Chris J's Journey

User

Posted 19 Nov 2019 at 23:16

Enjoy your Christmas and I hope all goes well for you next year. There seems to be different ideas on the order in which treatments are given.

Thinking of you and your family.

User

Posted 07 Jan 2020 at 17:21

Thanks as ever to anyone that has followed my story. I’m feeling really fragile right now , knowing that on the 20th Jan I’ll be having my Third set of Bone and full body CT scans in a 12 month period. And it’s to confirm progression to lymph’s and spine. 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. That’s all :-((

User

Posted 07 Jan 2020 at 17:52

Chris, really feeling for you, and hoping for best possible news, whatever that is.

User

Posted 07 Jan 2020 at 18:57

So sorry you are feeling this fragile Chris. We are all with you, though that is scant reassurance as you wait on these next scans and results.

I hope you can find a way forward, you are stronger than you give yourself credit for.

Your friend,

Ian

Ido4

User

Posted 07 Jan 2020 at 18:57

Rooting for you 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 07 Jan 2020 at 19:26

Difficult decisions to be made, not dwelling on it but conscious that my next PSA test may lead to further treatment. Keep going mate all the best.

Thanks Chris

User

Posted 07 Jan 2020 at 19:49

Thinking of you Chris and praying for the very best news following your scans. Keep going, you might feel stronger tomorrow. xx

User

Posted 08 Jan 2020 at 12:40

We are all rooting for you Chris.

I know you are terrified of the Hormone Therapy. I can only tell you my experience of Prostap. I didn’t put on any weight , carried on down the gym and did a 5k Tough Mudder. I get slight hot flushes but nothing to worry about and no fatigue. I also didn’t lose all my libido and the 5mg Ciallis means I still get the night/morning arousal. It’s not like it was before and obviously I’m hoping it will get better when my HT wears off. 100mg Viagra worked perfectly but didn’t like the non spontaneity but I’m not ruling it out in the future as I didn’t get any side effects from it , or the Ciallis.

My biggest issue with the Prostap was it seemed to cause me to open up my memory of things I’d buried long ago. I don’t fully understand why. I don’t know what my experience would be without those childhood traumas but I suspect I would have just felt a little depressed. But as you know there is treatment for that. It’s funny but I’ve also remembered loads of good things from my childhood that I’d buried along with the bad, and I’ve reconnected with some old school friends. So there’s a small silver lining 😆. I do understand your fears due to the Bi-Polar but it seems many men get no mental issues at all and you may well be one.

We do all seem to have different side effects on the HT and you may find they are more manageable than you are imagining. There are a couple of different types of HT and you may need to trial them to get what suits you if need be.

I wish you all the best and hope all goes as well as can be on the 20th.

I think I need to plan another fund raising this year to help with PCa UK research into better and less debilitating treatments.

Take care

Phil

Edited by member 08 Jan 2020 at 12:42 | Reason: Not specified

User

Posted 08 Jan 2020 at 15:54

Chris, Support being sent over the ether, lots of about for you, and well deserved it is too.

I can’t how difficult it is for you... and your family.

leila ( stop singing that song)😉

Edited by member 08 Jan 2020 at 15:59 | Reason: Not specified

User

Posted 08 Jan 2020 at 16:38

Hi Chris,

I have followed your progress from 2016 when i was first diagnosed and you come across as a positive man that has helped many of us here with advice and knowledge to move forward what question to ask at oncology and specialist meetings.I don't think you realise how valuable you assistance has been to us all.

Good luck with your next appointment we are all thinking of you.

Regards John & Pat.

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.

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