Chris J's Journey

User

Posted 04 Feb 2019 at 07:08

Hope you get the result you want Wednesday Chris, i dont post on your thread often but am always rooting for you.

my sports massage guy who is also a mindfulness coach shared this poem with me and it has helped me enourmously at times (and i never read poetry usually). i would go as far to say that most people on this forum could benefit from these words at some stage or other. dont read it about not caring for others plights but more about enjoying today without worrying about tomorrow (apologies if you disagree):-

Beyond the bend in the road
There may be a well, and there may be a castle,
And there may be just more road.
I don’t know and don’t ask.
As long as I’m on the road that’s before the bend
I look only at the road before the bend,
Because the road before the bend is all I can see.
It would do me no good to look anywhere else
Or at what I can’t see.
Let’s pay attention only to where we are.
There’s only enough beauty in being here and not somewhere else.
If there are people beyond the bend in the road,
Let them worry about what’s beyond the bend in the road.
That, for them, is the road.
If we’re to arrive there, when we arrive there we’ll know.
For now we know only that we’re not there.
Here there’s just the road before the bend, and before the bend
There’s the road without any bend.

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 Feb 2019 at 07:39

What a wonderfuk poem, Irun

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Feb 2019 at 07:47

Good luck and my very best wishes Chris

Regards

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 04 Feb 2019 at 08:12

Thinking of you ,hope all goes well on Wednesday .

Thankyou Irun for the poem .

Best wishes

Debby

User

Posted 04 Feb 2019 at 12:05

Thanks all and Kevin for the poem. Feel much calmer about it all now strangely. What will be will be. Step by step , no point catastrophising I guess.

User

Posted 04 Feb 2019 at 12:57

Chris you are a very inspirational man, so helpful and encouraging. We are newbies on here but have read your posts extensively and feel like we know you. Sending good thoughts your way.

User

Posted 05 Feb 2019 at 04:26

Chris, I am sending good wishes too, and echoing what everyone else has said. You'll have the whole forum behind you at the appointment!

I haven't commented much on the forum, but your posts have taught me such a lot. I just wish I had read them soon after H was diagnosed - I might have understood what he was going through better than I did.

User

Posted 05 Feb 2019 at 08:45

Hi Chris,

I'm sending you the very best of wishes for Wednesday, I will be thinking about you.

I've only been a member here for a few months, but you have helped me in many ways after reading through your posts.

Good luck

Michaela xx

Edited by member 05 Feb 2019 at 08:46 | Reason: Not specified

User

Posted 05 Feb 2019 at 11:30

Good luck tomorrow - thanks again for the tips that have saved my sexlife!

User

Posted 06 Feb 2019 at 12:37

Scores on doors :

Bone scan clear , just wear and tear for my age !

CT scan : Prostate bed area clear. Kidney Ureta slightly thickened. Needs an eye keeping on it. Two lymph nodes back of abdomen prominent but essentially just in normal range. He believes this is where cancer and psa is being generated.

Again offered Radiotherapy to a wide area. His words ‘ potentially curative but probable relapse ‘ ! He wouldn’t be aiming at the lymph nodes. I rejected again !

So just a case of when Hormone and Chemotherapy need to start. Further CT in four months and not bothering with psa as it’s only going up at the moment. Probable treatment start then just before summer :-((

Was introduced to an advanced prostate cancer key-worker today which was significant I think. She was really nice and tried to reassure about treatment.

It’s important to remember in my personal case that my Onco is treating my individuality as well as my cancer so if his plan seems weird it is being driven by myself also.

Thank you all so much for kind positive and helpful comments.

User

Posted 06 Feb 2019 at 12:41

The allocation of an advanced prostate cancer key worker sounds significant Chris.

You are still an enigma with the PSA number and not a huge amount showing up in scans.

Enjoy the time before the possible start of HT. (or not!)

Take care,

Ian

Ido4

User

Posted 06 Feb 2019 at 12:56

Blimey you are an enigma. Will you start treatment if the scans are clear in 4 months Chris

Bri

User

Posted 06 Feb 2019 at 12:57

Sounds as if the news was as good as might have been hoped for, Chris. Personally (and I know we're all different) I'd get on the HT as soon as possible; side-effects from it in my case have been minimal (basically dry orgasms, which are no big deal).

Chris

User

Posted 06 Feb 2019 at 13:03

Sounds like the news was better than expected? carry on carrying on Chris, well done.

Michaela

User

Posted 06 Feb 2019 at 14:02

I made it clear Bri that I’ll be putting off starting HT for as long as possible. If the scans are ‘ normal ‘ again then no I won’t ! And I think he may be bound until he sees a sure distant met before he can offer HT etc. I guess it’s because I’m refusing the NICE next step of RT.

Chris I think you are on Bicalutamide which isn’t the same as Castration HT at all. I had that for a year and was still at it all the time. Injectable HT can knock your desire flat in a week !

User

Posted 06 Feb 2019 at 14:09

So would the wide area radiotherapy include the suspect nodes and the ureta??

What you have sounds like oligometastatic cancer to me? Did your consultant consider this? Or the conclusions of this article?:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5083765/

Edited by member 06 Feb 2019 at 14:16 | Reason: Can't type

User

Posted 06 Feb 2019 at 14:36

Time to make lemonade brother. wishing you well in your decision making process.

bazza

User

Posted 06 Feb 2019 at 14:39

I the RT wouldn’t cover that. I asked !! As he said he just needs clear abnormal scan. Then we will move on. I reckon I’ll take the HT but not Chemo. I doubt my liver would cope lol

User

Posted 06 Feb 2019 at 17:28

Originally Posted by: Online Community Member

I reckon I’ll take the HT but not Chemo.

Interesting - Stan took the opposite view and agreed to chemo but refused HT.

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

User

Posted 06 Feb 2019 at 18:02

Yeh it’s a fair point Lyn!! Short shock and all that. Will see what’s on offer when needs must. Just trying to figure whether to holiday next four months whilst I can , or stay at work which maintains my sanity , or go on an epic bender ......... :-))

It’s all beginning to sink in a bit. No getting off the rollercoaster for sure but four months grace at least. I think he’s quite certain what is happening as he only wants a CT then. Not another bone scan nor psa !

User

Posted 07 Feb 2019 at 12:28

Would they / you consider having those 2 nodes surgically removed??

User

Posted 07 Feb 2019 at 13:24

Thanks yes I will ask that too next visit. Some Oncos go for cure with a few small Mets by Cyberknife etc instead of systemic treatment. It’s amazing how you forget these things when sat in there.

User

Posted 07 Feb 2019 at 15:54

Isn't life complicated, you are an inspiration to many of us on here, best wishes with whichever route you take.Not sure the bender is sensible.

Thanks Chris

User

Posted 16 Feb 2019 at 08:47

So , after an awful week where I’ve woken near-shaking everyday and needing a Diazepam to get going things became even stranger ! Even though we decided on four months I had a call from PET-CT. It seems I’m still part of an MDT meeting and my original Uro surgeon has decided he wants to give me a Choline-PET for free , without discussing with Oncology !! So it sets me off even more , especially as I’ve just spent nearly £4 k on a cruise mid - May. As mentioned in other posts any form of insurance in this world is in my opinion Legalised Fraud , and if I have this scan and the results in the next few weeks ( which are likely to be concerning ) then I’ll be lucky to recover even half the cost. After getting hold of Onco nurse it seems our original plan is still ok so I’m going with a lovely holiday and then back on the rollercoaster, rather than more sh**t news and a general shafting from an insurance company.

And I’ve got a PET scan in the bag :-))

User

Posted 16 Feb 2019 at 09:04

Why would having a scan stop you from going on your cruise, Chris?

Cheers,

Chris

User

Posted 16 Feb 2019 at 09:27

Lol , best I don’t say , the robbers even check your social media these days .......

All joking aside I guess I could get a diagnosis which would change the whole insurance deal maybe. And they’d prob want an admin charge to change it. I’ve realized I haven’t reached acceptance and am not dealing with this too well. I’ll deal with it in four months ......

User

Posted 16 Feb 2019 at 13:24

Sorry you’re feeling like that Chris. We are all here to support you. The cruise sounds amazing.

Have you had a PET scan previously?

Ido4

User

Posted 16 Feb 2019 at 13:50

Thankyou. Yes I’ve had 2 PETS , 1 Choline and 1 PSMA. Both with psa of 3. Both clear. They offering Choline again. I think I’ll ask for it just before cruise and then I see Onco directly on return. It seems if I don’t have pelvic RT then they not interested in treating individual tumors which may be my pathway. Bone scan still clear at psa 82

Edited by member 16 Feb 2019 at 13:59 | Reason: Not specified

User

Posted 16 Feb 2019 at 16:16

I thought you had, just couldn’t remember.

Hope you can sort things so you can get away on the cruise and enjoy it.

I also hope that you can get an improvement in how you feel overall, that's not easy I know.

Ian

Ido4

User

Posted 16 Feb 2019 at 16:48

Where are you cruising to and on which ship? Not the Antarctic like Ulsterman?

Bon voyage!

Cheers, John.

User

Posted 16 Feb 2019 at 17:44

Lol , just the Canaries with Royal Caribbean.

User

Posted 16 Feb 2019 at 21:45

Chris,

Choline and PSMA have not revealed anything for you previously but result in some toxicity so you could consider whether something else might be preferable. The C11- Acetate (not C 11 Choline) scan seems to have had done well in comparative tests. It works on fatty acids rather than sugar or gallium. Unfortunately, I can't see reference to it in the UK and it seems more used in the USA but possibly available in other countries too. This is a video on scan comparisons but is rather long.

https://www.youtube.com/watch?v=W45WA-_q-EY

Have a great cruise!

Edited by member 16 Feb 2019 at 22:10 | Reason: To hightight link

Barry

User

Posted 16 Feb 2019 at 22:11

Thanks Barry

I don’t know about toxicity, but I do know I’m walking like an 80 yr old these days despite not yet 52. Not sure of the cause but constant constant crippling pain is a killer morally and physically. I couldn’t run if a cow ran at me , which is an actual worry where we live tbh. Really struggling to keep positive although I realise I’m in a far better state than some poor people.

User

Posted 17 Feb 2019 at 23:17

evening Chris,

after all that you have been through, you are still going strong. thank the GL.

if you fancy meeting up for a beer in that Soton you live in, shout mate?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 29 May 2019 at 10:23

This website is still so appalling it’s taken me 10 minutes to search for my own thread haha. And I can’t update my profile despite 6 attempts.

And i involved myself in a 2 hr phone call researching people with T4 disease, and was given a £30 gift voucher , only to find that someone had already spent it in Leeds ( LYN :-)) ) and I’ve not been offered another one. Bless PCUK

Scores on doors. Rescans taken just before cruise are now showing completely clear / normal. I’ve not had my psa checked in a year as it’s just going up. He says my cancer is still simply too small to see. He offered RT again and then I’d get a PET scan thrown in. I frowned , he smiled. I’d already made my mind up I wasn’t going to accept HT if offered as I’m feeling utterly chipper.

So I’ve still got this G9T4 N1 monster inside me and it will catch up with me but I’ve been given another six months freedom before repeat CT and bone scans which suits me down to the ground. I was Utterly expecting the worst today only to walk away grinning like a Cheshire Cat. Celebrating tonight with a glass of wine or seven

Wishes to everyone fighting this , man and woman

User

Posted 29 May 2019 at 10:36

Oh Chris that is fantastic news! I can imagine how relieved you are!! Here’s to many many more results like that one today. Enjoy your wine 🍷 x

User

Posted 29 May 2019 at 10:38

Excellent news, Chris! Your cruise must be coming up soon, isn't it? Hope you have a relaxing and enjoyable holiday.

Very best wishes,

Chris

User

Posted 29 May 2019 at 11:12

Great news .

Debby

User

Posted 29 May 2019 at 12:05

Good news but perplexing, I guess? Glad you had a good holiday.

Scroll to the top of the thread and click on 'follow this conversation' - then when you want to find it, sign in and go to your profile where you will see 'my conversations'

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

User

Posted 29 May 2019 at 13:54

Your an enigma Chris.

keep it up

Roy

User

Posted 29 May 2019 at 13:59

Chris, I'm happy for you!

Flexi

User

Posted 29 May 2019 at 16:21

So pleased you have another 6 months with no treatment Chris. You are definitely an enigma! All the best.

Ido4

User

Posted 29 May 2019 at 16:39

Good news Chris, long may it continue.

All the best

Cheers

Bill

User

Posted 29 May 2019 at 16:55

Pleased to hear it is good news, if you could edit your profile you could add a link to your conversation.

Thanks Chris

User

Posted 29 May 2019 at 21:08

Well cheers Chris, here's to you!! Several glasses raised!! :-))

User

Posted 29 May 2019 at 21:21

Wow brilliant. Enjoy the vino 👍👍

Bri

User

Posted 29 May 2019 at 21:25

Happy days Chris,

Very pleased for you both.

Enjoy.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 29 May 2019 at 21:26

All seems to be going pretty well for you.

I trust you we're able to enjoy your cruise - you should book your next one soon as you can.

The HT isn't so bad, I've been on it now for 4.5 years but I would prefer not to be on and I'm in awe of your courage.

Keep on going with you instincts I'm convinced it's the best overall.

Paul

User

Posted 29 May 2019 at 23:21

Great stuff - better buy a new ring sounds like you are gonna be wearing it out!!

User

Posted 30 May 2019 at 09:18

What fantastic news!

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