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Chris J's Journey

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User
Posted 22 Mar 2018 at 13:16

Grrrrrr are they EVER going to fix this

User
Posted 22 Mar 2018 at 18:15
Chris,

Re: radiographers making comments at bone scans

This is a pain in the arse tbh, the last one I had the radiographer says “hymn, are you experiencing any unusual pains recently?” As she looks at the screen looking interested. I asked if she saw something worrying and she says “it will take two weeks to find out about”

Had me really worried about what she saw, but scan came back clear. I think they don’t realise how offhand comments might be received by patients in our position
User
Posted 22 Mar 2018 at 19:50

They can probably see all sorts of things that are not cancer related. John's last scan came back clear for mets but has led to him having two new knees!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Mar 2018 at 19:53

I think I need new knees too lol. Depending on what else is happening! Thanks for comments everyone x

User
Posted 23 Mar 2018 at 15:53

Celebrating rightly or wrongly ! !
Scores on the doors ..... Psa 24 , all other blood tests clear , full body CT clear , full body bone scan clear ( except wrecked knees lol ) , and I’m generally very healthy and leading a normal life since surgery nearly 3yrs ago.
Onco decided on no action based on no clear evidence of advanced PCa. Review bloods and psa in June. No scans till Sept ( I’ve had a lot ).
Action will probably be based on symptoms and / or psa velocity change. I’m utterly comfortable with all this and committed to living life to the full whilst I can. Booked our summer holiday already for the whole family. Yes it’s a worry for a week come test time , but it’s now forgotten already. Huge rib-eye steak in the fridge for tonight and a bottle of Rioja. Thanks again to everyone for support

User
Posted 23 Mar 2018 at 15:56

BRILLIANT!!!

User
Posted 23 Mar 2018 at 15:57

Great news Chris so pleased for you


 

Don't deny the diagnosis; try to defy the verdict
User
Posted 23 Mar 2018 at 16:13

Fantastic news. Enjoy the steak and the vino with the family ... you all deserve it.

User
Posted 23 Mar 2018 at 16:14

Great Chris,


Keep enjoying life.  Enjoy your steak!


Steve

User
Posted 23 Mar 2018 at 16:24

Good news Chris, also rib-eye steak and a bottle of Rioja sounds very enjoyable.

User
Posted 23 Mar 2018 at 16:29
Excellent news
User
Posted 23 Mar 2018 at 16:55

Only ONE bottle?

You're slipping young man.

Well done. Enjoy the steak, the wine, your life and more importantly,your lovely supportive family.

We can't control the winds - but we can adjust our sails
User
Posted 23 Mar 2018 at 17:24
Just got back from a school trip so first job was to see if there was any news from you and what great news it is. Brilliant - glad it's now behind you and you are moving on.
User
Posted 23 Mar 2018 at 18:17

Great news ,ching ching !!
Debby

User
Posted 23 Mar 2018 at 18:21
CJ

Great news Chris, I will raise a glass tonight to celebrate.

Thanks Chris
User
Posted 23 Mar 2018 at 18:37
Fantastic news Chris. Enjoy.

All the best

Roy
User
Posted 23 Mar 2018 at 19:17

Fantastic news Chris. I'm very pleased for you. enjoy

Paul

User
Posted 23 Mar 2018 at 20:47

Fab...great news Chris.

So pleased for you

Clare

User
Posted 23 Mar 2018 at 21:08

Enjoy your celebrations and many more to come.

Ray

User
Posted 23 Mar 2018 at 21:19

How weird is that! What is the onco’s theory? I hope you have both had a lovely evening, especially El for having to put up with all the Lego and angst x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Mar 2018 at 21:49

Top News Chris!!

Saludos and enjoy! :-))

User
Posted 23 Mar 2018 at 21:50

splendid news Chris, so pleased for you all..

have a lovely weekend.

enjoy the rioja, I'll have a bottle of malbec in your honour.

rib eye? excellent choice of cut.

:-)

All we can do - is do all that we can.


So, do all you can to help yourself, then make the best of your time. :-)


I am the statistic.

User
Posted 23 Mar 2018 at 21:52

Haha I’ve just done an hour’s Lego !! Not sure but asked plenty of questions Lyn. It boils down to different people in different areas of the country with different Onco’s with differing views !! He may even be bound with what he can offer without substantial evidence. In my position he said the next treatment would still be SRT which I have no interest in at all as you know.
We all know one can have a low psa but a nasty cancer , or a high psa with a mild one , yet the rate of change is very pertinent in either direction. I’m not sure what to say , and it seems I say too much sometimes , but I’m personally more than happy to be left as I am enjoying life and I have the confidence in this man and his credentials that I know he would be pushing treatment if it was needed. Massive amounts of over-treatment as we know because of NICE guidelines. All supposition , but I may have gone through 36 days RT last year only to be in exactly the same position as I am now , yet with more side-ecfects. I questioned micro-mets but they reckon 2 PETS would have seen them ! We both happy and I don’t want unnecessary treatment , so it’s win at the moment. I know it could all go wrong but I’d rather have it this way. Everyone enjoy their weekend !

User
Posted 23 Mar 2018 at 22:50

Just thought I’d have a quick check in to see how you’s are all doing on here. This is fab news to be reading Chris !!

Viv
X

The only time you should look back is to see how far you have come
User
Posted 23 Mar 2018 at 23:40
Great news chris😁

Jo.xx
User
Posted 24 Mar 2018 at 16:06
Wow, must be a relief - keep yer chin up m8 👍

I’m at 26 sessions out of 33 RT so far, I really hate going through it though as I’m fully aware that the cancer cells may well be elsewhere in my body whilst my prostate bed is getting zapped

Tired now but no changes in urinary/bowel/sexual function so far but I think those come further down the line?
User
Posted 24 Mar 2018 at 16:48

Originally Posted by: Online Community Member


Tired now but no changes in urinary/bowel/sexual function so far but I think those come further down the line?


 


Some men don't experience any of these or only experience them many years later. John is nearly 6 years post SRT and no sign of any problems yet. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Mar 2018 at 17:21

Wonderful news, Chris, enjoy

User
Posted 24 Mar 2018 at 17:41

That’s a marvelous attitude to have Chris.

User
Posted 26 Mar 2018 at 00:10
Terrific news chris!
User
Posted 27 Mar 2018 at 05:55
Great stuff Chris I like your style.
User
Posted 28 Mar 2018 at 09:22
Happy for you, Chris.

Ulsterman
User
Posted 29 Mar 2018 at 08:59

Good news Chris

User
Posted 24 Jun 2018 at 20:13
Scary time again. Full suite of bloods done last Friday. I get psa result tomorrow which is expected circa 50. All the rest — liver , kidney , bone , CRP, Magnesium, FBC , testosterone etc I get Friday at Onco appt. Really hoping to delay any treatment till September when I get a full suite of scans again and psa expected 100. Enjoy summer hols and full bodily functions to the full. Not keen full-stop on becoming a Monk with HT and/or Chemo at the age of 51. Still utterly pro-life as it is at the moment. Gave up HCA job as was so demanding mentally and physically, but taken up kitchen assistant at local Outward Bound centre to keep my mind off things. Will post psa tomorrow and Onco visit at weekend. Quite a long journey now at 3 1/2 yrs yet much less than others. Yet mine is a bit of an enigma — not going to treat something that every scan available can’t see. Taking my chances. Good luck all my fellow strugglers x
User
Posted 24 Jun 2018 at 20:18

I wish you the best, Chris. I see how hard this journey is being to you, but keep calm. 


Fingers crossed


Take care,


 


Lola.


 

User
Posted 24 Jun 2018 at 20:29

CJ


Fingers crossed for all your results this week. 


Thanks Chris

User
Posted 24 Jun 2018 at 20:51

Rooting for you Chris because you contribute and add so much to this forum, always selflessly offering advice and comfort to others.


Fingers crossed.


David

User
Posted 24 Jun 2018 at 21:42
Chris

Good luck on results.

Ray

User
Posted 24 Jun 2018 at 21:57

Fingers crossed for you Chris. 


Ian

Ido4

User
Posted 24 Jun 2018 at 22:17
Best wishes for you Chris.

Arthur
User
Posted 24 Jun 2018 at 23:19
good luck Chris your life first attitude is an inspiration.

Push them about your enlarged gland somewhere else (can't remember where!) and if that is impacting anything
User
Posted 25 Jun 2018 at 04:22

Good Luck with the results, Chris.  Hope they are good for you.


Steve

User
Posted 25 Jun 2018 at 07:34
Good luck and best wishes Chris ,
Debby
User
Posted 25 Jun 2018 at 08:36

Good luck Chris, keep ducking and diving!


Flexi

User
Posted 25 Jun 2018 at 09:48
PSA up from 24 to 38 so this is the first time it hasn’t doubled in a 12 week period for about a period of 18 months. Further results at Onco Friday.
User
Posted 25 Jun 2018 at 14:00

Chris
It's Good that your psa results are better than expected.


I truly hope that your onco appointment goes well for you.


All the best


Paul


ive just had a lovely chilled bio limonade.

Edited by member 25 Jun 2018 at 14:04  | Reason: Not specified

User
Posted 25 Jun 2018 at 19:59
Good luck on Friday, Chris.
User
Posted 26 Jun 2018 at 22:46
Good luck with the appt Chris

Bri
User
Posted 26 Jun 2018 at 22:59
Hope meeting with Onco gives encouragement.
Barry
User
Posted 28 Jun 2018 at 05:04

Hi Chris , just read your post so sorry to hear it  I hope you travel the right course  I only found out less than 4 weeks ago Gleeson 7  3 plus 4  thank god its within the prostate..  I am looking at doing proton beam therapy have you looked into that ?

 
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