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Reassurance if possible.

User
Posted 03 Apr 2016 at 09:31
J

Pleased to hear your good news ,don't leave the ED issue too long. When you have finished your garden you are welcome to come and start on mine.

Thanks Chris

User
Posted 03 Apr 2016 at 11:02

Good news Jayne!

Wishing Paul every success with his continued recovery.

Pleased to read that Counselling is helping you also.

PS. I detest gardening...http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Best wishes
Luther

User
Posted 03 Apr 2016 at 16:54
Hi chris lovely to hear from you, gardening is my secret pleasure 😊 trying to broach ed referral with Paul but not getting very far sometimes I feel he sees me more as his best friend than wife I don't feel attractive anymore but it's ok it's a small price to pay for what we have been through. Anyway how are you getting on? Jayne x
User
Posted 03 Apr 2016 at 17:02
Many thanks Luther as I said to Chris gardening is my secret pleasure-my escape 😊 we are getting there slowly and know we still have challenges ahead but feeling so much better than 6 months ago. Hope you are doing well and enjoying the start of spring. Jayne x
User
Posted 03 Apr 2016 at 19:33

That's great news Jayne. I'm really pleased for you both. It's tough but you have come out of the other end now. Yes new probs ahead re ED etc but give him that space and time maybe , and all could come good. I was strangely the reverse in that I was rampant for 3 months post-op. I guess I felt so awfully incapacitated I was trying everything to prove I was still a man. I've not given up yet. Things are ok.
Being a fellow sufferer I'm happy to hear you feel you are benefitting from councelling. It's been damn hard for you too. Not just the PCa. Take care you both
Chris

If life gives you lemons , then make lemonade

User
Posted 04 Apr 2016 at 12:40
Hi chris thank you it's really good to know I can say how I feel without being judged know it may seem selfish missing the intimate side of our relationship but I do, I love Paul so much and at the moment it does feel like a loss I'm sure it will get easier in time. Counselling is good helping to cope with what has happened, the anxiety of the future - coping strategies and how others around mainly my family believe all sorted, toughen up you name it. Anyway Chris, I hope you, Elaine and your little boy are enjoying some quality time over the Easter holidays. Take care Jayne x
User
Posted 04 Apr 2016 at 12:44

Haha thanks Jayne
El and I are at opposite ends of the country so we are getting on great thanks. Petes with me on grandparent road trip.

If life gives you lemons , then make lemonade

User
Posted 05 Apr 2016 at 18:43
Hi chris how does E put up with you - it must be love 😊 hope you are enjoying grandparent visit. We are visiting Paul's family who we are going away with at Christmas this wkend no doubt there will be lots of beer and wine - Ben bit scared as 16 year old niece wants to take him holiday clothes shopping. It is a big step forward for us all and hopefully go some way to get over such an awful last Christmas. Anyway keep in touch. Jx
User
Posted 18 Apr 2016 at 19:36
J

Following my initial visit to the GP on the 22 Feb about my hip and back pain I got a phone appointment to be told that the x-ray showed early on set of osteoarthritis, which is quite strange because I new I had that three years ago.

GP said result did not really explain pain but the options were physiotherapy, yoga, Pilatus or cycling almost any exercise that did no invole joint impact.

The discomfort is easing and sometimes goes almost entirely, I assume bone involvement pain does not come and go.

Thanks Chris

User
Posted 18 Apr 2016 at 23:21

Chris, are you also aware that the epidural used during / after your RP (assuming you had one) could also be a culprit? Back / hip pain is a common side effect of epidural, although not always acknowledged by health professionals. Just log on to any pregnancy / new mum forum and read all the cases. A physio is a good starting point and you could ask him/her about a TENS machine.

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

User
Posted 19 Apr 2016 at 14:57

Originally Posted by: Online Community Member

Chris, are you also aware that the epidural used during / after your RP (assuming you had one) could also be a culprit? Back / hip pain is a common side effect of epidural, although not always acknowledged by health professionals. Just log on to any pregnancy / new mum forum and read all the cases. A physio is a good starting point and you could ask him/her about a TENS machine.

L

I saw your reference to epidurals in a previous post, I have never had it confirmed that I had one, but I do recall sitting on the anaesthetic table asking if it was too late to change my mind about the op and having the anaesthetist doing something behind my back.

For reassurance I think in an ideal world J/P and myself would have been sent to have a bone scan to allay our fears, but we live in the real world so that is not going to happen. My estranged father died of metastatic PCa, something I did not know until after his passing and my diagnosis. I did speak to my father by phone but never saw him during his last years but he would often say " I just wish I could get rid of this back ache" so it perhaps wrongly raises the concern slightly.

My Uro nurse has said with a PSA of 0.06 (as it was) bone involvement is highly unlikely.

Thanks Chris

 

 

 

User
Posted 15 May 2016 at 12:05
Hello just an update I do keep a check on how everyone is doing but tend not to post as much. Well five months after op and Paul seems to be doing well gets tired but is starting to enjoy things he used to also this week first week without pads another hurdle crossed. Intimacy still on cialis and there has been slight improvement but we are working on that together. He is off off to Barcelona for a mature 😊 stag weekend in July which will do him the world of good. I'm still having counselling as it was extended but not as frequent now. Ben studying hard for a levels hoping to get into Worcester or Wolverhampton uni - we are both so proud of how he has coped and helped us. Fighting the system a bit at the moment with Pauls brother although 50 in July and mom had breast cancer possible gene link his dr will not do psa feels not needed unless he has symptoms thankfully pc nurse on this site is sending through info to help argue with Dr. Anyway housework awaits hope I haven't bored everyone too much. Take care Jayne xxx
User
Posted 15 May 2016 at 12:35

Thanks for the update Jayne, always good to hear how others are progressing. Good luck to Ben for his A levels.

Glad you have been able to extend your sessions. They can only help.

All the best

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 15 May 2016 at 14:39

Hi Jayne
Glad you both doing ok. Thanks for the update. It's ridiculous Paul's brother can't get a PSA test despite history , but then again would I have the test with no symptoms and risk getting on the roller coaster ?? Probably not. My brother won't have the test. He's 51 this year and a qualified Doctor !
Best wishes to you both
Chris x

If life gives you lemons , then make lemonade

User
Posted 15 May 2016 at 17:07
Hi sandra, thank you for your kind words. We seem to be getting there slowly still feels very surreal. Counselling really does seem to have helped still have bad days or teary moments but not as many (had one yesterday morning and don't know what started it). Off for a break in Scotland whitsun which I'm sure will do us all good. Take care Jayne xxx
User
Posted 15 May 2016 at 17:41
Hi chris thank you. I think in normal circumstances Paul's brother wouldn't have psa test but his wife had breast cancer 18 months ago it's widespread in the family so now with Paul and my niece who is 16 if there is any problems they need to know. She has struggled with her mom and is now worried about her dad. Paul is being checked at present for genetic link. Hope you are all ok. Take care Jayne x
User
Posted 16 May 2016 at 09:32
Hi Jayne

its good to hear that things are settling down for you both and that counselling is helping you to cope.

Keep persevering with the intimacy, things should improve. The two of you should take as much enjoyment as you can from trying. There are lots of posts on here about how others are getting along with ED so plenty of good tips on things that you can try or medications that might help too.

I don't know if I dare ask what a mature stag do might involve?? Seen plenty of rutting and staggish behaviour from groups of young men out on the town in Newcastle and Tallinn when I have been there with my family, so I hope Paul has as much fun as they all seemed to be having!

As for Paul' brother's request for a PSA test being denied, his GP is NOT following the NHS guidelines there are two specific scenarios where a man has a right to the test, one is if a man of any age presents with symptoms and the other is if he is 50+ and there is a familial history (with or without symptoms)

Is there a different GP he can see at the practice, you could also try to see if any NHS service in your location is running well man clinics?

I have been doing a bit of research into the genetics of cancer and have done several courses on that subject. The last one I did had a whole section devoted to BRCA2 related cancers and included genetic profiling and genetic counselling (like drawing up a family tree of cancer history with a trained professional) if there were multipe instances of BRCA2 related cancers across the profile or more than 2 in first level familial connection, then the patient could be recommended for a genetic test after having counselling to advise them what the potential results could mean and the treatments they might imply as necessary.

If you read Man with PC"s post about perseverance (from the option Recent Conversations at the top of the home page) you will see why this could be of some interest to you.

I do get reminded that this genetic cause of PCa is quite rare, but it can and does happen. The article Barry has posted up just goes to show what can happen if that is identified even at a late stage of the disease.

I wish you all the very best as always

xx

Mo

Edited by member 16 May 2016 at 09:33  | Reason: Not specified

User
Posted 17 May 2016 at 18:46
Hi Mo, lovely to hear from you and thank you for the advice especially psa test and genetic testing, it really can be a minefield. Thankfully Paul's Dr and Consultant have been v supportive. So mature stag weekend well his clubbing days are long gone 😊 so it's a trip to Barcelona taking in the sights-cathedral, football stadium and of course the odd beer or two! He was supposed to be going to see mama mia in Birmingham with me tickets booked last year, so instead I'm taking my best friends son who has special needs 22 yr old with mental age of 5 yr who watches the film most days, knows every word in the songs and sings in monotone 😊 so yes i have a toy boy for the evening but it will be interesting but know he will love it. I hope you are keeping well. Take care. Jayne x
 
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