Simon Story Chapter 2

Si,

Its all gone tit's up delivering the ride on, apparently it won't fit in your letter box.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

BFN

JULIE X

I have just spluttered tea across my laptop #!&8*??%£/^

Hi Paul,

Originally Abbi was thought to be the cause of the Tachycardia, but now it was been found not guilty Jamie will start me back on them.

So far i have managed 25 months on Zoly and 19 months on Abbi, would be a shame to change a winning formula.

Hope your keeping well

Si    

if you keep moaning Julie,Lyn and I will think you are having an organism too! Lord alone knows what Jamie will think after what he called you last time.

Seriously though I think it is great that you are having a little HT break just make sure you react quickly if there is any change. In the meantime lets hope your heart stays as steady as it has in the last 2 weeks.

It was spooky talking to you through the eclipse this morning the A34 was bizarre, cars parked all over the place and loads of telescopes, very high spec cameras that Steve and Paul would have loved, and me with my collander and piece of paper!!

I am going to miss you all so much over the next 5 weeks but of course the worldwide super highway should keep me in touch when I can.

xx

Mo

Its so refreshing to hear you are feeling so well Si.
I love the way you take control of your treatment....and I know Jamie will be keeping a close eye on things...heres hoping the scans are good

I reckon that Peroni/Fosters diet is the bees knees

Speak soon

Bri

I shall have a beer with you tonight Si.

;-)

dave

Thanks for your comments.

Dave i will defiantly be at the color run and look forward to a few beers and Mandy's great BBQ

At the moment a feel really great except when a get a tachycardia then i am wiped out for the day, i will give the new medication another couple of week and if i am still getting them then i will be pushing for the op.

Julie the girls are so excited to meet all the dogs, and you and Trevorhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif let me know what days best, you can see my scan dates

Si xx 

Hi Si,

Sorry you're still having heart problems.  I know what a nuisance it can be.  You just don't want anything else on top of dealing with cancer.

Hope things are resolved soon for you.

Take care,

Steve

How did yesterday go Si?

Sorry for the late update, Easter holidays young kids and great weather.

So 12 weeks with no treatment and the bloods last week, PSA and testosterone undetectable and ALP 42. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif No tachycardia's for three weeks so i think they have the meds right at last.

So at the moment i feel the best i have since i was diagnosed and this now makes for a few difficult decisions.

CT Pet scan last Thursday and Bone scan and SPECT CT scan this Wednesday and Jamie Thursday night, well after a great day on Thursday at Alton towers we arrived just in time for the appointment, a bit mucky after to many trips on the water flume but a happy family.

CT PET scan picked up a couple of dodgy lymph adjacent to the splenic flexure but the jury is still out.

Bone scan is unremarkable (love that word) but activity in L5, and right hip.

SPECT CT activity in some of the sclerotic metastases but also some shrinkage http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

So with all the treatment lined up in front of Jamie, Zoly, Abbi, Denosumab and steroids i thought bugger this we are having too much fun and feel bloody great so declined it all.

Will have another chat next month, i am sure Jamie was fine with it http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Another full week of activities planned for the last week of the girls holidays .

Cant quite get my head around undetectable PSA but activity in the bone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Si xx

Unremarkable who ever invented that terminology , no one my friend could say you are unremarkable. So good news all round the blood results as usual are REMARKABLE.  As you say it is difficult to get your head round those blood results and bone activity . So glad that the heart issues are settling down.

So that is you and your twin sorted http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif bring on the summer.

BFN

Julie X

see you and the girls soon X

This is such wonderful news and another drug holiday what a treat. Don't overdo the holidays though you know Jamie makes sense. Have a wonderful day basking in these results and let others ponder over the paradox of met spread and PSA. More evidence that OSA is such a complex and contradictory indicator. What with Trevor you make such a wonderful pair of successes, long may it continue.

more fabulous news with much more info than my sneaky preview.! i think Lyn will be checking Jamie out at MOTS he will  have progressed to a little something from Amsterdam to calm his nerves pre Si visits by then.!

can't wait to see you Tuesday for a  celebratory cuddle and cuppa.

xx Mo

Many thanks for your comments really appreciate it.

Lyn, the schools appeal is penciled in for w/c 4th may.

i think i will be restarting treatment in 4 weeks time, i was hoping to go longer but with no help from my PSA i am not sure if my nerve will hold.

Mo, Jamie was fine i didn't hang around to hear his arguments for restarting treatment my mind was made up, see you Tuesday

Si x 

Si,

 I know it is some times difficult for others without children to understand where you are coming from in delaying extra treatment and being the Dad that you want to be, I so understand this, LIFE is a balancing act when we have young children you know that I applaud your decisions . I know that when you feel the time is right you will be straight back on which ever treatment you need. 

Mo are you suggesting that Jamie is a Si Afolic OH My what has the world come too. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif I can see that he may well need a holiday but AMSTERDAM , it's full of WELL strange people. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

BFN

Julie X

Bloody 'ell Si,

Jamie is being a real old meanie with you isn't he?

It does seem that those results are excellent, but I'm sure he must have a very good reason for starting HT again so soon.
I mean, you ARE a walking miracle you know! He won't want any spanners in the works.

So looking forward to seeing you an Ness again at The Mill, and yes, your profile won't come up on this site today.
I get a 404 Error message.

All the very best,

George

I know you are mad with Jamie but he is clearly determined to let you know who is the Oncologist here!! You have an elevated testosterone (admittedly only a teeny bit) and that must have been enough for him to make that judgement.

You might be the first ever advanced mets patient to have intermittent HT. I think Jamie wants to see what happens if you go back on Abiraterone too.

Looking forward to Leicester too.

See you May 31 on my way back North. Xxx

Mo