Chris J's Journey

User

Posted 08 Jan 2020 at 17:40

Sorry I can't offer any practical advice Chris as I have no experience of your circumstances. But I can just wish you all the best of luck for the best results possible from the scans. And thanks again for your advice and support in the past. You are a very valued contributor to this site.

Cheers

Bill

User

Posted 08 Jan 2020 at 20:30

Chris, you have been such a rock and source of inspiration for so many of us (both men and women) on this site!

I just want to give you a big hug a tell you what a wonderful guy you are!!

Wishing you all the very best!

Call or text me anytime!!

Saludos!

Pablito X

User

Posted 08 Jan 2020 at 22:01

Originally Posted by: Online Community Member

I’m not terrified but just simply dreading moving on after 4 1/2 yrs full recovery post op. It feels so surreal as I feel so fine and am living a totally normal life in every way.I was told HT would be for the rest of my life and after reading all your stories it just haunts me that my life will change forever again. And then whether to have Chemo up front or not. My mental stability is dodgy at the best of times , and work is so important to me as is my love life. Just scared guys and very sad.

Ah CJ, you will already have worked out that I have been hesitating to reply because I don't know how to word it without hurting you. But honestly, I have never seen a man come on here and say "hi, I've just been diagnosed but my life is already tihs so I am really looking forward to having hormones" and only very rarely have I seen anyone post "my work and love life is irrelevant so bring it on." I guess what I am saying is that your perception that you are somehow different isn't correct; the only difference is that you are more capable of verbalising your fears and less hung up on the 'stiff upper lip' than some.

You were fragile when you first joined us; you were fragile and very resistant to RP but survived; you were extremely wobbly when you first realised that the RP that you hadn't wanted had failed; you have survived all these things that your head was telling you were unsurvivable. And you will survive this as well. No one is going to force you to have chemo if you don't want it - going onto HT means your job should be unaffected and as I have told you many times, YOU DON'T KNOW WHAT WILL HAPPEN TO YOUR LIBIDO!!! Not everyone loses it - Alathays had regular HT and a number of the big hitting drugs when they were still trials and continued to have great sex almost right up to the end. It is your way to think and anticipate the worst, I get that, but as our old friend Spurspark used to say, dead men don't have sex. And interestingly, some of these old heroes of the forum who outlived and out-played all predictions for their cancer (Alathays, Spurspark, Nimeniton, Old Al, TopGun, Candyman, Trevor, Devonmaid's husband) only had chemo towards the end if at all - Si_Ness was really the first person on here to have early chemo and that was only about 5 years ago - so while there is research to suggest that it helps, deciding not to have it is no big deal.

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

User

Posted 09 Jan 2020 at 05:49

Thanks Lyn.

User

Posted 20 Feb 2020 at 08:47

Hi all. So scores on the doors re Jans re-scans of Bone and full CT. No psa taken but prob in excess of 300 now !

No further development in 3 months of the 2 areas on my spine although they are still there.

Both lymph nodes at back of abdomen have continued to grow. The largest being 14mm where 10 mm is considered normal.

Between my GP and councillor and wife and I we had sent a huge email highlighting my fears of the next steps and treatment and mental stability etc

# be kind

Onco felt as I have no symptoms whatsoever that a check up in 3 months was fine with a psa , and that scans would be done again in 6 months time. He would rather I was on HT but yet again his feeling was that it wasn’t urgent yet and I could continue enjoying life as I like.

As for holidays he said I could tell insurers I have distant mets that don’t require medical intervention yet.

We were both stunned leaving the appt having felt sick with worry the last 4 weeks. It’s nice that he sees the whole picture and the whole patient.

Good luck to all of us , man and woman !

User

Posted 20 Feb 2020 at 08:53

No options to zap the lymph nodes?

User

Posted 20 Feb 2020 at 09:00

Well nothing offered. I did put all that down in the email. I asked for any options rather than systemic

User

Posted 20 Feb 2020 at 09:34

Chris, Hopefully the nodes can be zapped. I would have been on HT by now in your situation but I totally understand your reasons not to start yet.
Hope you can have a holiday and carry on enjoying life to the full.

All the best,

Ido4

User

Posted 20 Feb 2020 at 11:12

Weirdly good news in the circumstances - lots of love to you both x

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

User

Posted 20 Feb 2020 at 17:26

Your wife, your oncologist and yourself are all singing from the same hymn sheet. Best of luck in all future decisions you make, Chris.

User

Posted 20 Feb 2020 at 19:29

Chris

Good news about the spine Mets.

Re the lymph nodes, it sounds like being zapped as an option had or might have been considered but you say you 'asked "if any options other than systemic''. I would definitely ask again for definite confirmation that this has been considered.

I know you normally have all things/questions covered, but just my thoughts.

All the very best to you

Cheers

Bill

User

Posted 20 Feb 2020 at 19:34

Bit of a mixed bag there, we are all here for you. Take care.

Thanks Chris

User

Posted 20 Feb 2020 at 19:56

Good to hear you left the appt happier than when you went in Chris

Bri

User

Posted 21 Feb 2020 at 20:04

Well done Chris. I know some of us would have caved in, but your living your life without symptoms so good on you.

Dave

User

Posted 22 Apr 2020 at 18:47

Just an update for those who know / remember me !!

Onco consultation May cancelled. Telephone only. Bloods done in advance locally.

Psa 440 , all other bloods ok except for constant decline in white cells and lymphocytes since surgery June 2015.

Liver surviving it seems ??

Take care all

Chris J

User

Posted 22 Apr 2020 at 19:24

Take care of yourself too Chris

Arthur

User

Posted 22 Apr 2020 at 19:54

Absolutely take care Chris

Thinking of you and family

Ray

User

Posted 22 Apr 2020 at 20:13

Take care and stay safe. Thinking of you and your family.

Thanks Chris

User

Posted 22 Apr 2020 at 21:38

Thanks for update Chris. With white cells and lymphocytes declining stay safe.

Ido4

User

Posted 23 Apr 2020 at 06:11

Soldier on and stay safe Chris

Cheers

Bill

User

Posted 23 Apr 2020 at 12:38

Hi Chris, I have followed your ‘story’ since I joined the PCa club and the slightly more exclusive G9 club a couple of years ago. You’ve always been a source of inspiration to me. Understanding your mental issues has helped me get through with my own issues which at times seem worse than the damned PCa.
You may not feel like it but to us you are a true survivor come what may.

I wish you all the best and have my fingers crossed for you as always.

Good luck mate you are a warrior.

Phil

User

Posted 23 Apr 2020 at 22:23

Hi Chris

Thanks for the update. Positive vibes coming your way. You are a legend - sharing your journey, coming up with great advice and always telling things as they are.

So appreciate by so many

Thanks as ever

Clare

User

Posted 23 Apr 2020 at 22:23

Hi Chris

Thanks for the update. Positive vibes coming your way. You are a legend - sharing your journey, coming up with great advice and always telling things as they are.

So appreciated by so many

Thanks as ever

Clare

User

Posted 23 Apr 2020 at 23:49

Holding a steady course - stay well, my friend

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

User

Posted 20 May 2020 at 20:21

Onco phone appt last Friday 15th. He said psa at 440 was now very high but was more concerned with any change of velocity. He was particularly interested In general health and any symptoms of which there are none. The phrase HT wasn’t mentioned at all , most likely because of my long long e-mail a while ago explaining why I didn’t want it because of very multi-faceted reasons including ultimately mental instability and fragility of this whole affair. He said ‘ stick to the plan ‘ and both Bone and CT scans again for August. The only thing different was that he said I could contact and have the scans any time sooner which was a strange remark I should have questioned. Normally they are 6 monthly and that’s it. Maybe he feels I’m going to get ill really soon which is a real possibility. My heads not in the sand but I’m fine with how it is tbh. As always said , I feel maybe pain will decide my next move whether it’s too late or not.

Good luck to all x

User

Posted 20 May 2020 at 20:34

Decent news given the state of play, Chris. Long may you stay well. Did you change your mind about the HT? I recall you saying a few months ago that you were scheduled to start it in February?

Best wishes,

Chris

User

Posted 20 May 2020 at 21:00

No Chris I’ve just not got my head round to starting it. I’ve refused it since Xmas. I know I’m strange compared to others but it’s just what it is ....

User

Posted 21 May 2020 at 06:47

Originally Posted by: Online Community Member

I know I’m strange compared to others but it’s just what it is ....

Your disease progression/presentation is strange Chris not you.

Hope you stay safe and well for many years.

Cheers

Bill

User

Posted 21 May 2020 at 08:13

You need to do what's right for you, Chris. As long as you're comfortable with the choice you're making, that's all that matters!

Best wishes,

Chris

User

Posted 21 May 2020 at 09:05

Well xmas was almost half a year ago, so you have had five months more of life without HT, and without any symptoms; that sounds like a good thing to me.

Dave

User

Posted 21 May 2020 at 10:30

Long long way behind you but HT will probably be my next treatment and like you not something I want to do.

It is possible to have less HT and compromise between side effects and control of the cancer.

Keep going mate.

Thanks Chris

User

Posted 21 May 2020 at 12:05

Chris & Chris ....

I had 2 years of HT (last injection of Prostap last October) and I’d like to say I will never go back on but who knows the future. I was very lucky with the physical effects but not so lucky with the mental issues. It decimated my mind and I thank my wife and my counsellor for getting me through. I don’t need to reiterate what I’ve put on here previously about my mental struggle but I believe if you have underlying issues already the HT may exacerbate those. As the HT is wearing off I am feeling more positive and less sensitive and am dealing with my past better.

Unfortunately you can’t second guess how HT will affect you personally.

I’m sorry to sound like a downer for HT but that is my journey. I think it did the job regarding the cancer though so my consultant is happy.....

I do hope that some of the charity funding goes towards something better than just stopping/blocking Testosterone.

Best of luck to you two Chris’ and all the others in the same rickety old boat. Remember that you can try the different variations of HT to see what suits and also it’s possible to have ‘holidays’ if it’s doing the job at keeping the cancer at bay.

Phil

User

Posted 21 May 2020 at 14:32

Hope you continue to stay well Chris. You’ve got to do what feels right for you.

Best wishes,

Ido4

User

Posted 21 May 2020 at 16:03

Sadly I’ve just lost my councillor of over 2 yrs at a bad point in my life. I think it may be because of life issues of her own as she’s just quit and dropped her website etc etc. Thanks for replies guys

User

Posted 21 May 2020 at 16:17

Oh that’s not good Chris, you invite the counsellor into your head like no one else and to lose that now is hard.

I can’t see my counsellor at the moment due to COVID but I only have one NHS session left anyway. Not sure how I’m gonna be without her to lean on. She has phoned me twice but it’s not the same and I don’t open up like when you’re there together.

Really hope you can find another counsellor soon that you can connect well with again.

Phil

User

Posted 21 May 2020 at 17:57

I just don’t think I can start again with anyone !! Six weeks ago she said she would always be there for me. Then she stopped cos of Covid. Then we did 2 Skypes which neither of us liked , then she left it 3 weeks , then phoned and quit altogether. All strange but she was my confidante totally and it’s going up be hard without her. On the flip side I’m saving myself a fortune. Stay well mate

User

Posted 22 May 2020 at 01:34

Been ages since I visited so just to say hi Chris .. your saving a fortune comment made me smile.

Clare

User

Posted 05 Aug 2020 at 12:12

Bit of a tragic day but not unexpected at all
Full CT and Bone scans last week. Many more pictures taken during bone scan.
Onco consult via phone today
Spine mets significantly worse and now also rib mets !
Lymph involvement and growth in abdomen ongoing.
Severe back pain likely caused by spine tumours.
In a nutshell if we do nothing ( he said still an option ) he expects me to be very ill within months and maybe a max of 1 year survival. No alternative treatments other than HT which he knows I’ve not wanted.
Anyway he said we must meet face to face to make the right choices and El can come too. He is away 2 weeks and I’m away for a week also so it fits fine.
I’ve always known my run of luck wouldn’t last but no regrets.
Love to all fighting this insipid disease x

Edited by member 05 Aug 2020 at 13:22 | Reason: Not specified

User

Posted 05 Aug 2020 at 12:41

Well done to get this far. I know HT or other systemic treatments are not what you want, and only you will know the right decision going forward. I guess the cancer will not have had a chance to get castrate resistant, so if you decide on HT it may work for a few years. I wish science moved forward faster than cancer!

Dave

User

Posted 05 Aug 2020 at 12:56

Oh Chris I rarely post in your thread but have alway admired your outlook and decisions on dealing with this s**t disease.

I am sure Lyn and your closest friends on here will reply soon and give their advice and support. I feel really gutted for you.

Would you not consider the available treatments despite your reservations about the side effects. It's your decision of course but you could always try them and stop at any time if you can't bear them. I am sure you will make the right decision for you and wish you much more time to enjoy your life.

Ann x

Edited by member 05 Aug 2020 at 12:58 | Reason: Missed word

User

Posted 05 Aug 2020 at 13:41

Chris , I am so sorry to read this. You have always had a clear sense of what works for you and I am sure you will use that sense in your next step. Rooting for you as ever.

Kev

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 05 Aug 2020 at 13:51

Dear Chris, You have helped and supported people, me included, giving your time, advice and a ‘ listening ear’ Whilst managing your own situation and demons, you have my utmost respect. What ever path you choose to take, thoughts are with you and your family. You’ve given so much here, discussing subjects openly that some would see as taboo, your posts have helped us as a couple regain our intimacy and it’s good.

Take care Chris, love to you and your family.

Leila

User

Posted 05 Aug 2020 at 14:12

Oh Chris, as you say not unexpected but you have always had a clear view on whether to treat or not. You really don’t like the idea of HT, can’t blame you.

Whatever you decide I am with you 100%. It’s a vile disease we are all dealing with.

Would targeted radiotherapy at the spinal mets and/or lymph nodes be a possibility especially to reduce spinal pain?

Ido4

User

Posted 05 Aug 2020 at 14:26

So sorry to hear this Chris. Although you half expected it I’m sure it’s still a blow.

I won’t even attempt to suggest what you do. You’ve always taken your own path and it’s worked for you and you’ve been a source of inspiration to many of us.

Thinking of you and your lovely family .

Phil

User

Posted 05 Aug 2020 at 14:27

Sorry to read this Chris. You've bravely ploughed a lone furrow and have arrived at the crossroads.

Someone posted a while ago that HT effectively left them at 60% of their pre DX state.

I guess you have to weigh up with your young family if 60% is better than nothing.

Only you can decide.

User

Posted 05 Aug 2020 at 14:59

A long way behind you but the HT choice is probably a year or two away for me. Your onco gave a grimm outlook if you do nothing, did he give you an outlook if you have HT ?

If you do have HT presumably you can stop it if you wish. My situation wasn't in my plan ,but most of us including our partners adapt to a new normal.

Thanks Chris

User

Posted 05 Aug 2020 at 15:17

I suggested alternative treatment including RT but not an option even in a different CCG. He wouldn’t give prognosis on HT or Chemo. Basically he wants to discuss it all face to face which will be 2 weeks

User

Posted 05 Aug 2020 at 15:37

Sorry to read this. You and others were a great help to me when I was first diagnosed nearly 2 years ago. Good luck and best wishes with whatever you decide to do.

User

Posted 05 Aug 2020 at 16:02

Am finding it extremely difficult to pen a positive response to your latest update, Chris. As has been said by others, your positive and honest outlook in dealing with this bloody illness has helped so many others during recent years, myself included. Hopefully you will somehow find yet more positivity as the battle continues. Good luck.

User

Posted 05 Aug 2020 at 16:56

Chris,

I've followed your story since my arrival here, and admire you very much.

Hormone therapy impacts different people differently. It's something you could try, and back out of if you change your mind (although switching it off isn't necessarily quick). But I know you will consider the options carefully - you always have.

I'm wishing you all the best.

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