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Chris J's Journey

User
Posted 21 May 2020 at 10:30

CJ

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

CJ

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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