My 3 men contd

User

Posted 09 Jan 2016 at 08:53

Hi lyn

Have a fabulous holiday and a well deserved break, am very jealous!! ;-))

Lesley x

User

Posted 09 Jan 2016 at 18:16

Lyn,

Have a great break. I spent a few days in the Gambia mainly in Bathurst (since renamed Banjul) many years ago on business. At that time there were only a few tourists and one could walk about safely without being pestered by vendors. My daughter went more recently after more hotels had been built and tourism increased vastly. She was advised to stay within the parts of the beach flanked by security guards. Incidentally, she took Lariam as a prophylactic for Malaria and had severe long lasting effects from it.

Barry

User

Posted 09 Jan 2016 at 21:11

Wow Lyn, don't blame you and what you don't know can't hurt you. Hope you and John have a wonderful break

Lots of love

Allison xxx

User

Posted 09 Jan 2016 at 22:49

Seize the moment Lyn

have a terrific time, never been to the Gambia but very keen to hear all about it from you.

all the very best special Lady

User

Posted 10 Jan 2016 at 02:43

Hi Lyn. Good decision. Hope you have a great time. I like the way you keep everything in perspective. I become panicked when any results tests, appointments are due and let it monopolise all my time and energy. Quite possibly ours may be a similar journey to John's although we are earlier down the track and Erwell is quite a bit older . I can only learn and take comfort from others. Cheers Georgina

User

Posted 17 Jan 2016 at 15:20

Gambia was superb, we know the place well and have managed to get there every year since John was diagnosed. It is a different holiday to our others; generally we go on holiday to be very insular and spend all outer time together but in Gambia, John spends days trekking through the undergrowth bird-watching with our favourite guide while I combine poolside reading with a bit of work-related research. Bliss on all counts.

Back now and we have onco Tuesday and a small op for me on Weds - and a website to design for the birdwatching guide.

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

User

Posted 17 Jan 2016 at 15:38

Sounds heaven Lyn. So glad you had a lovely time and relaxation. Count Elaine and I in on any birdwatching stuff. We love twitching at an amateur level.
Good luck Tues
Good luck Weds
Good luck !
Chris

If life gives you lemons , then make lemonade

User

Posted 17 Jan 2016 at 19:20

Glad you had a good holiday.

Good luck to both of you for Tuesday and Wednesday.

Keen (but generally useless) birdwatchers here too

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

User

Posted 17 Jan 2016 at 19:54

Lyn

welcome back we missed you!

My brother is the big birdwatcher in our family, I must admit I really enjoy the bird observations I get to do in France when cycling with him and my SIL. I can't really call it watching as I dont actually go out looking specifically they just seem to happen along. I do get very happy when I actually see and identify one correctly though!

Good luck to both John and yourself with your appointments.

User

Posted 18 Jan 2016 at 02:43

Welcome home, Lyn.

Glad you had a nice trip.

I hope the appointments go well for you both this week.

Steve x

User

Posted 19 Jan 2016 at 18:30

It turns out the appointment was a mistake, the onco doesn't want to see John until the end of February so it was a wasted journey. Very disappointing news while we were there though - John will not qualify for the trial as the criteria are a PSA of 0.2 or above after RP with adjuvant RT. Salvage RT does not qualify.

So new plan offered - PSA test in Feb, choline PET scan and then decide what to do next.

The other thing he mentioned was that the Leeds hospitals are getting new lab machines this year so PSA tests may be a bit all over the place for a while - good to get some baseline tests in first. Also that a patient under him and Liverpool gets a much lower reading in Liverpool than at Leeds .... the differential being significant enough that they nearly put him back on treatment thinking that he had had a sharp rise :-(

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

User

Posted 19 Jan 2016 at 18:54

Just goes to show ....... as is often communicated on here , that interpreting such tiny figures can actually lead to unnecessary treatment and mental turmoil. Also Lyn did you get detail on the CholinePET as has been discussed by members ? It's a very rare offering as you told me , but why is one area saying it is ineffective below PSA 3 and then another offering it at a PSA <0.1 ??
In fact I'm becoming astounded how different health areas treat identical cases in such different ways , with alternative meds , treatment times , doses etc etc. It's all actually a bit voodoo isn't it.
Anyway obviously you are going to bite their arm off !!
Best wishes
Chris

If life gives you lemons , then make lemonade

User

Posted 19 Jan 2016 at 19:00

Wo back up just a minute, so Gambia and now home duly noted so is the next trip Liverpool ? Seriously you are going to have every man rushing to Liverpool for there next PSA test.

Got to go apparently the train line . Com is doing offers on a Beatles tour. 😀

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 19 Jan 2016 at 20:35

Lyn

how annoying, wasted journeys, unnecessary worry and being told that John can't get on the trial. Not any of the news you wanted I am sure you will process that information and just move on you both always seem to have that "bounce back" capability.

I am looking forward to John posting some of his Gambia birdies on FB too....please?

Hope to see you both soon

xxx

User

Posted 22 Jan 2016 at 07:56

Lyn
Some definitive info on Choline PET. I heard you like a good read.

It was published on the PCUK Facebook page

http://molecular-cancer.biomedcentral.com/articles/10.1186/s12943-015-0481-3

Edited by member 22 Jan 2016 at 08:08 | Reason: Not specified

If life gives you lemons , then make lemonade

User

Posted 22 Jan 2016 at 17:25

Thanks Chris - I didn't even know PCUK had a FB page!

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

User

Posted 22 Jan 2016 at 19:06

Elaine showed me ! A whole page with many many members not on the forum. And she put me on an American prostate cancer Facebook group also. To be honest I don't like it because everyone just seems to want to help themselves and not reply. The feed is so quick you lose your posts etc. I know this forum isn't private , but it's far more enclosed than the public PCUK Facebook site. The American site is full of people sending prayers ( which is fine but not my cup of tea ). In fact I've realised this little forum is just fine on its own

If life gives you lemons , then make lemonade

User

Posted 22 Jan 2016 at 23:59

I agree Chris. Suits me fine even though I live in Australia. I relate to you folk a lot better than Americans and I have not had much success in finding Australian groups. Georgina

User

Posted 23 Jan 2016 at 09:26

Georgina there is a facebook page which I found a while ago for a friend Prostate Cancer Foundation of Australia.

You've probably already seen it but just in case you haven't. I did just check it out and it is a facebook page

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

User

Posted 23 Jan 2016 at 16:00

Hi Georgina,

Though not a Facebook page there is an excellent site founded by an Australian, the late Terry Herbert. It is called YANA (You Are Not Alone Now). I strongly recommend it and although it has become international, think it likely that it could be instrumental and putting you in touch with a local support group. http://www.yananow.org

Edited by member 23 Jan 2016 at 16:01 | Reason: Not specified

Barry

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