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.My story update 21.7.15

User
Posted 15 Jul 2015 at 12:11

Hiya,

A long time ago in a galaxy far far away...........................it was the local docs really.

March 2015 went for MOT at docs as i hadn't been for a long time, nothing wrong with me to talk of, few aches and pains from lifting the tv remote nothing more.

Had the usual, weight, blood pressure and just because i was interested ask for my prostate to be checked and my PSA via bloods.  4 years ago i had an infected prostate, inflamed. Took antibiotics had a few other checks a couple of months later, no problems. 

Now i must point out between the 4 years after my prostate infection and to the day of my surgery i felt well, no symptoms.

Anyway the PSA reading came back 4.2 at age 47 the doc said it was borderline and it was up to me if i wanted a 2nd opinion which i opted for.

April 2015, l had a chat with a consultant at the local hospital who asked the surgeon for his opinion he happened to be in the next room, he said " you've come this far, im sure you have no issues, your young fit etc just do it to put your mind at rest" for a scan and biopsy. My mind was already at rest, nothing was wrong!! 

Scan/Mri and Biopsy. Interesting few hours after the biopsy, thats all im going to say!!!

May2015, Results day. I said to the wife dont bother coming to the appointment, im fine, no need, all is good. I fully believed it to, i felt good. Didn't wait long at the hospital, noticed all the guys waiting seemed to know each other and there was a lot of drinking water going on which did amuse me for a moment, then i got called.

The surgeon greeted me,  introduced me to a Cancer Councillor and then dropped the bomb shell !!!!!  7 out of 12 Biopsy's had come back as cancer positive. To be honest i have no idea what was said to me after that for a few minutes, i just kind of went deaf.

I came out with a piece of paper saying to come back with my wife next week and i had been booked in for surgery ASAP.

Telling the wife was hard, i collected her from work about 2 hours after i found out, i tried to put her off but she knew as i didn't answer the phone or text things had not gone to plan. I didn't want to tell her at home or at the pub or in the local park, i just didnt want her to remember those places for such an awful reason. It was tough, we cried and cried some more, then discussed how to tell our 12 and 14 year olds. Lets face it when you hear the Big C word you initially think the worst no matter how its presented and the thought of the kids been upset was upsetting, simple as. We opted to tell them a few days later as it would have come out eventually from the family, we said there were many cancers and i have one which needs to be removed and hopefully things will be fine after that, kept it simple, they were both fine,  my son took it so well that an hour later he came to me and said should things go wrong could he have my phone!!!

Kids eh lol

The next two weeks were spent, you know im not sure.  I told everyone i needed to,shoc , sympathy etc.  Try as i might i wanted to make a will, never did, bit silly to be honest anything could have happened to me i suppose.......a bus could of made a b line for me at any point!!! I was also scared of the upcoming op, id never been under the knife before or in hospital for a stay, i didnt want to go to the hospital but it was a case of im on a one way street with no exits, iv got to get to the end, so emotionally i just put my head down and settled my self(but i was still crapping it inside)

 The great unknown awaited but then again from the moment your diagnosed that's the story for us all i suppose. Manage to spend some quality time with the family which was good, also had plenty of time to think. I had a few beers in those two weeks, not to the point of being drunk, but it did mellow me i have to say.

Op Day, had to be there for 7.30am to sign in, straight forward, the surgeon came and seen me  said id be first up, had 3 to do today, a lovely young lady then appeared with a cushion (must be for comfort.....boy did i cling on to it) for me and said shed come to take me down. The wife also walked as far as she could, had a cuddle and waved me off, she was super brave, braver than me in fact.

The staff were excellent made me feel very comfortable, had and injection in the back to numb my lower half, felt my legs warm up, heard to young lady say your going to sleep now, last thing i remember was her smiling face........and i was gone.

First thing i remember as i came round,  is through fogged vision is some guy saying bye Johny as i was being wheeled away from him, who was this man? He was in blue.....if he was white with a beard id have been worried, especially as i was being moved away from him!

I slowly woke up in my ward, drugged up to the eyeballs but hungry. It was infact lunch time on the ward so i tucked in and boy was it nice, not at all like i imagined. the rest of that day and night i just drifted in and out of sleep, and that was that the op was over.

Recovery, day 1, drugs drugs and more drugs, every 4 hours. It was 3pm in the afternoon, id just eaten tea and toast as id had no lunch just didn't fancy it when the ward sister appeared and told me i needed to get out of bed and stand up, now at this point i was in pain, just small movements wee enough but she waned me to stand upright, she said its what has to be done the day after surgery. So up i got, lots of pain followed then i collapsed, fortunately back on the bed. She seemed quite pleased almost like she had just won the ward sweepstake or something, but i wasn't finished with her i was in so much pain i threw up, did i get her, i bloody hope so!!!

She left one of the lower grades to clear up.

Now two things i found out you need to know about prostate surgery recovery while in hospital, do your very best not to vomit or Laugh at any point over the first id say 5 days, it may be more or less, but if you do you will find yourself in a world of pain like no other. If you have friends or family that make you laugh out loud drug yourself up before they arrive or ban them from visiting, trust me i know.

I could go into every day but i wont bore you with it, all i will say is that the NHS staff that looked after me did a great job, at night boy did some of them put a shift in attending to some poorly people, credit where its due, an education in itself being in there.

Home now, coming on 8 weeks after the op, had my post op results, the prostate was 80 per cent cancer, 3 tumors, one half the size of it, it had not spread outside to anything which was good news, they also removed 25 Lymph nodes which again were clear. So a good result considering. Just have to wait and see now for now but i feel very blessed and lucky in many ways.

So this is where i am today, still fully incontinent urine wise, doing the exercises  but still flowing like a river. 

Pads, i buy my own, apparently i cant get then on the NHS, iv settled on ones we get from Morrisons, own brand for heavy flow, 1.50 a pack. Now the first 3 weeks, i drank water and filled the pads, i was getting through 6-8 a day, so 1.50 pounds a day, now im not working and the pennies mount up, but what to do? At night i would get up after 4 hours and go for a wee, but trying to hang on, half asleep getting to the loo in the dark in our house was inevitably going to end in disaster.

One night broke me. I woke with a start,  shot out of bed, i needed to go now, i headed for the bedroom door, opened it, in my haste caught my small toe on the edge, nearly broke it  im sure, the pain was unreal but i couldn't stop, i threw my self at the toilet door which flew open with a bang but at the same time i caught my shoulder on the frame and half spun me as i entered the room. Alas to late my bladder let rip and poured through my already soaked pad. So its 3am, im in a strop one of the kids would be proud of so i head to the shower to sort myself out, not thinking about the mess id made. Unknown to me, my wife gets up to see what all the fuss is about and goes to the toilet........she didn't enjoy her wet feet, made me chuckle though.  Never again!! The next day i went on the hunt for some sort of container to pee in next to the bed, i found a little plastic sea side bucket in the garage from when the kids were young.......perfect solution. Now if i wake in the night i have no stress, a little pee in the bucket, then off to the toilet, simple as.

Back to my recovery, i have a testicle that looks like a mini rugby ball but no pain thank god, im on my third urine infection which have been fun, i now also appear to have the smallest penis in the world time will tell on that one and iv also developed a condition called Lymphodemea which is swelling in the lower abbs which moves down onto the legs as the day goes on, it can at times be a bit restrictive.

Visiting the docs at least once a week for help advice etc which considering i rearly ever went is a bit strange to say the least.

But the main thing here is......... im still here.........it could be far far worse, and i know it. Onwards and upwards as they say, i will get better with time, many have.

 

Edited by member 21 Jul 2015 at 13:46  | Reason: Not specified

User
Posted 15 Jul 2015 at 12:11

Hiya,

A long time ago in a galaxy far far away...........................it was the local docs really.

March 2015 went for MOT at docs as i hadn't been for a long time, nothing wrong with me to talk of, few aches and pains from lifting the tv remote nothing more.

Had the usual, weight, blood pressure and just because i was interested ask for my prostate to be checked and my PSA via bloods.  4 years ago i had an infected prostate, inflamed. Took antibiotics had a few other checks a couple of months later, no problems. 

Now i must point out between the 4 years after my prostate infection and to the day of my surgery i felt well, no symptoms.

Anyway the PSA reading came back 4.2 at age 47 the doc said it was borderline and it was up to me if i wanted a 2nd opinion which i opted for.

April 2015, l had a chat with a consultant at the local hospital who asked the surgeon for his opinion he happened to be in the next room, he said " you've come this far, im sure you have no issues, your young fit etc just do it to put your mind at rest" for a scan and biopsy. My mind was already at rest, nothing was wrong!! 

Scan/Mri and Biopsy. Interesting few hours after the biopsy, thats all im going to say!!!

May2015, Results day. I said to the wife dont bother coming to the appointment, im fine, no need, all is good. I fully believed it to, i felt good. Didn't wait long at the hospital, noticed all the guys waiting seemed to know each other and there was a lot of drinking water going on which did amuse me for a moment, then i got called.

The surgeon greeted me,  introduced me to a Cancer Councillor and then dropped the bomb shell !!!!!  7 out of 12 Biopsy's had come back as cancer positive. To be honest i have no idea what was said to me after that for a few minutes, i just kind of went deaf.

I came out with a piece of paper saying to come back with my wife next week and i had been booked in for surgery ASAP.

Telling the wife was hard, i collected her from work about 2 hours after i found out, i tried to put her off but she knew as i didn't answer the phone or text things had not gone to plan. I didn't want to tell her at home or at the pub or in the local park, i just didnt want her to remember those places for such an awful reason. It was tough, we cried and cried some more, then discussed how to tell our 12 and 14 year olds. Lets face it when you hear the Big C word you initially think the worst no matter how its presented and the thought of the kids been upset was upsetting, simple as. We opted to tell them a few days later as it would have come out eventually from the family, we said there were many cancers and i have one which needs to be removed and hopefully things will be fine after that, kept it simple, they were both fine,  my son took it so well that an hour later he came to me and said should things go wrong could he have my phone!!!

Kids eh lol

The next two weeks were spent, you know im not sure.  I told everyone i needed to,shoc , sympathy etc.  Try as i might i wanted to make a will, never did, bit silly to be honest anything could have happened to me i suppose.......a bus could of made a b line for me at any point!!! I was also scared of the upcoming op, id never been under the knife before or in hospital for a stay, i didnt want to go to the hospital but it was a case of im on a one way street with no exits, iv got to get to the end, so emotionally i just put my head down and settled my self(but i was still crapping it inside)

 The great unknown awaited but then again from the moment your diagnosed that's the story for us all i suppose. Manage to spend some quality time with the family which was good, also had plenty of time to think. I had a few beers in those two weeks, not to the point of being drunk, but it did mellow me i have to say.

Op Day, had to be there for 7.30am to sign in, straight forward, the surgeon came and seen me  said id be first up, had 3 to do today, a lovely young lady then appeared with a cushion (must be for comfort.....boy did i cling on to it) for me and said shed come to take me down. The wife also walked as far as she could, had a cuddle and waved me off, she was super brave, braver than me in fact.

The staff were excellent made me feel very comfortable, had and injection in the back to numb my lower half, felt my legs warm up, heard to young lady say your going to sleep now, last thing i remember was her smiling face........and i was gone.

First thing i remember as i came round,  is through fogged vision is some guy saying bye Johny as i was being wheeled away from him, who was this man? He was in blue.....if he was white with a beard id have been worried, especially as i was being moved away from him!

I slowly woke up in my ward, drugged up to the eyeballs but hungry. It was infact lunch time on the ward so i tucked in and boy was it nice, not at all like i imagined. the rest of that day and night i just drifted in and out of sleep, and that was that the op was over.

Recovery, day 1, drugs drugs and more drugs, every 4 hours. It was 3pm in the afternoon, id just eaten tea and toast as id had no lunch just didn't fancy it when the ward sister appeared and told me i needed to get out of bed and stand up, now at this point i was in pain, just small movements wee enough but she waned me to stand upright, she said its what has to be done the day after surgery. So up i got, lots of pain followed then i collapsed, fortunately back on the bed. She seemed quite pleased almost like she had just won the ward sweepstake or something, but i wasn't finished with her i was in so much pain i threw up, did i get her, i bloody hope so!!!

She left one of the lower grades to clear up.

Now two things i found out you need to know about prostate surgery recovery while in hospital, do your very best not to vomit or Laugh at any point over the first id say 5 days, it may be more or less, but if you do you will find yourself in a world of pain like no other. If you have friends or family that make you laugh out loud drug yourself up before they arrive or ban them from visiting, trust me i know.

I could go into every day but i wont bore you with it, all i will say is that the NHS staff that looked after me did a great job, at night boy did some of them put a shift in attending to some poorly people, credit where its due, an education in itself being in there.

Home now, coming on 8 weeks after the op, had my post op results, the prostate was 80 per cent cancer, 3 tumors, one half the size of it, it had not spread outside to anything which was good news, they also removed 25 Lymph nodes which again were clear. So a good result considering. Just have to wait and see now for now but i feel very blessed and lucky in many ways.

So this is where i am today, still fully incontinent urine wise, doing the exercises  but still flowing like a river. 

Pads, i buy my own, apparently i cant get then on the NHS, iv settled on ones we get from Morrisons, own brand for heavy flow, 1.50 a pack. Now the first 3 weeks, i drank water and filled the pads, i was getting through 6-8 a day, so 1.50 pounds a day, now im not working and the pennies mount up, but what to do? At night i would get up after 4 hours and go for a wee, but trying to hang on, half asleep getting to the loo in the dark in our house was inevitably going to end in disaster.

One night broke me. I woke with a start,  shot out of bed, i needed to go now, i headed for the bedroom door, opened it, in my haste caught my small toe on the edge, nearly broke it  im sure, the pain was unreal but i couldn't stop, i threw my self at the toilet door which flew open with a bang but at the same time i caught my shoulder on the frame and half spun me as i entered the room. Alas to late my bladder let rip and poured through my already soaked pad. So its 3am, im in a strop one of the kids would be proud of so i head to the shower to sort myself out, not thinking about the mess id made. Unknown to me, my wife gets up to see what all the fuss is about and goes to the toilet........she didn't enjoy her wet feet, made me chuckle though.  Never again!! The next day i went on the hunt for some sort of container to pee in next to the bed, i found a little plastic sea side bucket in the garage from when the kids were young.......perfect solution. Now if i wake in the night i have no stress, a little pee in the bucket, then off to the toilet, simple as.

Back to my recovery, i have a testicle that looks like a mini rugby ball but no pain thank god, im on my third urine infection which have been fun, i now also appear to have the smallest penis in the world time will tell on that one and iv also developed a condition called Lymphodemea which is swelling in the lower abbs which moves down onto the legs as the day goes on, it can at times be a bit restrictive.

Visiting the docs at least once a week for help advice etc which considering i rearly ever went is a bit strange to say the least.

But the main thing here is......... im still here.........it could be far far worse, and i know it. Onwards and upwards as they say, i will get better with time, many have.

 

Edited by member 21 Jul 2015 at 13:46  | Reason: Not specified

User
Posted 16 Jul 2015 at 05:14

hi

re your kids I remember a story my mam told me when my dad passed away, I was 8yrs old, she says within an hour I was planning who to give my dads cloths to, mobile phones where in a red box at end of the street.

nidge

run long and prosper

'pooh how do you spell love'

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

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User
Posted 15 Jul 2015 at 13:20

Well I've had a good grin at some of your post !

Kids are very resilient as I know from the personal experience of a 13 grandson who had cancer. He and his younger brother always argued over who got to sit in the front seat and so they reached an agreement that they would each sit there on the way there and swap for on the way back.
Ist grandson had travelled front seat going to the hospital for the results of his biopsy and scan.
Very bad news but he took it. Back at the car, having asked his mother if he as going to die, to which she replied I hope not, he turfed his younger brother out of the front seat with the words "I don't know how much longer I'll be around to enjoy the front seat so you'd better let me have it while I can"
That was 5 + years ago, they argue over lots of other things but as far as I know not the front seat anymore.

Our third grandson is very sensitive and was devastated when his great grandad died. We decided to just be very matter of fact about the prostate cancer and that seems to have worked. As all four have got older I have made a point of occasionally dropping into the conversation how old we are and how at some stage we wont be around.

You were so, so lucky to have a GP who didn't rush you from the surgery or try to put you off a PSA test on the basis of your age.

Onwards and upwards as the saying goes.

We can't control the winds - but we can adjust our sails
User
Posted 15 Jul 2015 at 13:39

Many men get diagnosed early with no symptoms purely by chance, as they were having or had regular checks JIC (just in case).

If you display symptoms it seems often too late for some treatment options.

Someone one somewhere was smiling on you that day. You and your OH were smiling the other day, LOL.

Glad your kids have got it in perspective.

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 15 Jul 2015 at 13:46

You sound upbeat Johny and that's good. My story is very similar to yours. No symptoms to mention. Just had a psa test. It was 15 ( eventually 43 ). I had my prostate removed 30 days ago. I think I'm ok. I hope you are. I'll enjoy your posts as at 48 we are same age , same place so to speak. Take care
Chris

User
Posted 15 Jul 2015 at 22:14
Johny

your journey so far is similar to others, your GP is not typical so be thankful for that. You clearly have a good sense of humour which always helps, sometimes when things are not going well it becomes a vital coping mechanism.

Having a supportive partner, friends and family is particulalry precious, reading your other threads it sounds like you definitely do. It also seems you're doing really well so all I can say is so far so good, long may that continue.

best wishes

xx

Mo

User
Posted 15 Jul 2015 at 23:08

Welcome Johny

Did they not discuss with you any other tests ie MRI or bone scan to determine full diagnosis.
Were other treatment options discussed with you as not everyone would choose surgery as their preferred route.

May help to download the toolkit off PCUK which gives loads of info

Bri

User
Posted 16 Jul 2015 at 05:14

hi

re your kids I remember a story my mam told me when my dad passed away, I was 8yrs old, she says within an hour I was planning who to give my dads cloths to, mobile phones where in a red box at end of the street.

nidge

run long and prosper

'pooh how do you spell love'

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

User
Posted 16 Jul 2015 at 16:17

Hi Brian ,

 

i had a scan/MRI on the prostate area along with the biopsy.

In the discussion with the surgeon he said it was to far advanced for wait and watch, we discussed radio therapy but he was reluctant to do that as if it didn't work it would make it harder if he had to return later to remove it.

Removal was suggested was my best option as i was fit young etc and liable to make a full recovery for many years to come. Like many i was so in shock i just went with it.......i just wanted it out. As it was it was 80 per cent cancerous anyway.

 

 

 

 
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