Advanced prostat cancer part 2

Best of luck from us both x

All the best today Julie and Trevor.

I have a good feeling

Si xx

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

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

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

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

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.

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

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