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Chris J's Journey

User
Posted 05 Aug 2020 at 17:32

Chris, you've always ploughed your own furrow, and we all admire you for it.

re. HT, like others have said, maybe hitting it hard for a short period and then taking a HT "holiday" now feels right? Keep on fighting!

Flexi

 

User
Posted 05 Aug 2020 at 19:00
Okay, you have done it your way so far and have resisted the HT on the basis that you want to maintain your sex life. You have always known that there would be a time to have to rethink though, and I guess you are getting to that point - with spinal mets that are now causing significant pain and a mass in the abdomen, your days of rampant sexiness are going to come to a natural end if you don't have treatment. At least on HT, you may find that you are more like Alathays than you expected and can continue with a high libido & great sex until almost the end of your life. the only thing that perhaps separates you & Alathays is that he didn't have COVID getting in the way of all his cruises!

Be brave, my friend - you can always ask for the 1 month cartridge rather than the 3 month, and stop if you hate it too much.

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

User
Posted 05 Aug 2020 at 19:07
Thanks Lyn, I’ll have the talk and do what’s right. I’ve spent my life conforming. I’ll do what feels the best. Bazza encouraged me too in his last messages. This five years has passed quickly my friend x

If life gives you lemons , then make lemonade

User
Posted 05 Aug 2020 at 21:40
Hi Chris. Taking a look in. Sorry to hear your news. But you’ve been clear about your path and where it was leading to. I hope the face to face in a few weeks is positive and some agreed way forward can be found.

Reading your post has prompted me to arrange a PSA test. I have decided that not having it is not fair to those I hold dear.

Take care

Bri

User
Posted 05 Aug 2020 at 22:28

Thinking of you Chris at this difficult/decision time.

Listen to Lynn’s wise words, they make a lot of sense.

Arthur 

User
Posted 06 Aug 2020 at 07:49
Hi Chris

Gutted for you having to make this decision. Think I'd be in the try hormones knowing you can stop if you want camp.

Thanks again for all your advice over the past few years.

Good luck whichever way you go.

Cheers

Bill

User
Posted 06 Aug 2020 at 10:16

Hi Chris

Gosh it really is crux decision time. Really feel for you. A’s dad was advanced at diagnosis so straight onto hormone therapy so I have a little experience of the HT time.

As you know I am massively in the QOL  camp and know you and your ‘team’ will weigh up QOL without v QOL with.

I am sorry this seems to be a binary decision now and I know you will call it but from one QOL rater to another I think  Lyns direct opinion  has a lot of merit. You would know you had squeezed the max out Chris and who knows how the HT will impact 

Good Luck

Clare xxx

 

User
Posted 24 Aug 2020 at 11:07

Hi Chris, it’s funny but for some reason you came into my thoughts today and I recalled you saying you see your consultant around now. 
Hope that you get all the answers you need to make your difficult decision. I suspect, knowing you, you won’t leave till you get all the answers.
One day hopefully they’ll find something more targeted than the current HT treatment for future PCa sufferers.

I have 3 weeks till my next PSA & T tests. Hoping the PSA rise isn’t as great as the last time. HT seems to be taking forever to leave my system so looking forward to next Jan when it’s a year since it should have started to wear off.

Best of luck.

Phil

 

User
Posted 24 Aug 2020 at 16:30
Thanks Phil. Just got off phone to specialist nurse but the actual Onco is on Friday ! She says I have multiple further bone mets to spine and ribs. Abdo lymph’s have doubled in size 20mm but lymph showing up at clavicle ( neck ) and also in a lung.

She said if they do nothing they can’t change the prognosis and will hand me to GP and hospice community team. May be able to add RT for bone pain etc.

If they do ‘ something’ then they could possibly change prognosis. That’s obvious even to me. But my mind is torn I’m so delicate about it all. Just had a great long loving fun weekend with my wife doing all the things a ‘ healthy’ couple do — because I feel healthy. But I lost the ability to be happy a long time back because of this disease. Not sure prolonging an unhappy life with reduction in quality is my choice. But 3 months to a year without treatment isnt appealing either. I’m not an idiot lol.

I fricking hate this at 53. All so sh**ty

If life gives you lemons , then make lemonade

User
Posted 24 Aug 2020 at 18:06

I really feel for you Chris although I can’t imagine what your going through.

I have to say I’ve not enjoyed my time on HT but...and it’s a big but, I didn’t get the physical issues much at all - still trained hard and ran a Tough Mudder. My real issue was my head, but for me it was mainly to do with past trauma resurfacing and me having to deal with that and understanding how it had affected me. And with the help of my counsellor I think I’m getting there.

So I personally feel you could stand a chance of not really noticing the HT. My libido did slip a bit but didn’t disappear completely. But a lot of that is to do with what’s in your head at the time.

I’d say give it a chance. You may be fine on it. 

Phil 

 

User
Posted 24 Aug 2020 at 21:20
It looks like you had a fantastic weekend away - I shall add to my list of places to see.

I get what you are saying about ability to be happy but, in reality, you had poor mental health before you were diagnosed; PCa has just added to the tihs. Let me know how the convo goes this week x

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

User
Posted 24 Aug 2020 at 21:50
Thanks Lyn. You have to see Winchester. It was the capital of England for a long while. The land that time forgot. Like visiting Spain or France or Italy but in the UK. Awesome landmarks also. Very very pretty but a long way from you x

If life gives you lemons , then make lemonade

User
Posted 24 Aug 2020 at 22:27
We drove past it this weekend and I realised that I have a number of clients in that area so I will get there ... once I am allowed out of the house :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Aug 2020 at 00:03
Pretty certain you will do what you want so I won't apologise for saying what I think you should do: Your cancer is basically chemo and hormone naive, surely it's worth trying at least one round of chemo and HT, you could get years of pain free life albeit sex free too.

User
Posted 25 Aug 2020 at 08:45

Francij1 , the HT doesn’t necessarily mean no sex. Everyone reacts differently to it.

Phil 

User
Posted 25 Aug 2020 at 09:09
I’d just like to add at this juncture that this decision s no longer really based on libido or sex. I’m gonna lose that anyway I know. Complex mental and medication issues in the mix also. But many thanks guys for some input as ever x

If life gives you lemons , then make lemonade

User
Posted 25 Aug 2020 at 10:58

Hi Chris.

I have been following you since 2016 when i joined the club and followed your fight every step of the way and admire your strength but also the advice and help you give to others with their own fight with PC.

Good luck with your next decision and i am sure you will do it your way.

Regards John & Pat.

User
Posted 25 Aug 2020 at 19:45

As a newbie I cannot not offer any advice but wish to send you a positive virtual hug and love especially for your kindness when I first reached out for some advice for my OH.

Feeling sad at your news 😢 

 

Kind regards 

 

Moozel

User
Posted 25 Aug 2020 at 23:25

Hi Chris, I think Moozel has said it perfectly. Your posts and messages have helped many. You've had more experience of this disease than most (sadly). So no advice from me, just another virtual hug. 

Dave

User
Posted 04 Sep 2020 at 09:59
Longest month of my life , and sorry probably the longest post of my life. It’s awful that humans have to go through anguish like this.

I’m not brave nor a coward , I’m not an inspiration ( Irun is !! ). I am a thinker , well educated and a bit of a risk taker.

I’ve actually not wanted to post for fear of unwelcome comments, but felt this huge thread needed updating.

Not once in this 5 yrs post op have I had the luxury of a tiny psa nor a glimmer of hope cure-wise. Even the much refused SRT was always explained as unlikely to be curative , so I took the QOL path and have no complaints that the last 5 yrs have been a great adventure for us all. And the nicest little job as school caretaker that I’ve ever had ( but just decided to hand my notice in ).

So 5 long years of watching my psa go stupid , at least 6 CT and Bone scans and 2 PET scans , all with nothing to show until recently. A true case of micro-mets for sure with last psa months ago at 440.

I’ve had a bit of a cancer bomb go off inside me this last 6 months. Multiple spine , rib and a hip met. Two large abdo lymph’s which have decided to travel to clavicle and a lung also.

It’s been 2 weeks of long talks with Onco , GP , specialist nurses and hospice councillor. At this point you realise just how specialised and empathetic and supportive all these people are and how neutral they are with no pressure. My GP is director of palliative care at a local superb hospice and has already secured me a place there and counciling within a week. He’s known me 8 yrs solid and my 28 yr history of mental struggles and bipolar. Seeing the state of me at the moment he feels we should treat me and my fears and wishes , rather than just the cancer. Most councillors say there is no right nor wrong and that you have to make your own decision. Ultimately you aren’t responsible to anyone nor have to justify yourself to anyone. The buck stops with you.

A close friend lost his wife to breast cancer. He told me at the end she wished to hell she hadn’t had all the treatments and felt she had just wasted time ill and depressed , and all the blue lights and pointless invasive procedures sounded horrible. I asked my Onco to his face if he thought I was a tit and he laughed really loud. He said he way preferred a challenge with an educated couple rather than someone who just did everything he was told.

In the next few weeks I’ll be getting a large single palliative dose of RT to ribs and spine which should cleanly end all this griping pain I have. Other than that I’ve stuck to the plan. No HT and chemo not available anyway. Big family holiday booked and hopefully some lovely trips with my wife over the next year. That’s what I love most.

Sorry for the epic diatribe

Love and wishes and support as ever to all going through this

Chris

If life gives you lemons , then make lemonade

User
Posted 04 Sep 2020 at 11:43

Chris,

I've followed your posts with interest  and admire the way you have ploughed your own path.

Enjoy your holiday and forthcoming trips 

Mike

User
Posted 04 Sep 2020 at 12:04

Chris, I have followed your posts since I joined the forum. I had no idea about this forum when I had my surgery in July 2015. But when the cancer came knocking back on my door I found out about it and I feel since then I have gotten to know so many wonderful people.

I have followed the path of maximum intervention which has left me with side effects that I’d rather not have but I am still ok with my choices, although I sometimes wonder.....

You, on the other hand, have chosen minimal intervention. Both of us have made these choices as is our absolute right to do so and I hope people respect that.

It sounds like your GP, onco and other professionals are rightly treating you as a whole rather than dealing with the cancer alone. They sound amazing and very supportive.

Only you would ask an oncologist if he thought you were a tit! That made me lol too.

I presume your cancer is still hormone naive so HT might help at some point to relieve pain.

Enjoy your forthcoming holidays, love and best wishes to you and yours too.

Ian

 

Ido4

User
Posted 04 Sep 2020 at 12:17
Sorry Chris but you ARE an inspiration!
User
Posted 04 Sep 2020 at 12:22

Hi Chris, 

Just want to send you my good wishes.

I'd also like to extend this to your wife. 

As the wife of a lovely man with advanced prostate cancer, I know that some times being strong is the only option you have got. 

You are making the right decision for you and I admire that a lot.

And yes you absolutely are an inspiration! 

Edited by member 04 Sep 2020 at 12:25  | Reason: Spelling

Mrs MAS

User
Posted 04 Sep 2020 at 13:14
Chris,

Love, respect and admiration to you and Elaine!!

Pablo

User
Posted 04 Sep 2020 at 14:38

So much admiration for you Chris. Glad you are having the RT for the pain and you are an inspiration. It’s good for people to read that at the end of the day they are in control of all decisions as your onco says for some the automatic reaction is to do as they are told without even being aware they can take control.

Have a wonderful holiday Chris

A is literally just out of theatre, you will never know how important it has been to me to hear from the few QOL proponents of which you are of course one.

Big hug

Clare

User
Posted 04 Sep 2020 at 15:14
Good post, my friend xxx
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2020 at 15:17

Wonderful post Chris. I hope I never have to make the choices you have had to. Thanks to your posts if I do have to make that decision in the future, I will be able to see the arguments so much clearer. I consider myself well educated and intelligent, but your decision is about the highest decision anyone can make, even a doctor of moral philosophy would be stumped.

Congratulations on the last five years, I hope the RT does its job for a while longer, I hope you can find other treatments which can give you a good balance of QoL over the next few years. Keep posting. Big hug (I know we are big tough men, but everyone deserves a hug) 

Dave

User
Posted 04 Sep 2020 at 20:58
You’ve never wavered from your decision Chris and, even though you have to deal with your mental health, you face the future with a positivity that QofL is all about. Have a great holiday

Bri

User
Posted 04 Sep 2020 at 22:19

Chris, I am a bit embarrassed that you see me as an inspiration as that is what you have been to me from day one of reading your posts. You have always seen it differently to me and been strong in your course,  I have been equally strong in mine , when all is said and done the best one is the one that you or I feel in hindsight was right for you (or me). 

My respect for you is immense and I hope with all my heart, soul and strength that you have the best of times now and for as long as your destiny allows. I wish we had met in person as I know you would have challenged my thought process for the better.

fingers crossed for you that the good things grow and the bad things slow.

take care my friend

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 04 Sep 2020 at 22:49
Thanks so much all for your kind words and strength and wishes. I’ve tried so hard to give the same back over my years on here.

I spoke at length with a hospice councillor this evening and it was the kindest , nicest non-judgemental conversation I’ve ever had. Despite my fears it brought about a sense of peace and warmth and semi-clarity. That we are all totally unique and individual and that there is no real right or wrong , just our own way and gut instinct. It was very comforting at this time for me. I appreciate so much your support everyone x

Chris

If life gives you lemons , then make lemonade

User
Posted 04 Sep 2020 at 23:45

Hi Chris

As you know I have always admired your decision to do it your way, especially when you cannot pin down where to target the treatment. I am pleased that you have accepted RT to the bones as I know from bitter experience it is extremely painful, is it SABR or palliative? Have you contemplated trying HT such as Firmagon which you could come off if it doesn’t suit. Whichever way you decide to go you will always have our support and respect.

Take care

Roy

User
Posted 05 Sep 2020 at 07:51
Hi Chris

You absolutely deserve all the admiration and respect you get from us on this site.

You have been so helpful to so many with your frank and honest and personal thoughts and advice. You have particularly helped me with ED advice and shared your very personal experiences in such an open and honest way. You have made very difficult decisions in a very brave way. Thank you very much for the help you have given me so far. Good luck with the RT for the pain and any future decisions you have to make. I hope you and your family enjoy your holidays.

All the very best for the future.

Cheers

Bill

User
Posted 05 Sep 2020 at 08:00
You've done what's right for you throughout this journey, Chris, and I've no doubt that you'll continue to do so. Was HT not on offer, or did you decide not to go for it?

Best wishes,

Chris

User
Posted 07 Sep 2020 at 21:22
Hi Chris,

How've you been?

You've always been a consistent source of support for many, and a constant source of inspiration for many many years. You have always followed your instincts, and that's always been good for you and your family. What ever you choose to do, I wish you well.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 10 Sep 2020 at 15:06
So been at radiotherapy since 0930 and first treatment at 3.30pm.

Saw consultant who reviewed last scans and said I need 3 separate treatments instead of the one ( already outside my comfort zone ).

High back EBRT 8gy

Low back EBRT 8gy

Possible rib IMRT

Then had plan scans and tattoos ( in the club )

Then back to consultant and told things progressed quite a bit since last scans 6 weeks ago. Been given oromorph and antiemetics for tonight.

Not feeling my best if I’m honest and breathing has been laboured a bit recently. He’s gonna chat with my Onco.

Anyway still the right way to go he feels and this will help me , but I’m feeling things progressing quite rapidly.

Gulp

If life gives you lemons , then make lemonade

User
Posted 10 Sep 2020 at 17:02

Please Chris - take the option of the HT as well as the radiotherapy.

 

V.

User
Posted 10 Sep 2020 at 17:10
Chris

I can only offer you my thoughts and prayers.

You are doing what you can and you have been such a support to me during my journey. I only hope my support to you helps a little.

My best wishes to you.

Paul

User
Posted 10 Sep 2020 at 17:44

Always rooting for you Chris 

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 Sep 2020 at 20:06

My thoughts are with you Chris. Such a difficult time for you and your family. 
Glad that the hospice counsellor was helpful. I think we’ve both mentioned in the past what a help a good understanding counsellor is.

Take care, 

Phil

User
Posted 10 Sep 2020 at 20:17

CJ

Hope the treatment works out. Keep going mate, you have alot of friends on here supporting you.

Thanks Chris

User
Posted 10 Sep 2020 at 20:28

Good luck Chris. Hope this treatment helps. 

Dave

User
Posted 10 Sep 2020 at 23:12

Thinking of you and your family Chris. Hope the RT treatment you are having is helping. 
Good luck xx

User
Posted 11 Sep 2020 at 01:19

What ever is right for you Chris. Only one gulp, I’d be choking with fear.

Leila xx

User
Posted 11 Sep 2020 at 07:27
Hi Chris

I know QoL is important to you and you have made dicisions based on that all along. I can't offer informed advice as I haven't been where you are now and I think if you haven't been there it is difficult to understand completely.

So not advice, just saying what I said before and what I think. Why not try the hormones, always knowing you can stop at any time. It's what I would want any of my friends or family to do, but that's what I think I would want for them looking from the outside and would respect and support their choice either way. Having said that I am of similar mind set to you regarding QoL and you are the one "in the chair" and as always will go with your gut feeling and strong will.

What ever you decide all the very best of luck to you.

Cheers

Bill

User
Posted 11 Sep 2020 at 08:19
Well I got through it all ok but have to say I was on the verge of walking out when it got to 5pm. Been on my own all day and patience was getting thin. I think they dealing with a backlog and also 2 machines broke.

But this is where I kind of get to with quality over quantity In my own little world. A beautiful long hot sunny summer day , and I spent it all in hospital very stressed and worried and anxious. Sat with many many people in various forms levels of ill-health. Beds kept coming from wards with men needing urgent bone treatment to ease the pain , the young man and his wife , him proudly announcing he’d already had HT and Chemo that day then proceeding to vomit in public every 15 minutes into a cardboard hat , his wife batting his ever stroking hand off her thigh as she was trying to read her book ( maybe cos she was frustrated herself ). Some bloke collapsing on the floor his back was so bad.

The tension was mounting and the nearer it got to my turn the more I wanted to be sat in a beer garden with a pint doing my crosswords. That’s me !

Anyway I could feel all burning and tenderness and flare and internal heat which I managed to negate with a bottle of Shiraz before I went to bed. Slept like a baby and woke up fine ( so far ). Thanks everyone for support as ever xx

If life gives you lemons , then make lemonade

User
Posted 11 Sep 2020 at 08:29

Good luck and best wishes Chris. 

Kev

User
Posted 11 Sep 2020 at 09:16
Keep going Chris, keep your chin up lad.
User
Posted 11 Sep 2020 at 10:14

Sounds like a long day Chris. Glad you got through it. A nice bottle of Shiraz sounds wonderful! Take care.

Ido4

User
Posted 11 Sep 2020 at 15:53
Long long day but you hot through it mate. Hopefully a nice weekend ahead for you to try and have a beer or three in a beer garden somewhere 🤞🍺

Take care

Bri

 
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