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Simon Story Chapter 2

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User
Posted 02 Nov 2014 at 09:59

This small area the docs couldn't identify; could it have been your brain? My mum used to say that most men's brains are in their trousers but I don't think it has ever been proven until now!

I know you went out dementing for Halloween .... perhaps it was someone's soul they could see?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 Nov 2014 at 12:07

You're doing fantastic Si.

As Mo says, look back at the way things were, and here you are now, 'Superman Si'.

It's obvious you had Dr Mute and Dr Stonewall flabbergasted.Too much for them to take in mate.

And Lyn, your trousers comment was wickedly funny. I spluttered tea over my keyboard!


Stay well Si,


See you in London,


George

B2PCa
User
Posted 02 Nov 2014 at 19:24
Well Si,
The bloods are telling a good story and that's somethign we are all grateful for. Think of you and Neas often and hope this is what Lyn suggests .....lol

Any chance of talking to Jamie beforehand?

Lots of love
Allison
User
Posted 03 Nov 2014 at 19:27

Si,

You keep going sunshine. Keep at it. You are a real inspiration/wussy. :-)

When might we meet for you to drink me under the table again? Is anything palnned?

dave

User
Posted 03 Nov 2014 at 21:57

Hi Si,


Really good news on the bloods I am sure when Jamie gets back he will make sense of the scans. There is nothing worse than DRs that don't give you answers.


Do you think you may have accidently swallowed your cape.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Nov 2014 at 23:33

Brilliant Julie x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 Nov 2014 at 07:34

Si, stay optimistic mate. I am sure you are still doing well and your scores look pretty good. Thinking of you as I settle down for another night in New Zealand.

User
Posted 04 Nov 2014 at 07:38

Hi Si and Ness


Im not sure what to say really, So this is just to say thinking of you all and hope to see you soon xxxx

User
Posted 04 Nov 2014 at 09:07
Ha Ha Julie either that or he pulled something flying supersonic (again) I did tell him to play nice with the witches on the broomsticks at Halloween but he just has to strut his stuff ...supermen what can you tell them...?
Dave I think plans are being put together for a meet either just before Christmas or very soon after it will let you know, Paul is gadding about somehwere lush (working in New Zealand) until mid December I think.
xx
Mo
User
Posted 05 Nov 2014 at 21:47

Hi Si


You kindly responded to my first post 2 days ago privately but as a new member apparently I am not allowed to respond that way until I have bored everyone a few times with my woes on open forum!


I have just spent an hour reading your full story, there is hope for everyone.


Clearly with my results (MRI/Biopsy/Bone scan) all to be presented to me tomorrow I have no idea what they will actually mean  but with my initial PSA at 342 and me seeing my bone scan light up like 5th Nov sky over all my hips and pelvis as the scanner went over me my dodgy self diagnosis says it wont be a watchful waiting outcome!


The message I got from your story (apart from how you have just got on with it) is what a difference each consultant can mean. I am lucky enough to have private healthcare and whilst I have been NHS to date at Epsom (although perhaps I should have asked for the Marsden as it is only 5 miles away, they are supposed to be the best around London?) and I have no idea at this stage how I work out if I have a good one or not nor if I go private I will get anything better. Any idea how I work that out or is it learning by experience? I waited a couple of weeks for scans, another week for my meeting tomorrow, is that what happens? You seem to have had so many calls from the hospital to come in and more scans? When I suggested I should have a full MRI or CT scan the consultant who first saw me said the bone scan would show it all plus a MRI over the pelvic area but what if a higher organ has a secondary, do I need to start to fight when I don't yet know enough about what battles I should be fighting as until now I have been  live and let live kind of person?


Sorry for such a load of jumbled questions but I guess that's where I am now jumbled and scared.


Kev

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 14 Nov 2014 at 21:07

Hi All,


Bloods today ALP 35 (lowest ever) PSA <0.01 Testosterone <0.01


CT PET scan Monday to try and identify the UFO that the bone scan picked up two weeks ago, it is being reported on straight away then i will see Jamie (onco)


Ness thinks it is a malteser i had and it missed my stomach and is just floating around, we shall see monday


Si    

Don't deny the diagnosis; try to defy the verdict
User
Posted 14 Nov 2014 at 21:24
Amazing blood results Si. Glad the CT scan is being done quickly. Glad you will be seeing Jamie ASAP too. What a guy he is.

I love maltesers.

Love to you and Ness
Allison xxx
User
Posted 15 Nov 2014 at 11:47
Morning Si Superman
if your ALP goes much lower I will start to question if you are actually a human life form? as for the malteser I am worried that I may have been responsible as I do tend to bring maltesers with me when I visit?
Hope all goes really well on Monday ideally the malteser has melted and if not I just pray it is something of little or no significance. I will be very interested to hear what Jamie has to say if it does turn out to be a new minimet, especially with blood results like that, how can that happen?
lots of hugs I will be thinking of you all day Monday (well more than usual anyway)
Love to Ness and the Girls
xxx
Mandy Mo
User
Posted 15 Nov 2014 at 20:38

Si Superman,


Call me stubborn, call me bonkers call me anything you like but I am refusing to believe with blood results like those that there is anything untoward on your scan. I am holding that thought until you tell me any different.


I will be thinking of you all day on Mon. From our Gang to your Gang X


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 15 Nov 2014 at 21:04

Thank you Si and your staunch Lady; you have given detailed factual hope, I read the lot and I am in total awe.
I cried a bit, but also laughed, again, thank you.

I recall reading somewhere that the sooner you get to a centre of excellence, the better your chances, so to Irun I note that I started at Epsom after the GP, referred to Royal Marsden (Sutton) and never looked back. Went straight onto 'Stampede' and the current genetic survey - I figured I may as well be some use whatever happens.

For Super-Si I was interested (and appalled) at your first bone scans, but on the funny side the adverts that appeared on the screen underneath offered them for purchase, as mounted holiday postcards and Christmas cards! That's taking black humour just a tad far! 8~)

Can't thank you enough for such a positive story, well told.

Kindest regards to all on here, specially the families, b0b

User
Posted 15 Nov 2014 at 21:07

I am sure Jamie will be able to explain all Si.....the blood test results remain to be so positive, they reflect yours and Ness's outlook

Speak soon
Bri

User
Posted 15 Nov 2014 at 21:44

I am struggling to get wifi at the moment in NZ so thought I must post before it goes again. This is great news and you continue your amazing path of resistance. Long may it continue.

My dad had problems with his left ear for many years, convinced that a piece of bacon had lodged there. When he was eventually operated there was no bacon sadly though sausage, eggs and chips instead! Hope the Malteser is nothing mate as you have the Newark Group christmas bash to organise with Mo.



PS I lied about the eggs and chips!

Edited by member 15 Nov 2014 at 21:45  | Reason: Not specified

User
Posted 16 Nov 2014 at 10:02

Thanks guys for your reply's, the problem i have is the blood results i get really mean nothing.


PSA hit a high of 4.6 so will not get anything from this.


But the one i do not understand after researching numerous sites is ALP, Jan 13 mets everywhere and a pelvis about to break but when i got all of my blood results prior to diagnosis when i was being treated for just an "infection" my ALP was;


August 12, 47


September 12, 56


October 12, 52


So a cancer that gives of very little PSA and can go to most of my bones and my ALP stays normal.


Answers on a postcard please.


Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 16 Nov 2014 at 21:16

Well it's fairly simple really, some of us mere mortals are made of flesh and blood and then there are the higher beings with Superman powers that are made of Kryptonite. What other explanation could there be.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif


Thinking of you Ness and the girls for tomorrow. X


BFN


Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 Nov 2014 at 21:43
SI
I think Julie has the most sensible answer I can think of.

Seriously, we are thinking of you my friend.

Lots and lots of love to you, Ness and the girls xxx
 
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