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Chris J's Journey

User
Posted 22 Feb 2016 at 18:57

Thinking of you and Elaine as always Chris. X

We can't control the winds - but we can adjust our sails
User
Posted 22 Feb 2016 at 20:24
Chris

good post and update.

PSA 0.13 woo hoo

No need for me to say any more on here other than this, remember this is your life, your illness and your decisions, but if any of us can help you to bounce your thoughts and ideas around, discuss them with El and your medical team then count me in for one.

My very best wishes as always

xxx

Mo

User
Posted 22 Feb 2016 at 20:43
Hi Chris

Thank you for the update. Low PSA sounds like a good sign.

Thinking of you at this difficult time.

As you can see there are a lot of forum friends behind you.

Sending best wishes.

User
Posted 22 Feb 2016 at 21:20

CJ, this is a brilliant suggestion from Surr ... a pre-pre-planning meeting! Once they have met you, the RT staff might decide that they can't handle you - or you might find the place is not as scary as you imagine! Either way, it works. Ask them what experience they have of supporting someone with bipolar - what do they know about it and do they understand that this is a bit more than an anxious patient. Has your psychiatrist or CPN been involved in helping them to prepare for having you?

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

User
Posted 22 Feb 2016 at 21:28

Chris

"At least i'm positive ( Elaine said she would kill me anyway if I didn't have treatment )."  Chris J May 2015

I am sure that still applies, so as you also said in one of your previous posts you have not had a choice.

Your got over the hurdle once, you can do it again.

ED. Twenty one months on things are starting to move.

Thanks Chris

 

User
Posted 22 Feb 2016 at 23:23
Oh Chris,

I totally feel for you my friend , devil you do and the devil you don't. You are sooooo far from the end of the fight. You have to believe in yourself. You can do it I so wish Top Gun was here to help guid you. All I can say is my dear old dad had a saying and that was the only regrets in life are the things you don't do not the things that you tried and failed at.

Lots of love

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 23 Feb 2016 at 00:21

Hi Chris,

Don't worry about the side effects of RT, it is a breeze, all you have to do is stick to a low fibre diet for a few weeks, three or four weeks without cabbage or beans isn't that difficult, and you can pig out on Jaffa cakes!

:)

Dave

User
Posted 02 Mar 2016 at 15:58

The big Ocologists appt today ! Actually he's quite small.
He agreed the RT was a shot in the dark , himself and his peers suspecting spread , and acknowledged that for myself and my state of mind it was unnecessary treatment. There is a tiny amount of seminal vessicle left inside me but they are quite sure it couldn't be causing so much PSA. He was primarily offering it due to my tender age.
He agreed I would be staying on HT anyway probably forever even if I have RT. So RT is off thank the Lord and I can be left alone slightly. A CT scan in a fortnight to check abdomen as a lot of pain still since the day of the op. If anything getting worse. And a PSA as a benchmark.
From now on HT only with quarterly PSA test. I'm staying on Bicalutamide until it fails ( hopefully not soon ) so as to give me the best chance of a relatively normal life. Then obviously injections and eventually chemo. No trials on offer or early chemo but he said things can change. He guesstimated life expectancy as 4 to 6 yrs but we all know that is very difficult to predict.
We did come away with the opportunity of stopping HT altogether and awaiting a PSA rise of at least 5 before specialist scanning to see where the critters are. There would then possibly be the chance of treating individual targeted tumours with RT. If there aren't too many , he said life expectancy was better than with HT alone. He said my CholinePET at PSA 2.2 was a waste of time but again because of my age they were throwing everything at me. We have an appt in 4 weeks to discuss scan and whether I would like to try this.
You may or may not be surprised to hear that I'm fine with today's outcome. I desperately didn't want RT and its potential short and long-term side effects , especially if it wasn't curative or life extending. And also I now have RT left in the bag for future pain relief etc.
I think I'm going to have a very large glass of red or two tonight. Best wishes to you all
Chris

User
Posted 02 Mar 2016 at 16:10

Enjoy that glass (or two!) of wine my friend and well done for the positive attitude to a carp meeting.

4-6 years seems like nothing but we both know that the speed these treatments (or tweaks to current treatments) come along there may well be something for you in that time. We'll hope so eh.

You didn't want the RT anyway so that pressure has been taken off you.

As always, I keep everything crossed for you and El. Good luck with the reasons for the abdo pain.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 02 Mar 2016 at 16:10

CJ, I am so pleased - the right outcome in the end and you will be more inclined to trust his judgment in the future now he has communicated with you a bit more than he did before. Enjoy that wine

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

User
Posted 02 Mar 2016 at 17:00
I'm also delighted to read this result and the that you are happy with the outcome. Trust in your doctors is very important. We have trusted our oncologist every step of the way and still have all the chemo, and new drugs in the toolkit waiting for us. After five years with spread, we are glad we managed to get the right treatment for us without even knowing if it was right!

Enjoy that glass of red, well deserved.

Lots of love

Allison

User
Posted 02 Mar 2016 at 17:18
Hi Chris

Happy, if that's the expression, that you are not going through something that you don't want. At least it is something less to worry about.

Enjoy your wine mate you deserve it.

Cheers

Sandy

User
Posted 02 Mar 2016 at 17:24

Hi Chris,

I'm happy that you're happy... if you know what I mean... http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes
Luther

User
Posted 02 Mar 2016 at 18:25
Chris

Pleased you have found a solution of sorts to your situation. Stay positive.

Thanks Chris

User
Posted 02 Mar 2016 at 18:42
Hi Chris

Pleased to hear that you are happy with the outcome of today's meeting.

It is easy for me say but try to stay strong and positive.

Take care and enjoy that wine!

Best wishes

User
Posted 02 Mar 2016 at 19:24
Chris,

I'm pleased you do not have to face RT in the near future. So enjoy tonight and those drinks.

Have one for all of us who are with you all the way.

Take care,

John

User
Posted 02 Mar 2016 at 20:44
Hi Chris make sure it's a decent red 😊 and save a glass or two for Elaine. Jx
User
Posted 02 Mar 2016 at 20:45

Enjoy your wine, sounds like the right result. There remains lots of possibilities if things change. Good result.

User
Posted 02 Mar 2016 at 22:35
Chris

honest answers to your questions, now you have some clarity and that means you can make informed decisions.

Im smiling if you are my friend

xxx

Mo

User
Posted 02 Mar 2016 at 23:14
Hi Chris,

Pleased you achieved what you wanted, will take away some of the stress.

Hope you were able to enjoy few drinks this evening.

Take care.

Steve

 
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