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Chris J's Journey

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User

Posted 30 Aug 2017 at 16:04

Hello everyone.
Been a while , enjoying life love and travelling. Oh and working too !
Saw new Onco today. I have been off HT for exactly one year now and chosen not to have RT.
PSA measured today was 7.6 up from 2.7 five months ago. My doubling velocity remains at approx 11 weeks. He is happy to keep me entirely off treatment and test 4 monthly. He will restart scanning if there is a velocity change and / or I experience body pains anywhere. He made it quite clear this is inevitable eventually. This plan fits with us both and my mental health issues and quality of life concerns.
Treatment plan ahead will be injectable HT , early Chemo , and Abiraterone has been offered.
The hugest battle I'm facing is mental stress and not knowing when I will deteriorate. I still want to pack my bags and run somewhere but I don't know where , and am tethered by my family life obviously.
Anyway thanks all for this site x

User

Posted 30 Aug 2017 at 16:36

Lovely to hear from you Chris with an update, albeit not a brilliant one. Still, it's probably what you expected eh and could have been a lot worse.

Yes,you have a few issues coming at you in the future but as we are always telling people on here, life with PC can change with the different treatments coming in. Hopefully, they'll be something for you then.

As usual we do our best to understand what it must be like for you with the stress and I can empathise with your desire to run away and hide, but that isn't you. You have fought it right through to this point and with your family behind you I am sure you'll give it your best shot.

Keep strong my friend. You know we are here for you

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

User

Posted 30 Aug 2017 at 22:47

Good to hear from you. Let's hope the treatment can hold off for a while so you can continue just getting on with living.

User

Posted 30 Aug 2017 at 23:12

Good on you Chris - dealing with PCa and mental health issues is a tough call. Life, love and traveling sounds like a good antidote and great that you have a supportive onco. Keep on trucking.

Ruth

User

Posted 31 Aug 2017 at 19:15

Hi Chris
It's been a tough call you made but sounds like it's the right one for your quality of life.
I've just recently decided to keep on with the tabs instead of going down the road of IHT.
ive not reached a point yet where the control stops and decisions on next step have to be made so I'm just plodding along doing as much as possible and keeping my mind away from the inevitable.
I don't know what else one can do
You take care and do the things you've always wanted to do.
I wonder sometimes whether one needs to be a little selfish - who knows?

Paul

User

Posted 03 Sep 2017 at 19:42

Hi Chris,

Just to say thinking of you, life, love and travelling... you continue to inspire... working too... you are a superstar of a man.

Hope you've lived and loved this weekend.

Thanks for the update

Clare

User

Posted 03 Sep 2017 at 22:49

Oh Chris that wanted to pack your bags and run comment certainly struck a chord with me , in fact forget the bags I have wanted to run and run so many times . In reality I don't run anywhere but in my head I run and run everyday as far away as I can get from the reality of our situation.
All of that running and not getting anywhere is exhausting trust me I have been to John Ogroats and back 🙃
The run trigger in our heads is a primeavel trigger to get away from a scary situation that in olden times would have got us as far away from a triceratops as quickly as possible but sugar when that Triceratops is trapped in your head then running away from your self is impossible .
Not sure if this would be an apt description for you but I suspect it is and it is 100% description for me. This is all a bit deep but just wanted to give my anology on living with pca.
Hence my Never Laugh at A live Dragon that is pretty much what it means .

If only we could have the mindset of dogs because they truly live in the moment , they don't think of the past nor the future only the here and know what is happening at this moment and if this moment is good then enjoy it to go the max.

Xx
BFN
Julie Xx

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Oct 2017 at 00:53

Hi everyone it's Chris's wife Elaine here. I've been re-reading a lot of the comments you have all posted over these months - I'm in the background hovering usually but wanted to come out of my shell and personally thank you all for the support you have shown and continue to give to Chris and I. I'm not really a forum-ite (for want of a better word!) but PC UK has been of huge value with information, support and friendship. Its been a difficult journey which you have all followed and I just wanted to say a big thank you for your company and your very kind and supportive posts to Chris - they do mean a lot.

User

Posted 03 Oct 2017 at 07:18

Awww, hi Ell. It isn't easy for anyone - wives and families included - and you have more to deal with than most of us. Glad to see you posting here x

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

User

Posted 03 Oct 2017 at 10:31

Thank you Lyn! Life sure has been turbulent.... but then everyone's journey is a rollercoaster - I guess it's all about holding on as tight as you can :) x

User

Posted 03 Oct 2017 at 10:36

Hello from me too Ell.

All we can offer is that listening ear and the shoulder to lean on.

Sometimes it's frustrating to read another person's posts and not to be able to physically do anything to help so it's good to know that we have been of some use. Thank you for telling us that.

Best Wishes to both of you and your family XX

Sandra

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

User

Posted 03 Oct 2017 at 12:02

Follow your gut Chris. The gut is often right. When you run, look up, look ahead and never look back. You won’t escape the Demon but you will have a sense of control which always psychologically boosts QOL.

Good luck brother

Bazza

User

Posted 03 Oct 2017 at 19:31

Hi Ell,

Lovely to read your post. My husband isn't a poster and doesn't even read the threads but does ask me about things that are happening on here but prefers not to look himself.

I have found it really mentally helpful to have somewhere to write and ponder and have gained much 'intelligence' from Chris' very informative posts.

With best wishes to you both

Clare

User

Posted 03 Oct 2017 at 22:34

Welcome Ell lovely to connect with you.
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 04 Oct 2017 at 07:29

Hello from me ! Often read Chris's posts ,like claret my husband reads nothing ,I have to drip feed him information !
Best wishes
Debby

User

Posted 04 Oct 2017 at 16:12

Thanks for the welcome! It's nice to know I am not the only background hover-er :) We have talked a lot lately Chris and I, and agreed that I hijack his thread and post a quick follow-up. I hope it doesn't sound like I am telling anyone how to suck eggs as it's definitely not the intent!

I know many members have publicly and privately messaged that his story and input has been of immense help to those that find themselves in this horrible position - who knows maybe this will help too. It's a perspective anyway. It has to be said we are a complex picture and the cancer diagnosis unhappily came in a very settled time. So now all these months down the road we find ourselves still here taking in seemingly forever new ground. One of the great strengths we have is our ability to talk and be honest - well these conversation just keep getting down to the bare knuckle and we are both a bit wrung out.... but what I would say to anyone struggling is keep on talking no matter how awful it may feel because it's the only way forward. Stating the obvious? Probably! But sometimes REALLY straight talking about hopes and needs and wants and desires and fears makes you learn bits about yourself and each other that you maybe never realised were there. And this very cruel cancer affects pretty much everything possible.

So at the moment on this journey we are playing the waiting game and still talking, figuring out and still trying to forge a way through all the crap that the cancer throws up. And thinking outside the box too to help Chris find his path and a bit of peace. Yep we all get mad, angry, frustrated, hurt but once you get through those moments there are key words - kindness, compassion, love, goodwill, generosity. Altruism. That's a hard one! (Isn't Piglet supposed to be the only true altruist?!) Communication can be hard (hands up!) but it's just so so vital xx

Edited by member 04 Oct 2017 at 16:18 | Reason: Not specified

User

Posted 04 Oct 2017 at 21:55

Lovely to finally be able to chat with you El and yes I totally agree with everything you said this piggin disease is a clucker and that’s putting it mildly .
Chris has been so open and honest with his journey i take my hat of to Him .
BFN
Julie x

NEVER LAUGH AT A LIVE DRAGON

User

Posted 05 Oct 2017 at 13:24

Thanks everyone and Elaine. Yes this last six months or more has been traumatic in every sense of the word. I may be off treatment and physically outwardly looking fine at the moment. But the monster is growing within. I wake up and it’s sat on my shoulder , I wrestle with it all day , and then I take it to bed with me at night. Just biding our time because it’s doubling so fast yet even the Hubbell Telescope can’t find it , even though it can see a clanger fart two trillion light years away. Yes I’m gonna get poorly again and have whatever they throw at me , but when. My problem has been awful , especially being bipolar on top. I want to run away , live my time , get drunk , sit up all night watching films —other stuff I can’t talk about on here. Yet my ties to home and correctness and fatherhood and work and being a husband seem relentless. I can’t escape , I don’t know if I want to , I need to , I can’t find a way.
Yes poor Elaine has had to deal with all this. It’s virtually broken us at points. I think it has actually. But we are soldiering on and talking and taking breaks and coping through a terrible strain. My plight is not yet as bad as many others on this site , yet knowing it’s there ticking and will come back and is incurable is a tough burden to bear.
Next PSA December and full bloods also. When to scan again they not sure but my psa will be over 10.
Thanks , everyone, as ever x

User

Posted 05 Oct 2017 at 14:36

Hugs Chris, big hugs.

I'm facebooking with my nephew and godson who is also going through a bad patch through depression and he doesn't have the cancer to contend with either.

It's a bugger innit !!

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

User

Posted 05 Oct 2017 at 21:07

Hi Chris and Elaine
The thing for me is that I always try to say it as it is but not to be too miserable about it. We have been so incredibly lucky, despite spread to bones and lymph and Gleason 10, nearly seven long years ago. I remember praying to a God I don’t believe in and asking for four years and, well we have had seven so far. Life is up and down but I still have my lovely man with me, I cannot complain.

But I want to!

It’s lovely that you can talk to each other.

Lots of love
Devonmaid

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