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Simon Story Chapter 2

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User
Posted 09 Feb 2015 at 14:51

You have a good bloke in Jamie, he certainly seems to be looking after you, I will second Mo's beads for Thursday. (well prayers anyway!)

Chris.


PS. we still haven't said thank you to You and Mo for organising Newark, so THANK YOU........

User
Posted 09 Feb 2015 at 18:27

Si

Glad to hear you didn't let the drinking side down on Saturday.

So you've gone all intermittent if only for a short time.

You've got a good man in your corner with Jamie and I am sure he will come up with something that appeals to you although you should give some consideration to a compromise if you are not totally enthralled.

The bloods and scans are good so thankfully you are starting from a reasonable point...be interesting to hear why the radium is not suitable at the moment.

As Mo says you are an inspiration to us all. You always tell it as it is and always there for others.

Let us know what happens at the consultation

Bri

User
Posted 09 Feb 2015 at 20:06

Quote from Mo
" You are a true inspiration to a lot of people here (even if your responses seem to be from a very select group of followers, there are many who read and say nothing) "

Well I'm one of those who read and shake my head in wonder but don't reply, so this time I will.

Actually, Si, I don't know what to say now. You mean a lot to many people. Your courage and attitude are, as the others have said, inspirational.

Good luck for Thursday

We can't control the winds - but we can adjust our sails
User
Posted 09 Feb 2015 at 20:10
Hi Si

Sorry to hear that things are never easy for you at the moment. You are inspirational to newbies like me as you fight everything and challenge. I see the consultants with questions that get responses but always go along with what they say, how on earth do you decide when to stick or twist? I hope all goes well, unfortunately I can't go to the rearranged Cambridge v afc match as I have chemo that day, probably will avoid me watching an embarrassing defeat anyway! Look forward to the next drink session as my wife can't have more than one birthday in a year!!! Stay strong my friend guys like me need to see you post, 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 09 Feb 2015 at 20:38
Hi Si, sorry for the delay in relying, l checked a few times but it kept looking like my post was still the last one ... I hadn't clicked things had moved on to page 5!

Wow, what a stressful time you've had. It must be very unsettling. I wonder if abbi is something that you could alternate with (as in periods on/off it like they do sometimes with zoladex?). Not worth it if it's too risky for the heart obviously but it's worked so well up to now... Anyway, Hope that Jamie has some good ideas and that you can work out a plan you are both happy with. It would be great if you could have a break from treatment. You sure deserve one.

Very kind of you to invite us on Saturday, it would have been great to meet you, and the rest of the gang. Unfortunately I'm in London & I've only just read your post so looks like we missed it! Hope you had a lovely afternoon.

You were right, Dad saw one of Jamie's team last week. No news really. Psa up but they didn't suggest changing anything so it's back again in 6 months.

Good luck for your appointment. I'll be thinking of you and will keep checking for updates.

X

User
Posted 09 Feb 2015 at 21:21

So am I one of the select fewhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 Feb 2015 at 18:26

Si I know that you will make the right choice for you as you always have in your very own unique style after all that's why you are Si Superman

I know that you don't want to go back down the chemo route just yet . I have every confidence that between you and Jamie you will find a compromise on Thur. I will be thinking of you Ness and the girls on Thur.

Remember that blanket that we shared in what seems like a hundred years ago well I still have half if you want it.

I did read that Radium 223 had a manufacturing issue, so I am not sure if this is the problem.

BFN

Julie X

ps puppy pics are on the way for the girls

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Feb 2015 at 00:02

I know that the heart business and ending of abby-tabby is not exactly what you dreamed of but it struck me as I read your update how wonderful this bit is 

"Bloods are still good, PSA & testosterone all undetectable, bone scan showed no progression" 

 

I guess the Gods are still looking out for you my friend - take heart x 

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

User
Posted 12 Feb 2015 at 13:09

First appointment done with the heart man, he is happy with how things are now. Letter has been sent to my GP to issue a prescription for tablets if it happens again.

He will not discharge me, as he said i will see you again when your oncologist buggers you up again.

Results from bloods today, ALP 36, PSA <0.01, Testosterone <0.01.

Appointment with Jamie has been brought forward an hour so now 6.50pm tonight.

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Feb 2015 at 13:56
Si

one down and one to go, make sure you are on your best behaviour for Jamie if you need physical assistance my boxercise class was awesome yesterday, think I am going to become a middle aged female cage fighter LOL

will ring later or tomorrow morning.

xx

Mo

User
Posted 12 Feb 2015 at 14:19

Hi Si

I have been following your recent postings and see you have moved on from Abiraterone and got a heart "blip" under control.
Your numbers look good so I hope you have a good meeting with Jamie tonight on what to do next.

Best regards
Alan

User
Posted 12 Feb 2015 at 15:45

Good news so far, keep it going for later. Watch out for Mo she sounds ready to take on anyone that gets in her way.

X

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Feb 2015 at 19:32

Those blood tests are very enviable...long may they stay that way

Hope the consultation with Jamie has gone well and that the air wasn't too blue

Speak soon

Bri

User
Posted 12 Feb 2015 at 21:23
Good news so far, Si. Got fingers crossed re the Jamie appointment. Hope it was positive. *
User
Posted 12 Feb 2015 at 22:33

Well long day and i think i am very happy with the result.

This must be the nearest i will ever come to active surveillance, just zoladex and nothing else.

2nd journey with Chemo is now at the back of the queue, will continue with zoladex until progression then move on to Radium 223 and Enzalutamide together, hopefully a long way off.

Jamie sends his best and looks forward to seeing you at Leicester, Bri 45 minutes booked with Jamie for you at the end http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Happy boy tonight

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 12 Feb 2015 at 22:52

WOW What a day Si, I am so pleased for you really good results . Just what the Dr ordered. It is strange though that you and Trevor are now just on the Zoladex together. (twins) http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Feb 2015 at 23:04
Fantastic! So happy for you, what a result. Thanks for updating us, been thinking about you all day & spent all evening checking for news ... Can't stop smiling now! Brilliant news *
User
Posted 12 Feb 2015 at 23:05

Good news for you Simon.

dave

User
Posted 12 Feb 2015 at 23:08

Well done Simon, long may it continue.


Chris.

User
Posted 12 Feb 2015 at 23:43

Interesting outcome. Hope the good results continue to roll in and if not you do have a good Plan B! Pleased for you Si!

User
Posted 13 Feb 2015 at 00:43
Si

I really hoped Jamie would go down this rather radical route you have been through so much.

Just knowing there is a plan B must be good and now your body and mind can take stock. Your blood results have been consistently brilliant so long may that continue.

I am so happy for you , big happy like a room without a roof happy. I am so looking forward to MOS so that I can say thanks to Jamie for doing all he has for you and your family my friend

xxx

Mo

User
Posted 13 Feb 2015 at 07:14

Great news Si....looking forward to my consultation with the Oracle aka Jamie :)

Looks like we need to arrange that beer and curry night to celebrate

Bri

User
Posted 13 Feb 2015 at 07:39
Fantastic news Si, I am relying on you to keep going forever! Take care, 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 13 Feb 2015 at 09:15
Great news, Si. I'm really pleased for you and your wonderful family.

Steve

User
Posted 13 Feb 2015 at 11:07

Si, I am absolutely delighted to read your post.
What a relief for you all, and what a good guy Jamie is.

And thanks for your message about him definitely speaking at the 'do' in June.
I know a lot of people will be so pleased about that. He had a 'blinder' there last year.


Looking forward to seeing you both then.

Stay well. and keep denying the verdict!


George

B2PCa
User
Posted 13 Feb 2015 at 11:32

More good news is just what we want to hear. Excellent news Si, I look forward to chatting with you again in June

 

Steve

 

User
Posted 13 Feb 2015 at 16:37

Thank you all for your reply's really appreciate them.

Thought i would pass on a very long discussion that i had with Jamie last night about treatment going forward.

my thoughts are if i go back on Chemo and that's a big IF, then first i stop HT then have testosterone injections to wake all the cancer up then commence the Cabazitaxel.

Well that went down like a lead balloon, he then said are you trying to get me struck off and any way your thinking is flawed, when the Chemo slows down around day 14 the testosterone will still be feeding the cancer,

Ah but if after i have the Chemo i then use a Hyperbaric oxygen chamber this speeds up getting the chemo around and also speeds up recovery. So we check the bloods from around day 14 and as soon as they have recovered we have the next cycle.

I think he is thinking about it, but boy it sounds fun to me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Can anyone see any flaws, i don't want to keep going on at him.

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 Feb 2015 at 16:52
Si

I cannot possibly comment on your medical strategy ..do visitors have to wear a Hazmat suit during this proposed treatment? will you be allowed Black coffee, Fosters, Peroni, B&Hs, Pizza and kebabs ? I know how grumpy you get without them

Curry, currry? did someone mention Curry?

xxx

Mo

User
Posted 13 Feb 2015 at 17:17

Mo,

All of these courses you have been on, and when i need you most http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif No Answer No curry http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

I have spent hours researching, the take up of chemo from a dormant tumor compared to active tumors.

The benefits of Hyperbaric oxygen chamber when on Chemo, even got a mate with MS who has a chamber in his house.

I just thought sign a consent form and your away, obviously didn't research that http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

So just need Lyn to tell Jamie at Leicester that its a good idea and then it will be a goer.

Wheres my twin when i need him http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif

 

Don't deny the diagnosis; try to defy the verdict
User
Posted 13 Feb 2015 at 17:29
Hi Si

Great news keep it up. I thought testosterone injections were used if the Cancer had become resistant to the hormones, so as to fool them into accepting the hormones again.

Roy

User
Posted 13 Feb 2015 at 17:45

With all that technical stuff I got lost, BUT I am glad that you have a plan and that you are happy with it. I have already started training for NTN Event!

NTN = Newark The Next!

Have a great weekend and half term.

dave

User
Posted 13 Feb 2015 at 22:11

I am on to it already Si - he won't know what's hit him. Plus, if he gets preferred to the GMC for consideration of barring as a result, I am suitably experienced to defend him x

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

User
Posted 13 Feb 2015 at 22:34
Si

so I have to answer to get a curry .... OK I suspect your thinking is entirley logical just not medically proven. Jamie has several big problems numero uno because he is not technically allowed to be radically inovative unless he has the backing of his profession. In any scientific experiemnt someone or something has to be the first participant. He may be waiting for that report to come in and I am sure the girls would be mortified if you tried this theory out on the rabbits or the cats and all of us would be mortified if you tried it out on the girls or Ness so that just leaves you ! ... I will give Jamie his second biggest problem and join forces with Lyn and fight your corner with him (believe me the boxercise classes are making me a lethal weapon) but if he says that your reasoning is medically and scientifically flawed then I just love you and your family far too much to go along with it.

So on this one I sit as a neutral until I see what your Man has to say on the matter.

Enjoy half term with the girls and about now I should think you are getting a full recount from Ness on "that film" which I have decided should be to PCa ED sufferers like saying Macbeth is to Shakesperean actors.

As for your Twin I rather think he is looking forward to us paying another visit real soon and maybe persuading him to come and join us at MOS in June so he can have a little chat with the main man too.

xxx

Mo

User
Posted 13 Feb 2015 at 22:39

I think the fact that 'that film' hasn't been nominated for any oscars suggests there are a few men with prostate problems on the judging panel Mo x

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

User
Posted 13 Feb 2015 at 23:36

He has nodded off Si , so no help in an emergency of course he has left his trusted side kick to answer. So my first worry would be twin to twin transfer yes you could be cured of PCA, but and as usual it is a big BUT the side affects off SCC (Skin Colour Change) and not every body suffers from this but you should be aware there are many side affects .

Some people cant handle the SCC as there are many other syndromes that are associated with this . Typical side affects are a strange and inexplicable hunger for Jerk chicken with rice and peas.

The switch to Jazz and R&B MUSIC this is one of the easier side affects  of course Bob Marley crops up every now and then but you wouldn't have to grow dreads or anything like that.

So apart from the colour change and the strange urge to throw a hip movement on the dance floor I think you should go for it. I forgot to mention the Barry white voice. So you may well wake up in the morning looking like All Johlson  dancing like Fred Astiair  with Bob Marley dreads and a seriously sexy Barry white voice.  Ness will be so pleased.  X

You will be Epic.

BFN

Julie X

 

Edited by member 13 Feb 2015 at 23:56  | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Feb 2015 at 01:33

Funniest thing I have read in ages x

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

User
Posted 14 Feb 2015 at 12:27

OMG!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Gotta agree with that last post of Lyn's.

Julie, you are responsible (for the umpteenth time) for me spluttering tea all over my keyboard!

Never mind BAFTA awards, you deserve an 'LAFTA' nomination for that post.


YOU IS TOO FUNNY!!http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif


George

 

Edited by member 14 Feb 2015 at 12:28  | Reason: Not specified

B2PCa
User
Posted 14 Feb 2015 at 12:55

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gifhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Stay Calm And Carry On.
User
Posted 14 Feb 2015 at 14:58
Julie SS

looking back at previous postings you forgot a critical twinning side effect the extra inches ( or was it cms!?)

You really do make me laugh and always will, you truly rock. I was going to phone you last night but I fell asleep on the sofa (too much boxercise maybe as no alcohol involved) and didn't wake up until gone midnight I know that gorgeous as you are, even you must get beauty sleep sometime so I will try and force myself on this night of romance (guys get bromance what do we get? I can't call it chicklove too yeuk! ) to ring you tonight.

xxx

Mo

User
Posted 14 Feb 2015 at 16:45

http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Edited by member 14 Feb 2015 at 16:54  | Reason: Not specified

User
Posted 18 Feb 2015 at 09:21

Time to update, now things have settled down.

After stopping all cancer treatment due to causing heart problems (SVT) and having 3/4 weeks with no problems Sunday morning it all goes wrong again HR hits 185 and takes 2 hrs to settle down again.

Sunday evening another one just as bad and then early hours of Monday morning another one, by this point i am running out of excuses to stay put so duly taken to A & E. well we did get some great traces on the ECG so heart man will be happy but this time the heart would not slow down. So a lovely Doctor said we will be giving you this injection and for 10 seconds you will feel awful, but look at it like we will be pressing a reset button on your heart, well he was so right it was bloody awful. Heart goes back to normal and after a short observation, probably shorter than they wanted but its not every day you get a 54 year old having tantrums like a 3 year old, i was sent home.

So Monday night i see heart man and he now thinks it was not my medication it was just me http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif so he gives me a letter for my GP to issue more tablets. So before i manage to get them the heart goes bonkers again Tuesday morning. So the thought of having another injection i decided to stay put, looked on the NHS website and it said pinch nose, close mouth and exhale as if you was straining on the toilet then stick head in a sink of cold water, well bugger me it worked. 

So now i am thinking do i need the tablets but Ness pointed out if i didn't take them she would be putting my head in a sink of water http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

So today i feel great, but remember since Julie mentioned the word twin i now have a heart problem like Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif scary, but there could be benefits here, Trevor is the only one i know that has to wear a leg strap when on the ride on mowerhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif maybe just maybe http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif 

So now we need a chat with Jamie, not a bad 4 days

Si xx

Don't deny the diagnosis; try to defy the verdict
User
Posted 18 Feb 2015 at 09:58
Morning Si

I will be very kind nay ladylike and not utter a word about your heart or that stubborn mule who ignores almost everything his lovely wife, Oncologist or I say including the threat of Fosters withdrawal. Not a word promise.

Now about this bromance you have got going with our mate Trevor...... Julie help me out here?!!

Seriously now, it has been a crazy couple of months for you but today the sun is shining again indeed another glorious do something kind of day. That does not mean going totally crazy Shania Twain style but please try to just enjoy a little bit of fresh air and take life in the slow lane for a day or two. Meet up for a curry lunch with Bri and Paul (maybe CB would like to join you for that one too) talk about Rugby,cricket and football and the meaning of life.

xxx

Mo

User
Posted 18 Feb 2015 at 10:04

So, a bit of an eventful weekend then Si?

Glad to hear that you are through all that. Let's hope you stay calm and steady, no more tantrums.

atb

dave

did someone mention a curry?

do I need it book a room? If Si is there I will consume not as many beers as he does.

LOL

 

Edited by member 18 Feb 2015 at 23:56  | Reason: Not specified

User
Posted 18 Feb 2015 at 13:00

Hi Si,

Sorry that you're having problems again with your heart.  I know how rough it can be on top of cancer.

Hope you are able to get sorted soon.

Take care of yourself.

All the Best,

Steve

User
Posted 18 Feb 2015 at 13:31

Si,

Ironically if they can sort the heart separately this could be good news? If Abby not the cause and it was doing such a good job surely this becomes an option again. It is also good news for those of us awaiting our Abby journey in the undefined future as looking for heart problems sounds really scary.

You need a long term solution to the heart problem which sticking your head under water does not sound. Time to listen to the medics and get it sorted so we can have that curry!

User
Posted 19 Feb 2015 at 20:38

Sort the heart, sort the cancer, sort the beer etc etc.

LOL

I am sure I read somewhere that a curry was in the offing, am I, was I wrong?

Newark seems like an age ago, it's only 2 weeks 'ish, but I would like to meet up and have a curry and a chat again asap.

And maybe have some or a beer.

Come on Si, sort a date out.

manlerve to you, Ness and the girls.

dave

Chicken Shashlik, Tarka Dahl,(fried Otter with Lentils), Pillow race, and a Keemur Naan please. ;-)


User
Posted 19 Feb 2015 at 21:48
Si

I know the curry is supposed to be a boys night out (or day out) but I could wear a stick on moustache strap into a super minimizer (going to have to be wonderbra in reverse big time!) and see if I could talk an octave lower if that would help me to qualify. I know loads about football, quite a bit about cricket and could wing it on Rugby by talking about hookers! I like fast cars not so keen on loose women but even there I could pretend just for you. I can even handle a vindaloo on a good day.

I have started the registration for the Colour run in May, perhaps we can get a team of pirates together from the Newark gang (those that don't run but get the paint and make those of us that are running very messy) I think we should offer up my two bathrooms as clean up zones and have a BBQ afterwards at my place. You up for that?

Even Superman has off days Si Si so just try and stay up there my lovely bestest manfriend

xxx

Mo

User
Posted 19 Feb 2015 at 22:53

Ok so a curry and a cold bucket of water is your answer to heart problems . Phweeeeeeeeeeeee that's me escaping gas from my cheeks. (face cheeks not bum cheeks)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif OK so curry , no forget the curry this could give you Heart Burn and not heart relief.

The cold bucket of water, (get out of here )http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif are you serious never have any medics or Ambulance men   ever said to Trevor we will be there in half an hour emerse your head in a bucket of water. Come on it would ruin his dreads.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif He would look like a drowned rat.

Take the the tabs , on the upside if it is just you being a little bit hearty farty, then the Abby wabby could still be on the cards. You know what they say every card having a Silver lining this may be your silver lining . So get your head out of that frekkin bucket and onwards and upwards . take the tabshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif

Love you loads.

BFN

JULIE x

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Feb 2015 at 08:34
Jeeeeez! Never a dull moment, Si! But if Abbi could be back on the cards (and you have a decent cold water supply) perhaps it is a bit of a silver lining after all.... Do you know when you can fit in a chat with Jamie? Meanwhile, here's wishing you a LOT of very, very dull moments - and curries. x
User
Posted 20 Feb 2015 at 10:49
Si Si Superman wherefore art thou

what no Shakespeare?

Family ScottOrr are signed up fr the colour run ...fees paid e mail confirmations out and Participant packs will be sent to me soon. So I am off to the gym to work on my thunder thighs and then going to try another attempt at running later Lord help me. My PT is now suggesting we bring skipping into my routine please can the girls help me out here as I can only remember one skipping song.

xxx

Mo

 
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