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Chris J's Journey

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User
Posted 30 Mar 2017 at 11:19

Hi Chris

All the very best

Gordon

 

User
Posted 30 Mar 2017 at 14:15

Hi Chris,

Onwards to this scan and hopefully an answer. Make sure you get the scan on a CD! I would probably want more than one set of eyes on that scan .. just a thought but we have found if we don't ask for copies of everything they are not automatically offered..

Keep pioneering!

Regards

Clare

User
Posted 18 Apr 2017 at 18:19

Travelled from Southampton to London yesterday £47 return. Stayed the night in hotel £75. Met relatives which was nice. Walked from Euston to Buckingham Palace in the sun which was lovely , and then received the call that my UCLH scan had been cancelled. Walked to hospital and had a mini meltdown involving manager and tissues and a full waiting room. They have reimbursed me and traveling again this Friday for scan Saturday. To be fair it was the same at Oxford. These radioactive tracers are immensely hard to produce and get the timing right etc.
I have to say I am immensely distressed after months of waiting. Very wearing mentally all this :-((

User
Posted 18 Apr 2017 at 18:30

Sorry for you but at least you had a nice walk to Buckingham.

Don't get into despair.
Lola

User
Posted 18 Apr 2017 at 18:31

Oh what a pain Chris. So sorry that you had a wasted journey - I can well imagine the stress levels.

All bits crossed that the new appointment goes to plan.

E

x

PS And congratulations on your zen determination to appreciate the relatives and the sunshine! An impressive glass half full view of a broken polystyrene beaker under the circumstances.

User
Posted 18 Apr 2017 at 18:39
I'm glad that you you had a lovely walk in the sunshine and a positive meet with your relatives but can only imagine how receiving that phone call must have felt.

Fingers crossed that everything goes well on Saturday for you. Hang in there.

Kind regards,

Kevan

User
Posted 18 Apr 2017 at 19:08

Sorry to hear that Chris.. mini melt down sounds completely like the only way to go in those circumstances.. fingers crossed for the new plan. Definitely a good week to make lemonade. Clare x

User
Posted 18 Apr 2017 at 19:55

Oh no. I can totally imagine how the cancellation went down having seen OH crumple when we arrived at the hospital one time to find they had forgotten to put him on the list.
So glad you don't have long to wait for the rescheduled scan.
Stay strong and wishing you the best for Saturday.

User
Posted 18 Apr 2017 at 19:59

Thanks guys. I got the call as I was slowly ambling back from the palace. It turned into a power-walk with rucksack on and I was fuming.
Funnier still , when I got there I got in a lift which only served floors ground to 3. So I got in another lift which only served floors 6 to 12. I needed floor 5 for Nuclear medicine. So I'd walked to the palace and back ( six miles ) and then stomped up 10 flights of stairs. No wonder I had a wobble. The NHS staff were wonderful as ever. It wasn't their fault as the tracer is externally produced.

User
Posted 18 Apr 2017 at 23:17
Wow Chris I think you held it together magnificently after the build up , the walk and the stairs plus the lift issues ( I am not the best passenger in a lift ) I am that person that panicks and hits every button except the right one and that is just going one floor . So if you ever get trapped in a lift with a slightly bonkers lady wearing a blue dress that's me🤗.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 19 Apr 2017 at 03:28

Hi Chris,

So sorry you've had all this trouble, it's really frustrating.  I hope it finally gets sorted on Saturday.

You've been through enough.

Take care.

Steve

User
Posted 19 Apr 2017 at 07:02

Sad and annoyed for you Chris and glad that your mini meltdown produced results in an appointment for this Saturday.

It's a shame that you had to reach that stage in the first place though.
It's all very wearing on the body and mind.

I know what you mean about the staff at UCLH. Grandson was on the Teenage Cancer trust ward there and the staff cannot be faulted.

Fingers crossed for Saturday for you

We can't control the winds - but we can adjust our sails
User
Posted 19 Apr 2017 at 10:57

Oh dear. But on the up side CJ, look how far you have come in the short time we have known you. A year ago, this would have been devastating and would likely have pushed you over the edge; instead, you had a wobble and then got yourself upright again.

Progress on the emotional side, if not on the nuclear scanning side :-/

Keep being strong, my friend, you are doing great x

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

User
Posted 19 Apr 2017 at 18:31

Chris

Frustrating, to say the least, but you're a fighter. If anything is going to get the cure/long term control it's that positive attitude you have of not giving in.

Hope all goes well Saturday.

Ray

User
Posted 19 Apr 2017 at 22:18

Chris,

You have dealt with so much, so well. You continue to amaze me wth your resilience and fortitude. Keep at it young man.

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 20 Apr 2017 at 14:15

Scan just cancelled again after rebooking a train and hotel already. No future date given either. Production issues apparently. So whilst I'm not in any pain I have this cancer still growing with psa at 3 with zero treatment at present nor HT etc etc. I'm shortly due to give up ........

User
Posted 20 Apr 2017 at 14:28

Oh my god! There isn't anything you can do? Complain, report against medicals responsible for it...
So sorry! Hope you can soon get the appointment and treatment.
Lola.

User
Posted 20 Apr 2017 at 14:37

The down side of opting for something which is still niche rather than widely available, I guess :-(

Don't give up, it will happen at some point and if you get very anxious about it you can fall back on repeating the choline scan instead.

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

User
Posted 20 Apr 2017 at 15:10

Aargh. I desperately hope they can reschedule for you soon. Or as Lyn suggests you can opt for plan B.

User
Posted 20 Apr 2017 at 15:54
Hi Chris

.. thinking of you and reading posts. Wish I could help.

Gordon

 
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