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Advanced prostat cancer part 2

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User

Posted 11 Mar 2015 at 21:25

Hi julie

just been catching up on your posts sometimes I hold back from posting Lynn has alredy said about the drop in psa.

If you remember Erics psa kept falling to the best it had ever been.

Trevor and Eric both with heart and other medical problems still feel Eric should never had chemo but on abby.

Hope i haven't upset you and I agree not to burst his bubble just keep him happy and please take care of yourself please.

Thinking of you both often

Carolxx

p.s. Looks like you have a new friend posting lol.

User

Posted 12 Mar 2015 at 18:55

It's lovely to hear from you Carol, I hope that life is getting easier and you are finding some strength to get you through. Please never worry about posting things that might upset me . It is important for others to read that a falling psa with no new or extra treatments can be a sign that the cancer is advancing.

I was glad that Lyn mentioned it , as newbies may not be aware that this can be the case. It was my first thought when Dr T announced the drop.

I am going to do an update soon but just wanted to say hi.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Mar 2015 at 19:09

I have just been reminded very tactfully by a dear friend (I wont mention any names) but he wears a cape and does an excellent taxi service.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif that I haven't updated in a while. So here goes.

Life well its pretty good, the days are getting warmer, the nights are getting lighter summer is on its way and we are fast approaching our Cancerversary of 2 years in May who would have thought it. Certainly not me.

Trevor's breathing is well remarkable in fact better than it has been in years, what ever they gave him in the hospital (he described them as HORSE antibiotics have worked a minor miracle. After all that time of nebulisers and steroids plus the baby Aunty Bs , well as the saying goes Today is a good day and yesterday and the day before that and as for tomorrow we will face that when tomorrow gets here.

Who knows he may be back on the ride on any time soon.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Next Onco visit is 10th April so a few weeks away, all good wishes will be gratefully received.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif I have had some minor and I stress minor worries, he banged his leg a few weeks ago and it came up like an egg (you know when a child knocks there head) it was his knee so of course I immediately thought OH CARP knee Cancer. He got really angry and said NO I have just smashed my knee in the barn door. I am trying to keep an eye on it quite literally (without him noticing) but it is a bit of a give away when we are having a conversation and I am staring at his knee.

He also seems just a tad more tired ( again not really sure why I am surprised) maybe I just enjoying worrying.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif then there is the colour I am not sure if any one has noticed and I may have mentioned it a few times Trevor is of Ethnic persuasion http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif I have to stop laughing at my own jokes. The paramedics always ask is he going blue.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif That puts a whole new meaning on the term coloured fella , well can't quite explain it , but not as brown as usual kind of washed out, can't use brown as a descriptive either that's not right or allowed so not as Black as normal .

I will be mentioning all of the above to our Onco, it could be a very colourful appointment.

We have a fun filled and busy Easter planned, family gathering, Si Superman visit with the twinshttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif . Dog shows and Easter egg hunts, one thing I still get the collywobbles with is planning anything in the future because when you only live for today it is a bit difficult but as a very special guy said Life Is For Living. So I am know back into the planning ahead mode.

Much love to everybody.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 25 Mar 2015 at 20:58

Julie SS

I am no knee expert, I do have two actually one on each side and they sort of hold the top half of my leg to the more useful bit. I know when you bump one it bolody hurts and swelling often ensues. As to watching it intently I can promise you that does not make it or anything else go down (as far as I know and IMHO) I have no smiles on my tablet or I would put one or two in now and then.

As for Trev's colour then it has to be a tumeric side effect, that or a lack of action on the ride on in the sunshine. Or not enough of my jerk chicken and carrot cake? I bet as soon as he gets outside in the spring sunshine he will start to go a little darker I always do?!!

I know the cancerversary's are always here for someone but I have to say celebrating 2 years with you and Trevor is going to be party time for me .. I never ever would have thought it possible with such an outrageous PSA and other results at diagnosis. All those blue light rides, heart issues and asthma a thousand and one puppies later and here you both are. Shamazing I love you funny, warm, bubbly and slightly crazy Lady

User

Posted 25 Mar 2015 at 22:15

Oh julie

You are truly a ray of sunshine. Can't quite stop laughing at the idea of your gaze constantly seeking out Trevor's knee, it's quite weird actually and he must feel like he's got a stalker for a wife. Hopefully the swelling will go down but I do find everything takes longer as you get older, including swellings going down... Frankly, we are sitting watching telly with John sat with his Pjs rolled up with cold flannels on his ankles to reduce both swelling and intolerable itching, between you and me, it's not a pretty sight, blooming side effects eh?

I will be with you in spirit on the next visit, I am so grateful to be able to wish you a happy cancerversary, here's to many more of them.

Lots of love

Allison xxx

User

Posted 26 Mar 2015 at 10:03

Hi Julie,

So happy to read your update, certainly it has been a good news week, from Bri (more still to come) Kevlaa and now Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Girls are really looking forward to coming down but thanks to Mo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif i feel i need to come bearing gifts, now this carrot cake thing i am sorted, cake mix and some carrots http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif but what is gerk chicken, i have the chicken but cant find gerk anywherehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Mo should i be looking in the freezer or is it a tin, the girls at sainsburys looked at me as if i amhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif nuts.

Would Trevor be happy with a peanut butter sandwich i promise to put turmeric on it.

Love from us all here

Si xx

PS cant wait to see the lumpy knee

Don't deny the diagnosis; try to defy the verdict

User

Posted 26 Mar 2015 at 20:18

Julie,

Best wishes for the next appointment. Perhaps you can train your puppies to pull the ride on with Trev aboard resting the knee ,getting some vit d from the sun.

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

User

Posted 26 Mar 2015 at 22:20

Julie I had a vision of you and Trevor having a conversation whilst laying in bed. Trevor saying "it's swollen from banging it" but of course he can't see you as your head is under the duvet staring at it and making muffled noises.

Si if you are struggling to find some gerk....why don't you try some gerkin and make gerkin chicken instead ;-)

Good to hear the two year anniversary is upon you.

Bri x

User

Posted 26 Mar 2015 at 23:24

Julie, your posts, whatever you are writing about, always make me smile, I remember Shirley asking an American, of Trevor's ancestry, how they spot a bruise and apparently it goes a purply colour!

Good luck with the next Onco visit.

Chris. xxxx

User

Posted 07 Apr 2015 at 22:07

I know I am a bit late in the day but HUGE HANKS for all your replies guys, I know I say it many times but I dread to think where I would be without you all , you really are my support network my safety net to catch me when I fall.

So what has been happening well the knee has healed so I think we can safely say that it was just me being overly dramatic as usual and knee cancer is not on the very long list of Trevor's very long list of Comorborties (sorry I can't spell that)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-embarassed.gif .

The breathing is still Good I can't quite believe it after such a long time with the steroids and Auntie Bs , it really is a one hundred and ten percent turn around. I could get tearful at this point because his Asthma is pivotal to how he functions day to day . He has struggled so much throughout out our Pca journey with his breathing that it is just a minor miracle and a miracle that I am so grateful for.

So blood test done today ready for onc visit on Fri, my dillema is this if the psa has had a further unexplained drop do I

A - Go into over drive and ask for further testing obviously thinking that we are in shark territory.

B - Let Trevor be Happy

C- Try and talk to our Onc on the quiet (this is not going to be an easy option)

D- keep going regardless.

BFN

Julie X

Edited by member 08 Apr 2015 at 10:08 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Apr 2015 at 22:40

B definitely - and C if you get the opportunity xxx

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

User

Posted 07 Apr 2015 at 23:24

Julie and Trevor,
Good luck for Friday.

I'd say B, and yes C if you are able, and an E for you entertaining us.

Big hugs,

Chris.

User

Posted 08 Apr 2015 at 07:38

It might depend on how he is feeling on the day?

But, B and C sound good.

Hope it goes well for you both.

dave

User

Posted 08 Apr 2015 at 08:29

Hi Julie

B C sounds good and of course

H. for that wicked humour of yours

good luck for friday.

Carol x

Edited by member 08 Apr 2015 at 08:35 | Reason: Not specified

User

Posted 08 Apr 2015 at 08:55

It's a B from me too

Good luck for Friday

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 08 Apr 2015 at 09:49

Good luck and best wishes for Friday

Arthur

User

Posted 08 Apr 2015 at 13:08

Hi Julie & Trevor,

Just wanted to wish you good luck for Friday. I'll be thinking of you both.

Steve x

User

Posted 08 Apr 2015 at 13:20

You will do D and C regardless so let Trevor be happy too! Hope all goes well Friday. Look forward to some good news!

User

Posted 08 Apr 2015 at 14:24

Julie

dismiss A (nothing you can do to change it)

definitely B ..you just had to see that huge grin on Trevor's face when he had all his sons with him over the Easter weekend. He is happy, very happy so let him stay just as he is, after all he has been through he deserves to be

C .. maybe if you get a chance as it may at least give you some indication of what, why etc.

D .. my Dearest is just you all over, it is you, it is what you do and always will do Nuff said.

Others have given you E & H so for my part well there are only 2 letters I can give and they are both a lot further down the alphabet and are both the same..... SS my Soul Sister.

Make sure you also create time for you to be happy, I know just how hard it is for you to stop for a while and think of just you ....

I might be sitting thousands of miles away on Thursday when Si Si superman has his review and on Friday when you see your Onco but for every second you will all be in my heart and I will be thinking of you. I will be checking in here as soon as I land at Gatwick on Saturday morning and can get WIFI and will call you and Si as soon as I can.

love you Shamazing Lady

User

Posted 08 Apr 2015 at 20:31

Hoping all goes well for Friday Trevor and Julie.

Julie I am sure you will choose to do what is right for Trevor....you have so far :)

Take care

Bri x

User

Posted 09 Apr 2015 at 21:31

Everything crossed for tomorrow Julie hope the PSA is stable.

Will drop you a message about next week

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 09 Apr 2015 at 22:54

Good luck, tomorrow.

Paul

Stay Calm And Carry On.

User

Posted 09 Apr 2015 at 23:08

Hi, Julie, just want to say good luck for tomorrow and hoping Trevor skips to Zippidy Doo Dah all the way down the corridor again!

Steph.

User

Posted 10 Apr 2015 at 06:29

Hi Julie

you are both in my thoughts today on saying that I think about you often.

GOOD LUCK.

Carol x

User

Posted 10 Apr 2015 at 23:31

How did today go, hon?

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

User

Posted 11 Apr 2015 at 00:38

OK Scores on the doors Drum roll please 53.1 down from 81 so in football terms PCA 0- Turmeric 10. I thought I would get that out of the way before I started to waffle.

What a day just getting out of the front door in our house is a major army manouvre , 13 dogs to feed , water , loo breaks, our house in the mornings puts a whole new twist on the word CHAOS and then there is the boys as it is Easter break they came with us this is the first time that they have been with us on a Onc visit, they have both been with Trevor for his Zometa but not for the important bit, ( I have chewed this over all week , the should they be there or not scenarios ) and after many sleepless nights I decided , we are in this together The Good , The Bad and The Ugly. It could have gone either way but today was the good.

So thanks for the voting guys, it was much appreciated B was easy , C was harder but I managed to accomplish this with a bit of quick thinking.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

Dr T actually admitted today that Trevor is the highest starting psa that she has ever had at 13000 he is apparently famous in Peterborough hospitalhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif , she is also amazed at how well he is doing, quite frankly so am I.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif So 53.1 Abbi delayed yet again, anything that can give us a bit more time before stronger treatments is a WOW in my book. We always have the worry of how well Trevor would cope with the stronger drugs , the heart issues are always never far behind us. She wants exact measurements of how much Turmeric Trevor is using , what he uses it on ( I thought this could take a while, you could get the whole days Menu) . http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif.

So next visit in 12 weeks with a full dosage report on the Turmeric, she is really hung up on this , midway psa test so in 6 weeks .

Here is the sneaky bit , I needed to see the whites of her eyes so I knew it had to be in person, we all walked back to the car , I waited for them all to get in then I pulled the weak bladder trick . "Just going to the loo guys , I won't be a minute" . I just caught her before she left and explained my concerns. She knew exactly where I was coming from and is happy that the drops are from stopping the Bicalutamide, she again mentioned the Turmeric. I managed to spend about 10 mins with her and she answered quite a few things that I needed answers too. So for know I am happy with that.

Trevor is very happy he has even bought some new shorts at Matalan I did question this as he has never worn shorts in his life but I thought Hey Ho at least I can keep an eye on his Knee .http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 11 Apr 2015 at 01:01

You're one crafty lady! Well done, Julie and Trevor. Keep it up!

Paul

Stay Calm And Carry On.

User

Posted 11 Apr 2015 at 07:33

Glad to hear it was a good day, I can't comment on Trevor's knees though, is it a threat for Leicester? I trust everyone slept well last night?

A turmeric question, I have read much about benefits and I don't mind the flavour but I do not want every meal yo taste of it, I take pomi-t which has it in but what does Trevor do, thanks? 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 11 Apr 2015 at 07:52

Hi Julie & Trevor,

That's really great news! Congratulations.

Long may it continue.

Have a great weekend.

Steve x

User

Posted 11 Apr 2015 at 08:08

BOOM!!!

What great news to wake up to. Well done Trevor

With regard the turmeric it will be quicker for you to list the things the Trevor doesn't put it on http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

looking forward to seeing you next week.

Si xx

Don't deny the diagnosis; try to defy the verdict

User

Posted 11 Apr 2015 at 09:41

Well after a few tough weeks for a number of us, this is apparently a good news weekend 🎉 🎉 🎉

Love to you all xxx

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

User

Posted 11 Apr 2015 at 10:25

Hey Julie. What great news, this is a great return. Brave but I think right to take the kids less mystery the better for me. It's interesting that the drops are attributed to ending casodex whereas my drops are taking it, so maybe I might get same effect when it starts to rise again.

Great reporting as always, sneaky manoeuvring which worked great. No doubt turmeric on toast for lunch! Enjoy your weekend.m

User

Posted 11 Apr 2015 at 10:52

Brill news....I also think you did the right thing taking the kids.
sounds like you will all have a wonderful weekend

Take care

Bri x

User

Posted 11 Apr 2015 at 11:43

Very good news for you all...

I have been following your story Julie, but will admit that most of Trevor's ( and others ) treatments have gone way over my head, so I don't feel able to add any meaningful contribution to your posts.

I can only admire the way you and many others are all dealing with what life has thrown at you.

You are all an inspiration to me with your approach and attitude to this disease...

Enjoy your weekend

Best Wishes
Luther

User

Posted 11 Apr 2015 at 12:46

to borrow your response to me SS

xxxxxxxxxxxxxxxxxxxxxxxYAYxxxxxxxxxxxxxxx

back on tera firma

User

Posted 11 Apr 2015 at 13:29

Hi Julie

Have read your husbands history and remarkable progress, I am so pleased to see the latest results and am so pleased for you and your family

Lesley xx

User

Posted 11 Apr 2015 at 19:05

Turmeric and suntan lotion, for the knees, ankles and foot-tops.

Excellent news, have a great weekend.

dave

User

Posted 11 Apr 2015 at 22:36

WELL DONE TREVOR and Julie. XXXX

User

Posted 12 Apr 2015 at 21:47

Ah brilliant news Julie and good on you for being sneaky and sensible. I hope the answers to your questions were what you needed to hear too.

Your posts make me laugh out loud.

Lots of love

Allison

User

Posted 08 May 2015 at 00:51

CANCERVERSARY WHOOOOOOOOOOOOOOOOOOOW 2 YEARS ON. Stick that diagnosis right up your backside. Stuff you Cancer. I said it last year and I will say it again who would have thought it, certainly not me and certainly not our Oncologist. Sometimes some people will defy the odds. OK so I will bore you all and repeat myself 4 heart attacks, 8 stents, 1 stroke, chronic Asthma. psa of 13000 and advanced pca , sorry forgot the phneumoniahttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif. (couldn't spell that and life is to short to go to spell checker). There must be some kind of medal , I can hear you all thinking (she is making it up, no one could survive that) trust me he has and I am not. I am making light of it as usual and yes life has been and still is pretty tough but my goodness I hope that our story can give hope to so many people, with Trevor's 1st heart attack he arrested on the table and that could have been and so very nearly would have been the end of the story but Trevor being Trevor he hadn't finished with life .

How does he do it , I have no idea he certainly is no fitness guru, not like some of the guys on here , yes he has always eaten a healthy diet but c'monn even eating fish and olives 5xtimes a day couldn't pull you through that lot. 2 years ago he could barely stand or walk unaided his pain level was pretty much a 9 out of 10. Yesterday he helped me drag in a 12 kg bag of dog food.

I don't have answers , he is as much a mystery to me his GP his Oncologist his heart Dr and every on else he has come into contact with I sometimes wonder if it is because he never stops talking maybe he just hasn't finished his story .

What ever it is that keeps him going I would be a millionare if I could bottle it, I do make light of it but there has been many and I mean many scary bluelight moments along the way but here we are 2 years on from the big C word. I did do a post about TIME and how grateful I am to have this extra TIME and how important it is to cherish Time , it is the only thing that you can't buy, make the most of it . Please don't waste time it is so precious.

Laughter is my mantra, no matter how hard life gets humour will always see me through I know some will find that hard to comprehend but for me it works. Never Laugh at a live Dragon. Cancer is the Dragon and yes Dragon I am laughing at you.

Tomorrow , Tomorrow is another day and yes it could all go tits up but TODAY is a good day.

For all those Soul Divas out there I dedicate Chairman of the Board , GIVE ME JUST A LITTLE MORE TIME.

BFN

Julie X

Edited by member 08 May 2015 at 01:17 | Reason: Not specified

NEVER LAUGH AT A LIVE DRAGON

User

Posted 08 May 2015 at 01:24

Incredible, Julie.

Send him my best wishes. Here's to many more years.

Steve x

User

Posted 08 May 2015 at 06:37

Well done Trevor and Julie...whatever you are doing keep doing it.....I also think your postings helps others immensely Julie.

Chairman of the Board...now there's a blast from the past

Take care

Bri xx

User

Posted 08 May 2015 at 08:14

What a fantastic post to read, such an inspiration to others.

Happy anniversary to you both, in the words of Bill Withers have a lovely day! 😃

Maureen x

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 08 May 2015 at 08:48

Trevor and Julie

What an encouraging post

Best wishes

Arthur

User

Posted 08 May 2015 at 09:16

Julie my SS, friend and comrade in laughter. ..you are just the best ever giver of hope. Trevor defies medical odds as a handful of other Men here.

Love,laughter and living you both excel at all three.

Without your support and that of others on this forum I would never have got through the last 2 years and yet because of people like you I have.

We share the hardest times to try to lighten the load, we laugh and cry together and some would say create a fair bit of mischief too !

You are one amazing woman and I love you for everything that you are and everything you are destined to be.

Looking forward to this weekend and of course Leicester where I am sure together with some of our other mischief makers we will laugh at that dragon together.

COTB ..interesting choice and Bill Withers too .. I will go for someone a little less well known but a very fitting song just for you ... Time in a bottle by Jim Croce

Xxxx

User

Posted 08 May 2015 at 10:02

Such great news, Well done Trevor http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Look forward to seeing you both tomorrow, i think a Fosters is due tomorrow .. of course with a sprinkle of turmeric

Love from us all here

Si xxx

Don't deny the diagnosis; try to defy the verdict

User

Posted 08 May 2015 at 12:07

WOW! WTG TREVOR & JULIEhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

CONGRATULATIONS TO YOU BOTH.

Two great comments in there:

"Stick that diagnosis right up your backside. Stuff you Cancer."

and

"Laughter is my mantra, no matter how hard life gets humour will always see me through I know some will find that hard to comprehend but for me it works. Never Laugh at a live Dragon. Cancer is the Dragon and yes Dragon I am laughing at you."

Si has a good one too: Don't deny the diagnosis; try to defy the verdict.

And everyone knows mine.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

"BOLLOCKS TO PCa"

I think this defiance helps us combat whatever we're facing.

Wishing you both many more happy years and really looking forward to seeing you, Julie, for the first time at the big bash in June.

Vey best wishes,

George & Lynn

B2PCa

User

Posted 08 May 2015 at 13:32

Trevor & Julie

Keep enjoying life, I know I do! http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Nil desperandum

Allister

User

Posted 08 May 2015 at 20:03

"I sometimes wonder if it is because he never stops talking maybe he just hasn't finished his story"

Julie, you took my breath away with this. Maybe that is how it works, when I look back at dear friends now lost but who showed the most phenomenal strength and grit (Spurspark, Old Al, TG, Nimeton for starters) they just held on because they still had a story to tell. Stan on the other hand wrote his final chapter and just quietly closed the book.

You always manage to give me a new way of thinking about something xxx

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

User

Posted 08 May 2015 at 21:53

Lovely post Julie and some wonderful supportive comments above. It's a great story of survival and long may it continue. Hope to see you both soon.

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