Just diagnosed and terrified.

User

Posted 23 Jun 2015 at 15:49

I have just been reading about

ED1000 - Revolutionary Shockwave Treatment for Erectile Dysfunction

http://www.spirehealthcare.com/shawfairpark/clinics-and-services/ed-1000-for-erectile-dysfunction/

It does mention "There are currently no published studies on using ED-1000 for impotence due to other causes, such as prostate surgery"

Doesnt look cheap £2,200 with possible blood work costing a further £560

User

Posted 23 Jun 2015 at 16:00

You are getting way ahead of yourself, for post treatment outcomes that may not occur, for interventions that you may not even need. If you concentrate on "worst case scenario" your life will be miserable.

Most men recover something, a few within days or weeks, the majority within months or years, relatively few do not.

Sorry to hear that your relationship is less than satisfactory and may be short-lived, you are not the first to go through that, you won't be the last.

Why not wait and see what happens and then you can deal with whatever that is?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 23 Jun 2015 at 16:08

I agree with CB - you would do better to channel your efforts into finding out about the different treatment options. Just because brachy is off the table doesn't mean you have to go for the op. You might be able to have HIFU and don't discount normal RT without some research - the side effects of RT may be more to your liking as many of them come on slowly in future years (if at all)

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

User

Posted 23 Jun 2015 at 16:20

I note that in your first post you were almost discounting RT on the basis that if surgery fails you can have RT but if RT fails you can't have surgery. There are two things to note:

- it is almost true that you can't have surgery after RT - we do have one member that has had it this way round but generally speaking, it woulds be hard to find a surgeon willing to do it and the side effects tend to be much more guaranteed, partly because surgery after RT can't be nerve-sparing. It is also less likely to be successful as it is much harder to remove a mushy splodge of irradiated gland without leaving any behind.

- however, the thinking that surgery gives us two bites at the apple is flawed. Even with surgery followed by RT, the outcomes are poor. Not because RT is difficult after the op but because statistically, anyone who needs salvage treatment for PCa is less likely to ever get true remission.

The sensible thing is to focus on the treatment that you and your medics believe will give you the best chance of a cure; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.

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

User

Posted 23 Jun 2015 at 17:52

Quote:

LynEyre; to my mind, choosing a treatment based on the choices left if it fails is like wearing plastic bags on your feet in case your boots leak rather than buying waterproof boots.

Sorry Raiden I know this is so serious but the above made me chuckle a lot. Listen to the people on here as they are experts. I've only been on the site 6 wks or so. Don't blow if u can help it. I know it's hard. Best wishes

User

Posted 23 Jun 2015 at 18:13

Raiden, you are definitely jumping the gun.
Don't go looking for trouble, it will find you quick enough if it's there at all. Don't trouble trouble till trouble troubles you !!!!

You have only been together for 3 months, she's older than you and is sexually high functioning and she must have thought/thinks she is one lucky lady to find a young man who can keep up with her!

She may really not have meant anything by the comment, other than a poor joke. Only you know what the real state of affairs are. As you feel that uncertain I get the impression that the relationship is based mainly on sex? If that is so then there may be the possibility that she will not be able to cope or help you to cope with the next few months. You never know, this may be a catalyst for formalising your relationship. If it isn't then you are young enough to start again when things settle, but don't write this relationship off just yet.

You are young, you have a good sex life so there is nothing definite to say that you won't make a good recovery and regain what MAY initially be lost.

My husband was 73 when he had his brachytherapy and he was already having problems in that area. Yes, he does have to take sildenafil (viagra) if we want intimacy but we can if we want to.

I am thinking of you. I am confident that your common sense will stop you worrying about the future until you know what you are dealing with. I hope so anyway.
All the best
Sandra

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

User

Posted 23 Jun 2015 at 18:37

Raiden

I know the relationship thing can be really tricky but truly good relationships can conquer everything.

Lyn has said many women would be so happy to find a kind and considerate lover who puts his partners enjoyment right up there with their own. Absolutely 100% agree.

Many people joke about men being in touch with their feminine side, or Venus and mars stuff but in my opinion being able to talk about everything, what works and what does not being really honest and open and most important of all being able to laugh and dismiss any little accidents or at things that you try which don't actually work are what really matter . In a really fantastic relationship there is no such thing as failure.

If your current partner cannot work with you towards regaining a fabulous sex life together then I would say she does not really want mutual fun and satisfaction just her own ..

There are people out there who can make things work, Lyn has told you of two she knows and I know of several others. In fact I would think just about everyone who posts can give you positive feedback on that one

Do not torture yourself with things that might not ever happen. Right now focus on things that get you on a path where those decisions and options become a choice.

There are also people out there who love their partner unconditionally amd in some cases just having them alive and sharing their life is all that matters.

User

Posted 23 Jun 2015 at 21:42

Over the years, us ugly blokes who have had relationships know that it is not what we have between our legs that defines us, or attracts the opposite sex, or the same sex if that floats your boat, it is the stuff between our rears.

dave

Oops I meant "ears".

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Jun 2015 at 17:37

Hello Friends

26/06/15 Update...

I went to see the radiologist and the surgeon today to discuss my treatment options. Both were lovely and explained and went through everything in detail. Even brought my MRI scan results up and went through each image with me.

They have reduced my staging from T3a to T2c which is good, they also said that the bulge on the left side they don't think is a bulge now, so that's good news as well.

I agreed to have have the surgery, even the radiologist said that I should opt for surgery because of my age and staging.

I got home and an hour ago I took a phone call, I have my operation date which is the 6th July. This is a lot sooner than I was expecting and has knocked me for six a little, heads thinking all sorts right now, but it has to be done, and the sooner it is out the quicker I can start the recovery process.

My Pre Op is the 30th June.

User

Posted 26 Jun 2015 at 17:47

Hi Raiden,

Once you have made your treatment choice the sooner it happens the better. And the sooner it happens the sooner you can start your recovery and get on with your life free of the cancer.

For your hospital stay you might wish to invest in baggy tracksuit trousers, your stomach will be pumped full of gas and when you come to be discharged your waistline may be larger than it was before you went in? Briefs instead of boxer shorts to assist with restraining the catheter tube and bag. Peppermint tea is recommend by some to assist with getting rid of gas.

Others will contribute other suggestions in due course.

atb, enjoy your weekend.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 26 Jun 2015 at 18:15

Hi fella,

I know that once I had made the decision to have the prostate removed and that decision was processed mentally I wanted to proceed as quickly as possible. As you said it is better sooner than to wait. Although prostate cancer is slow to develop all the time those rogue cells are in you they are not going to go away on their own.

I didn't have any problems with gas. The loose fitting pants are a must. I took my music player. The wards can get noisy.

Please keep coming back for support up to your op and keep us updated after.

Brightest of blessings to you and your family.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 26 Jun 2015 at 18:16

Superb Raiden , I agree entirely with Dave. Choice made , not too much waiting and onwards cancer free hopefully. Two weeks of jiggy jiggy if u can face it. I packed out a month haha. You're doing the right thing and we can compare. Mines done mate and I'm moving forward. It wasn't as bad as a root-canal filling ok. Best wishes
Chris

User

Posted 26 Jun 2015 at 19:27

Good news Raiden, especially the reduction from T3a to T2c.
Good that you have made a choice. Get working on those pelvic floor exercises!!

I shall be away on 6th July with no wifi so will not be able to wish you all the best so - I'll say it now

GOOD LUCK AND BEST WISHES FOR THE 6th JULY RAIDEN.

Best wishes
Sandra

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

User

Posted 26 Jun 2015 at 19:44

Originally Posted by: Online Community Member

Hi Raiden,

Once you have made your treatment choice the sooner it happens the better. And the sooner it happens the sooner you can start your recovery and get on with your life free of the cancer.

Others will contribute other suggestions in due course.

atb, enjoy your weekend.

dave

Hey Dave

Thanks for the tip on the baggy pants and briefs, I was only thinking 30 minutes ago should I get some briefs instead of boxer shorts. Thanks for clarifying that for me, I'll get some this weekend.

I'm not really a trackie kind of guy and certainly wont wear a shell suit even if I live in Liverpool lol :) but I have lots of pairs of comfy lounge pants that will fit the bill just nicely.

I'll get some peppermint tea too.

User

Posted 26 Jun 2015 at 19:45

Originally Posted by: Online Community Member

Hi fella,

I didn't have any problems with gas. The loose fitting pants are a must. I took my music player. The wards can get noisy.

Please keep coming back for support up to your op and keep us updated after.

Brightest of blessings to you and your family.

Paul

Hi Paul

Totally agree, the longer I would have waited the more I would have read and thought about it. I think now get it out and get on with the recovery process.

Thank you for the support :)

User

Posted 26 Jun 2015 at 19:51

Originally Posted by: Online Community Member

Hey Chris

That made me laugh jiggy jiggy, I think a bit of me and little raiden time is a absolute must, its a strange thought to think that one day in the next week will be the last time I ever fire my raiden gun if you know what I mean :)

I'm so glad you on the up mate, lets hope you get the up up back as quickly as possible... :)

User

Posted 26 Jun 2015 at 19:52

Originally Posted by: Online Community Member

Good news Raiden, especially the reduction from T3a to T2c.
Good that you have made a choice. Get working on those pelvic floor exercises!!

I shall be away on 6th July with no wifi so will not be able to wish you all the best so - I'll say it now

GOOD LUCK AND BEST WISHES FOR THE 6th JULY RAIDEN.

Best wishes
Sandra

I've started the pelvic floor exercises already...

Thank you for the best wishes and hope you have lots of fun on the 6th

I'll keep posting my journey

User

Posted 05 Jul 2015 at 11:50

Hi Raiden,

Just wanted to wish you Luck for tomorrow.

Hope it goes well.

Steve

User

Posted 05 Jul 2015 at 11:57

Will echo what Steve said, best of luck! Will be eager to know how it went as Stuart is right behind you on Thursday.

Best wishes,

Trish

User

Posted 05 Jul 2015 at 14:43

Raiden,

All the best for tomorrow. Keep us all informed on your progress.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 05 Jul 2015 at 19:00

All the best for tomorrow Raiden a lot of us will be thinking of you and we will look forward to you posting about your recovery

User

Posted 06 Jul 2015 at 21:40

Raiden ( Steve ) is out of surgery and has texted me just now tonight. He is well, apart from the obvious discomfort us RP boys know well ( and other treatments respectfully) . He asked I report and has thanked so much for your support everyone. He's had it extra tough and we all know it's tough anyway. When I say tough we neither have a clue what it's like to be further down the road , and we may yet , so don't mean to dis-respect others ! X

User

Posted 06 Jul 2015 at 21:52

Hi Chris,

That's great news, thanks for passing that on to us.

Please send him my Best Wishes if you get chance.

Thanks.

Steve

User

Posted 06 Jul 2015 at 22:54

Thanks Chris,

Wish him all the best.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 07 Jul 2015 at 08:25

Hi Chris,

Please pass on our best wishes, glad it went ok.

Trish and Stuart xx

User

Posted 07 Jul 2015 at 08:34

best wishes from me too

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 07 Jul 2015 at 10:49

Just want to add my best wishes for a speedy recovery

Arthur

User

Posted 07 Jul 2015 at 10:54

Chris thanks for passing the news on, I would like to add my best wishes for Raiden to have a full and speedy recovery.

Look forward to hearing from him soon too.

Best wishes Xx

User

Posted 07 Jul 2015 at 11:35

Raiden is ok . Im not sure what the situation is with him posting himself etc in the future . He was happy for me to post on his behalf and wants to thank you all . I think like myself he had a total meltdown , but will get through it . I've explained that aswell as all the other people on here , that me / himself / Stuart (TrailleeTrish ) have all had this done at the same time and age more or less . So we can three really help each other real-time . And some very kind guys have given me advice who are 6/7 months on etc . Its LOVELY that help is here for all . I hope my hand RP is just as successful as their posey Da Vinci pahh
Chris

Edited by member 07 Jul 2015 at 11:36 | Reason: Not specified

User

Posted 07 Jul 2015 at 14:00

Thanks for the update Chris. 😎

Peace out 👍

User

Posted 07 Jul 2015 at 18:50

Hello Friends

ChrisJ kindly updated you all, thanks Chris

I came home this evening which I am so glad of, didn't sleep at all in the hospital, being woken up every 2 hours for ops. I am very very sore and cant walk to well as it pulls on the tummy but this is to be expected. I am told the surgery went well and they saved my nerves.

Catheter is horrible and so uncomfortable but tolerable and counting down the 10 days to have it removed.

Nerves got the better of me in the anaesthetic room as I couldn't stop shaking, they gave me something to calm me down and then put me to sleep 4.5 hours later they woke me up and I was all done.

The morphine made me very nauseous for about 7 hours after the op so I didn't take any self induced pain relief.

Fragmin injections for 28 days now which I am going to administer myself.

Thank you for all the support and I will post more when I can sit for longer.

All the best to Trish and Stuart for the 9th, will be thinking of you

User

Posted 07 Jul 2015 at 18:54

Steve,

Glad you are home, now for plenty of rest. Will DM in the week to see how you are getting on.

User

Posted 07 Jul 2015 at 19:28

So glad you are home where you can relax and take things nice and slowly

Nerve sparing is great news.

The catheter can be a pain but if you can try and keep the tube tucked close to your body supported by a snug pair of boxers do some men like to tape the bag to their leg others prefer to just let it rest close by and carry it when necessary. Also make sure you keep the area really clean not just the bit you can see but in as far as you can gently wipe with a moist soft cloth.

The panic you had pre op is really not unusual I am sure surgeons and anaesthetists see that all the time so don't beat yourself up about it at all.

Take it easy

Best wishes

User

Posted 08 Jul 2015 at 08:12

First nights sleep post op.......

Hello friends.

It was quite difficult finding a comfortable position to sleep in last night but after a few failed attempts and a rather large cushion for back support I got comfortable and slept pretty well considering.

I woke up at 2:15am with a full bag so got up and emptied that, getting up into a standing position really hurt on one side, it must just be where it's all fusing back together, I got up again at 6:15 with another full bag and same difficulties getting up. Going to see if I can get up another way today without putting too much pressure on my left side. The catheter doesn't help as it restricts your movement and starts to pull a little if I move my leg to much. I'll get there, just gotta find a happy medium.

I think tonight I will try the bigger night time bag to save me having to get up in the night, I just need to find a suitable position where I am not kicking it or pulling on it. They gave me a stand which I might try, I just hope the tubing is quite long.

As far as the sleep went I was very comfortable and once in my resting position my tummy was not hurting at all and could sleep fine. It's strange sleeping on my back as this is not a position I like to be in, but I will get used to it for a while especially while I have the catheter in and my tummy so delicate.

The carbon dioxide is floating around in my body causing a bit of gas, expelling this is not easy unless it finds its own way out, helping it out the back door is difficult as it just pulls everything in your tummy the minute you add any force, again not causing a problem and just gonna take a bit of time to disperse one way or the other, I've also been drinking peppermint cordial to help with the gas, I have tea as well.

I'd say my first night at home was a success and comfortable.

Taking it easy today, gonna rethink my whole getting up out of bed position and see how I get on finding a new one.

Need to inject the fragmin later, no biggy, deep breath push / squeeze and it's done. Best thing is not to spend to much time thinking about it and just get it done.

I've not looked at my 6 would areas yet, I'm just not ready for that at the moment. I saw something last night after I gave myself the injection and they do look small as the plasters are small. But will give it a few more days before I stand in the mirror.

Well that's me for day one. I'll keep updating my journey.

My thoughts are with all my new friends and there families and loved ones.

User

Posted 08 Jul 2015 at 09:05

Amazing mate -- great news . I just got used to sleeping on my back tbh for a couple of weeks . Get the night bag on numpty . I just connected it to the other and left it lying on the floor , tubing under both legs . As LONG as the thigh strap is correctly placed holding the catheter in the tip , you shouldn't get any midnight Arrrgghh moments. Ive only got 7 injections left and will kind of miss my recent "drug-taking" period. My actual scars are healing really well mate , but I look like ive had a thoroughly good base-ball batting round the middle now 3 weeks on . The sitting up and tummy thing and gas is the worse , but it passes soon .
So happy you had a good night
Chris

User

Posted 08 Jul 2015 at 09:10

glad to here all is going ok

must feel alot better just being back at home, hope your not snoreing to much laying on your back

take care

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 08 Jul 2015 at 09:24

All sounding good pal. The catheter is a nuisance but it's not for ever. I remember the relief after it was removed. Chris is right about putting on the right bag. I did the same and let it stay on the floor but I wasn't given a stand.

Take it slow for a while.

Take care,

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 08 Jul 2015 at 11:13

Dear Lord! Didn't we give you all a pre-op shopping list??? This is what the bucket is for .... fix the day bag to the night bag and stand the night bag in the bucket.

John slept on his side with a pillow under his top knee.

Did they give you any local anaesthetic gel or lube for the eye of your penis? It can get a little sore from the rubbing. If not provided, try a little KY jelly

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

User

Posted 08 Jul 2015 at 14:02

I did get the night bag but wanted to really know if I'd need it. Tonight I will definitely connect it and put it on the stand and see how I go. Although they only gave me 4 night bags.

Had the district nurse come round today she was happy with how everything looked. I asked about night bags and she said they don't have them and that I'd need to get them on prescription and see my GP. I said I can hardly walk and she said she will speak to the GP and see what they can do. Silly really I only got 4 nights bags for 10 nights and there are one time use only.

As for snoring probably ha ha but it's only me so not to bad at all. A least I'm comfortable and able to sleep.

User

Posted 08 Jul 2015 at 16:41

OH only had four bags for three weeks- the nurse said they were fine to use for a week or so

User

Posted 08 Jul 2015 at 16:48

The original day-bag attached to the catheter stayed on for 7 days. Not sure of the hygiene / sterility issues though , if you empty it and then re-attach it next night . Realistically absolutely fine . Medically maybe a no-no . Im sure you'll get advice

User

Posted 08 Jul 2015 at 18:08

John had one night bag and emptied it into the toilet each morning. The importance of the night bag Raiden is to ensure urine doesn't backflow towards your kidneys if the day bag and your bladder get too full. The last thing you need is kidney damage!

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

User

Posted 08 Jul 2015 at 19:23

The term one time use for the night bags is a bit deceptive, the bags are actually Ok to use for 3 - 5 nights or more, the ctiical bit is to keep the catheter site entrance clean and to do the normal hand washing stuff after emptying, attaching etc. Lyn has made a really important point and I would always recommend using the night bag even if it were for that reason alone.

User

Posted 09 Jul 2015 at 08:48

2nd nights sleep.....

The district nurse came back round last night and gave me some more night bags so I now have enough for the 10 days, which is better.

Putting the bag on last night was a real struggle, the whole bending down is not easy with everything pulling, but I got it on and looking this morning it was a success, all the waste was in the night bag that I rested in a bucket beside my bed, and I didn't have to get up through the night which was a bliss.

Realising that so much of my every day life and movement relies on my tummy muscles I have swallowed my pride and asked for help, My brother is travelling from London to Liverpool today to spend a week with me, I will be so glad of the company and support, there are so many little things I just cant do. Its made me realise how lucky the men are with wives are partners who support, love and look after them. Its put a lot into perspective for me.

I brought one of those claw pick up devices which should arrive today from Amazon, that might help when I drop things or to grab things out of my reach.

I didn't sleep to well last night, kept waking up every couple of hours and was dreading getting out of bed this morning as it pulls and stings so much on my tummy, I am worried I am going to tear something, but I did manage to get up this morning and it wasn't to bad at all. Once this catheter is out it should be easier as I will have more leg movement to support myself.

I am keeping myself nice and clean, as I always do, although I do feel a little bit of stinging around the entrance but I am told this is normal, and although I had some kind of discharge in my undies on the first day I was out of the op, I don't have anything new, so I am hoping all is ok with it. Counting down the days until I can have it taken out.

My thoughts and thanks are with you all, especially Trish and Stuart, hope all goes well today with the op.

User

Posted 09 Jul 2015 at 08:58

Well done mate . Ive just got back from walking the dogs , and I genuinely wondered how you were coping on your own because it IS Bl....y painful for a good few days . You've coped better than I would have mate. My doctor friend says that when she trained , this operation would have involved a minimum 10 day stay
Cheers Chris

User

Posted 09 Jul 2015 at 09:17

Steve

With regard to getting out of bed, how are you doing this? The way to do it is to log roll. from lying flat on your back, put your feet as close to your bottom as you can get them. Then roll your whole body on to your left side. Use your right arm to push yourself up (or the other way round). This puts minimum strain on your stomach muscles.

I'm glad you've finally asked for help. The company will do you the world of good. Stops you thinking about every twinge. You are doing really well. At this point in the proceedings, my OH was still in hospital.

User

Posted 09 Jul 2015 at 09:30

Steve,

I so glad your brother is coming to look after you, it's time like this when you need your family and he sounds like a great bloke to drop everything for you. Stuart has gone down so will report back later.

User

Posted 09 Jul 2015 at 11:33

Getting out of bed, I sleep on the left side of the bed, my bag is on my right leg as I am right handed.

I am swivelling my legs round to the left so both feet are on the floor and using my arms to push me upwards from the mattress in little stages then I have a big piece of wood which I am using as a support to actually get me on my feet. Its the getting on the feet which is doing all the pulling and stinging.

The courier delivered one of my parcels today.. My Tena 3 pads "cause I'm a man of a certain age" ha ha, just waiting on the other package with my hand gripper and extra long iPad cable. Typical, I want to go and have a lay down but I know the minute I do, the buzzer will ring and I'll have to get back up again.

User

Posted 09 Jul 2015 at 13:26

I was so pleased that my good lady was around to put my night bag on and take it off again in the morning. At night I would just flop into bed and she hooked up the night bag. If your btother can help with this it will make life easier. It shouldn't be so long before you feel fit enough to change your own.

I hope you are not having any problems with constipation. That was a real concern for me until I got some liquid dynamite to shift the backlog.

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 09 Jul 2015 at 13:43

Hey Paul,

It will be a lot easier having my brother do it especially while this catheter is in.

I'm terrified of needing a number two, although I have started taking the Senna capsules last night and I have some liquid if I need too, I just don't know what to expect, I have no push at all in me, sitting so low down will be a killer on my tummy.

I've not been eating a lot to afford me a few days of tummy repair.

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