I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Ken Shelmerdine on February 03, 2008, 10:46:04 AM
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You may have read in a previous post that the transplant build up tests I've been having have revealed a stage 2 prostate cancer. It was decided to do a one off treatment called brachytherapy where they put about 80 radioactive seeds in the gland which reduces the tumor to zero over a 12 month period and at this stage it is completely curable because it would not be in danger of spreading for 10 to 15 years. First of all I have to go and see the consultant which leads me to cock up no. 1.
I arrive at the cancer clinic and the receptionist can't see me on the appointment list. It turns out that the appointment should have been cancelled and re-arranged for the following Wednesday (6 Feb) and would have to stand because this particular consultant was not on duty today so couldn't see me. But that's not all. I spoke with his secretary and asked why he wanted to see me when it had been decided on the method of treatment and the next thing I expected was an appointment for the surgical procedure.
She said that following some new information from the transplant doctors he needed to discuss things further with me but she didn't know the details! WTF!!!!! :rant; They've already said that brachytherapy is the only option as radiotherapy could damage the peritoneal membrane, is he going to say brachytherapy is no longer an option? Jeez, talk about only giving half the information to scare the shit out of me! The day that I went was Monday last week so I'll have this hanging over me for 9 days. Maybe I'm worrying unduly but I'll find out Wednesday
On a more positive note, my home sister gave me the news that my adequacy test came out fantastic (2.8 For the test I also did a 24 hour pee sample which amounted to 3 LITRS! so no sign of losing residuary function yet
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Damn man, that sucks! I hate it when Doctors leave you hanging. I hope its nothing major, good luck :thumbup;
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Ken, you definately don't need the added stress. Someone sure messed up the schedules and you are the one to pay for it! I will worry right along beside you :cuddle; you know I care and want this to all be done with. Maybe they will have good news for you---that is my hope. Take care,Sir Ken :grouphug;
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Ken, Best of luck with everything. I'm sorry you have to have this hanging over you for another couple of days. We're here if you need to rant or stress.
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:cuddle; I hope you get the answers you need, and that the times passes quickly!
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I hope it all gets sorted quickly Ken :cuddle;
Until then..... :bandance; :bandance; :bandance; Do a little dance for that 3 Litres! Yippeeee to still peeing!! ;D
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Oh Ken I am sorry to hear this, I know only too well how much stress this puts on people. I hope today and tomorrow will go quickly and that you will hear only good news (if having brachytherpay can be called good news, but you know what I mean). I will have my fingers firmly crossed for you.
Sending love and positive thoughts your way, please let us know how you get on. Are you going to the Christie? The staff there are brilliant.
Rose xx
By the way was I the only one to have a slight smile at your use of the term 'cock up' when discussing your prostate - maybe my British schoolgirl sense of humour ;)
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I'm sorry for the delay! I hate waiting -- I thikn of it as a form of torture! I hope the unknown information is really some good news for you.
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Thanks for all your support it really is appreciated and Rose, yes the hospital is the Christie in Manchester. Their reputation is second to none but they didn't get off to a good start with me with this mix-up which I called a 'cock up', an unintended pun! Well I'll find out what the problem if any is tomorrow. Wish me luck. :thx;
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Sir Ken know that I am keeping a close eye on the Kingdom while you are tied up with all these appointments. I will keep you in my prayers and also that you get some better news. :grouphug;
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Hi Ken,
Wishing you more luck than you can imagine. Please let us know how you get on. Obviously the booking system at the Christie failed you, but the staff are wonderful and if anything can be done to help you, you can rest assured that they will do it. (Is the parking there still awful?!) . Will be thinking about you all day :grouphug;
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Well I attended the appointment at Christie's this morning. The consultant said he wanted to tell me that the transplant people had written to him to say that I couldn't now go on the transplant list and they can only put me back on when I've been cancer free for 3 years which I already new but thought it was only two years. I'm not too concerned about that because as I've said before I have a lot of residual function which is showing no signs of slowing down and the main thing for me at this moment is to resolve the present problem. So I'm relieved that I can go ahead and have the surgery.
But then he hit me with a whammy out of the blue. Apparently 7% of patients who opt for this treatment can't have it done (I won't go into details it's too much information) lets just say some patients bone structure is too small and will obstruct the procedure. I won't know for certain until they do preliminary scans of the prostate which will be hopefully as soon as possible. We can't anything be bloody straightforward! :rant;
Still my problems are nothing compared to others on IHD. Susie for one (Goofynina) I've been thinking about her all day. I hope and pray that she pulls through this.
And Rose, Yes parking is still difficult at the Christie. I've been lucky the three times I've been because each time I've managed to take the space of someone just leaving in an otherwise full car park.
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But then he hit me with a whammy out of the blue. Apparently 7% of patients who opt for this treatment can't have it done (I won't go into details it's too much information) lets just say some patients bone structure is too small and will obstruct the procedure. I won't know for certain until they do preliminary scans of the prostate which will be hopefully as soon as possible. We can't anything be bloody straightforward! :rant;
Straightforward . . . . Wouldn't that be lovely? :lol; Actually, I hope that this does ultimately turn out to be straightforward for you, Ken, and that you will be part of the 93% of people who DON'T have issues with this procedure. I know you'll keep us posted; we'll be thinking about you.
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Geez the complications that arise from so called simple procedures in the medical field. Good luck and God bless.
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I hope you get your preliminary scans done soon Ken and that they show you are suitable for this procedure. If it's any help to know, we did once pay for Barry to have a scan as there was a 12 week waiting list (not for this procedure but a complete bone scan). It cost about £120 and it was done at 4.30 p.m. the next day, worth it to save the worry but very annoying to know the same staff and same machine were being used as for NHS patients who had the 12 week wait. This was at RSH but I'm sure all hospitals must offer 'private' scans. That said I hope your wait is days not weeks as it's all an added worry for you. Take care and please keep us posted.
:grouphug;
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:grouphug;
Thinking of you Buddy!
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So when do you find out? Or rather, when DO they do the scan? Darn it all. One more delay. Did you explain you are royalty and
EXPECT to be treated with deference and due process???? And that you have royalty with big sticks to beat them if they aren't
properly deferential??? ??? ???
Seriously Ken, I so hope and pray this procedure is workable for you, and that once the scan is done, everything is done as quickly as possible.
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Dear Sir Ken, One more thing to wait for! Waiting is the hardest part. I KNOW you will be one who can have this type of treatment. I want those doctors to hurry up and get started making you well. It is hard to rule your kingdom when you have so much to deal with. Sluff is doing pretty good at keeping us all in line, but I think he is really busy with snow and winter stuff. In the meantime,Romona and I are doing some planning :secret; :rofl; You know I worry about you and want the best for you. :cuddle; I will say a few extra prayers today.
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:grouphug;
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Sorry your having to deal with all the waiting Ken.. I hope they do the scan ASAP and your one of the people who can get it done. I will be thinking of you. :grouphug;
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Well it's good news, I had my pre-op scan yesterday and the prostate is not obstructed so they can go ahead with the brachytherapy. I switched my computer on last night in the main to look for news about Goofynina. At that point there was none so I thought I'd post about this. Well I was so groggy from the after affects of the anaesthetic I was just typing garbage so I thought I'd leave it 'till today.
The surgery is now scheduled for March 10 but we'll have to get it changed because Rita can't get the time off work for that day.
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I'm so glad the scan revealed good news Ken.. :beer1; :oops; I meant SIR KEN. :)
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Ken, I am so glad you can move forward. I would have loved to see what you posted when you were groggy! It was nice to read good news. I always keep you in my prayers :cuddle;
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Ken that's great news, hope you can get a suitable date that isn't too far away. Is Rita 'Lady Ken'? If so then I send her a big hug too as I know how hard it is to have a husband suffering with prostate cancer. :cuddle; Very best wishes, please let us know how it goes, we will all be thinking about you. :grouphug;
Rose xx
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Ken that's great news, hope you can get a suitable date that isn't too far away. Is Rita 'Lady Ken'? If so then I send her a big hug too as I know how hard it is to have a husband suffering with prostate cancer. :cuddle; Very best wishes, please let us know how it goes, we will all be thinking about you. :grouphug;
Rose xx
Yes Rita is my wife and soulmate. We've been married for 35 years and I don't no what I'd do without her. She stayed with me at the hospital all day from 7am. to 4.30 pm when they let me go home.
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Ken and Rita, that is wonderful news!!! I am so glad they can go ahead with the surgery.
Hopefully they'll find a better day so Rita can be there.
love to you both,
Annie
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Ken,
Glad you had some good news. Of course I'm not going to worry about you less. Keeping my fingers crossed. :grouphug;
Love to Rita for taking good care of you! :cuddle;
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Ken, just wanted you to know I continue to think and worry about you. I am looking forward to the time that all of this is history and we can stop worrying. Take care :cuddle;
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Well it's good news, I had my pre-op scan yesterday and the prostate is not obstructed so they can go ahead with the brachytherapy. I switched my computer on last night in the main to look for news about Goofynina. At that point there was none so I thought I'd post about this. Well I was so groggy from the after affects of the anaesthetic I was just typing garbage so I thought I'd leave it 'till today.
The surgery is now scheduled for March 10 but we'll have to get it changed because Rita can't get the time off work for that day.
Been layed low with a urine infection most of the week but feel better today but to quite honest I havn't felt 100% since the aneasthetic and I've got almost zero appetite. The surgery is still scheduled for 10 March and Rita can now get time off work
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Sir Ken I'm glad they can now go ahead with the surgery, :thumbup; I still worry about you, cancer sucks. :grouphug;
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Glad Rita has managed to get the time off so you can go ahead with10th March. Have been wondering where you were and thought perhaps you were waiting for a new date, I am sorry to hear you haven't been up to speed since the tests but I hope 10th March will soon come and go and everything will be successful. Take care of yourself, we all worry about you :grouphug; Love to Rita too, I kind of know how she must be feeling and it's not nice :grouphug;
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I wish you the best Ken :cuddle;
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Ken,
Your in my prayers! You are in Gods hands and he will take care of you. ;)
Lori/Indiana
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Sir Ken, I thought something else was going on since you haven't posted for a few days. You know I worry about you. Are you feeling any better? Try to eat a little to keep up your strength. We want you to ready for surgery. I am glad it is the 10th and that Rita has the time off. You know lots of thoughts and prayers will be surrounding you that day. We love you!
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Ken, the 10th is not very far now....
I forget, is this gonna be an outpaitent procedure, or will you be staying overnight? Either way,
I'm still thinking of you, I so hpe you feel better...just in time for the procedure. Yaysies.
:cuddle; :cuddle; :waving; :waving;
Tell Rita I think of her too, it's a burden for us who have loved ones going through difficulties.
Annie
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:grouphug;
Best of luck to you!
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Ken, just a llittle worried about you. Hope you are feeling better and all is going well. Take care, friend. Missing your posts. :cuddle;
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Glad to hear the surgery can go on and that even though it pushed you back on the transplant list, good news is you don't need dialysis right away. (I dream of having 3 L pee!!) Will be praying for ya onthe 10th.
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Ken does PD with the Baxter cycler. He and Goofynina have been the two who have given me the most encouragement about thinking of doing PD.
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Oh, I thought he said he was pre - dialysis earlier. Sorry. That's alot of pee!!
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:2thumbsup;
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sending my best thoughts your way Ken...as Sluff said, cancer sucks...but with great love and great support, the fight is a bit easier
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Sorry for not posting for awhile. I've had a urine infection which hit me twice. I thought I was doing OK and then it came back. It turned out that I had been taking the wrong antibiotic! To be fair to the doctor he had no way of knowing until the blood test results came back a few daya later which then showed that I had an infection called.....wait for it.....'enteracoccus' :rofl; Appropriate or what.
Thanks for all your messages of encouragement and concern it cheeres me me up no end.
Oh, I thought he said he was pre - dialysis earlier. Sorry. That's alot of pee!!
Even though I do 3 litres my GFR is 6% so that's why I have to do dialysis. I have had varous rants about being on dialysis because I feel completely fit and well and can even go indefinately without it but the blood reading say 8.2 creatinine etc. etc. so they say I've got to keep doing it, so I do.
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:grouphug;
I hope you are feeling better soon! :)
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Truly sorry Ken about the enteracoccus - but I agree that is a funny although appropriate term! Hope you are feeling better now. So if you miss dialysis you don't feel bloated right? That is my main symtom if I go too long without it. I am sure the doctors know what they are doing. I was almost going to do PD, but I like to go boating and swimming with my family in the lake and decided to deface my arm instead with a fistula. Get to feeling better soon... :grouphug;
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Please forgive me, Ken, but I have only just come upon this thread. Two things - dealing with Susie and the subsequent loss, and computer problems, caused that. But my caring thoughts and prayers are with you as you go through this. I must say, your strong spirit is coming out through this. That is all we have sometimes to deal with the challenges that face us. :cuddle;
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Oh Ken what an appropriate name for your infection :rofl;. Glad you can still manage to raise a smile through this. Will be thinking of you on 10th (not long now) :cuddle;
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Ken, just a little over a week to go. I will be glad for you when the surgery is over and this worry isn't hanging over your head. I keep saying little prayers for you everyday. Is the infection any better? You have really had a bad time the past few weeks. It will start getting better soon :cuddle;
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I'm fit and well now thanks everyone for your posts. I start back at work on Monday for a week and then it's the the cancer treatment on the following Monday when I become RADIOACTIVE! :bandance; :bandance;
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So if you miss dialysis you don't feel bloated right? That is my main symtom if I go too long without it.
I never get bloated because I don't retain fluid. My dialysis just clears blood toxins and very little fluid. approx 250ml over 8 hours. Also I'm not in the least bit anaemic (15.2 haemoglobin) Stauphenberg has said in another post that all dialysis patients are anaemic and he usually gets his facts right. It's this sort of info which makes me unable to completely accept that I should be on dialysis.
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I'm fit and well now thanks everyone for your posts. I start back at work on Monday for a week and then it's the the cancer treatment on the following Monday when I become RADIOACTIVE! :bandance; :bandance;
Can we see a photo of you glowing in the dark :rofl;
Seriously Ken, all the best to you and Rita, for next week, you know we will all be rooting for you. :cuddle;
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Ken I just wanted to wish you all the best for Monday, I'm sure we will all be thinking of you, and of Rita too as it is stressful and worrying for her to be going through this with you. Bet you're glad to have her by your side. I hope you will soon be back posting here to tell us all that it went well. When will you know if it was successful? Good luck, wishing you all the very best :cuddle;
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Ken, I'm sending my best wishes and thoughts along too, for Monday.
Both for you AND Rita, this is hard on her as well!!!
:cuddle; :cuddle; :cuddle; :cuddle;
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Thank you again for all your good wishes. I am starting my dialysis early tonight because I have to be at the hospital at 7.30 am tomorrow. It's a one off treatment under general anaesthetic and all being well I will be home by the evening. The radioactive seeds then start to shrink the tumor to zero over a 12 month period. As soon as I am back home and not too dopey from the anaesthetic I'll post.
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:cuddle; I hope all goes as planned and we hear from you soon Ken!
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Good Luck tommorrow
Mr. Sir Radioactive man. Know that we will be with you in spirit.
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I just came upon this thread and want you to know Ken that I will be
thinking about you and prayikngfo you tomorrow, and dRita too.
Wishing you good news and a speedy recovery.
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My Sir Ken, you know you will be in my thoughts all day Monday. I will be anxious to hear how it all goes. My brother-in-law had the radioactive seeds implanted 10 years ago and he has been cancer free since. So, I have great hope that this procedure will be the answer for you, too. Give my best to Rita. Tomorrow will be over soon and then you can move forward and put this behind you. And start planning for Chicago!! Sending lots of good wishes and :cuddle; :cuddle;
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Thinking of you Ken and sending caring thoughts to you and Rita. Let us know as soon as you are able how things went. My mother before she passed was dating a guy that had the same procedure and he did well. Positive thoughts your way.
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I'm fit and well now thanks everyone for your posts. I start back at work on Monday for a week and then it's the the cancer treatment on the following Monday when I become RADIOACTIVE! :bandance; :bandance;
With all the tests I have had involving radition I want to be your side kick..............RadioActive Man and Nuclear Girl.
We can rid the world of...................something. Paris you can drive the KidneyMoblie. Sluff you can keep it running in tip top shape!
Ken,
Glad you are doing well. :cuddle;
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How did it go Ken? - are you glowing in the dark? :)
Seriously, I've been thinking about you both all day, I hope it all went smoothly and that you and Rita and now back home and feeling OK. This procedure appears to be very successful so we can all look forward to many more years of your posts here. Thinking of you both :cuddle; Rose xx
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Romona, I am putting on my driving gloves and reporting for duty!
Ken, I hope you have felt all the love we have been sending you today. It is nighttime there and I am hoping you are at home and resting. We will be worried until we hear from you and know it all went well. Take care, friend; rest and recover. :cuddle;
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How are you doing Ken? I will continue to worry until we know you are recovering. Hoping all went well :thumbup;
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As I sit typing this post I have two pillows between me and the computer chair. I feel a bit like the loser of an arse kicking contest. Apart from that I feel reasonably OK. Just a bit unsteady from the anaesthetic.
Yesterday started at 7am when my best friend and neighbour Mike Harding drove Rita and I the five mile trip to the hospital. If there's one blessing about living in a small over crowded country like Britain it's the fact that important places you have to go to like hospitals are never too far away.
Manchester's Christie Hospital is THE NHS flagship cancer hospital and also one of the world's leading cancer research institutes so I'm confident of the best possible treatment. Although I got there for the appointment time 7.30am I didn't go into theatre until 10.45 which I guess was my own fault because I always get through about half a litre of drinking water throughout the night whenever I wake up which is usually every time the Baxter cycler starts pumping and I had been told NIL BY MOUTH from midnight. I didn't think they meant water as well!
They put me in a private room rather than on the ward as previously I'd tested positive for MRSA. First thing I had to do was get get out of my clothes and put on what I call a moonie dress. You know the type of hospital gown that ties up at the back but every time you stand up to walk around, your butt pops out. So there I am in my moonie gown looking a complete plonker just waiting around with Rita having a good laugh at me. So eventually they come in and put me on a surgery trolley to pre-op me. Isn't it strange that you can never remember the point just as the anaesthetic kicks in. I only ever remember a few moments before. As they put the anaesthetic mask on the tech told me to take deep breath and think nice thoughts. THINK NICE THOUGHTS!!!!! WTF I'm about to have unspeakable things done round my nether regions and possibly go nuclear and he wants me to THINK NICE THOUGHTS??? After a few moments he must have thought I wasn't going under fast enough so he said it again 'ARE YOU THINKING NICE THOUGHTS? I said 'Yes I'm thinking about waking up again, actually, is that nice enough? I heard him laugh and then oblivion until I woke up in the recovery room.
I spent the two or three hours sleeping on and off with Rita sat patiently beside me (she must have been bored out of her mind) When you've had one of these ops they wont let you go home until you start peeing a reasonable amount and I couldn't do one until about 5 O'Clock. When I'd done three lots of at least 100 ml they let me go home which by that time it was 8.15 pm so it had been a long day. In the meantime the doctor came in and told me the post op. scan showed the surgery to be a complete success.
I go back in a month for a PSA test and a CT scan. In the meantime I'm just going to take it easy and have a few weeks off work. :thumbup;
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:rofl; THINK NICE THOUGHTS indeed, Oh Ken that made me laugh. But I'm so glad you have been and are now home and it was a success. I've been thinking about you and Rita. I don't suppose she took any photos of the moonie gown (with you in it of course) - now that would be worth seeing :rofl;
Really pleased you are OK, love to both of you :grouphug;
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"Complete Success"...gotta love hearing that!
Rest and recover...congratulations on making it through & hugs to Rita for taking such good care of you!
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so glad to hear that everything went well.
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Ken, So happy to heat that things went well. Except for maybe the moonie dress part :rofl; You take care and get plenty of rest.
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Glad everything went well, Ken! Enjoy your time off work!
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HA hahaha I had to look up the word plonker!
So happy you're home and can get some rest. Thanks for the update!
:cuddle;
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Glad you are home Ken and glad it went so well.
Take care!
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:grouphug;
Get lots of rest.
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Ken, I am so glad it went well. Rest, recover and know we all care. I have been in Rita's shoes, sitting quietly waiting for a loved one to come out of the anesthesia. It is a difficult time, but I am sure the words "complete success" made her heart sing. Take care.
:pics; of the moonie gown?! I bet we all call it that now! Great name for those horrible gowns.
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Moonie gown a tierra and a Purple Boa...imagine that.. :rofl;
I'm glad things were successful and I hope you heal up fine.
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Ken, I'm so glad it all went so well!!!
:bandance; :bandance; :bandance;
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I'm glad everything went so well (except for the gown of course!). :cuddle;
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Thank you again for all your thoughts and best wishes. I love my IHD family you are all so thoughtful kind and caring. :grouphug;
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Good luck Ken with all of the testing and procedures. :grouphug;
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:rofl; Love the new picture Ken!
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:rofl; Love the new picture Ken!
Oh YES!!!!!!!!!! :rofl; :rofl; :rofl;
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Ken you "crack" me up :rofl; :rofl; :rofl;