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Chris J's Journey

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User
Posted 12 Sep 2020 at 12:42
Forgot to say because of my present chosen path I was tentatively offered Radium 223 to catch all the upcoming bone mets. Need to find some posts on this

If life gives you lemons , then make lemonade

User
Posted 12 Sep 2020 at 14:40
Hi Chris

I've never posted in your conversation before but I've been following your journey since I joined here - it's both touching and inspirational. I wish you the very best. I just did a quick search on Radium 223 and found the following conversations - I know you can obviously search yourself! but just in case it's any help:

Radium 233 after Aberarerone by Davje1947

Radium223 by Banjobert

Radium 223 & spinal cord compression by MBS

Radian 223 by Newyork4 replies

Radium 223, pistachios & cannabis by MBS

Xtandi or Zytiga or Radiium 223 by Maryann

User
Posted 12 Sep 2020 at 22:42
User
Posted 12 Sep 2020 at 23:15
Gosh what a day Chris, you write it so well it came to life. I hope today the crossword got completed and the garden was sat in as much deserved.

Thinking of you and the family

Clare

User
Posted 13 Sep 2020 at 02:24

I was going to change my avatar to me in the blue dress but decided to give you Tulip 🌷 instead because I know you love her .

My friend no one can choose your path , only you can . Life is a funny old F****r ( sorry for those that don’t know me ) . If any one is easily offended  then please don’t read on . 

Like a few others on here ( and I am thinking of all of the Mavericks that in the words of the song , “ I Did it my Way “  so far you have you have done exactly that . You have done it your way and I take my hat Of to you .

We can all offer advice but no one can live your life , it’s yours to own and my goodness you have owned it all the way through your journey .

as you know I don’t touch base on here very often anymore but I do sit back and watch , you have owned this shitty cancer from the start , and going forward you will make the right decision for you .

Trevor did the 6 months on radium 223 and I documented everything. It’s all on my posts if you want to look . 

Lots of love 

BFN xxx

 

Edited by moderator 13 Sep 2020 at 08:03  | Reason: Profanity

NEVER LAUGH AT A LIVE DRAGON
User
Posted 13 Sep 2020 at 10:39
😂😂😂😂

Julie, you got moderated for using profanity! That must be a first - usually you get moderated for swearing 😂

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

User
Posted 13 Sep 2020 at 14:10
The blond in the blue dress rebel yeh. The actual word was there till 8am and made me laugh like mad

If life gives you lemons , then make lemonade

User
Posted 14 Sep 2020 at 22:56

Chris, I have spent the last couple of hours reading your five year story, taking notes along the way. Sorry I can’t offer anything more than my best wishes for you 🌹

User
Posted 16 Sep 2020 at 22:30

So glad you got to read it Chris before I got moderated . I’ll take moderated any day because what I wanted to say to you needed the F word .

some times you can’t shilly shally and you just have to say it like it is . 

I actually meant Fabidosa but spell corrector timed me out 🤗

BFN 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Sep 2020 at 14:56

Chris, Hope this treatment will hold things back and also give you the QoL you so desire. Thumbs up to you 👍.

Pub garden with a beer In the sun sounds enticing ....

Phil

User
Posted 10 Dec 2020 at 09:37
Hey guys and gals. Been a very weird 3 months but still great quality mostly.

Still on no treatment other than the palliative RT. PSA unknown but prob >2000

So I had a lovely holiday but still with breathing issues unresolved as they were there prior to RT. Then had a lovely week away alone painting. All tickety-boo!

Then got home and did way too much and also caught up with lost time with my wife. Followed by the back ache from hell for 3 days which had me on the supplied morphine which hit the spot. But god the fear in me that ‘ this was it ‘. It triggered all sorts of panic and worry and self doubt.

The hospice has been in touch a lot which has been great with a home assessment. Sadly recently afterwards I received a bumper packet of ‘ just in case ‘ end of life meds to be used at home if necessary. All ampoules and gonna be shown how to inject. This was very sobering as anyone could guess. Felt ill with worry for a couple of days , constantly doubting my plan. HT has been more and more on my mind.

Then another day from hell. Very very itchy tingly chest area. Phoned hospice who phoned acute oncology re spinal compression etc. They ruled that out but begged me in to hospital re possible heart issues re the breathing thing and heart problems. So next day 10 hours in hospital. You name it I got it — all bloods , Covid, ECG , chest X-ray , vitamin infusions , all ending up with a gold standard CT ( I swear I’m gonna die of radiation poisoning) to check for lung clots.

Anyway it appears that all absolutely fine except for the rancid PCA munching through my spine.

Three months ago my Onco discharged me and told me I would be seriously ill within 3 to 12 months so the clock is ticking.

A lady on here has been an immense help in that her hubby has just started HT and has been giving me plenty of updates etc to encourage me.

So despite my libido still being thru the roof and enjoying all things normal , the mental toll of impending demise has began to take over and I contacted hospital yesterday with a view to starting HT mid-January. I don’t want to rock the boat pre Xmas tbh. They said I was still viable and wouldn’t push me for chemo or anything— just something to give me more time. If it’s too late then I’ll just take it on the chin. It’s been my choice all the way after all which is what I’ve wanted.

Hopefully happy Xmas to all

Chris xx

If life gives you lemons , then make lemonade

User
Posted 10 Dec 2020 at 11:11

Hi Chris,

You’ve been amazing and I admire the way you have handled this awful disease.  You have certainly made the best  of a bad situation and have had the quality of life that’s been important to you.  There are huge/difficult decisions for each person to take on this journey and all we can hope is that the right one is made at the start of such an emotional ride for all.  

I really hope that your decision to have HT at this stage will enable you to carry on enjoying life as much as you are able and to have many more treasured holidays.

Take care and enjoy Christmas with your wife and son.

Keith and I wish you all the very best going forward.

Ange xx

User
Posted 10 Dec 2020 at 11:41
Tell them you want the upfront abi or Enzo too, very little downside and very effective upside. God knows you have saved the NHS a fortune to date so you deserve it!
User
Posted 10 Dec 2020 at 12:00

Hi Chris

Sorry to hear you have been going through it since your last post, but pleased you have been able to manage some quality time away etc. I believe you have chosen the right path in the respect of accepting HT and am hoping this will help. I don’t know what is being offered but in my case I was put on Degarelix (Firmagon), Aberaterone (Zytiga) and steroids when my doubling time was less than a month and many mets. My PSA has dropped to 0.66 and is still dropping. Degarelix will get you to castrate level very quickly in approx 1-2 days and the Aberaterone will block the remaining testosterone.

Anyway enjoy Xmas and look forward to a more positive New Year. We are all routing for you.

All the best

Roy

User
Posted 10 Dec 2020 at 12:51

Hi Chris , sorry to hear you’ve been going through it recently, but still managed to fit in some good times. I really hope the HT works for you and controls the PCa for many years. 

Keep on fighting. Best of luck.

Phil

 

User
Posted 10 Dec 2020 at 13:22

Chris, mixed bag of fortunes there. The HT decision is probably a good move, as said before you can always stop if it causes to many issues.

Thanks Chris

User
Posted 10 Dec 2020 at 13:44
Just want to add my good wishes and hope that the HT and what is planned eases your ongoing situation.
Barry
User
Posted 10 Dec 2020 at 14:28

Hi Chris, it's been a long while since I last posted. Bad time for my family lately.

I don't know what I'm supposed to write, so, I'll just say I'm so sad to hear that, but at the same time, let me tell you that I've always had, and continue to have the feeling that you're indestructible.

Try to stay positive and get relief for your pain. And don't let dark emotions defeat you. Capture them in your canvas, it's a good way to face them. Come on, big man❤️❤️.

 

 

User
Posted 10 Dec 2020 at 16:05

Hi Chris, so pleased you managed to get some quality time away.

Sorry you have been in hospital and dealing with so much pain.

Throughout the PC journey there are lots of decisions to be made and dark thoughts can overwhelm us. Here’s hoping the HT will reduce pain as well as buying you some extra time with your loved ones. As has been said we are all with you, hope you have a good Christmas. 

Ido4

User
Posted 10 Dec 2020 at 16:26

I have to hand it to you holding out without HT.  Very different from me in so many ways, I feel sure.  All the best, Peter

User
Posted 10 Dec 2020 at 16:51

You have done really well. With hindsight, we could have done things differently but my oh always trusted his oncologist to know best and we never really queried anything much.  I hope you still have many more good times.

User
Posted 10 Dec 2020 at 18:19
Hi Chris

Glad you had a good break but sorry about the rest of the sh#t since. I hope the HT knocks it back for as long as possible.

Enjoy Christmas with your family if you can.

All the best mate

Bill

User
Posted 10 Dec 2020 at 18:38
Best wishes to you and your family over the Christmas and new year period .

Debby

User
Posted 10 Dec 2020 at 20:51
Great that the hospital has left the HT offer on the table all this time - and waiting until after Christmas now seems wise. Lots of love to you all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Dec 2020 at 20:56
You’ve travelled this entire journey in the way that’s right for you, Chris, and I admire you for doing that. If the HT can give you more time, that does sound like a sensible decision. I hope you’re able to enjoy this Christmas as you deserve to.

Very best wishes,

Chris

User
Posted 10 Dec 2020 at 21:09

I am sorry to read that it’s got to where it is and your choice of what to do in January is you from day one, your choice. Hope you have an amazing Xmas and that January gives you what you want too. Take care .

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 10 Dec 2020 at 21:16

Chris you are amazing. You have done so well to get this far and have a reasonable QoL. If you'd have listened to cautious people you would have been on HT ages ago and missed out on a few good years. However it really does look like the balance has tipped towards HT, your QoL without HT is going down hill pretty fast. I'd say you've managed to live life in the fast lane and HT means your moving over to the middle lane, hopefully you'll be able to stay in the middle lane for a few years (like a Sunday driver), then you might have to edge over to the slow lane. We all end up on the hard shoulder eventually. So good luck have a nice Christmas this year and hopefully for a few years to come. 

Dave

User
Posted 10 Dec 2020 at 22:39
Thanks all so much for some kind and sensitive replies. I tend to be hesitant to post on my own Journey these days but I guess it’s important not to just drop it !! I try to support others where I can as you know and admire those of you who still have the kindness and find the time to support all the new people on the forum.

My Onco has wanted me to be on HT for 2 1/2 yrs now. There has been no bravado there. Nor no confusion or ignorance. Just a fear of more change and how it alters my mental health etc. This has been such a sh^t year and I see it now as my last year if I don’t react soon. I want time with my wife and my children and a low psa cruise and some more trips in my roofless car around the country for sure. Yes I’ve felt my health decline considerably recently but still with all the values I held true to myself. So I’ll get thru Xmas and see a way forward. Thanks again all x

If life gives you lemons , then make lemonade

User
Posted 11 Dec 2020 at 00:55

Ahhhh Chris, you are such a star. You have supported, helped and been there for so many.Good to know HT still on the cards for you. Love to you and your family. 

Leila x

User
Posted 11 Dec 2020 at 07:20
Hi Chris

I think you have made the right decision to go on HT and to wait until after christmas, hopefully the HT will sort you out for a long while and you will get to spend a long time with your family. Hope you have a good christmas, all the best.

Barbara x

User
Posted 11 Dec 2020 at 11:18
Good luck however you decide to proceed
User
Posted 19 Jan 2021 at 14:02

Onco zoom Friday 15th Jan
Made it quite clear to decide palliative or treatment. Cancer in much of spine. Further RT reserved for later as having it now may flare the cancer enough to crack vertebrae.
So here I am joining the wretched HT club ( hurrah at last I hear you all say )
Starting 4 weeks Bicalutamide 50mg next Monday and first Decapeptyl injection in the middle. I specifically asked for this HT after reading and hearing from friends of less severe side-effects. Simply dreading it all but hope a decision will rest my tortured brain a bit. Will be having first PSA test done for a year also. Up in the thousands.
Here goes , hold my hand
X

Edited by member 19 Jan 2021 at 18:07  | Reason: Not specified

If life gives you lemons , then make lemonade

User
Posted 19 Jan 2021 at 14:43

Here’s hoping the side effects are minimal for you Chris, wishing you the best of luck going forward, you are a very brave man in your approach to this. I’m sure I speak for all on here when I say we’re with you all the way and are holding tight onto your hand xxx

User
Posted 19 Jan 2021 at 14:50

Sending you strength and a hand Chris. Very best wishes.

User
Posted 19 Jan 2021 at 15:25
Hand held .

Best wishes

Debby

User
Posted 19 Jan 2021 at 15:39

Originally Posted by: Online Community Member
Will be having first PSA test done in a year also. 

That's a good sign; before Christmas you weren't able to think that far ahead, now you just casually mention what you will be doing in a years time. Good luck and let's hope you'll be having many more annual PSA tests.

Edited by member 19 Jan 2021 at 15:40  | Reason: Not specified

Dave

User
Posted 19 Jan 2021 at 16:21

Originally Posted by: Online Community Member
Starting 4 weeks Bicalutamide 50mg next Monday and first Decapeptyl injection in the middle. I specifically asked for this HT after reading and hearing from friends of less severe side-effects.

Stay strong Chris. Also on Deca and I have to be honest and say I did wonder if the HT was working, as I didn't recognise any of the often quoted side effects. Scan/tests show it is, so just my imagination playing tricks. No weight gain, no fatigue, still happy wakeboarding (or would be if not for the bloody Covid over the last 12 months curtailing that severely), yes my libido has dropped off but convinced that's more mental than physical (just don't seem to think about it), and still wake up some mornings "stood to attention" as it were. Also find a bit of day-dreaming sometimes has the same effect and if we were that concerned about it, I'm sure a little blue pill or similar would work fine.

Good luck to everyone coping with the insidious big C

User
Posted 19 Jan 2021 at 17:53
Hopefully you won’t have an6 side affects that matter and qol will stay strong.

Holding your hand mate

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 19 Jan 2021 at 19:17

CJ 

I really do hope it works out for you. I admire the way you have dealt with this tish disease. Keep going mate.

Thanks Chris

 

 

User
Posted 19 Jan 2021 at 19:26
Chris

Even now when you eventually and reluctantly had to make that decision you've done it your way by insisting on the specific treatment you want, so hats off to you for that.

Wishing you a good reaction to the treatment and good luck with the side effects.

Cheers

Bill

User
Posted 19 Jan 2021 at 19:39

Good luck Chris 

 

User
Posted 19 Jan 2021 at 19:49
Very best hopes for your treatment, Chris.

Chris

User
Posted 19 Jan 2021 at 21:25
Hooray! Here is my hand 🤝
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2021 at 07:47
Well done Chris sometimes the right decisions are the hardest.

User
Posted 20 Jan 2021 at 10:29

Decisions made can sometimes be a relief. A hand 🤚  is here.

Leila  

User
Posted 20 Jan 2021 at 11:04
You’ve made the decision mate. Hopefully the side effects won’t be as bad as you envisage. Stay strong Chris

Bri

User
Posted 20 Jan 2021 at 12:43

Chris, another hand to hold on to here.

User
Posted 20 Jan 2021 at 13:52

Chris, good news you’ve started some treatment.   I’m on Decapeptyl, apart from when it started I’ve had very few side effects compared with when I was on Prostap.

Hold on tight!

Arthur

User
Posted 20 Jan 2021 at 15:39

We’re with you CJ.  Good luck going forward x

Ange & Keith 

User
Posted 20 Jan 2021 at 17:10

I’m with you all the way Chris. The treatment will bring things under a level of control.

I hope the side effects are minimal.

As for holding your hand I quote from Auld Lang Syne.

And there's a hand, my trusty fiere
And gie's a hand o' thine

All the best,

 

Ido4

 
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