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Advanced prostat cancer part 2

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User

Posted 19 Jul 2017 at 11:41

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

User

Posted 19 Jul 2017 at 12:14

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.

User

Posted 19 Jul 2017 at 18:17

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.

User

Posted 20 Jul 2017 at 01:04

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

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 20 Jul 2017 at 17:54

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

User

Posted 26 Jul 2017 at 08:20

Fantastic news - I kept thinking about you while we were away and would never have dared hope to see an update like this when I got back. Lots of love and magic to you all xxx

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

User

Posted 27 Jul 2017 at 00:04

Brilliant Julie. xxxxhugsxxxx

User

Posted 30 Jul 2017 at 00:21

Just dropped into this thread for the first time tonight and read it from beginning to end. Julie and Trevor your journey has been both gripping and inspiring. Keep on keeping on! (I think it's the words of a song, but I don't know by who!)

User

Posted 30 Jul 2017 at 15:54

Great news and glad 'they' have now established Trevor's symptoms but meantime worry as well as delay in getting proper response. Seems even doctors are too quick to assume PCa is attributable for everything.

Barry

User

Posted 03 Aug 2017 at 01:10

So what are we upto all I can say is he is getting there . His energy levels are getting better he is driving and we have even made a trip to B&Q 🤗 Although he did have to sit on the display chair for a rest .

Driving how crazy is that when the ward Dr said he only had weeks to live .

He is still low in energy but I am amazed / gobsmacked in just how much fight and strength he has to cope with everything that he has had to deal with .

We are having two weekly oncology visits since starting back on Abbiraterone and all bloods are good other than PSA of course .

So we had the massive drop but as I would have predicted we have know had a rise.

So PSA up by 300 in two weeks

Just to put our journey into perspective a 300! Psa rise in two weeks would seem horrendous for most but for us we are still 10,000 under our starting point .

Also life doesn't define us by what our PSA is doing , life defines us in how Trevor is feeling from day to day.

TODAY IS A GOOOD DAY x

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Aug 2017 at 08:06

Bloody marvelous.

User

Posted 03 Aug 2017 at 08:43

And how long before you're going to expect him to mow the grass? Or is that on hold for the time being? Anyway so pleased to hear you have him back again and able to do things together. Sounded so unlikely a few weeks ago.

User

Posted 03 Aug 2017 at 09:11

Mow the grass???? Julie has a strap-on and Trevor isn't allowed near it :-)

Great news Julie xxx

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

User

Posted 03 Aug 2017 at 10:12

Marvellous news, just shows you can't keep a good man down.

Keep it up

Roy

User

Posted 03 Aug 2017 at 11:25

Hi Julie and Trevor,

We're in awe of 'Super Trev'.

As you say, how crazy it is that the ward doctor gave him a few weeks to live.
He seriously underestimated who he was dealing with.

Your two are a force of nature, absolutely unstoppable, and your posts light up the days of those here who have been worried sick after being given similar prognoses by doctors.

These medics don't seem to realise that patients are not just statistics.

We're each unique, and if you add in defiance and stubbornness, then statistics are out the window!

Long may Trevor continue to defy them all.

Warmest wishes,

George & Lynn

B2PCa

User

Posted 03 Aug 2017 at 14:17

Great news, brought a smile to my face. Trevor gives hope to us all.

Ulsterman

User

Posted 03 Aug 2017 at 22:53

Julie,

I'd be delighted if John drove or cut the grass! I don't know how your fella does it, but he is truly an amazing man with an amazing family.

Love you lots

Devonmaid xxx

User

Posted 04 Aug 2017 at 21:02

Hello Julie, hello Trevor,

it's been a while since I visited here and I apologise.

How you and Trevor have been treated by the hospital is horrendous. If Trevor had received proper care, who knows how he may be feeling today? And the massive drop in his PSA numbers - wow!

He is back driving? Wow, he is superman indeed! Trevor certainly has a wonderful zest for life. Long may it continue.

Frank.

User

Posted 07 Aug 2017 at 03:20

Hi Julie & Trevor. I've been away with my OH & tried to pretend there's no PCa in our lives so not been on here for a few weeks. I can't believe that I'm not typing a very different comment - Trevor is surely made of something that should be bottled & prescribed on all hospital wards; that'd free up some bed spaces! Julie, likewise, you are my PCa OH Hero 😌 This thread is nothing short of an inspirational lesson in fortitude & love. Praying that life is calmer for you & the kids at the moment.
Mel x

User

Posted 05 Sep 2017 at 23:00

Ok guys so PSA climbing rapidly 3.200 since July so pretty much doubled in 8 weeks I will let all of the mathematicians work out the doubling time , but still under the 4000pre Sepsis here comes the important bit AlP is steady and all other bloods are good.

A bit of a cough but all in all feeling good , looking good and energy levels are on the UP

Life is back to fairly normal ! Well normal for us he is not yet back on the ride on but hey there is time before summer is completely over.

Life on the Trevor roller coaster continues and he is booking tickets for those that would like to ride in 2018 .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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