Chris J's Journey

Chris J's Journey

User

Posted 12 Aug 2015 at 20:52

Chris and El

Our pms have probably covered most of what I could and have said. I am so very shocked and sad that the pathology has come back the way it has. I know this is going to present a whole new set of challenges to you both.

I cannot put myself in your shoes it has taken me a long time to realise only the man himself can be there.

Nothing more I can add right now other than to say there are a whole gang of us here ready to give you any support and help that we can.

Xxx

User

Posted 12 Aug 2015 at 23:06

Chris and El,

I am so sorry that the results have come back this way, you have been so supportive to Stuart and I over the past couple of months and to so many others on here too. I am just so upset for you and want you know that I am here for you.

Much love from us both,

Trish and Stuart

User

Posted 12 Aug 2015 at 23:10

Just to say thinking of you and Elaine Chris.
Best Wishes
SAndra

We can't control the winds - but we can adjust our sails

User

Posted 13 Aug 2015 at 00:32

Hi Chris

At times like this, words are not enough. You have the love of El and your family. I truly hope you can still overcome all that has been thrown at you.

Paul

Stay Calm And Carry On.

User

Posted 13 Aug 2015 at 05:51

My thoughts are with you Chris. Your strength on your journey has been an inspiration to me and others.

Dick

User

Posted 13 Aug 2015 at 07:25

Regarding salvage RT , have any of the brains on here read that it should normally be started before the PSA gets to 1 to be effective , especially where original Gleason and PSA were high and also the doubling velocity was high ( mine was racing pre-op). I think that's why they removed the RT / HT route in the first place. Lots of questions to ask Onco but I hope he is so truthful. I've always been told on here not to rush into any decisions , and would not want unviable treatment that would make me really ill. Sounds silly but I'm not " I'll " at all in any way at the moment
Regards Chris

Edited by member 13 Aug 2015 at 07:27 | Reason: Not specified

User

Posted 13 Aug 2015 at 09:17

Hi Chris

Sorry the stats were not what you were hoping for, I know how that feels mine came back at 0.42 after RP and a rapid doubling time of 6 weeks. They wil want to keep you off of hormones until the choline PET/ CT scan is completed, but then I assume you will be given hormones to reign it back until treatment by RT is being carried out. They will probably want you to be on hormones for a few months prior to being zapped daily for several weeks and continue with the hormones afterwards. If it's any consolation I had spread to both the bladder and the prostate bed and the RT took care of it, but in my case it's now been found in my pelvis so the fight continues for me.

All the best

Roy

User

Posted 13 Aug 2015 at 11:10

Originally Posted by: Online Community Member

Regarding salvage RT , have any of the brains on here read that it should normally be started before the PSA gets to 1 to be effective , especially where original Gleason and PSA were high and also the doubling velocity was high ( mine was racing pre-op). I think that's why they removed the RT / HT route in the first place. Lots of questions to ask Onco but I hope he is so truthful. I've always been told on here not to rush into any decisions , and would not want unviable treatment that would make me really ill. Sounds silly but I'm not " ill " at all in any way at the moment
Regards Chris

I think the onco will want to have scan results and all your data before s/he answers that question Chris - if they offer you curative RT it will be because they believe it might work. I don't think the NHS offers treatments just to make people feel something is being done.

We did have someone else here fairly recently (name escapes me right now but it will come back to me) whose first PSA post-op was in the region of 4 and I am sure they had salvage RT so I don't think there is a set cut off point of 1

A few weeks ago, you thought being diagnosed was the worst thing ever and then you believed having treatment was the worst thing ever. You survived both. You will survive this as well :-)

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

User

Posted 13 Aug 2015 at 12:20

Hi Chris,

Not the news we were all hoping for. Sorry to read about this latest twist. But, I admire the way you are dealing with it.

If you look back to your earlier posts I think you will see how much better you have coped with everything as it has developed when you were so doubtful about your ability to handle your situation to begin with.

I wish you and El well.

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 13 Aug 2015 at 13:21

Thanks for taking time to post everyone. Yes it sucks , but I feel determined to deal with it and be strong for my family. But then those of you who know me know that could all collapse in an instant. But I'll grit my teeth. I have the ' acceptance '. Family holiday tomorrow. It's going to be great. Onco appt 28th so straight back into it when home.

Thank you and wishes to all

Chris

User

Posted 13 Aug 2015 at 14:22

Hey Chris

You know how I feel about your results my friend from our daily texts away from this forum.

You have all our support and you have to soldier on, you've been my inspiration from my diagnosis and now you are my friend.

You be strong but most of all enjoy your holiday tomorrow.

Steve

User

Posted 13 Aug 2015 at 14:45

Ok so tears now - I thought i'd stopped ! I'd forgotten that huge smile mate . Nice to see you post mate

User

Posted 13 Aug 2015 at 15:26

Chris

I am sorry to hear of your news. So far I haven't had to travel the road you are on so I am not qualified to comment on the treatment you will receive. However, even though we do not know each other, I wanted you to know my moral support is behind you all the way.

You may disagree but I can see much positiveness in your posts and you come across as very supportive of others on the forum.

Whatever the future holds I wish you and your wife well. Make the most of your family holiday.

User

Posted 13 Aug 2015 at 16:07

Chris

Time and data usage, particularly on long threads, forces me to leave out most of the surgery posts. However experience tells me when replies come in pretty quickly it's either good results or not so good news. Upshot is I read the histology post. From your other upbeat posts I had a mental picture of you doing and coping well. So of course that post shocked me.

I always try to look for the positive. The one that comes first to mind is there're G9 T4 guys who take the view having the bulk of the tumour removed gives a far better outcome but are refused surgery. Although of course you would rather not be in this position you have achieved that.

From your other upbeat posts I've no doubts you will both pick yourselves up and fight on.

Keep strong and positive

Ray

User

Posted 13 Aug 2015 at 16:50

Hi Chris,

Just read your histology report........not the best news you could have had, and I'm gutted for you.

Your treatment path will now depend on the results of the PET scan together with all the other data available I would think.

I'm way out of my depth when it comes to any medical advice regarding possible treatments etc....so will leave that to the medics and more experienced members of this forum who have a similar diagnosis.

Just want you to know that you and El are in my thoughts, and I know you will find the strength to fight this together in your own way.

Enjoy your forthcoming holiday..

Best Wishes
Luther

User

Posted 13 Aug 2015 at 20:14

Hey Chris

I told you we were all here for you, wow even Raiden has posted, even though I know you two talk regularly.

Raiden I am really pleased you posted I hope you are doing well, you guys all look out for each other and that is so very important.

Have a fantastic holiday Chris and come back focused and ready to take on the next steps. You are doing so well dealing with this in the best way you can.

My very best wishes to you, El and your family

User

Posted 13 Aug 2015 at 22:24

Have great empathy for how you're feeling, Chris!

Felt saddened and dismayed by your post-op results. Am having salvage therapy though, of course, your clinical profile is different from mine.

Do feel free to PM me if you wish at any time.

Have a safe and restful holiday!

Jacey.

User

Posted 13 Aug 2015 at 22:48

Hi Chris,

Having had a few hours to consider your position, and also to look at your previous posts and hopes, and various responses from others, I think I would change the options or advice I have suggested for you now that things are, hmm, interesting, or different.

Whenever any of us starts out on "The Journey" we all have the same range of potential outcomes. Either good or sadly tihs. I am really sorry to read that you did not get the good one mate. When I had my follow up after my op, I determined that IF I was told actually "Dave, it's all gone "pu stit"" ( please read this backwardly) and your time on this earth is limited, I would enjoy whatever time I had left, in whatever way I could and do it to excess. Have you seen Scent of a Woman? If not do so.

Please ignore my suggestions that you should be causes about anything, yanking, tugging, pulling etc. Please just consider enjoying life and fun.

ATB to you and El. You are both so fortunate to have each other, you are blessed. Dealing with any of this parc on your own is hideous. You have each other. Wow, lucky you both.

really seriously, a heartfelt atb to you both

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 13 Aug 2015 at 23:17

Hi Chris,

You certainly have had a rough few months and those results must have been a blow. As others have said you have been so strong so far and I hope you remain as stoic and move onto the next phase of the treatment and hopefully beat this.

Enjoy your holiday and I wish you all the best for the battle ahead.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 25 Aug 2015 at 19:44

Hello all
Purely an info post. Home from hol and was supposed to see Onco tomorrow Weds. But had Oxford Churchill Hosp fone today asking for Choline PET-CT this Thurs. I obviously questioned this arrangement so now scan Thurs and Onco at Southampton next Weds 2nd. Gosh the waiting ( especially thru our holiday ) is killing us.
Good news is the scan is at 3.15pm and won't finish till 6pm , so I've booked the Premier Inn for steak and wine overnight. It actually makes sense as they said to stay away from my 5 yr old son for a good time ( honest Gov'ner).
So all will become clear next Weds for good or bad., and an action plan to follow
Many thanx and hopes and wishes on your journeys
Chris and El x

User

Posted 25 Aug 2015 at 20:34

Good luck on Thursday Chris and enjoy night away fro the little one!!

User

Posted 25 Aug 2015 at 20:49

And hopes and good wishes on your journey too Chris.
Good luck and all the best to you and El
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 25 Aug 2015 at 21:08

God luck for those dates Chris. Hope you all had a good holiday?

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 25 Aug 2015 at 21:34

Hope you had a good holiday.

Wishing you all the best with your forthcoming appointments.

User

Posted 25 Aug 2015 at 21:40

Good luck Chris

User

Posted 25 Aug 2015 at 22:34

Good luck, Chris

Arthur

User

Posted 25 Aug 2015 at 22:58

So pleased to see that you have been offered the PET scan - usually, we are reading about people having to fight to get one. Give the little'un extra cuddles tomorrow x

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

User

Posted 26 Aug 2015 at 09:29

Best wishes Chris. Hope the holiday went well. Good luck with the treatment.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 27 Aug 2015 at 11:19

Argggh
That's right just cancel my scan at 9am just before I set off . Now ive got to try to get my money back off Premier Inn although I did their non-returnable saver booking . And now cancel Onco next Wednesday again etc etc. And all the while the PCa is festering away inside of me
Apparently the Choline radioactive isotope is really hard to make and last nights production failed . So I suppose they have a good reason and were very apologetic
Stress overload

User

Posted 27 Aug 2015 at 13:28

Well good reason or not, it doesn't help you does it.

Sorry for your extra stress Chris. Hopefully Premier inn will be generous, if you write and explain.

We can't control the winds - but we can adjust our sails

User

Posted 27 Aug 2015 at 14:44

Nightmare so annoying, I feel for you as more waiting.....

User

Posted 27 Aug 2015 at 19:05

Hi Chris,

That's really frustrating. I'm so sorry this happened, not what you wanted at this time or anytime.

I do hope they can rearrange fairly soon for you.

You've had a lot to cope with, you deserve some better luck.

Steve

User

Posted 03 Sep 2015 at 14:02

Argggh
So this week I check at 12pm exactly whether the scan is still on. And it is on !! Great .
Fifty miles up the A34 Oxford Churchill phone me and tell me its off again . WTF . Really
Now to try and cancel Premier Inn again . Probably not so lucky this time
Very very stressed.

User

Posted 03 Sep 2015 at 20:06

That is shocking Chris

Get your medical team at home onto this. To cancel once was bad but twice given your known BP issues and concerns over your PSA is outrageous.

I really am so sorry

User

Posted 03 Sep 2015 at 20:14

Thanx Mo. I actually don't have time to be Bipolar anymore! I called my specialist nurse en route home and actually got to speak to my surgeon. He really tried to reassure me all was not lost yet and if anything the extra wait may give them a better scan which will guide my salvage better. I can't be furious as my treatment has been amazing thusfar. I've got big bladder pain all the time which is terrifying me and he said to check for infection. I did that as soon as I got home. The nurse said I was clear but is sending it to lab for full test.
Worried !!
Premier Inn have been amazing but said it was my last refund. God bless them
Chris

User

Posted 03 Sep 2015 at 21:25

Grrrrrr.....I don't think I'd be as calm as you sound right now if it was me....so well done that man...

User

Posted 03 Sep 2015 at 22:08

It would have turned me into an angry young, sorry, old man. Hope it all works out in the end.

Paul

Stay Calm And Carry On.

User

Posted 03 Sep 2015 at 22:15

Hey Chris,

I live about 26 miles and, according to Google maps, 38 minutes from the Churchill. Next time you are due to go there, and need a rom, let me know, I may be able to offer you a bed overnight, either before it your appointment if it is early morning, or for the evening if it is later in the day?

Not promising as I am away a lot, but it may work out okay?

Nice of Premier Inn to do the decent thing by you though.

atb

dave

Edited by member 03 Sep 2015 at 22:18 | Reason: Not specified

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 03 Sep 2015 at 22:25

Dave
Many thanks ! This time the hospital were so late telling me that I wouldn't normally have got my money back anyway even if I'd booked the safe way. So next week it is either do it all in a day ( not that bad but didn't want to irradiate my son ) , or risk booking the room on the hour , or turning up at yours with a Chinese and wine

User

Posted 03 Sep 2015 at 23:53

Not you too Chris, at least Steve's trip only cost £10 return on the train which the hospital have now offered to refund!

We've got everything crossed for you.

Maureen & Steve x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 04 Sep 2015 at 10:28

Thanks Maureen and best wishes to you and Steve too !!
I also have had a very official apology today from the Radiology Dept manager ( I think my surgeon had a wobbly at them ).
They have rebooked me for next Thurs 10th and have insisted if ANYTHING goes wrong they will fully reimburse me . They say it is genuinely a dye supply problem and they are kind of powerless to prevent it happening. Im not mad at anyone , just the constant waiting , not sleeping , and then not happening !
All the best to everyone
Chris

User

Posted 04 Sep 2015 at 10:33

Hey Chris,

Really sorry to read about the cancellations - Unbelievable !

As I was writing this , your latest post arrived.

Thank God, you have a date and a deserved apology.

We know you'll hang on in there Steve,

All the very best,

Cobbles

User

Posted 04 Sep 2015 at 10:34

Chris, I am around Monday and Tuesday next week, away about 9am Wednesday, so you can use either of those 2 nights if it suits your needs?

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 04 Sep 2015 at 11:34

Good luck on Thursday Chris.

At least you have the overnight accommodation sorted this time!!

We can't control the winds - but we can adjust our sails

User

Posted 04 Sep 2015 at 14:08

Hi Chris,

Hope it all works out ok for next Thursday. It's very frustrating when you're waiting for something to happen.

Best of Luck,

Steve

User

Posted 04 Sep 2015 at 15:56

Chris

I guess when it comes down to specialist radioactive dye and the like then they cannot take any sub standard products! I know they are made specially and have to be used within a specific timeframe. It doesn't make you any less frustrated but at least it is a good reason for the cancellation at such short notice. I love your comment that you are too busy to be bipolar, just brilliant!

I will be thinking of you next Thursday although I probably won't be able to access the forum to see any posts until the following week.

I keep my fingers and other extremities crossed in the hopes that this will be 3rd time lucky for you.

all my best wishes to you and your family

User

Posted 04 Sep 2015 at 22:45

Here's to a hitch free week next week Chris, and a feeling of de ja vu!

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 10 Sep 2015 at 18:49

Hello all
Thanks Maureen for your lucky mojo -- we've both succeeded this week ! Third time lucky I today had Choline PET-CT scan at Oxford Churchill NHS. I had to come on my own as El was taking her son to Portsmouth university where he will be for 3 yrs. I said I'd be fine on my own ....
It went like clockwork tbh. I sat in my private booth having been injected , and instead of doing my puzzles / reading the paper , found myself sitting back for an hour and reflecting on my past life , pondering on my present life , and predicting my future life ! An hour rolled by quickly and the scan lasted exactly 45 minutes. Only the air-con could be heard. No music this time. I admit to a few tears rolling down my cheeks just wondering why and how my life has come to this !
Anyway I'm at a Premier Inn now fed and continuing the watering , not being allowed to be near Peter for 8 hrs. Glad of the peace yet wanting to be near them all. Oncologist next Wednesday 16th. Trying not to be negative but I have a good idea where life is going. But we will make the most of it.
Best wishes on your journeys
Chris

User

Posted 10 Sep 2015 at 19:54

Glad that's over for you Chris.

Peter will just get bigger hugs that's all (and perhaps a little pressie?)

Quiet reflection comes to us all at some stage. Mine is usually in the middle of the night and stops me sleeping. I honestly cannot remember the last time I had a nights uninterupted sleep.

When you've had major, very major stuff happen in your life like you have it's bound to creep up on you when there are no distractions.

The key is whether you can view those changes, accept them and then move on with the next stage of your life
(Which you surely will)

Edited by member 10 Sep 2015 at 19:56 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 10 Sep 2015 at 19:59

Third Time Lucky - Brilliant news Chris. Glad that's all over.

I'll be thinking of you for next week Chris. It'll be the day after my op but I'll be tuning in.

Take Care Mate,

Cobbles

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