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Advanced prostat cancer part 2

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User

Posted 17 Nov 2015 at 10:17

SS
I have fingers, toes and legs crossed hoping all is well today.
Remember last months drop of 3 was really more significant than you thought it had not gone back up 100+ as well. I am sure the Wiz will see that too.
The main thing is that Trevor is stil moving about OK, riding on the mower (and doing untold damage to your new nuber one asset) No, not the 101 dalmations the conservatory DUH.

I know you do all that smiley happy humour when deep inside your heart is weeping. Some days that makes you feel sick and vulnerable. I think I can safely say I know just how that feels. However, none of us can turn fate around, we humbly accept whatever cards we get dealt. It is how we play those cards and how we dodge the bad ones and glory in the good ones that really matters. I would not like to play poker against you!!

We are all here for you, heaven forbid that Lyn should ever feel the need to give T's prostate a withering look or kick your butt either for that Matter!! I do have a new snuggle blanket which I can lend you if the need arises xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Mo

Edited by member 17 Nov 2015 at 10:18 | Reason: Not specified

User

Posted 17 Nov 2015 at 10:28

Best of luck from us both x

User

Posted 17 Nov 2015 at 12:16

Thinking of you Julie and Trevor x

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

User

Posted 17 Nov 2015 at 12:51

All the best today Julie and Trevor.

I have a good feeling

Si xx

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

User

Posted 17 Nov 2015 at 13:09

Hi julie/Trevor.
PSA came down last time, it can come down again.Never give up hope! So so rooting for you both.
Lesley xx

User

Posted 18 Nov 2015 at 09:56

I am just going to do a quick summary because my internet keeps cutting out .

Scores on the doors PSA up to 486 from 457 two weeks ago so another small increase.

This is a bit like snakes and ladders and I never really liked that game and I don't like this one either.

Continue on with the Abbi with yet another review in two weeks, all other bloods good and BP is behaving itself.

So we keep going along the Rocky Road with small steps but keep going we will.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Nov 2015 at 10:39

I now the PSA is up Julie but you're not at the snakes tail yet, even if you aren't very high up that ladder.

Fingers crossed for you at the the review.

Is Trevor OK with it? Not stressing (I expect you do enough for both of you eh!)

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

User

Posted 18 Nov 2015 at 10:47

Julie SS
So I got my timings a little bit wrong in our online chat yesterday. 29 points up in 2 weeks is not too bad it is at least a little bit slowed down. I always think PSA is just a guidance that something is happening if Trevor continues to feel well has had no real side effects then I would think the Wiz will continue.

I will revert back to being a statistician for a moment. If the increase continued at this rate it would take 794 weeks or just over 15 years to get to 12,000 which I think was the worst figure T recorded a few years ago.

I know this has been a roller coaster ride for you too but in some ways you have been a bit luckier than some. If you consider how dire things were when T was diagnosed and add in all the other non PCa related issues, then I am sure you will agree your man has defied most of the odds for quite some time. In other ways it is harder for you as each day, week or month means that you are constantly worrying about what the next might bring. You will worry for your Boys and for all your family. I know that T can be a stubborn old goat too so that also adds pressure. I know you think the list of options is running out and that may be the case. However, sometimes a betting person will take a gamble on a risky option so the Wiz might be prepared to give low dose chemo a try. Or T might just say Enough is enough. All you can do is to continue to give your support and more important than anything else give yourself some TLC.

Of course you could not have just a simple standard hours job, no, no, no , your work comes in batches of undefined quantity. The bigger the batch size the more work and sleepless nights for you. Have you considered that you may need to plan for less of this as time moves on ? If you continue at the pace you have over the last 4 months or so you will be too worn out to function.

I just have one more month of gypsy rose in me and then I will be home for the foreseeable future. I can come and help whenever you need a break. I know how hard it is to actually come out and say " I just need a day all to myself" I also know how easy it is to deny yourself that opportunity, so I will not wait for you to ask I will just be there.

xxxxxxxxxxxxxxx Mo xxxxxxxxxxxxxxxxx

User

Posted 18 Nov 2015 at 20:42

Just spotted this update Julie. It seems to me that the variation is minuscule and maybe just natural variation around a steady state. Disappointing it is not going down but a glass half full person like me might say it is very good that it is not going up at all significantly. I understand the anxiety about the journey, from my own experiences but because I don't discount the end point but accept it as part of the journey then I can cope with the uncertainty. I hope you and Trevor can do the same. See where the next two weeks takes you! Thinking of you.

User

Posted 18 Nov 2015 at 21:36

Julie
This journey is painful, however short or long, those of us unknowingly in it for the long haul totally understand the shredded nerves, year after year, yes we are the lucky ones, but it takes its on toll. I salute you my friend, you have been so strong so far, keep on being strong Julie, the fat lady is not singing yet a while. I haven't updated my profile for a while, I find I don't have the energy, this is how I feel after so long looking over our shoulders. I really feel for you, it's exhausting.

Fingers crossed for continued very slow rises (I know we'd prefer reductions of course, and who knows, Trevor has been an enigma through this, so it's possible). I'm sure your oncologist will take the right action for Trevor, as Mo says, who knows what they might suggest when the time comes, anything is possible.

Thinking of you
Love Allison xxx

User

Posted 19 Nov 2015 at 20:07

Hi Julie
Sorry to hear of small increase of psa. Empathise greatly with strain this disease has on us all,it continually chips away at our energies.
Its good to see they're reviewing Trevor again in 2wks and that other bloods are ok.Oncologist may have a good plan that he wants to see you so soon. I always say don't give up hope.
Sending you a big hug Julie.
Take care.
Lesleyxx

(Allison, sending you a big hug also. You sound as though you need one too. I hope your hubby is still doing ok on the stilbestrol Xx)

User

Posted 01 Dec 2015 at 19:37

Hi Guys,
Since my last update I have had another BIrthday and it,s official 21again😉. I feel like 101 but my passport says not . I have gained an iPad which is pretty cool of course I need constant TEENAGE supervision to be able to use it, I have been busy making with friends with Siri or is it SUri 🙄.?
TIling is nearly finished in the new conservatory , new xmas TRee is still infuriatingly boxed this has never been known in our house for the tree not to be up by the 1st. November. I know this is way to early for some but trust me for those of us with the very real and painful condition M.G.X.T. UP.ASAP . It can be very dangerous to stop an addicted XMas decorator in there stride.
So SCORES ON THE DOORS up again from 486 to 508 I won,t bother to add the points it does seem to be following a slow but relentless trend . The WIz is more than happy to continue on ABbi so onwards we go. The WIz is happy that T is looking and feeling good despite the rises, and we are also happy that there is no change to the regime and how he feels.
Thanks for all replies
BFN
Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Dec 2015 at 19:59

22 points increase bah humbug SS

But the wiz says stick with it and so you must.

Think back 2 years and the current must look positively wonderful.

I will be home soon with a tan almost as good as T's so coming to visit with a Mo food parcel. I will call to arrange my viewing of the conservatory, the Xmas tree and my mistletoe X's with you all.

Xxxx
Mo

User

Posted 01 Dec 2015 at 20:52

As I said on the last test this is a small almost insignificant rise and quite right you should continue as before. No sign of doubling here and the rise is marginal and may just be something else. Trevor remains well so I would take it and get on with Christmas preparations sounds like the whole month is needed.

User

Posted 01 Dec 2015 at 21:22

Happy birthday fellow iPad user!
The most important thing is that the Wiz is happy to keep on with the current treatment Julie and that T remains his usual self, so as Paul says time to enjoy the forthcoming festive season with your lovely family.

Lots of love
Allison xxx

User

Posted 01 Dec 2015 at 22:17

Oh Dear just had a huge row with Siri and now we are not talking.

Conversation went like this.

Hello Siri - What happened to my smiley faces?

Siri- What Faces

Me - On the PCUK Forum , I put smiley faces

Siri- I added the faces

Me- There was no smiley faces added

Siri- Oh yes there was

Me- Oh No there wasn't

Siri- Are you arguing with me

Me - Absolutly Frigging right I am

Siri- I don't understand Frigging

Me - Frigging as in really cheesed offhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Siri- Sorry I didn't understand that , would you like me to call home.

Me - No I am home

Siri- What are smilies http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Me - Are you trying to wind me up .

Siri- YES

Me - You are really getting on my tits know.

Siri Is there a smiley for that.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Me - That's it I am switching you off.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

Siri- Hmm just try it, you won't be able to do it without a teenagerhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-foot-in-mouth.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 01 Dec 2015 at 22:33

Hilarious, me no Siri don't talk at all, no siree. we don't understand each other, my West Country burr simply isn't understood. Ah well.

User

Posted 17 Dec 2015 at 23:44

I am just going to go with what is in my head GUys so if this a little bit random . 😮 Ok so I no you are thinking what Julie random ( this can,t be ) she is so sensible and Normal.👻
YAY I have found new smilies (teenagers they are fantastic)
I have sacked SUrri he is so rude and controlling.

So firstly a very happy and MERRY XMAS to all I haven,t posted as much a lot like Alison sometimes when our journey ,s are long and winding we need to sit back and take stock. Life in the long haul can be very winding and as described it certainly is a rocky road.

I can,t believe a whole year has gone by ( well almost 2 weeks to go) and we haven,t had a blue light incident. LORD A MERCY. 👏
So conservatory is fab (T calls it my Ivory Tower) YEP too true. I love it 👏
So here I am in my IVory Tower , tree is up , decks are sorted, turkey (half price at M&S ) sprouts are on🤗
Life goes on as near normal as we can make it, but life for all of us with advanced PCa will never be normal we live each day thankfull that we have one extra day.
keep going GUys get those sprouts on and tinsel that tree . Love you all.😍
BFN
JULIE X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Dec 2015 at 07:51

Awwww, lots of love to you, T and the family Julie - I can't think of anyone who deserves some peace and rest more than you xxx

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

User

Posted 18 Dec 2015 at 07:54

PS - while jet-setting I somehow missed your argument with Siri - brilliant stuff!

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

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