soft tissue
No new mets to skeleton


I have had my moan and I will be making a formal complaint BUT not yet I need my energy for Trevor , I don't know how he has come through that I don't know how all of us have come through BUT we have . We have all survived to tell the tale

WHAT IS HE MADE OF its crazy , I don't have the answers all I know is he has such a zest for life and QUIT isn't in his vocabulary.


So this is were it gets even weirder Abbi was stopped at the beginning of June when he was admitted to hospital
The Wiz explained that she expected a pretty big rise is PSA over the last month without Abbi and not to be alarmed.

So SCORES ON THE DOORS
PSA JUNE - just before admition to hospital - 4723
PSA after no Abbi for a month - 1787

😱😱😱😱😱😱
W T F happened there I need to say that again WTF happened there .

1787 How Can That Be .
I did get them to check and recheck

Toatly gobsmacked , lost for words just totally gobsmacked . I know Lyn sometimes with ext spread the PSA lowers but scans aren't showing that. 🙃

BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 19 July 2017 00:26:12(UTC)

Wow!

User
Posted 19 July 2017 06:14:22(UTC)

Great news
Best wishes to all
Debby

User
Posted 19 July 2017 06:32:14(UTC)
Amazing!
User
Posted 19 July 2017 06:33:34(UTC)

Well done and keep up the fight. Best wishes.

User
Posted 19 July 2017 07:30:13(UTC)

So pleased that Trevor is recovering. As hiitsme says, keep fighting (I know you will anyway - you don't need encouragement from us I'm sure)

You also know that it is sooooooo important that you now relax when you can and look after yourself. You've been like a piece of elastic , the past few weeks especially

You know what happens to elastic that is left in stretch mode. It never again regains it's strength but becomes saggy !!

Can't have you becoming saggy now can we? Trevor needs you, we need you, to be fighting fit.

Just reading your ongoing saga is tiring so God knows what it must be like for you. If there is help available, grab it with both hands and don't be proud.

Look after yourself so you can look after everyone else, like you always do

Thinking about you and hoping for a breather for you

We can't control the winds - but we can adjust our sails
User
Posted 19 July 2017 10:41:36(UTC)
Julie
Wonderful news but very alarming from the point of view of the general ward, that scares me rigid! I almost can't believe that they just wrote him off like that (almost but I can I'm afraid). I lost my trust in the NHS some time ago I'm really sorry to say, something is rotten there and needs to be sorted. Of course I'm not saying that there isn't fine and fantastic work there, there is and I've been witness to that too but when you think of people with no one to fight their corner, it's just frightening.

Anyway, you've got through that and Trevor suffered more due to his poor management and that's not right. Between you though, you are the epitome of fighting spirit and that far lady isn't getting on stage today nor in the near future.

I can only think you must be so exhausted by all of this, I really don't know how you cope, but you do. You are remarkable.

So happy that your man is improving, he's a superstar with a superstar caring for him.

Lots of love
Devonmaid xxxx
Thanked 1 time
User
Posted 19 July 2017 11:14:06(UTC)

Originally Posted by: Online Community Member
I almost can't believe that they just wrote him off like that

This is what makes me really mad. I am in favour of voluntary euthanasia. I want the right to say "that's it, I've had enough, time to switch me off please". I know what response I'll get if/when I say it. Trevor, he's got more desire to live than probably any 10 of the rest for us. And he gets written off!!!

FFS.

Thanked 1 time
User
Posted 19 July 2017 17:17:25(UTC)

That PSA drop is incredible. In pattern terms it's a halving which is pretty good. This may be a positive reaction to stopping a drug. I had the same when I stopped casodex, surprising but it happens. Whatever, despite the worst efforts of the general ward Trevor is on his way back. Brilliant news.

And for you julie I hope you can get some time for yourself you know you need to have some time just for you. Thinking of you all.

Thanked 1 time
User
Posted 20 July 2017 00:04:31(UTC)
I have just got back from presenting to the national conference football, and as ever your tales have encouraged me to never stop believing Well done u n Trevor, rooting for u every day, Kev
Life is like a box of chocolates, you never know which one you are gonna get.
I just felt like running
(Forrest Gump)
User
Posted 20 July 2017 16:54:42(UTC)

I have to take a deep breath before reading your updates Julie ! but that PSA reduction is amazing - no one would have expected that. Glad things are a bit easier x

 
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