Chris J's Journey

User

Posted 04 Sep 2015 at 09:28

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

If life gives you lemons , then make lemonade

User

Posted 04 Sep 2015 at 09:33

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 09:34

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

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

User

Posted 04 Sep 2015 at 10:34

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 13:08

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 14:56

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 21:45

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 17:49

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

If life gives you lemons , then make lemonade

User

Posted 10 Sep 2015 at 18:54

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 18:56 | Reason: Not specified

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

User

Posted 10 Sep 2015 at 18:59

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

User

Posted 10 Sep 2015 at 19:00

Great to hear Chris that they finally got the scan sorted. Hope they'll point to something positive (and they don't get lost in the process!)

Flexi

User

Posted 10 Sep 2015 at 21:44

Chris at last! Glad it all went to plan and nothing wrong with reflecting on life it's all part of the process. Hope you enjoyed you're few beers and when you get home tomorrow hug everyone tight.

Xxx

User

Posted 10 Sep 2015 at 21:47

Great stuff Chris

All the best, Arthur

User

Posted 10 Sep 2015 at 21:55

Hi Chris

So pleased that it actually happened for you this week, and well done for going it alone. I'm sure we've all done some thought provoking reflecting at sometime but it often brings back the good times too!

Have a beer for Steve, he has to be tea total whilst he's having radiotherapy, apparently it's not much fun ordering a glass of squash in a pub (not allowed anything fizzy either).

Before you know it you'll be back with the family tomorrow, make sure you have a great weekend :-)

All the best to you and El

Maureen & Steve x

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

User

Posted 11 Sep 2015 at 02:35

Hi Chris,

Really pleased you finally had the scan and hoping that everything is ok when you get the results.

I don't think you can help but have the thoughts that you had. I certainly did and they helped me assess what was important in my life. Sometimes life passes us by because we're too busy trying to cope with work and paying the bills. You suddenly get the thought "where did it all go". Having difficult times make you appreciate the good times even more. Every moment I spend with my grandson is precious to me. I sometimes feel guilty because I wonder if I felt quite like this when our children were small. I think I feel this way now because I don't take "being here" for granted. Life can so easily be taken away. If there can be a positive side to being diagnosed with cancer (or having a heart attack) it's the realisation of that simple truth.

Try not to get too stressed waiting for the results (easier said than done, I know).

Take care.

Steve

User

Posted 11 Sep 2015 at 07:26

Originally Posted by: Online Community Member

Have a beer for Steve, he has to be tea total whilst he's having radiotherapy, apparently it's not much fun ordering a glass of squash in a pub (not allowed anything fizzy either

WHAT. you're kidding me on !!As if it's not bad enough already. I guess RT is out then for me haha. Don't be surprised if Steve has to " work extra hours " quite a few nights over the next 5 wks. Poor fella

Hope it continues to go well for him x

If life gives you lemons , then make lemonade

User

Posted 16 Sep 2015 at 18:33

Hello Folks
First Oncology visit today -- not entirely happy with outcome !
Thankfully the PET scan was clear and he explained I was very lucky to get one. The reason they gave it me was because my post-op PSA was so high and climbing that they suspected a spread. The PET only finds tumours / cancers greater than 7mm in diameter. They re-took my PSA today to see if it was high enough for the scan to have been accurate. Result tomorrow. He still believes what was left after the op shouldn't be enough to give that PSA and climb rate. He believes " something " is secreting that PSA.
Re the pain in my bladder and stomach , he took that very seriously and another MRI scan to be done ASAP.
Treatment plan is 6 months HT starting today ( Bicalutamide 150mg / Tamoxifen 20mg )
After Christmas 6 1/2 weeks RT
There were no " Trials " , Chemo , alternative HT routes etc to follow he said . With my post-op results they wouldn't have given me RT if it was 10 yrs ago .

Just as things were cheering up on the ED front , I was told half of the drugs cannot be taken with Bicalutamide as very dangerous -- Viagra , Cialis , Spedra. However Levitra and Caverject should be ok. The new pump is fantastic.

Elaine and I are dazed and confused but just getting on with it. What else can we do seriously ?? The Onco admitted at the end of the day they weren't sure what was happening , wouldn't estimate life expectancy obviously etc. I have to try to get through winter with my Bipolar which is always hard , but the thought of RT daunts me and there is no way i'm not having a drink for 6 weeks for any disease .
Chris

Edited by member 16 Sep 2015 at 19:18 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 16 Sep 2015 at 22:25

Hi Chris,

I haven't been posting or replying very much (I just needed the break) but I have been reading and your struggles are touching me ,sometimes I do think to be given a diagnosis and I know how hard you struggled with the op of maybe a cure is sometimes harder than where we are.

So Bottoms up my friend enjoy a glass or two . Thinking of you and Elaine.

BFN

Julie

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 Sep 2015 at 07:14

Hello . Very very quiet on the forum all day yesterday . I've been awoken today with a text telling me my PSA yesterday was 2.4 .
So post-op 6 week was 1.5 8 week 1.8 12 week 2.4 ( so the PET scan was a bit too early at maybe 2.2 )
So probably a doubling time of 8 weeks at the moment . As we discussed with Onco this doesn't seem likely to be what was left in the prostate bed generating so much . There is something out there ........... ( or rather in )

I'd be really grateful for any advice or input or opinions from the people on here . Would a second opinion be worth it maybe ?
Best wishes Chris

Edited by member 17 Sep 2015 at 10:51 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 17 Sep 2015 at 11:07

Hello Chris.
I've been quiet(er) too as we lost the router on Friday and didn't get the new one till yesterday when I could get back online. Got a new phone too which wasn't much help with the logging on and when I did try to reply it came out as if I'd never been to school!!

Anyway, not much I can say really as far as advice is concerned but just wanted to let you know that I do think of you often (and all you men that struggle with difficult diagnosies ).

A second opinion can't be a bad thing though can it? At least you will know that you've been proactive and then can perhaps accept the diagnosis and the treatments that go with it.

Good luck and best wishes to both of you

Sandra

Edited by member 17 Sep 2015 at 17:29 | Reason: Not specified

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

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