Advanced prostat cancer part 2

User

Posted 18 Dec 2015 at 07:57

Hi MM
Glad you've still found some Christmas spirit. El and I are not naturally xmassy people but we have a VERY excited little boy at home and I'm daily trying to take myself back to that place so as not to be a misery guts. So this year I even put lights up outside for the first time which made everyone happy. This time last year I was having a template biopsy. Yesterday I had a 90 minute MRI of my adrenal glands. Hopefully last thing this year. In between has been awful and draining for us both. But nowhere near what you are going through. I will be sending Xmas cheer your way , to light your lights and warm the Ivory Tower
Chris

User

Posted 18 Dec 2015 at 09:17

Happy Christmas to you too Julie, Trevor and family.

Ivory Towers eh? I have my craft room(S) (I have also moved some of it into the smallest bedroom) and they are where I go when it all gets a bit too much and I don't have to put up with anything like you do.
I am currently having a huge clear out and tidy up and so John refers to himself as a craft widower.

I wasn't in a Christmassy mood this year and really couldn't be bothered to put up lights and trees etc but John wanted them up so started gradually and we now sit with all the lights on when it's dark and it has helped me gain a little Christmas spirit.

Best Wishes to you and yours.

(I have Cortana. She has an irritating voice and sounds patronising but she doesn't argue cos I AM BOSS!)

Edited by member 18 Dec 2015 at 17:09 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Dec 2015 at 10:54

NOOOOOOO it must be a Siri conspiracy

Like Lyn I never even saw the arguement, methinks some little vixen in the cloud tinkered with it?!!

Always good to know that teenagers do have their uses, my only Grandson is now 21 so he has morphed into the useless brigade. Si's twins are not quite at teen level so I can't employ them and my only familial teenager lives in Elgin, so just a tad too far away to be of any legitimate input.

I tried using youtube instead of those irritating in house software nerds, it is a wonder tool for so many things. I am constantly amazed to see so many people willing to make videos of themselves giving one on one coaching. I changed the sink in my bathroom using a youtube demo, I just fixed a really annoying drip from my kitchen tap thanks to a youtube video (plus a knowing bit of advice from a rather nice and helpful male human)

I replaced the spotlights in my kitchen ...yes you guessed it, following a youtube video and also the manufacturers instructions (amazing that we Women actually read and follow these, almost like it was meant to be that way!) I have got one or two rather larger projects I could start so maybe there will be a new app called wetube or really?tube or something. Although I am seriously considering abandoning my new found DIY talents and moving into a new home instead.

Now if Mick could read your latest post about the no blue lights in 12 months he would be really pissy ...his one and only trip by ambulance to hospital in his whole life and the ambulanceman told him no blue lights with a spinal injury, just a slow and careful drive, he spent the whole trip singing nee nah, nee nah, nee nah like a demented minion. I saw that ambulanceman recently at the hospice. I was sure he hadn't recognised me until he walked past me going nee nah, nee nah and making flashing light gestures above his head !!

So the ivory tower is decorated and you are all getting ready for another Christmas and it is another one which you never expected T to share with you all. Your remarkable story should give hope to others who feel they have none. I know how draining it all is, the constant anxiety, the everyday interference with life in general but you my lovely friend just soldier on, laughing smiling and being you. I know your family really appreciate that more than you will ever know.

May you have a very merry Christmas, indeed as Lyn says you thoroughly deserve it.

Lots of friend love, kisses and hugs

xxx

My ancient android doesn't like to do smiles, I call him Marvin

Edited by member 18 Dec 2015 at 18:36 | Reason: Not specified

User

Posted 18 Dec 2015 at 16:59

Have a great Christmas Julie with your family. This journey is a rollercoaster but still has plenty of time to run. I am about to celebrate Christmas just waiting to get passed my onco appointment next week. Have a great time.

User

Posted 18 Dec 2015 at 19:44

Hi julie

This lifted my heart, Christmas is that time of the year for us, diagnosis came on Dec 23rd (2010), so it has its downsides in our house, still, all pressies are bought, food ordered, just the booze to get so Christmas 2015 is going to be great.

Big love from us

Xxxxxx

User

Posted 18 Dec 2015 at 19:52

I think John's diagnosis was delivered on the 22nd December - i remember being told all the nurse specialists had finished until the New Year so there was no one available to call us. Perhaps urology depts get a chrustmas bonus for increading their detection rates?

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

User

Posted 19 Dec 2015 at 10:23

Have a great Xmas Julie and everyone else...
I recall being sat in the urologists office on xmas eve 2012 discussing open surgery as an option....
Must be a common theme...Si was also a December dx

Bri x

User

Posted 19 Dec 2015 at 10:55

Yep, phone call on the 23rd not my best Christmas.

Have a great one Julie and pass on our best wishes to Trevor and the boys.

Si xx

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

User

Posted 30 Dec 2015 at 22:43

Scores on the doors up again PSA now at 566 , the Wiz is still holding steady and we continue on with Abbi for another 2 weeks. I have given up hope of the big drop that some have seen on the magic beans. The positive that I am taking from this slow but relentless rise is that just maybe it is stopping it from sky rocketing away. So to be honest the Wiz is doing exactly what she promised two and a half years ago , she said I can't cure you but I can buy you time.

Two and a half years ago I didn't think we would see Xmas 2013 and here we are on the Eve of 2016 so for all of those with a dire diagnosis never give up hope keep going forward with everything that you have. Our road has been rocky there has been a fair few boulders along the way but the extra time that we have had with the various drugs that T has had is priceless.

He hasn't been so good the last few weeks just more tired and a bit more pain but certainly able to unwrap his Xmas pressies , he forced himself to polish of a bottle of wine and half a bottle of Baileys(not bad ehhh)!

I would just like to wish each and every one of you the very best for 2016 Happy New year to you all my cyber friends long may we all continue to support each other.

Getting a bit tearie know so I am off

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Dec 2015 at 22:58

New Year wishes to both of you too Julie

Well the Wiz has kept her word so far, let's hope she still has more magic up her sleeves.

All the best

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Dec 2015 at 00:02

Hey, way to go Julie. PSA still steady so enjoy the start of another year. Time does go by and each passing day brings more memories, more opportunities and more hope. I know where you are at as I am too but let,s enjoy this ride.

Happy new year to you and yours.

User

Posted 31 Dec 2015 at 17:14

Hi Julie

So pleased to see Abbi is holding the PSA, Hoping you and Trevor and the boys and Dora, Lilly, Wilma, Plum, Sydney, Kitty, Mable, Elvis, Yoda, and whoever we have missed have a great and healthy new year.

Love from us all here.

Si x

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

User

Posted 31 Dec 2015 at 17:15

Wishes to you all
Chris El

User

Posted 31 Dec 2015 at 17:47

Julie, you do such a good job of pretending life is a big bowl of chocolates and you are allowed a few tears now and then. The problem with magic is that we know it probably isn't real and although every new year that comes along is a reminder of the gifts we have had so far, it is also a marker that the coming year may be the one where the magic runs out. When the children were small I loved that they were so excited about Santa but then immediately felt sad that by the next year, they might know the truth.

Lots of love to you and all the family for a magical start to 2016 xxx

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

User

Posted 01 Jan 2016 at 16:42

Lovely Julie

The dawning of a New Year did that to me too. Been a bit of a horrible few days, I'll update about it shortly. I'm finally at home, hubby comfy in his own bed, dogs snoring next to me, nice cup of tea in hand and appreciating the good things in life.

Lots of love

Allison xxxx

User

Posted 01 Jan 2016 at 16:57

Thinking of you Julie, best wishes to Trevor and you for some good times still to come.

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 01 Jan 2016 at 17:24

Julie my lovely SS

I am back at home now and will call you in the next day or so, we have talked about the long and winding road many times together. Every time you get to a sharp corner you slow down a tiny bit but still manage to get round it, 2 wheels off the ground, tyres screeching and oncoming traffic diving for cover!

We know that one day that corner is going to be just too big an ask, but for now you will still make it round them.

Tearful moments are expected they happened many times for me too, that is because we are normal human beings.

PSA is still in check and the Wizz is happy with that.

We are all here with you Julie

xxx

User

Posted 05 Jan 2016 at 23:39

SS you so nailed that with your post I feel like we have screeched around so many corners , skidded and slidded and each time we have somehow not sure how managed to get to the home run safe ready to fight another day.

So Ok now there is only 3wheels left on the wagon with a 300 point increase in PSA since starting Abbi in Sept, but in the words of the song (lots of you might not no the tune so Google 3 wheels on my wagon)

Here we go for those that haven't been on the forum very long I make no apologise for my sense of humour😮 I do like a sing song.

Three wheels on our wagon

And we're still rolling along

That PCa is chasing me

But I'm singing a happy song

I'm singing Higgity,haggity,hoggity Hi

Pioneers they never say die

A mile up the road there's a hidden cave

And we can watch PCa go galloping by

The words of this song just sort of encapsulated our journey of course ( if you google it ) it does go down to no wheels on our wagon but we are not there yet so my friends Higgity, Haggity, Hoggarty HI. Keep rolling along.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Jan 2016 at 03:21

I just had to singalong made me smile

Regards

Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 06 Jan 2016 at 06:43

Love your spirit Julie.

Yes, you know that it will beat you in the end but by God you're making it work hard.

Enjoy every precious day as you are doing. You are very lucky to have each other and your family and I know that this situation must be a heavy burden to bear for all of you but I admire your courage and your dignity at every turn of the wheel.

We can't control the winds - but we can adjust our sails

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