Advanced prostat cancer part 2

User

Posted 13 Sep 2016 at 12:10

Dear Julie,

There you go again, having me splutter a mouthful of tea all over the place. Constipation is your friend?!

I bet we can't find that quote in any book.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Too funny!

Your Trevor is an amazing guy. Everything he's doing daily is incredible He refuses to have his routine spoiled despite the massive battle he's busy waging.

To sum up, you two are an incredible couple, and your posts are eagerly awaited by us all.

They bring inspiration to so many AND always a smile, whatever the news.

You're heroes to us, and long may you continue.

Warmest wishes,

George

B2PCa

User

Posted 13 Sep 2016 at 20:52

Hi Julie

Today It's my big birthday ! I think I've had a hard paper round because I'm sure I'm only forty, if not where the hell have the years gone? Anyway, thanks for the laugh as it reminded me to be grateful that I'm lucky enough to be around to get older And not to moan about the aches and pains which I think I've earned over the years, they are only aches and pains and I'm lucky I can take some painkillers and be ok.

Constipation is my friend haha, from the number of enemas John had after his RT recently I don't think he'd agree but I see your point, that's a lot of sh1t created at yours.

Seriously though, we all have our moments and even you are entitled to be free to express your fears with us. I know you can't talk about things much at home so please share those fears with those that understand. No amount of happy talk can hide the situation you are in, but it can make the journey a little less painful from time to time, at least for us who read your lovely missives. Maybe you should do a blog. I've started following one on Facebook called Peter and Jane and it's a bit sweary but about daily family life in the 21st century, it makes me laugh out loud and that's a good thing.

Your little pups are adorable but I've no doubt they are hard work, it sounds like Trevor is doing his best to help and long may that continue as I'm sure that sense of being normal helps him a lot.

Hugs to you all

Devonmaid xxxx

User

Posted 19 Sep 2016 at 20:26

Hello Julie,

you and Trevor are still in my thoughts and prayers.

Despite his difficult problems, it seems Trevor is more active than I am. My wife still cuts the grass ( a small patch ) and puts the bins out. I think that she believes I'm unable to do it! I go shopping, but if the list is large, she will come with me.

Like the others here, it amazes me how brave you are - still able to cheer us up. We should be cheering you up. But I can't think of anything right now.

Lots of love to you both. xxx

Frank.

User

Posted 04 Oct 2016 at 20:56

My how time flies when you are having fun , I have been so busy with puppies first two litters have all gone to there new homes we have had some lovely new owners and when they climb into there cars with there new additions to the family wrapped in there blankets it makes me so happy to no that I have given people so much happiness , all of the hard work and poop , poop , poop and yet more poop is so worth it when I see there smiling happy faces . They always ask if I am sad when the puppies leave 🤗🤗🤗🤗🤗🤗🤗🤗🤗 honesty is my middle name so I always say Of Course I am I will miss them terribly 😂 . They have no idea how much hard work it is .

Trevor and the boys have had a weekend away , Ts eldest daughter organised a rented stay in a 9 bed Manor House with all of Trevor's children and there offspring it's not easy to get everyone together in one house. I had to stay and look after the gang but I did get a Sunday roast delivered .

So where are we on the PCa front , scans were done 2 weeks ago and Wiz visit was yesterday have to say I was fully expecting worsening of Mets and a move to Raduim 223 imminent . Trevor's movement has defiantly declined in the last month and even though he has protested that his back pain is just Well Back Pain i didn't believe him .

So it turns out he was right and my new name is Negative Norma , scans revealed improvement in mets i kid you not ( totally gobsmacked) HB back up to 9.7 . PSA up,so not all plain sailing but hey , not sure how , not sure why after a year on Abbi and continuous rises in PSA to get this result is Shamazing .

So just for the record

PSA up to 2340

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 21:02

2,340 not sure what happened but think my iPad had a coronary. The Wiz is contacting Addenbrooks because she is confused but more good news new NICE ruling is he can start Raduim 223 and stay on Abbi at the same time , so watch this space guys.

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 21:41

Shamazing indeed - what a miracle man he is. They should do a one man research project on whether this is down to turmeric or poop.

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

User

Posted 04 Oct 2016 at 21:57

Keep fighting brother. Well done for getting the R223/Abby blend. Let's hope it's a fine vintage.

Bazza

User

Posted 04 Oct 2016 at 22:23

Way to go, Trevor. It will be very interesting to see how 223 and Abby work together, maybe give some symptomatic relief as well which could improve mobility? Some good news there I think Julie let's hope there is more to come.

User

Posted 04 Oct 2016 at 22:54

Thank you for replies guys,

I am still shocked and stunned after the previous bone scan that showed significant progression this latest one has gone in reverse so in reality we are back to where we were 12 months ago .

Lyn I have tried donating him to science but they said that was illegal 😆 I did offer a BGOFF and thought I could chuck Si in as well but they said No Way they couldn't handle both of them 😱

So who knows

Turmeric

Aspirin

Good old fashioned I am not going yet

Puppy poop

That old black Magic

What ever it is I need to bottle it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2016 at 23:59

Fantastic news! You two are an enigma. Long may it continue..

User

Posted 05 Oct 2016 at 06:56

Bottle it indeed Julie.

What a man!!

Time to not only evaluate what you have been given in terms of treatment but to stop and look at yourself.

I know Trevor and the boys help where ever they can but it's you who are the rock they are all supported by. Can't have that crumbling due to lack of maintenance can we.

Grab a bit of me time before the next lot of poopy puppies if you can, even if it's only a spa day with a mate.

We've built our foundations around the base of Trevor's rock but we can only do so much to help so give US a hand by reassuring us that you will take a little bit of care of yourself too

*****

Edited by member 05 Oct 2016 at 06:57 | Reason: Not specified

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

User

Posted 05 Oct 2016 at 08:57

Hi,

This is really good news, whatever is making things work, long may it continue.

Take care to get plenty of rest yourself.

Steve

User

Posted 05 Oct 2016 at 14:14

YAY, YAY and thrice YAY

Reading this today has made me smile. So many dips in that rollercoaster but a nice slow gentle climb (with the brakes applied) is such a welcome relief for you all.

It will be very interesting to see what happens if T goes onto the combi treatment. Quite a few people with advanced PCa have reported that Abi seems to make things better in terms of wellbeing, mets etc. yet PSA stays level or rises. I believe it was the lovely Jamie that said Abi is only deemed as failing when 2 or more factors get worse. Adding R223 which of course works in a totally different way, may be just the solution to get T improving even more. I truly hope so.

Now, how come you didn't call me to tell me you were going to be left home alone ...I would have come over and made sure you rested, I would have done all your cooking and even stood in for you on poop patrol. I would have brought Prosecco and my slippers and slept in the Conservatory with my friend Grace.

Tut tut. If that is on the cards again you call me is that a deal SS ?!!!

Turmeric T rides again !

all my love

xxx

User

Posted 05 Oct 2016 at 18:40

SS, Slippers and Prosecco now that is my idea of Heaven.😍

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Oct 2016 at 19:32

Well done to the pair of you, hope things keep going in the right direction.

Thanks Chris

User

Posted 05 Oct 2016 at 22:10

Wow, wow, wow.

What can I say, what a result, what a man! Julie, he is truly an enigma. Personally I think it's the aspirin. John takes a low dose with the stillbestrol and I think it has magical qualities.

Lots of love

Devonmaid xxx

User

Posted 05 Oct 2016 at 23:15

you are at a page end, I do wish we could sort this annoying thing out.

I will post this and hope it flips to P15 but in my past experience on your page it might take two attempts.

xxx

User

Posted 06 Oct 2016 at 08:08

IT didn't flip Mo so perhaps mine will. and yes it is very annoying

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

User

Posted 06 Oct 2016 at 08:14

Hi Julie

I am only posting to move your bloody page over http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-tongue-out.gif

Such great news so glad your onco is sticking with Abbi, brave lady

Hope to catch up with you before Christmas

Si xx

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

User

Posted 06 Oct 2016 at 11:48

This page not found thing is REALLY ANNOYING ... I think I know why it happens, programming wise it should be an easy fix. I have sent another message to Sadie but doubt it will get resolved. Along with others I see no investment from PCUK to fix any of the frequently reported issues at all.

so Julie my SS forgive me while I play a childhood game

This little piggy said "identify deleted posts and clear the empty text lines"

This little piggy said "move the end of last post tabs"

This little piggy said "move the start of next post tabs"

This little piigy said "realign the end of page tabs"

And this little piggy said "renumber the pages that remain and Bob's your ydoolb Uncle!"

OK so that is my slippers and prosecco guide to bug fixing

Dah Dah

xxx

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