Hello and thank you

User

Posted 11 Feb 2016 at 21:03

Hello have been checking to see how everyone is doing - sorry but not updating/replying much been difficult after first counselling session surprised what came out but feel in long term positive counsellor v good.On a real high this eve first time in many months had first appointment with consultant after operation today, surgery went well appears contained, no change to Gleason fantastic to walk out with smile 😊so looking forward to Ben's 18th on Sat - been so long since we looked forward to something. Spoke about promoting this site especially on line community without all your support I would have struggled so much. Looking to liaise with pcuk nurses and consultant/specialist nurse to help others who at initial confirmation need this site's help. Determined from our hospital that others and their families know that help is available - we didnt thank you all for being there Jayne x

User

Posted 12 Feb 2016 at 02:47

hi jayne
good to read your good news, yep this site helps keep us sane, enjoy the party on Saturday be able to celebrate two evwnts

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 12 Feb 2016 at 08:48

Hello Jayne,

It's good to know that you found our support valuable and it's great that you are promoting us to others.

I'm so pleased for you that counselling has helped. When we can see only darkness in front of us it's easy to lose sight of that little light at the end of the tunnel.

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

User

Posted 12 Feb 2016 at 20:33

Thank you nidge think the consultants review really hit Paul last night had a celebraton wine. He is very positive today especially as he learnt that his consultant managed nerve sparing. As you say two celebrations tomorrow off to sort out some banners now 😊 as for the online community it really is fantastic I just wish we had known at initial diagnosis but going forward Paul and I are hoping to change this at our hospital - hopefully giving something back. Thank you for being there jx

User

Posted 12 Feb 2016 at 20:45

Hi Jordan thank you as I've replied to nidge, Paul and I are determined to give something back for all the help and support we have received from our community and the site as a whole. Mind you Paul's supposedly assigned Nurse was rather sheepish yesterday when I questioned why we were not informed about pcuk apprantly leaflet stocks always out as for toolkit looked blank,time for a change! As for counselling know I still have a way to go but found it v helpful and in fact I was not losing the plot just severe anxiety and borderline depression but determined to get there. Thank you for being there and caring. Jx

User

Posted 12 Feb 2016 at 20:47

Hi Jayne

So pleased that things are looking good post op and also that you and Paul havehad your spirits lifted.

Enjoy the forthcoming festivities and I hope that Paul will continue with his recovery.

It makes a difference now that the nights are getting lighter and signs of Spring are everywhere. I think this helps to lift the spirit.

Kind regards,

Kevan

User

Posted 13 Feb 2016 at 08:43

Hi Jayne I'm so pleased things are looking good for you both. The councelling will help to ease you back to normality mentally , as I said before , before it gets time to grow into something uglier.
I recently had a long chat with a lady who works for PCUK and explained the disparity between hospitals and hence a couples awareness of PCUK and their tremendous leaflets / toolkit and nurses for advise. My hospital had a mobile PCUK trolley with everything a person needed. They positively promoted PCUK to me. This should happen in every hospital.
As I'm sure you are well aware PCUK relies on charitable donations , and I for one have been to the donation page on the site to try to give back a little. Also if you look on google there are various pin badges and rubber wristbands you can wear to promote the cause.
Best wishes to you both
Chris

User

Posted 14 Feb 2016 at 20:40

Hi kevan, yes Paul and are feeling happier this weekend than we have done for a long time. Had a lovely day for Ben's 18th. As for the lighter nights can't wait we love our garden and you always feel better. Keeping fingers crossed for good psa next month. Take care and thank you Jayne x

User

Posted 14 Feb 2016 at 20:49

Hi chris, the counselling is helping I've got my next session tomorrow, lots of things have come out which I didn't expect. Paul and I have had a lovely weekend celebrating bens 18th and Valentine's today almost felt normal. Next hurdle is first psa which scares me and the thought of starting to look forward again. Anyway enough of us how are you and your family? Jx

User

Posted 14 Feb 2016 at 20:53

Forgot to add chris we are looking to purchase literature which can be given to patients and their families on diagnosis at our hospital. Ben did movember raised quite a lot of money only problem was he kept the beard 😊

User

Posted 15 Feb 2016 at 03:32

jayne
I ould call the PCa number re literature they have some small booklets you could use

regards
nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 15 Feb 2016 at 07:02

Hi Jayne
I hope more hospitals can be set up with the toolkit trolley. They are also finding a better way than the present system for discussing sexual side-effects with both partners , and trying to ensure doctors are very aware post treatment patients need ED support. Also better advise for partners to talk to each other.
Very nervous times ahead Jayne. The Rollercoaster never seems to end , even for those with superb post op results. Never mind car-crash figures like mine. I so hope the councelling allows you to deal with all this more strongly and level- headedly.
So fingers crossed by me for your 1st results. Thanks for asking about family. I had a week away up north at my family , then when I got home they all disappeared to Wales without me. I mean , I know I'm not great company ........

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