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User
Posted 12 August 2016 14:37:39(UTC)
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 😊
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User
Posted 12 August 2016 14:37:39(UTC)
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 😊
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User
Posted 12 August 2016 22:35:08(UTC)
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
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User
Posted 14 August 2016 09:39:51(UTC)
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
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User
Posted 12 August 2016 15:40:18(UTC)

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

*******

 

We can't control the winds - but we can adjust our sails
User
Posted 12 August 2016 18:47:18(UTC)
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 August 2016 21:51:46(UTC)

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 August 2016 22:35:08(UTC)
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
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User
Posted 14 August 2016 09:28:27(UTC)
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 August 2016 09:30:29(UTC)
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 August 2016 09:39:51(UTC)
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
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User
Posted 14 August 2016 09:47:24(UTC)
Hi Rosy how are you, I hope each day is getting a little easier for you. Take care Jayne x
User
Posted 14 August 2016 10:07:26(UTC)
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 August 2016 10:33:44(UTC)
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 August 2016 20:48:53(UTC)
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
User
Posted 15 August 2016 20:26:51(UTC)

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

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User
Posted 18 August 2016 23:16:27(UTC)
Hi Mo, lovely to hear from you, sounds like the new home is keeping you busy!!! Take care Jayne x
User
Posted 22 August 2016 07:34:58(UTC)
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 August 2016 08:09:24(UTC)
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 August 2016 08:31:23(UTC)

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 August 2016 18:58:48(UTC)
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 August 2016 23:19:05(UTC)

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 August 2016 01:10:23(UTC)
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
User
Posted 25 August 2016 06:44:01(UTC)
Thanks Sandra just trying now to sort out all his Uni information including one lost passport and a certificate he needs - bless him 😊 will let you know how Paul gets on just keeping everything crossed.
User
Posted 25 August 2016 06:47:57(UTC)
Hi Devonmaid, really proud! It is fantastic when you enjoy life and forget about pc but then you remember and feel guilty - silly really. Will let you know how Paul gets on. Take care Jayne x
User
Posted 25 August 2016 06:50:49(UTC)
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
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User
Posted 25 August 2016 06:54:29(UTC)
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
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User
Posted 11 September 2016 08:23:14(UTC)
Hello feeling bit low today as 12 months ago today this nightmare began. We are going out as can't stand the thought of sitting thinking especially with Paul's Consultant review 22 Sep and psa v scared as just started to feel life getting back to some sort of normal. Talking of normal did I read somewhere that as a result of pc you are entitled to 4 viagra tablets a month? Paul saw a gp on Friday for something else and asked she didn't think so, don't mind if we have to pay as won't get through many as sadly still trying to work on this one. Thanks Jayne x
User
Posted 11 September 2016 09:23:12(UTC)

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
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User
Posted 11 September 2016 09:25:03(UTC)
Hi Jayne,

Sorry you're feeling low today.

I know "anniversaries" can sometimes remind you of very difficult times so I thing it's natural to feel like this. Try and get out and enjoy the sunshine (it is here at the moment). If not, them enjoy a day together, a nice cuddle can work wonders.

Try not to worry about the next appointment and PSA, I sure everything will be ok.

As regards viagra, I think many areas you allow four tables a month so it's worth checking further. Your OH should be getting help which I think anyone with a PCa diagnosis is entitled to. It's part of the recovery process.

Keep in touch.

Steve
User
Posted 11 September 2016 18:50:00(UTC)
Hi Chris you made me smile if we get no joy you can def have the phone number sometimes it feels like you really have been through the mill and it's so unfair you have to fight or justify what has happened it really is hard enough without the extra pressure. In the end we had a decent day with Paul's family who have been through the same with breast cancer so they totally understood a down day. Take care jxx
User
Posted 11 September 2016 19:03:12(UTC)
Hi Steve thank you. Paul tends not to recall dates but sadly I do. In the end had a decent day with Paul's brother and family who are going through trauma of breast cancer they have been so supportive and understand a low day. Dragged us to a vinyl fayre reliving a few lps from our youth 😊 and a glass of wine after helped so much to get through a tough day. As for viagra will def go further. Hope you are all doing ok and your daughter has settled into high education. Take care jxx
User
Posted 11 September 2016 19:13:41(UTC)

Hi Jayne

You may want to show your GP the clip below taken from the NICE guidelines. This is what they recommend for men with ED following radical treatment. PDE5 is viagra

Bri

Managing adverse effects of radical treatment

Sexual dysfunction

1.3.31 Ensure that men have early and ongoing access to specialist erectile dysfunction services. [2008, amended 2014]

1.3.32 Offer men with prostate cancer who experience loss of erectile function phosphodiesterase type 5 (PDE5) inhibitors to improve their chance of spontaneous erections. [2008]

1.3.33 If PDE5 inhibitors fail to restore erectile function or are contraindicated, offer men vacuum devices, intraurethral inserts or penile injections, or penile prostheses as an alternative. [2008]

User
Posted 12 September 2016 19:51:53(UTC)
Many thanks Bri,all information greatly received. She didnt even note he had pc until she went to add to his notes thank goodness she was not his original gp who sadly has moved on πŸ˜• will let you knw how we get on. Jayne x
User
Posted 13 September 2016 05:39:28(UTC)

You are definitely entitled to 4 x Viagra a month and as Chris says, some doctors are more generous but the minimum limit is 4, so fight your corner.

You have a female GP and although that shouldn't make a difference, I personally feel that male GPs relate better to a man in this situation. If you have a male GP at the practice perhaps make an appointment with him and see if the attitude is different.

Down days happen to us all at times, part of life in general but definitely part of the Prostate cancer journey.

Anniversaries can be hard. I too tend to remember dates that way and it isn't always something to be good at!!

Best Wishes Jayne. Onwards and upwards and don't take "no" for an answer.

******

We can't control the winds - but we can adjust our sails
User
Posted 14 September 2016 12:56:13(UTC)
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
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User
Posted 29 September 2016 18:55:36(UTC)
Hello just to let you know Paul had his 6 month check up this eve psa undetectable 😊 consultant really pleased with progress next review 12 months unless Paul notices any changes or needs reassurance. So relieved and delighted met Ben for drink on way home from hospital to celebrate😊 knw we have genetic appointment Nov but for now enjoying the moment. Paul booking drs app tomorrow going armed with viagra data thanks to you all and advice from consultant. Bit naughty but a 2nd glass of red awaits on a school eve too😊 Jayne xxx
User
Posted 29 September 2016 19:31:24(UTC)
Hi Jayne,

Great news. Good reason to celebrate.

Take care.

Steve
User
Posted 29 September 2016 19:47:18(UTC)
Hi Jane
Great news for you both ☺
Have as many glasses as you like - it's something to celebrate🍷🍷🍷🍸🍹🍺

Kevan
User
Posted 29 September 2016 19:53:50(UTC)
Great news, always good to hear results like this

Arthur
User
Posted 29 September 2016 20:33:36(UTC)

I'm so happy for you both Jayne. Reason to celebrate for sure. Two glasses on a school night is fairly standard procedure here haha.
Try and get on the daily Cialis and you may have more reason to celebrate ......




If life gives you lemons , then make lemonade
User
Posted 29 September 2016 21:29:57(UTC)
Oh that's brilliant news Jayne. So happy for you. I've been staying off the booze recently mainly due to state of mind, but am looking forward to a glass or three on of these days soon.

Love
Devonmaid xxx
User
Posted 29 September 2016 21:34:21(UTC)

Fab news! Enjoy the moment and the wine!

User
Posted 29 September 2016 22:12:29(UTC)
Fantastic news Jayne as others have said whoop whop
BFN
JUlie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted 29 September 2016 22:19:13(UTC)
Jayne

Really pleased for you both and the rest of the family of course. Hope the PSA continues to stay low. Progress on the ED as well. Well done.

Thanks Chris
User
Posted 30 September 2016 12:53:55(UTC)
Thank you all for your lovely messages will let you know how we get on at Drs-still on cloud 9😊 take care and have a good weekend. Jayne x
User
Posted 30 September 2016 15:03:34(UTC)
Jayne
great result for Paul, and what a great reason to celebrate on the way home with Ben. Two glasses of red on a school night... who is counting? unless of course they are those goldfish bowl sized glasses that hold almost a whole bottle!
Make sure you read up on the current posts on the Daily cialis thread by Walnut and medication erecting,the erection by Johny. Lots of men now reporting success with 5mg daily Cialis and some of them have waited a long time and tried a lot of things before this.

Best wishes on all fronts
xxx
Mo
User
Posted 30 September 2016 18:11:37(UTC)
Fabulous news Jayne.. enjoy!

KRO...
User
Posted 30 September 2016 19:09:45(UTC)

Lovely news Jayne.

Since I've had a couple of alcohol free days I think I'll use your news as an excuse to raise a glass.

Good luck with the rest of it.

*****

We can't control the winds - but we can adjust our sails
User
Posted 30 November 2016 21:03:57(UTC)
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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