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Steve journey so far.

User
Posted 23 Oct 2017 at 19:34
Hi Steve.

Funny as always. They do say laughter is the best medicine.😀 Have you tried windeze tablets? Just a thought. Tony is thinking about Lactulose to help with the poo thing. I would imagine the last thing you would need would be constipation.

Sounds like your making a good recovery and will soon be back in the saddle.

Hope my husband does as well when his turn comes.

Lyn. I do believe Leicester's protocol is to give 28 days heparin injections for self administration so he's not looking forward to that. ( A bit squeamish) I might need to help him with that. ,( Well I always wanted to be a vet☺)

Regards

User
Posted 23 Oct 2017 at 19:43

Steve's Journey Part 6

Four days after my operation was to be my first day home alone, as Marie was back at work at a local GP Surgery and I was left to fend for myself. I was already fairly self-sufficient, having mastered the art of showering and the pulling on of my surgical stockings. Marie has been my rock ever since that day in May when I received the dreaded news. Without her support and guidance during the decision making period I may have easily taken the conservative route and gone with Active Surveillance. Her life in the nursing profession had in more recent years involved extensive work in clinical research, and this undoubtedly helped us to analyse and fully understand the various options that are available to someone at my stage of the illness, at the time of diagnosis. I cannot imagine what it would be like for a guy on his own, having to make a decision of this importance, without the support and love of a Marie. I feel blessed that I had my own in-house nurse...but was a little taken a back when she announced she was now to be addressed as "Matron"... who was I to disagree with this sudden promotion....I know my place!

My day alone was progressing well, my bowel movements were improving, the contents of my bag was now more Chardonnay than Shiraz, and Percy didn't seem to be chocking on his catheter tube quite so much. I had found that as I started to increase the regularity of my walks (exercise was still the best way of clearing wind) a small piece of surgical tape securing the pipe at the top of my thigh made things so much more comfortable when mobilising. I received a couple of visits from friends who couldn't believe how well I was looking, testament to the amazing work carried out only five days earlier by the team at Addenbrookes.

Day time television, unlike my progressive improvement, had not improved and I soon realised that my fox Terrier George was without doubt far more intelligent than any of the characters on the Jeremy Kyle show - including Jeremy Kyle!

By Friday I felt strong enough to take a longer walk and Marie and I visited our home town of Stamford for a walk around the market and a coffee at my mothers. The weekend came and went, with the bowel movement still a little unpredictable but things generally heading in the right direction. I had been hankering for a pint of bitter and as a reward for being a good boy Matron agreed to my request, so Sunday evening we walked along to the village pub where I enjoyed three pints of Woodfords Wherry..... Whilst you will not find this method of rehabilitation documented in any of the Cancer literature I can confirm that I returned home with a smile on my face and the contents of my bag had never been clearer! Matron also enjoyed two glasses of wine and we both hit the sack and slept like babies.

The next day was back to my strict regime as I prepared for the removal of my catheter on Tuesday morning.

The journey continues......To Follow....

User
Posted 23 Oct 2017 at 20:56

Hi Steve

I enjoy the updates. All the best.   

- I've sent you a PM 

Regards

Gordon

 

Edited by member 23 Oct 2017 at 20:57  | Reason: Not specified

User
Posted 25 Oct 2017 at 19:53

Steve's Journey Part 7

 Eleven days on from my operation we had reached the next milestone, today was Catheter removal day!

We were up, showered and on the road for 6.45am, taking into account the current state of the A14 road works to allow us enough time to get to Addenbrookes for our 9.30 appointment. Marie (Matron as I now had to address her) had everything planned and organised in her usual manner, and stowed away in my travel bag were 2 pairs of pants, a selection of incontinence pads, jogger bottoms, a bath towel and an expandable vessel that would be utilised should I need a wee on the way home. Before we left I had my daily Heparin injection and took Paracetamol and Ibuprofen in anticipation of the procedure ahead. Today was Percy's big day and a quick look down below gave me the impression that he was up for the ordeal ahead!

I was generally feeling good in myself, in weather reporting terms - today would be sunny intervals, a chance of a light shower and a strong wind continuing from a southerly direction! My bowel movements were still causing me discomfort, but my wounds were healing well and my catheter bag contents now had the look of a classic Sauvignon Blanc. The removal of the catheter and my ability to wee following the procedure had been playing on my mind for a few days. Would the removal be painful, would I bleed and of course the million dollar question - would I be able to control my newly refurbished plumbing?.... and how long potentially would I have to utilise my extensive collection of incontinence pads.

We arrived and checked in at Clinic 4A, I was soon called and led along to a consulting room by a nursing Sister. I was asked various questions about my general health, before I was the given a Ciprofloxacin tablet that would help in preventing the possibility of infection following the removal. I was then asked to "drop my trousers" and lay on the bed. The nurse explained that the procedure would be very quick and I should not feel any major discomfort. 10ml of water was flushed via a syringe up Percy's pipe, and then the small balloon at the top of the pipe, which had held it in place within the bladder since the operation, was deflated. I was then asked to cough four times...it sounded like I was clearing my throat in readiness for a speech, but before I could say anything I felt the catheter pipe slide out, which was a strange sensation, but to my relief painless. The nurse confirmed that everything was good, that there was no bleeding, just a small discharge which was normal. I was pleasantly surprised at the pain-free speed of the removal.... once again Percy had been there for me at my time of need. I looked down at Percy, who no longer had anything connected, and at last seemed at peace with the world. Another hurdle had been overcome and whilst from an environmental stand point I had embraced our local supermarket's "Bag for life" Campaign... I had no problem with the disposal of this one! I inserted a pad into my pants, pulled up my trousers and was then told to drink around 700 ml of water to see if I could get the urge to pass urine.

I walked the corridors of Addenbrookes with Marie, drinking water and praying the urge would develop, sure enough about an hour later I made my way to the toilet and sitting down as instructed I had my first wee via Percy for twelve days......no pain and a steady stream that to my amazement I seemed in control of. There was a very small amount of watery blood but nothing to worry about. As I exited the toilet Marie joined me in the moment, as we celebrated Percy's perfect performance. We returned triumphantly to the clinic, the nurse checked my abdomen and did a bladder scan to establish how much urine had been retained. She was happy with the results and we were told we could go home.

Our journey would require three short stops, as I continued to expel the vast amount of water I had taken on board, but I was still in control and had not so far experienced any little accidents. Once home I recalled the Consultants comments as I had laid in the recovery room "The operation had gone as planned and we have been able to preserve the Lymph Nodes and have also worked aggressively in protecting the nerve endings" - clearly my ability to pee and control my bladder at such an early stage was the result of the Consultants expertise and care, with the added advantage of our decision to attack the Cancer early whilst I was strong and it was weak. The remainder of the day continued in a similar vein, with me getting the urge and Percy delivering the goods....and still no accidents. Bedtime arrived and being carried along on my success to date I announced I would go to bed without pads. Matron spoke sternly " I would suggest you wear the pad tonight". I wasn't sure whether this was based on her professional knowledge or the fear of having to sleep at the shallow end, but I did as I was told and retired padded up!! I slept and would wake around three times, with the natural feeling to empty. The night's sleep passed without any accidents and I awoke with a dry pad. Matron Marie congratulated me with the words "Good Boy". I recalled the last time I had been praised for staying dry throughout the night I had received a colouring book and crayons at the age of 3. I'm sure my 89 year old Mother would be equally proud of her son's latest effort. The next morning I showered and decided I would discard my baggy tracky bottoms and replace them with a pair of Levis. I remembered the nurse's words as I had left the clinic - don't forget your Pelvic Floor exercises. I was determined to maintain my amazing progress to date, and have continued to religiously carry out the exercises that I had been shown at Addenbrookes Physio Centre on the day we had requested the operation. Another major hurdle was behind us. Before I sign off I would like to personally thank Percy for his resolve and for delivering when asked during this daunting period in my life! erhaps Percy's biggest challenge still awaits him, when he is asked to rise to the occasion and stand to attention once again!....To Follow....

 

 

User
Posted 25 Oct 2017 at 20:41

Epic writing Steve— only excelled by Bazza. I’ve been enjoying your posts. Please click my picture and read my profile. I admire your attitude and inner strength. Like you I had researched everything on here before my op , so was horrified on catheter removal day to be simply slapped in a pair of hospital pyjamas and dragged out in full view of the general public out front. Maybe that immediately re-established bladder control haha. I hasten to say I was still in hospital 15 days after the op so it happened there in the middle of June. Was terrified I’d be walking around in pee stained pj’s
Read my post and the “ erecting the erection” post , and Percy could be well on form soon

User
Posted 25 Oct 2017 at 21:03
Hi Steve must have been a relief for Percy to get rid of that thing☺.Keep up the good work. We're off to see the consultant tomorrow to hopefully arrange his Prostatectomy.

User
Posted 25 Oct 2017 at 21:15
Oooops Sorry obviously the consultant is not having a Prostatectomy.😷 I meant my husband Tony.
User
Posted 25 Oct 2017 at 21:20

Hi, I hope all goes well tomorrow I'll be thinking of you...

Steve x

User
Posted 25 Oct 2017 at 21:31
You are providing a really good description of the experience of a prostatectomy and what happens afterwards in a very readable and entertaining style. Well done Steve.

I remember being praised for being dry overnight too as a 55 year old at the time!

I have a question and it may be simply down to different protocols. Did you have a "leak test" done before catheter removal?

I went back to hospital 11 days after the op to hopefully get the catheter removed.

Before it was removed I hah a special x-Ray which I could watch on a tv screen. I was taken into an x-Ray room where I lay on a bed and a doctor disconnected my catheter bag before connecting my catheter to a bottle of dye which was poured into my bladder through the catheter. This was one of two strange experiences that day. Feeling the liquid dye pour into my bladder felt weird. The doctor explained that my bladder had flattened over 11 days of catheter draining and was being stretched again.

The bed was then tilted left and right, up and down while the x-Ray was viewed and recorded. This was checking the connection the surgeon had made while reconnecting my urethra to my bladder was not leaking. I was told all was good( if it had leaked I would have had the catheter in for another week to allow further healing).

I then made my way to the urology department who wouldn't remove the catheter until the report from the leak test came through the wires!

Like you, the catheter was removed after letting the water out the retainer and it was a very strange but painless feeling as it was pulled out.

I then had to drink and wee into a measuring device placed on the toilet to measure output. I then had an ultrasound scan to check I was emptying my bladder. I had to do this three times before I was allowed home.

Best wishes, Ian.

Ido4

User
Posted 25 Oct 2017 at 21:53

 

Hi Ian'

No I did not have a leak test, I simply went in to the room and my Catheter was removed, two hours later when I had managed to wee the nurse checked that I was not retaining urine by carrying out a scan and I was then allowed home..

All the best Steve.

 

User
Posted 29 Oct 2017 at 13:11

Hi Steve

Trust positive progress is continuing.  It's good to read your comprehensive diary.  

You realise the differences, as others also respond.    re. catheter removal.  It all was very straightforward, no scan or anything.

ie. Removal:  painless, discrete and probably 30 seconds of less.  Ie deflate 'bulb', remove.  Most of the rest of the time was sorting out pads and some paperwork 

I then had a flow test - ie urinate  into a 'uroflowmetry' device (basically a large cone ) after 'naturally filling bladder' - ie drinking loads of water.  Probably in hosp. about 2 hrs start to finish.  

The lady got a printout (similar size to a till receipt) - giving flow rate, max etc. and total voiding.   She had seen others in the meantime.

Note sure if she even took any urine to test.  Told that was it, see how it goes. Left with a pad on.  In  theory, yes some urine could be left in bladder.     I was very lucky, dry within 24 hours.   Only very minor leakage for a few weeks  if digging garden, lifting shopping or getting out of car or seat very quickly.

Only issue (please excuse the pun) was/is climacturia for the first year to 18 mths, however recently that seldom occurs now.

Regards

Gordon

PS I have sent you a PM (check Inbox ?)

 

Edited by member 29 Oct 2017 at 13:13  | Reason: Not specified

User
Posted 02 Nov 2017 at 22:02
Hi Steve, from a fellow Rutlander!

My husband received his diagnosis a week ago, PSA 8.7, Gleason 7 (3:4). We visit the oncologist for the first time at Peterborough hospital tomorrow.

My husband, like you, is in construction, hardly ever takes a day off work and is the strong one in the family. This news has totally thrown him and the future seems very uncertain now.

We also feel so confused about what the best treatment for him would be - ultimately it will be his decision of course, but I so want to help him.

Your blog posts about your surgery feel very reassuring, very well written and informative.

My very best wishes for your continued recovery - I'll be checking back to see if there are any further updates.

Wendy

User
Posted 03 Nov 2017 at 20:57

Hi Wendy,

Sorry to hear of your husband's plight and fully understand what he must be going through, It completely turns your world upside down.

I hope today's visit to Peterborough Hospital has helped you get a better understanding of the treatments available.

No-one can tell you what to do and everybody has their own way of moving forward.

I finally decided that active surveillance was something I could not live with and  we made the decision to go for the removal at a time when the Cancer was still contained within the Prostate, acting whilst I was strong and it was weak.

I wont get my post operation results until my next visit to Addenbrookes on Nov 23rd but to date I am so pleased with how the operation went and how well I am progressing.

I wish you well with whatever treatment you decide on and would be more than happy to talk on the phone or meet for a coffee If you feel that would be of any help.

I'm only down the road.....

Kind Regards Steve.

User
Posted 04 Nov 2017 at 08:27

Have really enjoyed your posts Steve.  My partner had his RP on 23/10 , like you he was on active surveillance and lasted on that for 4 years. But then we were planning to move house and he felt he just couldn't until he had got shot of that damn prostate!  Anyway after a truly awful week with the catheter causing him so much pain he couldn't even walk outside for more than a few yards, today he has gone to have catheter out.  His wounds caused no pain, except he was allergic to the dressings, and I wonder if he was allergic to something in the catheter tube but the farting ... thankfully I have plenty air freshener.  Like you he has remained cheerful and positive as he just feels so relieved the cancer has hopefully gone.   Take care fella, Gilly

User
Posted 04 Nov 2017 at 20:30
Hi Gilly. I wonder if your partner could be allergic to Latex( I'm thinking that's maybe in the dressings and catheter) Wishing him well for a speedy recovery.

Hi Steve very pleased to hear you are recovering so well. It gives hope to Tony that he too will be on the road to hopefully ridding himself of this beastly disease.

We had good news today in that the operation will be on the 24th November ( pre op assessment on Friday) the day after your post op results. Talk about keen,he's got his bag packed already.Who would have thought anybody in their right mind would want an operation.Just have to chill out as much as possible in the meantime.🛀💛

Ann

User
Posted 04 Nov 2017 at 20:46
Gilly

As a youngster I was allergic to chlorhexidine. chlorhexidine is used in some surgical dressings and instilagel which is the gel used to lubricate the Catheter.

Thanks Chris

User
Posted 04 Nov 2017 at 22:04

Steve’s Journey Part 8

Whilst I would not describe my catheter removal experience as the most enjoyable day of my life, it was another milestone behind me, which despite my fears had been relatively pain free in the Percy department. More importantly I had immediately regained acceptable control of my waterworks, and the cupboards that Marie had filled with incontinence pads in readiness for my return could now be emptied. In her usual pre-planning, organised way coupled with her inability to walk away from a buy one get one free offer, Marie’s stash of incontinence pads would without doubt have kept me desert dry for well into the next decade!
The start of my Prostate Cancer journey had been a visit to my GP due to an ongoing problem with my urinary flow, which over a number of years had progressively got worse. The constant feeling of not emptying fully, coupled with the stop/start nature of my weeing experience had resulted in my GP sending me for the various tests that eventually would confirm the presence of Cancer within my prostate. Whilst I had endured a number of uncomfortable years with my staccato weeing, I guess I should be thankful that this annoying condition had provided me with an early warning system that subsequently allowed me the opportunity to have the operation. For many this awful disease can lay dormant, without any obvious symptoms or warning signs, and from a selfish point of view I thank my lucky stars that Percy’s problems had surfaced.
My ability to control my bladder from day one was something I had not anticipated or expected, but I embraced the situation and congratulated myself in the knowledge I had practiced my pelvic floor exercises from day one to the letter of the law, with the mind set of an Olympian athlete. More amazingly, my ability to wee at a rate that I hadn’t managed since I was a teenager had returned, and I remember with pride the sound of my jet rattling against the stainless steel urinal in Peterborough United’s toilets…I was back!!
George the Fox terrier was enjoying regular walks as I stepped up my exercise regime and at the end of week three post-op Matron announced that I could remove my white surgical stockings, this I did in with gay abandon along with an element of seductiveness….(Conjures up a lovely picture!!)
Whilst everything was progressing better than I could have dreamed of, I was aware that I was still feeling tired and my dryness was occasionally compromised by a small dribble, usually caused by a sudden movement or lack of concentration. My wounds were healing well and I now felt confident enough to get back behind the wheel of my car - I have an automatic which clearly made my return to driving more user friendly. This landmark was quickly followed by my phased return to work exactly two weeks to the day since my operation.
At present I could not be more positive about how I feel, and the decision we took to remove my Prostate has so far been vindicated. We return to Addenbrookes on November 23rd when we will receive the histology results that will confirm the outcome of my operation, and whether the battle has been won or will continue.
To Follow…..

User
Posted 05 Nov 2017 at 00:05

You won't know for at least 5 years whether the battle has been won - PSA test anxiety becomes part of life albeit with a 3 or 6 monthly respite :-(

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

User
Posted 05 Nov 2017 at 08:09
Hi Steve

Thank you for your reply and offer of a coffee - I'll ask Mick if he fancies meeting up and get back to you.

The meeting with the oncologist went well on Friday - she was really nice and explained everything more thoroughly so we have a much better understanding of Mick's cancer. Also, thankfully, Mick's bone scan was clear.

Mick is considering surgery so the Dr has referred him to Addenbrooks, she was a little unsure whether they would actually consider him for surgery but felt it was well worth him going for a consultation. She also stressed that waiting a few weeks would not cause any problems and if surgery wasn't an option the hormone + radiotherapy treatment cycle could be started immediately.

Your story has been so helpful Steve - thank you so much for sharing your progress.

My very best wishes

Wendy

User
Posted 05 Nov 2017 at 10:52
I just love reading your posts Steve, you should set up a blog.both entertaining and informative. Hope that all continues to go well post op
 
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