Now That It's Over

Now That It's Over

User

Posted 30 Jun 2016 at 12:02

Ok, so I know I've been a prat with regard to bringing up the referendum issue on one of my posts. My aim of the original post was to heap praise on the NHS for the way they have been handling my case. It was never my intention to get into a vitriolic argument over politics. I'm glad it's over.

So, I had something of a breakdown on Tuesday; took the dogs out and just burst into tears. Got home and locked myself into a darkened bedroom and cried, thought a lot and slept for just a bit. Afterwards, I felt as if my whole life had been re-arranged like a sliding word puzzle. Everything all jumbled up and confused and then slowly, I was able to get thing right in my head.

I also lost one of my very closest friends last week who really gave me lots of emotional support; she just "dumped" me for no particular reason. We were very close and please try to imaging what was going through my head at the time.

I have been subject to quite violent mood swings since I found out about my condition; not violence or anything like that, just joy one day and a feeling of hopelessness on another. To be expected I suppose. I also seem to have lost interest in playing the piano, my great love. "Is this normal?", I keep asking myself.

So, onto the important things. I have my MRI scan booked for 8th July and the interview with the Radiologist and Oncology surgeon the following Wednesday. They seem to have moved very quickly, which also is leaving me a little worried and I am starting to wonder if they may think that things are a little worse than they first thought. I do know that they were quite concerned that the tumour appeared to be up against one of the nerve pathways. Perhaps I'm worrying over nothing. Just writing this is helping, "a problem shared is a problem halved" is the way I'm trying to look at it.

So, please forgive my for my rant and conduct. I was on quite a "down" and some of the replies didn't exactly help to lift me which made me feel even more isolated.

Will keep you posted and please, if you've gone through or are going through a similar experience, please feel free to share, after all "A problem shared is a problem halved"

Take care all those with this horrible disease and perhaps more importantly, those who are supporting them.

Glen

User

Posted 30 Jun 2016 at 12:02

So, please forgive my for my rant and conduct. I was on quite a "down" and some of the replies didn't exactly help to lift me which made me feel even more isolated.

Will keep you posted and please, if you've gone through or are going through a similar experience, please feel free to share, after all "A problem shared is a problem halved"

Take care all those with this horrible disease and perhaps more importantly, those who are supporting them.

Glen

User

Posted 30 Jun 2016 at 17:43

Wow, you are a much bigger man than I perhaps expected and you have all my respect. I am sorry that I contributed to your horrible week - I said at some training today that last Friday should be officially deleted from the calendar as there were apparently friends, colleagues etc all at odds with each other.

I did try to post on your other thread about your stats but then realised it had been locked. If it is any reassurance, I don't think they are moving particularly fast although I can see why it would feel like a whirlwind to you. Based on your previous post I think your MRI will be about 3 weeks after the biopsy? The guidance is that the MRI should be at least 2 weeks after biopsy to let any bruising settle but it doesn't always happen that way. Some have their MRI before the biopsy! Appointment a week later with the results isn't odd either - it sounds to me like an efficient department rather than an indication of the seriousness of your diagnosis.

This is all very new to you and things will settle down - you will find your new normal. John and I dance and it has been our sanity - you will get your playing fingers back on soon enough I hope

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

User

Posted 30 Jun 2016 at 18:31

And that's a welcome from me to Dave it is strange how the P word divides us but the C word unites us. . Keep posting we are all here to help you through the journey with advise, a shoulder to cry on and as you say sometimes just writing your thought down can be very therapeutic.

Thank you for reposting I must confess to having a few sleepless nights worrying about you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 08 Jul 2016 at 21:06

Glad that went well,

Lots of men feel the same way as you about the op, but lots of others choose RT as the less invasive option.

I couldn't even begin to imagine how I would choose if I were a Man so I hope you can get all the guidance and help you need to make a decision you are happy with. Once you make it there should be no going back.

I understand your thoughts about the use of a prostate post snip, kids etc. However some men do find dry orgasms a bit weird. If I am honest, as a woman I find the thought of that something of a bonus. I don't think losing other items can quite compare, your appendix yes a relatively useless thing, but your nipples mmmm not so sure Sean Conery has very attractive nipples for a Man?

how shocking, I am usually a very conservative poster!

must be the 3 glasses of prosecco!

Best wishes for Wednesday

User

Posted 30 Jun 2016 at 14:01

Very courageous post Dave.

I think most on here will respect you for that.

Hope the MRI goes OK and good luck for your future treatment.

KRO...

User

Posted 30 Jun 2016 at 14:38

Dave,

It takes courage to write what you have posted and I admire you for that. Having a dx of Pca is a horrible position to be in and I understand how you must feel about what may lay ahead for you.

We are all here to help, advise and support each other.

Best wishes,

John

User

Posted 30 Jun 2016 at 15:12

As said by others, a brave post.

We all have bad days and sometimes bad weeks, I am sure no one will bear a grudge.

Thanks Chris

User

Posted 30 Jun 2016 at 18:59

Dave, you're a bigger man than me gungadin well done for the well written post..

It goes to show that no one knows what is going on behind the mask. By this I also mean those ordinary people that we know that do not really understand what we are going through, the turmoil of diagnosis and treatment, getting our heads around what we are feeling about the way it is affecting us and our family and friends. Those people that look at you and think that nothing shows so you must be OK, they do not see the mental anguish or the physical side effects of all the different treatments.

If you had lost a leg they would be understanding or if you are wrapped in bandages then they can see that there is a problem but "looking normal" they are blissfully unaware.

Likewise last week we all read and responded purely on the face value of what was before us, could also have been sour grapes because of the politics of the day, who knows but never the less welcome back and I am sure you will become part of the fixtures and fittings of the site before you know it.

Best wishes with your appointments, regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 07 Jul 2016 at 22:18

Some MRI suites have headphones and music , some don't. Often they have headphones so they can tell you what is happening and for how long. A scan can last up to 40 mins. Even with music I'm afraid your concerto ain't going to be that relaxing. It's all noise and varying tempo. I can always sense the power in an MRI scanner. Like an aura almost. They use liquid Helium as a refrigerant to keep them cool. This is a limited element on our planet , so we shouldn't really be using it for balloons haha. Bah humbug.
Good luck

User

Posted 31 Aug 2016 at 08:23

Wishing you well for tomorrow

User

Posted 31 Aug 2016 at 09:34

Hi Glen

Can'take help with what the items might be as I didn't have to take anything but I just wanted to wish you well with your op. It is just over a year since mine and it seems like a lifetime away now. Just be kind to yourself after as I am sure recovery is quicker if you remain active but don't overdo it.

All the best.

Kevan

User

Posted 31 Aug 2016 at 10:08

Good luck with your op tomorrow, you will be in safe hands Glen
Just take it slow and easy after surgery
Viv X

The only time you should look back is to see how far you have come

User

Posted 31 Aug 2016 at 12:35

Good Luck tomorrow Glen.

It's a new month and you'll start a new stage of your life.

Wishing you all the best

Sandra

****

Edited by member 31 Aug 2016 at 12:36 | Reason: Not specified

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

User

Posted 31 Aug 2016 at 12:41

Good luck for tomorrow...

and as others have said - take it easy afterwards.

KRO...

User

Posted 31 Aug 2016 at 14:16

Best wishes for tomorrow,the only thing that springs to mind are laxatives or antibiotics ,but my antibiotics were given intravenously by the anaesthetist. Anaesthetic and tablets ect can make you constipated so remember no straining to pass that first motion post op. Take it easy but keep mobile.

Thanks Chris

User

Posted 31 Aug 2016 at 19:07

Hope all goes well tomorrow, take care. Jayne

User

Posted 31 Aug 2016 at 19:35

Very very best wishes.
You'll be fine.
Do NOTHING for 8 weeks. And I mean NOTHING. Let yourself heal. It's a bigger op than you think.
My fingers crossed

User

Posted 03 Sep 2016 at 09:57

Hi nice people and now it really is over, thank goodness!

Well, I'm home again. To be honest, it wasn't too traumatic. Walked down to theatre and laid down on the couch and the anesthetist said that I would get some oxygen and then a big injection to put me to sleep. Took a few deep breaths and went out like a light. Funny oxygen, lol. Next thing I knew I was in recovery in some sort of "dreamworld". I vaguely remember some of the trip up to the ward and then not much after that till they woke me for blood pressure etc.

Had a bit of local pain around the "funny bits". Got about two hours sleep that night; one heavy snorer, one heavy breather and one guy who was having a loud conversation with someone all bloody night, lol.

Had an "accident" last night in bed but once I'd got the bags in the right place, all was fine. Dreamt that I'd stolen a helicopter!!

A bit "leaky" at times and some blood in my urine from getting up and sitting down again when any pressure is put on the catheter, but ok if I don't move around too much. Apparently it's called bladder spasm as the bladder doesn't take too kindly to having a plastic tube stuck into it.

Luckily I have one of those reclining sofas so I can adjust it a bit like the hospital bed for the best position. My daughter has come down for a few days to be a "nurse" with the missus, lol.

Not in any pain at all at the moment.

If anyone waiting for the op needs some first hand experience of the op, then please contact me; I'll be more than happy to share.

Thank you ALL very much for your support; it made the time leading up to the op much easier for me.

I wonder if I can get some sexy 23 year old blonde "bimbo" to help me test out my ED in the weeks to come?? Just kidding, Lol.

Take care my friends and I will keep posting.

Glen

User

Posted 03 Sep 2016 at 10:13

Great news Glen,

Glad to hear all went well, take it easy and enjoy being looked after.

Lynda

User

Posted 03 Sep 2016 at 10:16

Glad that really is over for you Glen. Now spend the recovery time wisely and rest. Don't even THINK about sexy 23 year old bimbos or it will excite you too much and put your recovery back.

******

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

User

Posted 03 Sep 2016 at 10:28

Good to hear that it went well.

Take your time in doing things and let your body recover fully before you tackle anything strenuous... including young bimbos!

I was told before discharge that the heaviest thing that I should lift for 6 weeks was a kettle full of water!

It was good advice ... and my excuse for doing nothing for 6 weeks.

Take care...

KRO...

User

Posted 03 Sep 2016 at 10:34

Glad that the op went well and that you are feeling good. Hope the recovery stages will be OK for you but take it a step at a time and don't overdo it.

You can relax and chill for a bit.

All the best

Kevan

User

Posted 03 Sep 2016 at 10:45

Good to hear things went well. I was given oxybutynin for bladder spasms. Don't spend all day in that reclining sofa, keep active but no marathons.

Thanks Chris

User

Posted 03 Sep 2016 at 13:03

Hi Glen
Glad you are ok and well done mate. Sounds like you are doing well.
Chris

User

Posted 04 Sep 2016 at 18:15

Sounds like everything is going well so far, it truly is important to rest and not to tackle anything more than a crossword puzzle, game of scrabble, reading the paper, watching telly or even dreaming of stealing helicopters!

Just becuase you are not in pain and everything seems fine you must remember the surgery snipped and took away, snipped and reconnected all sorts of bits I never knew men even had and even a robot has a good old prod around whilst in there! All these things take about 4 - 6 weeks to heal sufficiently to do anything much more.

No harm in day dreaming or wishing though ha ha

Best wishes for a complete and speedy recovery

User

Posted 04 Sep 2016 at 21:13

That brings back memories of being 4 days post op , paramedics, 30 mg of morphine and my first trip in an ambulance. Mine was all down to constipation and like you never experienced pain like that before. My experience post op was as the days went on the debris and clots became more frequent and the bypassing became more frequent. Were you given any advice on how to deal with blockages and bypassing ?

Sounds like your bag may not have been pushed into the catheter enough. When I shower I let the bag hang from the catheter and it has never come disconnected.

Thanks Chris

User

Posted 05 Sep 2016 at 19:00

Hi Glen,

Aah surprise returns to hospital! All part off your new life's rich pattern.

Your first attempt at escape lasted longer than my first attempt. I was back in in 4 hours with a leaking like a sieve catheter. Some of the longer standing members here may recall my blog account of watering the flowers and cable ties.

Don't rush anything, your body will do what it needs to do, as and when it is ready and willing to do it.

But I do suggest you exercise, gently at first then more vigorously.

atb

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 05 Sep 2016 at 20:43

All the best Glen.

I tended to drink a fair bit of extra water. To keep the whole system flowing. Not sure if it made much difference. I had no med's or pain after about couple days other than a massive bladder spasm about 30 seconds after emptying. This was weeks later. I was returning from a walk and the bladder was reaching its capacity I think. The pain dissipated slowly after 3 or 4 minutes. Encruciating. Never was told this could happen. I find I have a much better flow and only need to go 4 or 5 times per day. Nothing at night. Unless I have a cider or 2 late evening or caffeine. I probably treat my bladder much more kindly now.... lol... all the best

User

Posted 09 Sep 2016 at 14:47

Update folks:

Back into hospital today to have the catheter removed and to test the plumbing. All OK so am home now. District nurse coming tomorrow to take out staples.

A bit of leakage when standing up and sitting down again but that seems to be getting better by the hour.

All in all, it hasn't been too bad. Had a bit of a temperature for a day or two but the paracetamol seems to have fixed that. No more bladder spasms, thank goodness, but I did take a couple of Oxybutynin tablets when I thought one might be on the way.

So, next is PSA test in about four weeks then post op chat with the consultant a couple of weeks later to see if all the cancerous cells have gone and where we go from there.

So from now on it is onwards and upwards.

Glen

User

Posted 09 Sep 2016 at 16:17

Well done - so pleased that things are going well but don't be tempted to overdo things because you are feeling well. Great news!

User

Posted 10 Sep 2016 at 00:42

Hi Glen

Things should start feeling more normal now. Hopefully you get through night dry. I only had issues. Excuse the pun. when standing up quickly. I tended to try steadily to hold on a little more and it seemed to work. Obviously the bladder has more room and sits differently. All the bundles of nerves have to 're-sync'.

May I ask. What staples...? I just had superglue material. In fact no one ever looked at my wounds.

One weeped clear fluid one night. Loads .. It wet the bed. All healed very well and apart from the larger central one practically invisible. I kept them dry as much as I could. Did you get given Fragmin ??

All the best.

User

Posted 10 Sep 2016 at 09:32

Morning Glen,

Excellent news for you regarding a dry night, you are very fortunate.

I hope all else goes well, but take care not to overdo anything even though you may feel outwardly fine.

Have a great 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 25 Sep 2016 at 12:12

Just an update.

It is now two weeks since I had my catheter out. Things are going really well as not only am I totally dry every night, but I am also 98% dry during the day, the pads are dry all the time and they have hardly any colour change. I do have to be careful though to ensure I tense before I move suddenly. Moving slowly seems to be the key.

Now, Pelvic Floor Exercises . . . . do they work or not? I know there has been quite a lot of debate about it with some saying that it helps and others saying it is a waste of time. So let me give you my take on it.

I started doing PFEs six weeks before my op. I already knew how to do them because a few years ago, I suffered with back pain; I took up Pilates and within a month my back pain was gone. Now, the first thing you are taught when stating Pilates is how to do a "zip and hold". This is basically a pelvic floor "pull up" and the theory is that if you have a strong body "core" then the rest of the body tends to work much better.

Since I had my catheter out, I have been doing eight sets of ten PFEs every day without fail. I have an app on my phone which reminds me to do them.

Now, I don't know if it's the result of doing the PFEs which has enabled me to progress so quickly or if it's perhaps that I've been lucky. However, I believe that we make our own luck and therefore I shall carry on doing them until I am 100% dry.

So, my advice to anyone who has had or is going to have a radical prostatectomy, START DOING PELVIC FLOOR EXERCISES NOW! You've nothing to lose but an awful lot to gain.

Glen

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User

Posted 30 Jun 2016 at 12:49

Really sorry to read that you are struggling Glen,

Pleased that you felt able to come back.

You will get the best possible help and support from all of us here.

Most importantly remember you are not alone.

At any time of day or night you can post here, and someone will be along to reply.

atb

dave

PS: brave post, respect for that.

PPS: Is your user name Dave or Glen, how do we address you?

Edited by member 30 Jun 2016 at 12:52 | Reason: Not specified

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 30 Jun 2016 at 13:13

Thanks for you reply. Real name Dave, Glendower is my screen name.

User

Posted 30 Jun 2016 at 14:01

Very courageous post Dave.

I think most on here will respect you for that.

Hope the MRI goes OK and good luck for your future treatment.

KRO...

User

Posted 30 Jun 2016 at 14:38

Dave,

It takes courage to write what you have posted and I admire you for that. Having a dx of Pca is a horrible position to be in and I understand how you must feel about what may lay ahead for you.

We are all here to help, advise and support each other.

Best wishes,

John

User

Posted 30 Jun 2016 at 15:12

As said by others, a brave post.

We all have bad days and sometimes bad weeks, I am sure no one will bear a grudge.

Thanks Chris

User

Posted 30 Jun 2016 at 15:18

Hi Glen sorry your struggling , think we all get those dark days I have had them, but have come through the feeling sorry for myself and am fortunate to have good support on this site and at home ,so your not alone as you have found this group, rant all you want, better to let it out than bottle it up.. all the best Andy

User

Posted 30 Jun 2016 at 15:33

Which if us hasn't lashed out when we are suffering.

I read the previous posts but didn't get involved as it seemed to me that your reaction was so sharp it was more than about being pulled up short for bringing politics into it. We all have things going on in the background that the rest of us know nothing about and perhaps it is easier to judge others by their responses. Anyway, it's done with and you're back and it's good that you feel able to return.

It's a shame that a good friend has "dumped" you for no apparent reason, but much like your own case where we didn't know why you were reacting as you did, maybe she also has things going on in her life that you know nothing about and that she doesn't feel able to share it with you. Something personal maybe. Perhaps she feels that you have enough going on in your life with your own problems and she can't dump hers on you too.

Whatever her reasons please give her the benefit of the doubt.

Mood swings when you've been diagnosed with cancer is quite understandable. Everything goes through your mind with nothing much being resolved.

Maybe the hospital has found that it's best to deal with your quickly (in which case - well done them!) or it might just be that they are generally efficient and had space on the lists to fit you in.

Don't trouble trouble until trouble troubles you !!!

You're back, welcome home!

Rant about your life if it helps. We all feel like it sometimes

******

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

User

Posted 30 Jun 2016 at 16:48

Dave

I am so pleased that you have posted again. Not surprised you were in a really dark place the other day the worry of all this and being cold shouldered by a friend is enough to set the strongest person reeling. As it was a female friend that would also explain your temporary attitude to the sometimes not so fairer sex!

As Sandra says who knows what inner turmoil she may have been going through as well. Just a thought?

Now let's start anew your rant forgotten and all of us trying to be what we are normally, a great bunch of caring people.

If you need to ask anything about your scans or tests or what results might mean you go right ahead.

Have you got someone who can go with you to appointments if you feel that company will help? Sometimes it does help to have another person with you to take down notes so you can check back on conversations later.

Some men prefer to go alone but ask the consultants if they can record the conversations.

In any event I wish you all the best.

Your apologetic post is most appreciatively accepted.

User

Posted 30 Jun 2016 at 17:43

This is all very new to you and things will settle down - you will find your new normal. John and I dance and it has been our sanity - you will get your playing fingers back on soon enough I hope

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

User

Posted 30 Jun 2016 at 18:31

Thank you for reposting I must confess to having a few sleepless nights worrying about you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 30 Jun 2016 at 18:59

Dave, you're a bigger man than me gungadin well done for the well written post..

If you had lost a leg they would be understanding or if you are wrapped in bandages then they can see that there is a problem but "looking normal" they are blissfully unaware.

Best wishes with your appointments, regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 04 Jul 2016 at 08:33

MRI on Friday Dave,

Hope it goes well for you? Don't know how long yours will take, mine was 45 minutes. Thorough!

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 05 Jul 2016 at 16:18

Thank you all for your kind words and your welcome back.

I will post again once I've had my meeting with the Radiologist and Oncologist (have I got that right?) next week. You know, one "fries" it from the outside and the other just takes the bloody thing out!

One thing that doesn't bother me; I had "the snip" 37 years ago; two kids is quite enough, thank you very much, lol.

Be good, all you nice people

Glen

User

Posted 05 Jul 2016 at 17:32

Originally Posted by: Online Community Member

I will post again once I've had my meeting with the Radiologist and Oncologist (have I got that right?)

I think they both fry it!

The Urologist (Surgeon) would take it out?

Take care

KRO...

User

Posted 05 Jul 2016 at 17:41

You will be getting the snip again - at least this time you will know what to expect

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

User

Posted 05 Jul 2016 at 19:16

Oh right, thanks for that, I wouldn't want the wrong person doing it, lol.

User

Posted 05 Jul 2016 at 19:17

Oh, that's fine then if it's just a little snip, lol.

User

Posted 07 Jul 2016 at 20:59

So, MRI tomorrow and I know it doesn't hurt, lol. Been told that I can take a CD to listen to over their system with their headphones. It just HAS to be Rachmaninov's 3rd Piano Concerto, my favourite of all time.

BTW, I've only just noticed the chatroom; does anyone ever go in there?

Have a good weekend folks!

Glen

User

Posted 07 Jul 2016 at 22:18

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