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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 racing in the Sahara April 2018

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.

If life gives you lemons , then make lemonade
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.

If life gives you lemons , then make lemonade
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

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 !

If life gives you lemons , then make lemonade
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

Nine years since DX.


I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.

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

If life gives you lemons , then make lemonade
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 !

If life gives you lemons , then make lemonade
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.

If life gives you lemons , then make lemonade
User
Posted 07 Feb 2019 at 15:54

CJ


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 :-))

If life gives you lemons , then make lemonade
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 ......

If life gives you lemons , then make lemonade
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?


 

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


If life gives you lemons , then make lemonade
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


 

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.

If life gives you lemons , then make lemonade
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.

If life gives you lemons , then make lemonade
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
Do all you can to help yourself, then make the best of your time. :-)
 
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