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Advanced prostat cancer part 2

User
Posted 08 Nov 2014 at 21:56

Si is that a medical dictionary in your pocket or are you just pleased to see me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 08 Nov 2014 at 22:32

Really helpful posting, Si. I wonder whether casodex should now be by passed if it has contradictory outcomes? Or does it do a job for a good while and gives time which we know is important. I will be on to this soon so just thinking aloud!

User
Posted 08 Nov 2014 at 23:50

I don't know about the Apples and Crisps, straws comes to my mind, clutching at! Lyn, you certainly can give some illuminatory responses, Simon, where did you find that post?

Julie, not the required numbers?, ask for a redial!, Seriously, it is good for Trevor to be thinking about food, but as Lyn also says, "she is worried about you" well, so are we, your sense of humour is only a mask which you use to good effect, SO TAKE CARE of yourself, sweet girl.

God bless,
Chris.

User
Posted 09 Nov 2014 at 09:47

Thinking of you both, not the results you wanted but lovely that everyone on the forum rallies round with love, advice and support, often what gets us through ! Now off for a dog walk having been gardening at 8.am ! Takes my mind off things though at this rate I'll be needing some of that sandwich soon to put on weight,

 

Lots of love, Fiona. x

User
Posted 09 Nov 2014 at 23:21

To all Thank you for being there.

Si joking aside that was Very interesting I will confess I have to read it a few more times for it to sink in . Rob really interesting to read your thoughts on Enza versus Abi I must confess I have had similar thoughts myself.

BFN

Julie X 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Nov 2014 at 09:45
Thanks SI

Useful information for us today as we discuss these matters with the oncologist. I have always had the feeling that Enzalutimide is not right for John because Casodex didn't work and I had always understood these were related drugs.

My brain hurts.....

Love Allison

User
Posted 29 Nov 2014 at 22:53

Got to thinking about this Cancer and the journey that we are all on. This is just a little poem about the road we are all travelling. Hope you enjoy it.

The station is so busy far to hectic for me, I can't remember what train they said , I'm not sure where we should be. I look at him for reassurance but he looks more confused than me, sit down and take the weight of I'll fetch us a cup of tea.

I spy the ticket office but there's crowds of people there should I push my way through or just politely que.

The family in front of me have buckets and spades day trippers I thought, they brought a return ticket to RP they say it's nice there this time of year. I think they used there rail card and this reminded me I had accidently dropped mine when I went to get the tea.

Finally it's me, 2 tickets to Cancer central please, "sorry love this window is return tickets only you need window 3. I looked around for window 3, this station this station is so busy it's beginning to worry me.

I saw a guard he might help. " Excuse me do you know where I can find window 3 , you don't want window 3 love that's the non stopper it terminates at the end of the line. OH I thought bu@@er me, so where should we be. Try window 2 he said that's the scenic route it stops at all the stations.

Come on I said to him lets try window 2 there's a buffet car included and you get a free cup of tea.

Are you sure this is our train he say's , are you sure you heard him right. The speaker booms out the train leaving at platform 2 is for Cancer Central and is calling at all stations so of we set into the night. Yes I thought I heard him alright.

The lady with the buffet car came rattling down the aisle anyone with a HT season ticket gets a free curry, that made him smile.

We dozed awhile grateful for a nap, The train started slowing as we approached Chemo many fellow travellers stood up we gave each other a knowing nod as the speaker said Mind the Gap.

The train is speeding along know, clickety clack , clickety clack , should we stop at Abiraterone or go further up the track.

We chatted to the man opposite he was going to Enzalutamide, he said it's brilliant there's a water park with a slip and go slide.

This journey has been exhausting and I think we both agree, if we have to come this away again it'll be the Bus for him and me.

BFN

Julie X

 

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Nov 2014 at 00:12

Brilliant, Julie.

User
Posted 30 Nov 2014 at 07:46
Thank you, Julie.

I found it so moving it made me cry.

Thank you for posting this.

Love to both,

Steve x

User
Posted 30 Nov 2014 at 12:40
Being on the same journey, this made me smile and sniffle at the same time Julie

Big love birthday girl xxx

User
Posted 30 Nov 2014 at 15:19

Nice one Julie x

User
Posted 30 Nov 2014 at 17:59
fabulous SS made me laugh and cry as usual xx
User
Posted 30 Nov 2014 at 18:33

Julie,
That was beautiful, thanks for sharing.

Kevin

User
Posted 30 Nov 2014 at 22:35

That was a wonderful post Julie.
Our love to you both.

Chris

User
Posted 01 Dec 2014 at 18:46
Love it Julie just trying to work out my window 😘
Don't deny the diagnosis; try to defy the verdict
User
Posted 01 Dec 2014 at 22:49
Hello Julie

lovely post sad but with your usual humour made me smile.

Carol x

User
Posted 03 Dec 2014 at 19:40

It's not often I am lost for words Julie but right now, speechless. You are a very special lady x

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

User
Posted 19 Dec 2014 at 12:56

zytiga and xtandi block androgen receptors , so they work in a different way , thats why you still need lupron injections to reduce testosterone along side them

User
Posted 28 Dec 2014 at 22:00

Well after a lovely Xmas day things have started to go down hill again, Trevor was on top form and even cooked a traditional Jamaican breakfast for the boys (Akee and salt fish) . Boxing day he started to feel unwell but nothing specific then yesterday he spent the whole day in bed and didn't eat (for Trevor this means he is feeling very unwell) . I have had the Flu bug and thought maybe he was coming down with it.

He was very tired this morning and couldn't stay awake, very wobbly on his feet and nearly fainted his breathing was getting more and more laboured so I called an ambulance, long and short of it is the paramedics thought he may have scepcis we are still waiting for all of the test results. He has been admitted to a ward with a temp of 41 fluid on his lungs and very low BP. So just another day in our new normal. I know you said no ambulances Alison and we nearly made it.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 28 Dec 2014 at 22:40

Hi Julie,

So sorry Trevor is not feeling well especially after such a good Christmas Day.  Not what you both need at this time of the year. 

I hope they manage to sort things out for him at the hospital.  I felt very dizzy and had extremely low blood pressure when I was admitted into hospital in November so what you said reminded me of my experience.

Let's hope he's back home with you in time for New Years Eve.

Send him my Best Wishes.

Steve x

 
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