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User
Posted 12 Aug 2016 at 14:37
Hello haven't posted much recently but checking in every so often to see how everyone is. 8 months post op and Paul seems to be doing well due for 6 month psa check next month and for me the anxiety starting to creep in Paul very upbeat. No continence issues now just gets very tired quickly. He has been on cialis since March but sadly no real improvement due for review so discussing possible viagra. We are closer than ever but there is no longer any intimacy and that goes for me too just tired and feel unattractive. However having my husband is the most precious thing and we have had more good days (with laughter 😊) than bad these past few months. Pauls family history has been assessed and we have a genetic appointment in Nov as it looks like there maybe a link. Still having counselling but reduced and on anti depressants know not ready come off just yet as sometimes feelings can catch me of guard and tears come from nowhere. Reassessed a few things and as such I start a new job in few weeks Paul delighted has felt I was used and abused in old. Ben ok just stressing about a level results next week mind you so are Paul and I just keeping fingers crossed he gets into uni he has worked so hard through a tough year. Anyway hope you are managing to enjoy the summer, enough of my chatter, take care Jayne p.s. We have a team of five doing Movember this year should be interstinflg 😊
User
Posted 12 Aug 2016 at 14:37
Hello haven't posted much recently but checking in every so often to see how everyone is. 8 months post op and Paul seems to be doing well due for 6 month psa check next month and for me the anxiety starting to creep in Paul very upbeat. No continence issues now just gets very tired quickly. He has been on cialis since March but sadly no real improvement due for review so discussing possible viagra. We are closer than ever but there is no longer any intimacy and that goes for me too just tired and feel unattractive. However having my husband is the most precious thing and we have had more good days (with laughter 😊) than bad these past few months. Pauls family history has been assessed and we have a genetic appointment in Nov as it looks like there maybe a link. Still having counselling but reduced and on anti depressants know not ready come off just yet as sometimes feelings can catch me of guard and tears come from nowhere. Reassessed a few things and as such I start a new job in few weeks Paul delighted has felt I was used and abused in old. Ben ok just stressing about a level results next week mind you so are Paul and I just keeping fingers crossed he gets into uni he has worked so hard through a tough year. Anyway hope you are managing to enjoy the summer, enough of my chatter, take care Jayne p.s. We have a team of five doing Movember this year should be interstinflg 😊
User
Posted 12 Aug 2016 at 22:35
I just loved reading this post, I'm sad about the intimacy, but I always think the upside is the closeness that comes with it. Good luck to Ben on his A level results, what a year for him to have to take them.

Lots of love

Devonmaid xx

User
Posted 14 Aug 2016 at 09:39
Hi Chris hope you and your wife are enjoying the Summer. We are getting there enjoying more good days than bad just keeping fingers crossed for good psa. Take care Jx
User
Posted 15 Aug 2016 at 20:26

Thanks Jayne, I'm not bad. My house is a complete tip as I'm accepting help to clear the loft, garage etc and now have boxes everywhere to be sorted through. Out and about quite a bit too. I'm finding that keeping busy is keeping me on the straight and narrow! I'm continuing to copy Mo and have been tackling some DIY too.

All the best

Rosy x

User
Posted 25 Aug 2016 at 06:50
Thank you Rosy. V impressed about your wardrobe you do know that there are companies always on the look out for people who can do flat packs - a new challenge maybe 😊. Take care Jayne x
User
Posted 25 Aug 2016 at 06:54
Me again Steve thank you really proud of Ben. I really hope your daughter does well today it is so tough for them studying and having the extra worry about their Dad. My niece has her results today too will be keeping fingers crossed for both. Jayne x
User
Posted 11 Sep 2016 at 09:23

It takes time to get intimacy back. When a man starts seeing some response to treatments , then everything can start falling into place with the boost in confidence. Don't give up !
FACT If you have had treatment for PCa and have suffered ED , then you are entitled to free prescriptions for everything. You ARE entitled to 4 Viagra or Cialis or Levitra or injections etc etc. Nice doctors like mine would prescribe more. Stamp your feet girl. If not , send me your docs Number and I'll have a right old rant at her.

If life gives you lemons , then make lemonade

User
Posted 14 Sep 2016 at 12:56
Hi Sandra thanks for the advice good idea on male GP. If no joy we have Consultant app end of month and he is v supportive. Take care Jayne x
User
Posted 30 Nov 2016 at 21:03
Hello everyone, have been keeping up to date but past few weeks as Paul's Dad in hospital quite ill and brought back a lot of memories from this time last year anyway moving on. Have seen a few highs and lows πŸ˜• past couple of months on site. We are ok Paul doing well gets tired and feels the cold so much now, no continence issues as for intimacy no real progress but small price to pay. Ben settled at uni and I've finished counselling but still on anti depressants. Hard currently as 12 months ago Paul diagnosed. Anyway news on genetic app, very informative they believe possible link as after reviewing family tree flagged that Paul developed PC early and his Mom breast cancer in her 20's, agreed to testing but will take up to 10 weeks if there is a link Ben will be offered test and results used for research - will keep you posted. On a happier note Paul and his friends have raised a lot of money for Movember - mind you they look like they are auditioning for the village people😊 will keep you updated take care all!!! Jayne x
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User
Posted 12 Aug 2016 at 15:40

Hello Jayne.

Glad that life is pretty much on the "up".

Nervousness about the 6 month check is quite usual for all of us, especially when things seem to be going reasonably well. Fingers crossed for you both.

I'm so glad that you still have that closeness despite intimacy problems. Who knows - the review may well produce results.

I think a lot of us women go through the "unattractive" phase. I certainly so. I have always disliked mirrors and I avoid reflections from shop windows too.

We were at Wisley a couple of weeks back and they have a beautiful lily pond and I asked john to take my photo standing in front of the pond. He nearly fell through the floor and double checked that I had actually asked him to take one.

The grandchildren when they started to take photos were told not to take mine. I used to say it will take a little bit of my spirit away every time they did it. Needless to say that spurred them on. There must be some real horrors lurking somewhere!

Five years before retirement I was made redundant and had to start again. I hadn't realised just how horrendous my previous working life had been. I still had some stress but nothing like it had been before.

Good luck in the new job.

I'm sure Ben's hard work will pay off and he'll get good results.

Yep, enjoying what summer there currently is. Been to a Butterfly garden/Zoo all morning then stopped at Hyde Hall on the way back so had lots of sunshine.

Stay well both of you.

All the best

Sandra

*******

 

Edited by member 13 Aug 2016 at 07:23  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 12 Aug 2016 at 18:47
J

A few ups and downs there but things look like they are going in the right direction. Hope the PSA result is good, easy to say but worrying about it won't change it. There is plenty of time for things to get back to a new normal.

Thanks Chris

User
Posted 12 Aug 2016 at 21:51

Well done you - it sounds like you're all working together to get through such a difficult year. Hope the new job and psa are good.

Best wishes

Rosy

User
Posted 12 Aug 2016 at 22:35
I just loved reading this post, I'm sad about the intimacy, but I always think the upside is the closeness that comes with it. Good luck to Ben on his A level results, what a year for him to have to take them.

Lots of love

Devonmaid xx

User
Posted 14 Aug 2016 at 09:28
Hi Jayne

I had been wondering how you and Paul were getting on, sounds like things are on the up so that is good.

As for the feeling unattractive, please don't belittle yourself. You might be very tired and that can make you feel bad about yourself. The lack of intimacy is hard to deal with sometimes but trust me you are every bit as attractive to Paul as ever it is what he sees in your heart not your body that matters.

He probably feels bad that he is unable to get intimate with you just now and that will probably make him anxious too, although of course some men find it really hard to express the way they feel or to offer any reassurance to their partner.

The addition of Viagra may help and there are lots of other options that can be tried.

I was chuckling at Sandra's reply because I really hate having my photo taken and I too tell people that I don't want my soul to be taken! My friends sometimes put some really awful ones of me on fb, they always think they are great, capture the moment or whatever I just cringe and think aaagh that is so not the real me!

I was interested to see that Paul is being genetically profiled and that there seems to be a link. Is this for BRCA2 gene ?

Good luck to Ben for his results, anxious times for all the students, parents and families just now.

Best wishes to you both

xxx

Mo

User
Posted 14 Aug 2016 at 09:30
Hi Sandra lovely to hear from you. Your note about the photo made me smile 😊 it's reassuring to know that some of my thoughts are not so strange. Take care Jayne p.s. will let you know how psa goes.
User
Posted 14 Aug 2016 at 09:39
Hi Chris hope you and your wife are enjoying the Summer. We are getting there enjoying more good days than bad just keeping fingers crossed for good psa. Take care Jx
User
Posted 14 Aug 2016 at 09:47
Hi Rosy how are you, I hope each day is getting a little easier for you. Take care Jayne x
User
Posted 14 Aug 2016 at 10:07
Hello Devonmaid, you are so right about the closeness we now laugh at lot more and appreciate life, pc certainly puts things into perspective. I'm so glad that you and your Husband are managing to get away for a holiday as for the sandcastles being by the sea we always find helps blow the cobwebs away and makes life seem a little easier Have a wonderful time you both deserve it. Jayne x
User
Posted 14 Aug 2016 at 10:33
Hi Mo, Sandra's response did make me smile I totally understand the photo thing I tend to delete or hide in the background and as for changing room mirrors well!!😊 we are getting there but are under no illusion now it takes time, understanding and patience. feeling worried at the moment with pending psa and ben's exam results just that Paul and Ben are my world. As for genetic referral it is the BRCA gene firstly Paul's history was reviewed to establish if there was a case and it seems that following their investigations they want to take further will let you know how we get on appointment not until November. Anyway enough of us how are you? Jayne x
User
Posted 14 Aug 2016 at 20:48
Jayne

I am good thanks, moved house in June and busy creating my "forever home" finding skills I never knew I had! I dont get to post as much on here as I used to but I try hard to keep in touch with everyone as best as I can.

If you and Paul get a chance look at the work that Professor De Bono is doing with the research team at the Royal Marsden hospital. It is a huge research programme with involvement from specialist cancer centres across the World. They are looking at the effects of specially designed drugs to tag onto the genetic malfunction in BRCA typed patients. The main drug they are testing is called Opalarib. There is a trial for Men with PCa that are proven BRCA2 type. Sadly very few men get to have profiling and those that do are often not actually carrying the BRCA mutant gene. I think that must make the number of viable candidates for the trials quite small.

The early results are so encouraging,

Enjoy your rest time,

Its going to be hot and sunny just about everywhere over the next few days so enjoy the gardens and some summer sun.

best wishes as always

xx

Mo

Edited by member 14 Aug 2016 at 20:50  | Reason: Not specified

User
Posted 15 Aug 2016 at 20:26

Thanks Jayne, I'm not bad. My house is a complete tip as I'm accepting help to clear the loft, garage etc and now have boxes everywhere to be sorted through. Out and about quite a bit too. I'm finding that keeping busy is keeping me on the straight and narrow! I'm continuing to copy Mo and have been tackling some DIY too.

All the best

Rosy x

User
Posted 18 Aug 2016 at 23:16
Hi Mo, lovely to hear from you, sounds like the new home is keeping you busy!!! Take care Jayne x
User
Posted 22 Aug 2016 at 07:34
Hi Rosy glad to hear that you are keeping busy and very impressed with the DIY but big question have you tackled the dreaded flatpack yet 😊. Just make sure you have some relaxing time for you. Jayne x
User
Posted 22 Aug 2016 at 08:09
Hi just a quick update as the three of us have been away in London House of Parliament and Buckingham Palace weekend really great but tiring. Ben got his A level results and has got into his first choice of Uni Worcester πŸ˜€ the champagne came out and the phone did not stop Thursday! We are so proud of him he has supported both Paul and I through this last year and still managed to keep studying which we know was not easy. Next hurdle is Paul's Consultant review and PSA check scared as always but it was nice for the past couple of days to forget and enjoy! Take care all. Jayne x
User
Posted 22 Aug 2016 at 08:31

Well done that lad !! Especially under such trying circumstances, he was obviously making sure he did you proud and he succeeded.

Good for the review and PSA. Fingers crossed for you

***

We can't control the winds - but we can adjust our sails
User
Posted 22 Aug 2016 at 18:58
It's so nice to read that Ben did well and made his mum and dad very proud. Brilliant too that you had a a lovely Pca free few days, isn't that wonderful?

Lots of love

Devonmaid

User
Posted 22 Aug 2016 at 23:19

Wonderful news about Ben. I'm glad you had a nice break and fingers crossed for the next review. (And yes I did a flatpack wardrobe with my daughter - a nightmare but the drawers go in and out and the doors open and shut!)

Rosy x

User
Posted 23 Aug 2016 at 01:10
Hi Jayne,

Please pass on my congratulations to Ben and pleased he got the Uni place he was after.

We're having a tense week this week as our youngest daughter gets her GCSE results on Thursday. I think she should have done ok.

Steve

 
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