Hi Julie,
So you are having some "normal" time http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif for those of you that have never met Julie believe me there is no such thing as normal.
So book us in, girls for the puppies and me for the conservatory for a beer.
Results not brilliant but you now have Abbi, you know how much i rate this drug, i have put i link from Gerry Potter who developed Abbi worth a read about reducing the dose, worked for me but don't tell Jamie.
Let me know when your free, hope the boys enjoyed being back at school.
Love from us all
Si xx
http://prostatecancerinfolink.net/2012/02/06/long-term-use-of-abiraterone-acetate-at-250-mgd-is-this-really-viable/
Don't deny the diagnosis; try to defy the verdict |
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Hi Julie
Don't think I have ever commented on your thread before, but I am one of these people who reads many threads and laughs and cries quietly with everyone at what I read.
I'm glad you have had a nice summer of being "normal", I appreciate it is lovely to put cancer to the back of our minds to give us a break from the stress of worrying
Bob had about 12 months on abireterone and responded well, and without too many side effects, just tiredness. Though I do appreciate your concern with his heart proB's.
Julie you are a truly inspirational lady and I wish you and your hubby al the best with your next treatment.
Love Lesley xx
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Hi Julie
Agree with Si on the normal comment.
The results aren't what you wanted but maybe not totally unexpected either.
Now get rid of the pessimist streak....There are weapons in the armoury and more summers of fun and frolic to be had....did I just say that lol
Sounds like you are gonna be busy with them pups though
Take care
Bri
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Sweetheart, I thought last summer was probably going to be your last normal one and then I worried that last Christmas would be the last the boys would have with their dad. Just shows that I am a fatalist and T is made of steel. As long as the Wiz is keeping an eye on things, you have hope my lovely friend.
Loved the 'first day at high school' photos on fb x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Julie
been a long time since you have posted I can understand your reasons.
Sorry to hear that treatment has moved on .
Both Eric and Trevor with the heart problems treatment isn't the sa me path that others are given.Im glad that they won't give Trevor chemo in Scotland you have to before abbi worst thing for Eric with heart condition.I hope abbi works for him with no side affects.
You are both in my thoughts.
Best Wishes to you both
Carol x .
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Good to hear from you Julie and thanks for the mention. I am feeling ok at the moment after the scares of early summer but life is changing for me and when it has I shall reveal all on here. Your silence now proves to be wonderful news as you have enjoyed a great summer. The results are never what we want and Trevor has moved on to that next stage causing worry as you and he adjust to the new drug regime. I would label this your 'new normal' and embrace it for as long as it works. We all know that having bone met spread means that we will continue on this uneven and unwanted journey. It happens and we have to re define how we think about the world around us. I went through this in the summer when I had such pain with bone spread in my legs I thought I would be moving to my new normal and it has created changes in my thinking and my actions. But we never forget TopGun's wonderful phrase Life is for Living. For how long none of us can be certain but I know you and Trevor will embrace it whatever happens.
I do hope Abby tabs are a great success and further reports talk of Trevor,s resilience. Good luck on this next stage of this journey.
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Hi Julie,
I just wanted to welcome you back and say how sorry I am that Trevor's results weren't what you have hoped for. Please give him my very best wishes. Hopefully starting on the Abby tabs will help him in the coming months.
Thinking of you both.
Steve x
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hi
just wanted to put in my two penneth
like most of you am on other sites one of the guys been on stampede with abriaterone I assume this iwhat you talking about, well his resuls are awesome, hotspots have gone just a bit of increase in his spine, hope and pray this is what you are talking about and that if it is you get the same results
nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it' |
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Julie my SS
I know this summer has been a welcome time of normality for you all, I have been lucky to share some of those moments with you.
The next few months will be a difficult time as you wait to see what happens with the new drugs.
Having the conservatory finished will give you space and a little sanctuary.
You have such a wonderful humour and you are stoical rather than pessimistic in my view. Lyn says it perfectly.
Know how much you are loved because it helps believe me.
I am booking myself in for a closer inspection of the new visitor reception facilities at your gaff in a week or so. I will be ready to have Cruella de V greet me with 40 or so of the 101 !!!
Tell T and the boys if they are good I will bring a Tumeric spice cake and the new 5* flapjacks..Si can explain when he sees you.
Love you loads
Xxxxxxxxxxxxxxxxxxxxxx xxx
Mo
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Hello Julie
Well not the results anyone would want. Let's hope the Abby Tabs work their magic. My friend's hubby did very well on them for nearly two years and he had had a few heart attacks previously. Close monitoring and changing the steroid helped him a lot.
I, too have been mostly absent, just enjoying life and counting my innumerable blessings this summer. We had a holiday abroad for the first time for ages and despite a few touch and go moments re the loo visits, and a fantastic new bladder drug which helped a million, we went and had a great time. Our latest visit to the Onco shows a rise too but from 2.3 to 3 so no change this time in treatment, so we carry on with our normality too. Mind you we saw the head Wizz, who was new and wanted to see John as his G10 and nearly 5 years on and well (you know what I mean, well for cancer!), John's a legend at our hospital. We also saw a urologist who said he felt that we were friends not patients, all in all our confidence in our medics is through the roof. What a difference it makes Julie.
I'm so glad you have trillions of pups on the way, fingers crossed for better on that front, I can't imagine how wonderful it is to have the patter of all those tiny paws around, just gorgeous.
Sending you loads of love and all the best for the Abby tabs.
Lots of love
Allison xxx
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WHOOPS A DAISY PSA up another 100 in just 3 weeks now at 351 , that wasn't supposed to happen . Trevor went on his own for this appointment so I am getting second hand information .
Conversation went a little like this when he got back.
Me "How did it go "
Trevor " Yes it was OK there has been an improvement in the bones"
Me " Oh good but how could they tell without a scan "
Trevor " From the blood test"
me " what about the PSA "
Trevor " It's up a bit , can't remember what she said it's on the form"
So it is still early days on the Abbi tabs but a jump that big I am feeling really disappointed I know we have to give it time .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Hi Julie,
I'm so sorry to hear that news. I hope the Abbi tablets start to work better.
Thinking of you.
Steve x
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So sorry to hear about this setback. You would have hoped for an early win with Abby tabs hope they get their act together pretty soon and do some damage to that PSA.
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Hi Julie
Not brilliant news but around 10% of men experience a PSA flare when they first start and in Trevor's world a rise of 100 is a tiny flare
Are you around the next couple of weekends for a visit
Si xx
Don't deny the diagnosis; try to defy the verdict |
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Julie my lovely SS
Not the news you wanted on the PSA front, I can only assume from Trevor's comment about his bones that his ALP or something else has come down a bit he is never the most specific is he?!
Si has a point the PSA up 100 since the start of Abi in Trevor's journey is a teeny weeny flare and even at 351 that is 350% better than it once was. As I said in my PM Abi can take 3 - 5 weeks to get going so try not to worry too much just now. I do hope the puppy front calms down sufficiently for you to go with him next visit to the Whiz.
xxxxxxxxxxxxxxxxxxxxxxxxxx
Mo
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Hi Julie
Really hope this is a flare and those abbi tabs start to kick in
Bri x
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Not such good news Julie.
Fingers crossed that Trevor is one of Si's 10%
We can't control the winds - but we can adjust our sails |
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hi julie
cant offer much advice but from what I have just read the folk on here have come up with some good advice already
nidge
run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it' |
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Hi Julie
My fingers are so crossed for you both that the next psa reading is lower. Sounds like it may be early days, don't give up hope.
Take care, Lesley xx
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Sorry to read your latest blurb Julie, take heart dear girl, you are both still in our prayers as are several others.
xxxxxxxxxxxxxxxxxxxxxx
Chris.
PS, keep looking at the HUG !
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Thank you Guys for being there. I know we all say DON'T GOOGLE to newbies and then behind the scenes we Google we are so two faced the only reason we say Don't Google is because we have already Googled and understand what they are going to see when they Google.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif are you keeping up. If you are not keeping up it's because YOU ARE STILL GOOGLING .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
So yes Si I did Google about the 10% and thank you for mentioning it (although of course I had already Googled it) sometimes I think what did we do in the good old days before Google well we Gossiped over the fence we probably learnt just as much and heard just as much bad news, maybe even worse .
He doesn't look so good today but just may be I am seeing things , maybe I am seeing the worse because I am expecting it, maybe I have Googled too much.
Tomorrow know that's another story and it hasn't been written yet so Onwards and upwards .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Julie
you are all googled out?, that is a bit like being puppy maxed to Cruella de Ville !!
We thirst for knowledge but then hate what we read, we try to compartmentalise issues that actually belong in half a dozen different places and most of all we rationalise, for there always has to be an answer, not always the one we want to hear but that is our new world. Joy, sorrow, fear etc. all of those emotions we all can deal with on a one off basis but now we multi task on emotions, each day can be different but we deal with it. That is what we do and that is what friends are for ...will call you this weekend
xxxxxxxxxxxxx
Mo
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I never google - mainly because I wouldn't trust the information that pops up. It makes my world a happy place most of the time :-)
Julie, I worry that you are over-tired with too much on your plate. What if anything can I do to help?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi Julie,
Just to let you know I'm thinking of you both and while I was in church this afternoon I prayed that things would get better for you and that Trevor's condition would improve.
Steve x
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You're right Julie.
We do all google, well I certainly do, but it's how I cope.
Thinking of you anyway
We can't control the winds - but we can adjust our sails |
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To google or not to google that is the question
Whether it's nobler to suffer the slings and arrows of outrageous fortune
Or by opposing end them
Ah that is the question
I am sure Bill won't mind me leaning on his soliloquy! (I wonder if it's painful to lean on one?, only if you have bone mets I guess) when we are worried and fretful we seek solutions however bizarre they may sound. It is so hard to switch off search mode and I think google is just the latest in a long line of ways of knowing. I recall lying in bed with my then wife circa 1982 when she said somewhat irritably - if you are in pain go to the doctor or look it up. So I got out of bed and got our symptoms book. I was careful to follow the guidelines and she said (impatiently ) well what is it. I replied testicular cancer. Oh let,s go to sleep, put that book away! A week later I was having a right orchitecdomy and the rest is history! But the book also said it was likely to be terminal and 33 years later I am still here. So no matter what you read or dream or create its what's happening before your eyes which determines how you operate. It's a difficult journey but we go as far as we can and there is plenty of travelling to do yet.
Rest Julie and re charge the batteries for whatever happens. Thinking of you both as always.
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Paul
I think Julie and I (as well as many others) will really look forward to your post retirement writings, even when you are being serious you write with such a wickedly dark sense of humour.
Julie I also worry that you have got so much to deal with right now. If the puppies have not all gone by the time I get back I can puppysit a handful of them? Or if you ever wanted to just get away for a few days or so I will come and feed the boys and puppysit too.
Just how do you remember which puppy is which? I think I would have to tag them all or use henna dye to put little spots on them or something.
xxxxxxxxxxxxxxxxxxx
Mo
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Hi Julie,
Me and two girls ready for doggy duty tomorrow, if i don't hear from you then we will be on our wayhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif but you might be busy http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
You have loads of support here Julie, take it
Carol, you have given me he be jeebies extensive mets and PSA undetectable 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.gif
Don't deny the diagnosis; try to defy the verdict |
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Oh Julie
I haven't been here for a while, I was in a temper because I posted a bit of a long one and it seems to have got lost, so slammed the door on way out and sulked for a week. I didn't remember about Abby tab and the initial flare in some men so it could easily be that my dear friend, as already said by your wonderful support team here. It gets increasingly tough to be positive as time goes on with this disease, but you have got two lovely boys and puppies galore to pull you in all directions, many that's a good thing really, but I think maybe it is best to be positive unless and until you know differently. Your Trevor is a remarkable man, let's hope it was the ALP that was down, it's probably the only thing that makes sense.
Big hugs from Swindon xxxxx
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So love you Guys, so what can you all do to help well I have divided them all up . This is in no particular order. They are all parcelled up and on the delivery truck.
Lyn you have 7 puppies and 4 adults (I know you can cope)
Paul because you have the problem with your leg 2 adults and 2 puppies (loved your reply eloquent as ever)
Allison a genuine dog lover 7 puppies and 3 adults (you can do it)
Si you and the girls will be such a team 8 puppies and 2 adults (of course I will add some Antihistamines for Ness)
SS thanks for the offer but they can't deliver to the US
Fiona 2 puppies and 1 adult you already have lots to deal with.
Bri I know you didn't actually offer but from the FB pics I can see you are a dog lover so 4 puppies and 2 adults
Guys you can get vet bedding from Kingstown Kennels at a reasonable price , the cheapest wormer is at Pets at Home, you will all need cages and pens (it would be tooooooooooo crazy without) . You will all have to contact each other by PM for puppy buyers as to what colours and sexes are available but compared to puppy poop that's a doddle.
I am booked to leave on Mon for the Carribean you can contact me via Skype but I have heard the connection is a bit ropy deliverys will be anytime from 5 am and midday on Mon.
Have fun.
Ps don't get them wet (they multiply when they are wet)
BFN
Julie Xhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
NEVER LAUGH AT A LIVE DRAGON |
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I don't want any puppies - give me your children instead as I am pretty good at making sure they are safe and generally speaking Head teachers are very scared of me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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On second thoughts do you have a justgiving page - I will just send you some money for doggy condoms
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Send me the dogs Julie as for some reason I've just lost all interest in my other passion in life....let you work out what that is lol
Bri xx
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To have a dog or not have a dog
That is the question
No is the answer!
My lease does not allow me to have dogs, so sorry Julie otherwise I would not have been tempted! Send mine on to Brian as he lives nearby shame to take them back and he can form them into a rugby team to take on Australia next weekend. They could do not worse! Night all!
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Sorry to hear that Trevor appears to be in the mire again, my thoughts, prayers and hopes are with you, Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Wot no puppies or dogs for me ? OK I am good with that I will share the children with Lyn, we are both very good at scaring people !!!
xxx
Mo
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Hi Julie
My god Julie, I can't believe how many puppies you have!! I wouldn't know the first thing to do with 1 pup let alone 8!!
I understand kids much better but I see lyn and mo are sharing the children.
What I have noticed and I am really surprised nobody else has picked up on this and commented!!! Never mind the kids and the pups, I am offering something better, I will come to the carribean with you as a good companion!!!lol.
Big hug to you, take care.
Lesley xx
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Tell you what Julie, you take my miserable old Jack Russell with you and I'll take the pups. It's a fair exchange I reckon.
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OH Dear well firstly I would like to bring up the Thank you tradition I don't think all though I can not remember if we had this on the OLD FORUM I know we had the how many were reading which was brilliant BRING IT BACK THATS WHAT I SAY. Anyway back to the thanks I have to say this gives me sleepless nights the what if scenario (DID I forget or miss someone , maybe I forgot to THANK someone)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif So just in case anyone has been missed I THANK YOU.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif IS THERE AN AUTOMATIC THANKS BUTTON THAT I AM MISSING? because that would make life easier. A one press thanks all tab.
I am always impressed how people thank so quickly on FB if a little suspicious of course if there is a quick thanks button then my next question would be BUT ARE THEY GENUINE ? http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
So what has been happening in the J T household well puppies are growing rapidly and the poop Factor has hit an all time high . I am wading through it with a little help from the boys. 4 bin bags a day http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif It is not pleasant sorry to dispel the picture of sweet puppies but what goes in must come out.
Conservatory is up and WAS FAB, until a slight accident with the famous RIDE ON and a stone (that ride on has a lot to answer for)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif so one WHOLE panel smashed , in the words of ME when Trevor looked like he was about to have another Cardiac Arrest (It's only glass don't panic).
So anyway enough waffle where are we today well PSA down (not quite a YAY moment but as Lyn would say a drop is a drop) 231 down from 254 . So are the beans magic (not yet but for ever hopeful ) all other bloods good .
So for anyone that replies a HUGE THANKYOU just in case I forget to give you a thumbs up.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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A drop is a drop..
Good news Julie and no thank you needed ;-)
Bri xx
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Yes, great news. those beans are magic!!!!
while we are on the subject my puppies have still not turned up girls are devastatedhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cry.gif
Love to you all xx
Don't deny the diagnosis; try to defy the verdict |
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Hi Julie,
I'm really pleased that Trevor's PSA has fallen, it's at least heading in the right direction.
Your puppies must be fantastic, even thought having so many around, does create the problem you mentioned. It doesn't bother me but does my wife. I love dogs and have only ever had Dalmatians, but our last one died 16 years ago and my wife won't let me have another one, partly due to the poo problem and the fact that Dalmatians do loose their hair a lot.
I really miss having a dog, they always forgive and accept you as you are. There is no greater friend in life, but now would be the wrong time to consider getting another one, even if I was allowed. It's making me feel sad thinking about it.
Take care and send my Best Wishes to Trevor.
Steve x
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Glad there's been a drop Julie not matter how small.
What is it Tesco says - oh yeah! Every little helps!!
Good luck with the poop makers !
We can't control the winds - but we can adjust our sails |
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All best wishes from us both Julie
Chris and El
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So glad to hear your news, Julie. The pup Zanzi says Hi to your lot ! x
Fiona.
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No, the old site didn't have a thank or like function - but why worry about it when you may actually be the only person using it? If everyone starts thanking for every post it will become meaningless, won't it? I would never think to look at whether anyone thanked me - how would I know? Is there a list somewhere of who does or doesn't.
I think the biggest loss has been the feature that told us how many people had viewed a post - newbies and those who put up a query which is quite specialist must wonder sometimes whether they are being ignored. We need a campaign to bring it back - where's Horse lady when we need her?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Good news Julie. Keeping around the same mark is fine and not to be sniffed at.
I have spotted seventeen posts of mine you did not thank me for but I am not worried because deep down I know you would have done and I have to believe that! (Only joking is 18)
Thanks for posting this update and glad things are ok.
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Xxxxoooooxxxxxx
From Atlanta Ga. No puppies but 5 dogs a cat and 4 horses also producing a lot of poop!!
God news beans starting to work?
Xxx
Mo