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Steve journey so far.

User
Posted 17 Oct 2017 at 17:04

Hi, My Name is Steve and I live in Rutland the smallest county in England. I am 59 years old and married to Marie. I have always kept myself fit playing football and cricket in my younger years and also enjoyed running, completing two London marathons before my knees gave up on me.  My main exercise these days involves walking our fox terrier George.

For around four years I have suffered with a problem with my flow which eventually resulted in my GP sending me for tests to assess my PSA level. In April this year 2017, I was informed that my PSA level was 4.4 which triggered a referral to Peterborough Hospital where I was to have a Prostate Biopsy and MRI scan. I had been given good feedback by various clinicians during these procedures so when I attended Peterborough Hospital on May 18th I arrived in a confident state, expecting to be told all was well.

My world was about to fall apart as it was confirmed that the Biopsy had shown Cancer in one core on the left side. We immediately received counselling and were given an idea of the treatment options available.  I was made aware that my condition was classed as a low volume, low risk disease and in the absence of progression it was unlikely to cause any harm. Having spoken at length with Marie (who by the way has had a lifelong career in the Medical Profession), I decided that initially Active Surveillance would be the way forward and would allow us time to come to terms with the news know one ever wants to hear.

That evening we went to a concert that had been previously booked, and I remember feeling very numb, tearful and scared throughout the event. Having to break the news to my two Daughters and my 89 year old mother was also causing me heartache and Marie was able to take on that responsibility and explain the current position on my behalf. Suddenly you feel your whole life has been put on hold and the person who rarely had a day off work now faced a future of uncertainty that was totally out of his control. Breaking the news to loved ones and close friends, would make this weekend one of the hardest things I have ever had to endure. I have always lived life with a smile on my face and love making people laugh, so by the Monday I was putting a brave face on things and desperately trying to look at the positives... We have caught it early...Its low volume...Its low risk...I'm relatively young..

On the opening day of the football season I set off to watch my beloved football team Peterborough United. At the age of six I had been taken to see the Posh by my father, I think I must have been naughty and it was his way of punishing me...but I've been going ever since. This would be my escape ..90 minutes when I could forget the fears that had engulfed me....On 50 minutes the crowd was asked to applaud for two minutes in honour of a lifelong Posh fan who had died at the age of 50 Prostate Cancer...I stood and applauded feeling numb and quite vulnerable. We won 2-1 but on that day it didn't seem to matter.

I now had to make a decision and try to digest the vast amount of information and treatment options, that I felt was starting to drown me...clearly different options and treatments were right for certain individuals ....but what should I do? and what would ultimately be the right course of action for me? ... To Follow.....

 

User
Posted 17 Oct 2017 at 21:56

Hi Steve -I too am 59 and similar to you fit and healthy prior to diagnosis around 6 months ago. All I would say to you is look at these figures.

If they detect cancer early while still contained in the prostate  ;

the 5 year relative survival rate is 99%

the 10 year relative survival rate is 98%

the 15 year relative survival rate is 96%

Whether you have an operation to remove your prostate or beam radiotherapy or brachytherapy these rates are more or less the same - so whatever route you choose the cancer survival rates are amazing.

Take your time and decide what course you personally would like. You will find many who will recommend any one of those routes but in the end its a personal choice. Some people find that psychologically the removal of the prostate makes them feel more secure and I think, in general, consultants prefer this route however some prefer the other routes because they are less invasive. You can end up going round in circles but look at the relative possible side effects - personally I disregarded anything below a 5-10% chance - and if you need to then make a little chart which can help - above all try not to focus on the negative stories you will find on the internet - at this point your outlook is very good.

I had a PSA of 30 and 6 positive cores 4+3.

I chose hormone therapy followed by radiotherapy. Today I had my first check up after 4 months hormone therapy and my PSA has gone from 30 to 1. I start radiotherapy next month but already am thinking positively about treatment being over by Christmas.

User
Posted 22 Oct 2017 at 21:12

Steve’s Journey Part 5

Three days on from my operation, and I awake on Monday morning having enjoyed my best night’s sleep to date - I had prior to going to bed triumphantly managed a very enjoyable poo. This amazing development was shared via a text to my daughters who both congratulated me on my efforts. How things had changed… I had been congratulated over the years for a number of things …...scoring a hat-trick…my performance as the Artful Dodger in the schools production of Oliver…passing my driving test…and becoming a father… but never before had I received praise for opening my bowels!! Only fellow sufferers who have experienced the post side-effects of a Prostate cancer operation will fully embrace this milestone. I was feeling positive and following my morning shower even Percy seemed more perky. Whilst I felt better in myself, I was under no illusions of the task ahead… the contents of my bag still had the look of a cheap Shiraz, and despite the previous evenings events my abdomen was still bloated and sore. I was also still feeling mild discomfort from the catheter and the constant feeling of needing a wee was starting to get to me.
Marie was quick to remind me that this was only day three and things were going to take time. Day time television wasn’t helping…. there is only so much of “Homes under the hammer” and “Jeremy Kyle” a man can take.
In the afternoon we took a slow walk with George our Fox Terrier around the field at the bottom of the garden, the sun shone and I started to get things back in perspective. I received a lovely bunch of flowers and a get well soon balloon from the team at work, along with a number of cards and messages from well-wishers. The walk was great, but it soon became apparent how quickly I became tired and reluctantly the settee and daytime tele was back on the agenda.
The night ahead would not be so good, with the abdominal pains returning with a vengeance. I had taken to using a heat pad that you warm in the microwave, which placed on my tummy was proving a great help in suppressing the abdominal cramps.
Tuesday morning came and we received two appointments from Addenbrookes, one to confirm I would be having my Catheter removed next Tuesday, which would work out to be 10 days since my operation…and the second appointment was for 23rd November…..six weeks on when we would receive the Histology results. I was feeling brighter and desperate to get out of the house for a while, Marie drove and we set off to find a place for coffee and a change of scenery… not sure whether it was by chance or Marie’s warped sense of humour, but we ended up at a local windmill… don’t seem to be able to get away from the wind theme at the moment!!

To Follow…..

User
Posted 17 Oct 2017 at 20:18
Hi Steve, you have captured the feelings that happen when you get the news you have prostate cancer. It turns your life upside down. I too was initially told by the clinician who carried out my biopsy that it was very unlikely I would have a problem. In May 2015 I was called back and given the news I had prostate cancer. I see from your profile you are due to have a prostatectomy. Your fitness will help with your recovery. I wish you all best wishes for the operation and recovery afterwards. Ian.

Ido4

User
Posted 17 Oct 2017 at 22:04

Brilliant description of the feelings associated with the PCa diagnosis.

I remember the day really clearly - 22nd December 2016 (low risk, high volume for my husband).

Wishing you all the best with your chosen treatment. We certainly felt better about things once we had a plan. There are many useful threads on here from those who have gone the surgery route,

Thank you for sharing

Clare

User
Posted 18 Oct 2017 at 08:42

Welcome Steve.
Good luck on Friday. I hope all goes well for you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Oct 2017 at 17:03
Hi Steve

I just wanted to wish you well with the catheter removal outcome. The procedure is fine but I think all who have been through this were apprehensive as it's one more experience that none of us had on our bucket list (no pun intended).

All the best

Kevan

User
Posted 21 Oct 2017 at 21:23
Thank you for being so frank with your experiences, not something anyone would want to go through but many do and this is such a well written blog it will really help those who follow to understand the feelings not just the mechanics of what you go through.

Hoping to continue following your story and here's to a speedy recovery for yourself..

User
Posted 22 Oct 2017 at 15:12

Hi Steve,

A very good write up, you realise the differing procedures / protocols from hospital to hospital.   ie I stayed in one night and had an 'Intermittent pneumatic compression (IPC)' hanging on the end of the bed. I don't remember any surgical stockings at all.  

As other poster stated. All our paperwork was completed in a small room, then I had to sit in a wheelchair.    I never saw the ops theatre.

I had minimal pain, just discomfort from being constipated for too long. The fatigue comes and goes, so take it easy. The first few days I couldn't walk at any speed at all, took an age to cross the road.  It all steadily did come back, even if ED took over 2 years and still improving.  

Yes , I agree - keep the fluids flowing, 'minimal' alcohol & caffeine if you can. The lady who took my catheter out, (7 days post op) very professional, experienced, she said treat your bladder well, and gave me a ticking off for drinking cranberry juice.  I respected her opinion. Incidentally I was dry immediately and since. 

All the best

Gordon

   

User
Posted 22 Oct 2017 at 16:14

I agree with Gordon about protocols being different. I had surgical stockings fitted and for the first night they had wrapped devices round my legs that inflated and released all night. I spent twp nights in hospital but received no more clot busting medication after I left the hospital except for one night about a week after the operation I had to visit A and E with bad leg spasms that my GP was a bit worried about. I was given a precautionary Heparin injection and Gabapentin for neuropathic pain.  

Best wishes, Ian.

Ido4

User
Posted 22 Oct 2017 at 17:57

Steve I wish I was able to describe my  thoughts and feelings that I experienced during and after treatment  as well as you seem able to. These write ups of yours are certainly shared by myself and I guess many others who have and will go down the same pathway  Well Done and all the best.

User
Posted 22 Oct 2017 at 21:09

Hi Ann & Tony,

Thank you for reading my blog and I hope in some way it has helped you at this difficult time.

I hope all goes well at Leicester and you are offered the operation.

I'm sure having had the operation this is the best way forward for you.

Please keep in touch,

Regards Steve & Marie.

 

 

 

User
Posted 22 Oct 2017 at 22:58

Hi steve been following your posts of your journey, ive been laughing to myself at your sense of humour through your journey, its great that you can make light of some of the worst experiences youve been through, its fantastic that your sharing your journey and lots of people will benefit from it, and im sure maybe feel a little less worried about there own treatment etc.
although my OH diagnosis and treatment route different to you we try and still have a joke about some of the sideeffects from hormone treatment etc, we find that a bit of light humour lightens the load a bit..good luck and best wishes with your recovery..look forward to your updates..joxx

User
Posted 23 Oct 2017 at 09:48

 

Steve’s Journey Part 5

Three days on from my operation, and I awake on Monday morning having enjoyed my best night’s sleep to date - I had prior to going to bed triumphantly managed a very enjoyable poo. This amazing development was shared via a text to my daughters who both congratulated me on my efforts. How things had changed… I had been congratulated over the years for a number of things …...scoring a hat-trick…my performance as the Artful Dodger in the schools production of Oliver…passing my driving test…and becoming a father… but never before had I received praise for opening my bowels!! Only fellow sufferers who have experienced the post side-effects of a Prostate cancer operation will fully embrace this milestone. 

So true Steve, I remember wondering if I would ever poo again usually being a very regular chap!

 

Ian

Ido4

User
Posted 23 Oct 2017 at 18:30

Steve

Great set of posts Steve, and congratulations on that first poo.

Make sure your catheter comes out nice and slow tomorrow, a weird feeling but it should not be painful. My catheter got stuck on the way out and was pulled out with more force than it should have been, my consultant is convinced that was the start of all my stricture issues. I have had numerous TWOCs and never failed, stay calm and relax. I slowly drink plenty of water before I get to the hospital and then follow the instructions of the nurses. I was told by the nurses drinking water too fast can cause retention. I took a spare pair of pants, trousers, plenty of pads and a towel to sit on in the car just in case. All the best for the future.

Thanks Chris.

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 MarieĀ. 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 20:41

Epic writing Steveā€” only excelled by Bazza. Iā€™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 Iā€™d be walking around in pee stained pjā€™s
Read my post and the ā€œ erecting the erectionā€ post , and Percy could be well on form soon

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 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.šŸ›€šŸ’›

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 23 Nov 2017 at 22:04

Steve’s Journey Part 9

Six weeks on from my operation, the day had arrived when I would journey back to Addenbrookes to get my histology results. Since the removal of my catheter twelve days after my operation I had on the whole managed to remain dry. On the odd occasion when laughing or not concentrating, Percy had produced a few little dribbles, but generally I am so thankful that my post-op fears of incontinence and the potential embarrassment that goes with it had not materialised.
My immediate ability to control my waterworks has allowed me to return to normality much quicker than anticipated, and amazingly only 26 days after my operation I was able to travel to Wembley and watch the Champions League game between Tottenham Hotspur and Real Madrid. I had won the tickets in a competition and desperately wanted to attend the match, but when my date for the operation had been confirmed I had dismissed the possibility from my thoughts. Being part of around ninety thousand fans watching some of the best footballers in the World is as good as it gets for a football nut. As I took my seat I couldn’t help but reflect on my recent journey and the amazing people in and around Addenbrookes that had allowed me this opportunity. The general speed of my recovery had been astonishing, however I did visit my GP in week four post-op, following a small discharge of blood and a slight pain when urinating. I was given a course of antibiotics and this quickly relieved the problem.

My emotional return to work had been made even more moving when my colleagues presented me with a welcome back present. This was in the form of a yellow inflatable duck paddling pool, which had been wedged in my chair with the aim of providing both comfort and an integral commode, should the MD still be unable to control his waterworks.
Matron Marie (my dear wife) had throughout my recovery period maintained a strict regime ensuring that my return to work was phased, with long journeys kept to a minimum. Along with the time management I was given strict instructions regarding hydration, with the aim of more juice and less coffee and only the occasional alcoholic beverage.
In an effort to get away after we would receive the histology results, Marie had taken it upon herself to arrange a three day stay in Norfolk at our favourite B&B, re-visiting the place we had gone prior to my operation. This would enable us to either celebrate the results or prepare for the next course of treatment should the news be less positive.
We set off for Addenbrookes from our home in Rutland and arrived in good time for our appointment with the consultant. I was feeling positive, we had made the difficult decision to go ahead with the operation, and nothing since that day had made me feel we had not taken the correct course of action for my personal diagnosis. The next few minutes would determine whether our decision to strike out at the cancer while I was strong and it was weak had been the correct one. Whatever the result, we both felt that to remove the Prostate was our best chance of fighting this awful disease.
I was called and was greeted by one of the nursing team who explained that she would be taking a blood sample which would be sent for analysis to determine my PSA level post operation. I would then receive my PSA result within a week by telephone. The PSA test would be carried out every three months for the first year and then every six months thereafter. I returned to the waiting room and very soon Marie and I were called through to meet the Consultant for the Histology result.
This moment had been playing on my mind ever since the appointment had been confirmed, and despite my positive recovery to date one always fears the worst. Subconsciously I was already planning in my mind the next part of the journey, should my cancer had not been fully contained within the Prostate, which would undoubtedly result in the need for Radiotherapy or other treatments. The consultant holding a small piece of paper first asked me how I felt generally, and then questioned me on my bladder control. I responded positively to both questions, confirming that I felt very well in myself and had gained full control as soon as the catheter had been removed. Excellent he said… he then went on to confirm the histology results concluded clear margins, with the cancer fully contained within the prostate, and on this basis no further treatment will be required at present. We will of course continue to monitor and carry out regular tests to measure your PSA levels.
I looked to Marie …had I fully understood what he had just said? Marie’s tearful smile said it all….we had the result we had prayed for. My emotions were all over the place, a mixture of relief and disbelief. The decision we had taken eight weeks earlier to operate had been fully vindicated.
In my case, the problems I had experienced with my stop start flow had been the trigger to investigate, and ultimately confirm the presence of cancer in my prostate. I am fully aware that this inadvertent warning sign that I was lucky enough to receive rarely happens, leaving many men facing prostate cancer sometimes in an advanced state, having had no symptoms at all.
My personal battle with this awful disease looks to have been won at present, and I will be forever thankful for the care and professionalism of the Addenbrookes staff throughout my journey. I would also say without hesitation, if your condition allows, take the cancer on and hit it while you’re strong and it is weak. I would like to wish all fellow sufferers of this awful condition my very best wishes, be positive and hang on in there. Thank you for reading my blog which I hope in some way has helped and maybe occasionally put a smile on your face.
Finally I want to thank my lovely wife Marie (Matron) for her support and guidance throughout my journey. We still have a few more hurdles to get over with Percy’s ability to stand to attention once again - our next goal!! Oooeerr Matron!!

The End

 

User
Posted 23 Nov 2017 at 22:24
Excellent results Steve - very pleased that all has worked out so well.
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User
Posted 17 Oct 2017 at 20:18
Hi Steve, you have captured the feelings that happen when you get the news you have prostate cancer. It turns your life upside down. I too was initially told by the clinician who carried out my biopsy that it was very unlikely I would have a problem. In May 2015 I was called back and given the news I had prostate cancer. I see from your profile you are due to have a prostatectomy. Your fitness will help with your recovery. I wish you all best wishes for the operation and recovery afterwards. Ian.

Ido4

User
Posted 17 Oct 2017 at 21:56

Hi Steve -I too am 59 and similar to you fit and healthy prior to diagnosis around 6 months ago. All I would say to you is look at these figures.

If they detect cancer early while still contained in the prostate  ;

the 5 year relative survival rate is 99%

the 10 year relative survival rate is 98%

the 15 year relative survival rate is 96%

Whether you have an operation to remove your prostate or beam radiotherapy or brachytherapy these rates are more or less the same - so whatever route you choose the cancer survival rates are amazing.

Take your time and decide what course you personally would like. You will find many who will recommend any one of those routes but in the end its a personal choice. Some people find that psychologically the removal of the prostate makes them feel more secure and I think, in general, consultants prefer this route however some prefer the other routes because they are less invasive. You can end up going round in circles but look at the relative possible side effects - personally I disregarded anything below a 5-10% chance - and if you need to then make a little chart which can help - above all try not to focus on the negative stories you will find on the internet - at this point your outlook is very good.

I had a PSA of 30 and 6 positive cores 4+3.

I chose hormone therapy followed by radiotherapy. Today I had my first check up after 4 months hormone therapy and my PSA has gone from 30 to 1. I start radiotherapy next month but already am thinking positively about treatment being over by Christmas.

User
Posted 17 Oct 2017 at 22:04

Brilliant description of the feelings associated with the PCa diagnosis.

I remember the day really clearly - 22nd December 2016 (low risk, high volume for my husband).

Wishing you all the best with your chosen treatment. We certainly felt better about things once we had a plan. There are many useful threads on here from those who have gone the surgery route,

Thank you for sharing

Clare

User
Posted 18 Oct 2017 at 08:42

Welcome Steve.
Good luck on Friday. I hope all goes well for you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Oct 2017 at 16:41

Steve’s Journey Part 2
With a PSA level of 4.4 and a Gleason score of 6, I was clearly a candidate for Active Surveillance, and this had been suggested as an appropriate way to progress. We looked at the various radiotherapy and hormonal treatments and realised these were all ways of suppressing the Cancer, but not a cure. Marie and I spent many hours reading clinical reports, and looking at feedback from Cancer patients who had already made their choice, and would be able to give us an accurate account of their experience and the resulting outcome.
I eventually came to my decision based on the following factors:

1.) At the age of 58, and being generally fit, I would like to think I had at least 20 years of quality life to look forward to.
2.) Had I been in my 70s then Active Surveillance may have been the correct path to take.
3.) My Father had died of cancer at the age of 64 and my Mother had survived breast cancer, so the genetic link was there.
4.) Treatment is more likely to be successful when the disease is at its early stages and contained within the prostate.
I did not feel comfortable with the random selection of the Biopsy locations, and the lack of evidence that a PSA level correlates to disease progression. This uncertainty would be ever present, should the Active Surveillance route be taken, and I realised this was something I could not live with on a day to day basis.
I wanted to “Attack the Cancer” whilst I was strong, and it was weak and was referred to Addenbrookes Urology Department for further review.
During my next consultation at Addenbrookes Hospital on 28th September (when I was informed that my PSA had elevated to 5.6) I confirmed with the consultant that I would like to have my Prostate removed. I signed the consent form and an appointment for surgery was given for two weeks later for Friday 13th October, when I would attend The Specialist Robotic Centre and undergo the procedure Robotic-Assisted Laparoscopic Radical Prostatectomy.

To follow…..

User
Posted 21 Oct 2017 at 16:43

Steve’s Journey Part 3
With the date for my operation confirmed as Friday 13th (could only happen to me!!), and in an effort to celebrate my 59th Birthday we decided to grab a long weekend on the Norfolk coast and headed off with George the fox terrier in our VW Campervan.
Beach walks, good food and a few pints of the local ale was the order of the day in an effort to dismiss all things “Cancer” from our thoughts. Holkham and Wells are tried and tested haunts that we knew would provide us with an escape from the impending stress and the ultimate change from normality. The time away proved a real tonic and getting older had, due to the forthcoming event, become more of a celebration than the norm for a guy of a certain age.
Monday arrived and the start of my last four days at work, where I am the MD with a shop fitting company. The staff were fully aware of my situation, as I had been missing in action on a number of occasions for various appointments and tests.
Whilst I sensed they were generally concerned for me, this is the construction industry, and concern was usually substituted with coarse banter regarding my age and things that I could look forward to post operation - like not being able to get an erection and the inability to control my bladder. Nothing’s taboo in the building trade! I count myself extremely lucky that I have a fantastic team that I know will run things in my absence, allowing me to concentrate on the challenge ahead and my convalescence.
Marie in her usual organised manner had already bought me a new wardrobe consisting of surgical stockings, loose fitting tracksuit bottoms, and an assortment of incontinent pads, briefs and boxer shorts. I think it was at this time it finally dawned on me the full extent of the journey ahead.
We were required at Addenbrookes at 7am on the Friday morning so we set our alarm for 4am allowing us enough time to shower and travel the 51 miles from our home near Stamford along the A1 and across the dreaded A14. Marie drove and we arrived at 6.30am, where we were welcomed into the day surgery unit.
I was aware that there would be two scheduled operations carried out on the day and prayed that I would be first to be called.
A nurse arrived in my cubicle and presented me with my patient name band and confirmed that I would be second on today’s list - my heart sank. We were told that my operation was scheduled for 2pm so I now had 6 hours to wait and worry.
We received visits from the anaesthetist and the Consultant who explained the procedure, confirming that based on the information they had, it would be likely that the lymph nodes would be preserved with every effort made to protect the nerve endings.
Talking with the guy that would be carrying out the operation offered me the reassurance I was looking for and as he departed Marie and I both commented that “it’s not just policemen that seem to be getting younger these days”!!
I had now changed into the robes I had been issued and at 1.30pm a gentleman dressed in green scrubs appeared at my bed to confirm that my time had come.
I gave my lovely wife a kiss and followed my attendant towards the operating theatre. The journey took us past the recovery room where to my dismay I saw and heard the guy who had just returned from his operation and was clearly in some discomfort. I shared some sort of awkward joke with the man in green that didn’t make any sense and wasn’t funny….I think I was now on auto pilot.
We entered the operating theatre and I was greeted by circa six robed and masked people, one of which I recognised as the young consultant, who spoke quietly and told me everything would be ok. As my last stab at humour, I reminded them all that today was Friday the thirteenth and could they try not to let me down. I think a couple laughed but a rather stern looking lady appeared to my right and said in a very matter of fact way “We treat all days the same here”
At this point I decided to keep my jokes to myself …As I lay horizontal looking up at a mass of bright lights my elbows were positioned into padded cradles, the anaesthetist then appeared to my left and found a vein in my left hand where he explained they would administer the anaesthetic. I was then asked could I confirm what I was there for….s*** had they forgotten!!! I confirmed I was here to have my Prostate removed…they then waved my consent form in front of me and asked me to confirm that this was my signature? Unfortunately, yes it is - I replied.
A mask was then placed over my nose and mouth and I was told to breathe in and out slowly…. the anaesthetic began to take effect and I drifted away.
I awoke from my slumbers and realised I was in the recovery room, a nurse was at my side asking me how I felt, reassuring me as I began to get my bearings and regain my senses. Receiving oxygen therapy via nasal cannula, and fluids via a drip, my first feeling was that of being very tired, but surprisingly nothing like the pain I had expected. There was an element of discomfort but clearly the pain killers were doing their job. I had been in theatre around 4 hours. The Consultant appeared at the end of my bed and speaking quietly confirmed that everything had gone to plan and he was able to leave the lymph nodes and had worked aggressively to preserve the nerve endings. I felt below the bed sheets and could feel the catheter in place leading to the bag hanging on my bed and was wearing snug fitting knee length stockings.
I remained in the recovery room for around an hour as they continued to monitor my condition and await a bed on the ward. Marie arrived and I remember suddenly feeling very emotional as the immensity of the procedure began to hit home. I was wheeled to the ward by a smiley guy called Ernie, with a theatre nurse and Marie by my side. We entered ward N2 and I was put in a room of my own - Bay 8.
Marie sat with me until around 10pm, looking tired she had been up since 4am and unlike me hadn’t had a five hour’s sleep, so she headed to her B&B. I sensed and hoped that the stress she had been under may have lifted slightly as a result of the day’s events.
My night’s sleep would be interrupted by the regular checks on my blood pressure, oxygen levels and heart rate and at 2am I awoke with the worst stomach pain I had so far endured. I was given liquid morphine and a peppermint drink in an effort to relieve the extreme spasms caused by the wind that is pumped into your abdomen during the operation.
At 6am I was awake and received a small injection to help prevent clotting. I remember thinking apart from my wind related pain the six wounds across my abdomen that had been access for cameras and the robotic instruments used to remove the prostate were still not causing me too much discomfort.
I was then given my first food since Thursday evening, Addenbrookes toast would not generally receive any awards but this was as good as it gets, washed down with a nice cup of tea.
At 7.30am my catheter bed bag was changed to a walking bag strapped to my leg which fitted snugly around my surgical stocking…very sexy!!
I was encouraged to get up and walk, with the target being 25 laps of the ward before I could be allowed to go home.
Assisted at first by “Ocean” - one of the amazing nurses that had been at my call all evening, I made my first steps astonished at how well I felt, bearing in mind the extent of the operation. After one lap I was left to continue my walks aimed at helping remove the wind from my abdomen. During my walk I had witnessed a lot of poorly people in far worse situations than me…It was a wake-up call and made me realise I should count my blessings and not even contemplate feeling sorry for myself.
I got back to my room and for the first time had a good look at the catheter and my new plumbing works in general. For the purposes of this blog, and with the intention of keeping things less clinical, I will from now on refer to my penis as “Percy”.
Percy had obviously been with me for 59 years and in general had never let me down. Like most blokes I would have liked Percy to have been a bit taller, but he had provided me with two lovely daughters and until recently had worked very efficiently. Percy now had a polythene pipe protruding from his mouth which led down my leg to a white bag that was attached with Velcro straps. The catheter generally felt comfortable apart from the mild sensation that I constantly needed a pee. As I got used to Percy’s new extension, the sensation became less of a problem. Having a very clever lever at the bottom emptying the contents of the bag was very easy. One of my main pre-op fears had involved the catheter and it’s mechanics - without doubt the thought of having to pee into a bag via a tube is every man’s worst nightmare…. I can confirm that from my experience this clever piece of equipment is very user friendly.
At noon Marie arrived as I tucked into my Meat pie and vegetable’s, followed by jam roll and custard. Soon after we received our discharge information along with a goody bag containing laxatives, injections, and various spare bags and tubes. I was on my way home, feeling positive, relieved and very emotional. The staff at Addenbrookes had been truly amazing, treating me with respect and dignity at all times. We arrived back at our cottage in Rutland late afternoon greeted by our trusty dog George, the fox terrier.
The procedure that had filled me with trepidation, and had played on my mind for weeks, was over… the next stage of my recovery would be down to me!
To Follow…

User
Posted 21 Oct 2017 at 17:03
Hi Steve

I just wanted to wish you well with the catheter removal outcome. The procedure is fine but I think all who have been through this were apprehensive as it's one more experience that none of us had on our bucket list (no pun intended).

All the best

Kevan

User
Posted 21 Oct 2017 at 20:48

Steve’s Journey Part 4
Despite the amazing care I had received from all the staff at Addenbrookes, the relief of being home was overwhelming. There had been dark moments as I had left our lovely cottage in Rutland early on Friday morning on route to the hospital, when I had feared I may not return. Whilst this may sound dramatic, I am a realist and despite all the positive noises I had heard leading up to my operation, with any Cancer no-one can be totally confident that all would be as expected once they had opened me up. The Consultant had made all the right noises after my operation so I now had to concentrate on my recovery and make sure I rested, and followed the post-op instructions that had been made very clear to me.
I was home, the pain from my wounds was minimal, and despite the fact my football team had lost 1-0 at home everything seemed rosy in the garden. I made myself comfortable in front of the television and tried to take in the events of the last 48 hours. At 5pm my youngest daughter Emily arrived along with my 89 year old Mother clutching a home-made cottage pie. I’m a typical bloke who generally tends to keep his emotions to himself but as I greeted them I completely lost control and cried like a baby. This was unlike anything I had experienced ever before and I suddenly realised that the journey ahead would clearly be more than just a physical one. The tears were mopped, I gathered my senses and we tucked into our evening meal. Mother and daughter departed without me shedding anymore tears, and I made my way up to bed retiring well before the end of Strictly Come Dancing. Once upstairs, Marie helped me to attach my overnight bag which we hung on the side of our cast iron bed frame… I was feeling extremely tired with the main discomfort coming from my lower abdominal area, which was feeling very bloated and sore, however I was still amazed with how little pain I was feeling from the six surgical wounds.
Marie gave me Paracetamol, Ibuprofen, and a laxative provided by the hospital. I slept well until around 2am when I awoke with severe abdominal spasms, these were attributed to the air that is pumped into you during the operation and I had been made fully aware that this would take a few days to disperse. I was conscious that I was already starting to expel small amounts of wind… unfortunately I was only managing a short tune - at a time when “Bohemian Rhapsody” was required! It’s at times like this a wife’s love is fully tested, and I’m please to say Marie did not at any time retire to the spare room. After a walk along the landing and a couple of small undistinguishable symphonies, I returned to bed and slept until 8am.
Sunday morning…. Marie gave me my daily Heparin injection, this would be the first of a two week cycle that is required to prevent clotting. It was now time for my first attempt at a shower…we are lucky to have a large walk in cubicle, so once I had found a way of positioning my bag it proved surprisingly easy. After my shower I sat on my bed and replaced my surgical stockings. I stood and looked at myself in the full length mirror - six purple wounds across my stomach and below a fairly sad looking “Percy”, who had reversed back into my stomach with the look of a shy tortoise!! Never mind, the sun was shining and I was still alive. I fitted my day bag and put on a pair of baggy tracksuit bottoms and headed down stairs for breakfast.
I had noticed I had lost a small amount of weight, but my appetite was good and in general I felt very positive. Breakfast followed by a short gentle walk to the bottom of the garden and back in the sunshine, and then the lounge for a rest… very aware that energy levels were still very low, but I was keen to walk as much as possible which made me feel better in myself and continued the attack on the trapped wind scenario.
Two days on from my operation, I was making sure I was well hydrated and very aware of the contents of my bag which was a dark red colour mixed with a small amount of debris. This tended to clear as the day went on in line with my increased water intake. I was conscious that plenty of water was important in an effort to keep the catheter and its tubes clear. At the end of day 2 post-op, I am pretty happy with how things are progressing, still feeling tired and suffering with abdominal cramps due to wind. Bowel movements are also causing me some discomfort but I suppose this can only be expected following this type of operation. On the whole I’m very positive and pleased with how I generally feel so soon after the op.

To Follow.

 

User
Posted 21 Oct 2017 at 21:23
Thank you for being so frank with your experiences, not something anyone would want to go through but many do and this is such a well written blog it will really help those who follow to understand the feelings not just the mechanics of what you go through.

Hoping to continue following your story and here's to a speedy recovery for yourself..

User
Posted 22 Oct 2017 at 15:12

Hi Steve,

A very good write up, you realise the differing procedures / protocols from hospital to hospital.   ie I stayed in one night and had an 'Intermittent pneumatic compression (IPC)' hanging on the end of the bed. I don't remember any surgical stockings at all.  

As other poster stated. All our paperwork was completed in a small room, then I had to sit in a wheelchair.    I never saw the ops theatre.

I had minimal pain, just discomfort from being constipated for too long. The fatigue comes and goes, so take it easy. The first few days I couldn't walk at any speed at all, took an age to cross the road.  It all steadily did come back, even if ED took over 2 years and still improving.  

Yes , I agree - keep the fluids flowing, 'minimal' alcohol & caffeine if you can. The lady who took my catheter out, (7 days post op) very professional, experienced, she said treat your bladder well, and gave me a ticking off for drinking cranberry juice.  I respected her opinion. Incidentally I was dry immediately and since. 

All the best

Gordon

   

User
Posted 22 Oct 2017 at 16:14

I agree with Gordon about protocols being different. I had surgical stockings fitted and for the first night they had wrapped devices round my legs that inflated and released all night. I spent twp nights in hospital but received no more clot busting medication after I left the hospital except for one night about a week after the operation I had to visit A and E with bad leg spasms that my GP was a bit worried about. I was given a precautionary Heparin injection and Gabapentin for neuropathic pain.  

Best wishes, Ian.

Ido4

User
Posted 22 Oct 2017 at 17:57

Steve I wish I was able to describe my  thoughts and feelings that I experienced during and after treatment  as well as you seem able to. These write ups of yours are certainly shared by myself and I guess many others who have and will go down the same pathway  Well Done and all the best.

User
Posted 22 Oct 2017 at 19:07
Hi Steve.

It's great to get all your thoughts and experiences down in writing. I am sure it will help your recovery. Your pre op figures are very encouraging which I'm sure you know. You have everything to look forward to as you have caught this thing at such an early stage. A lot of people wouldn't have gone for the surgery at your stage and it's very brave but I think you've given yourself the very best chance of cure. I think your rationale really well considered and even if my husband was a 3+3 would do exactly the same thing.

I do worry about the active surveillance thing as the consultant told my husband " you may miss your window of opportunity" for surgery.

We don't live that far from you in Northamptonshire and my husband is going to Leicester on Thursday to hopefully get booked in for Da'vinci assisted Prostatectomy.

He is 61 and an electrician and wants to continue working for another few years yet. His scores aren't as good as yours though at T2c, PSA 9.2, Gleason 3+4 10 positive cores out of 38( Template biopsy) but only one of those a 4.

Your account made us both laugh in places. We will be following your progress and hope my husband isn't too far behind you. There is lots of similarities in what your OH has done. i.e the collecting of different pants, joggers, pads etc. I've also got him in boot camp with his diet and pelvic floor exercises.

Let us all know how you get on.

All the best

Ann & Tony

User
Posted 22 Oct 2017 at 19:43
Originally Posted by: Online Community Member
I agree with Gordon about protocols being different. I had surgical stockings fitted and for the first night they had wrapped devices round my legs that inflated and released all night. I spent twp nights in hospital but received no more clot busting medication after I left the hospital except for one night about a week after the operation I had to visit A and E with bad leg spasms that my GP was a bit worried about. I was given a precautionary Heparin injection and Gabapentin for neuropathic pain.

Best wishes, Ian.

Some hospitals seem to give the clot-busting self-injections to everyone while others only give them if the tests indicate a higher risk. John had stockings but no blood thinning meds because they said his bloods were really good already.

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

User
Posted 22 Oct 2017 at 21:09

Hi Ann & Tony,

Thank you for reading my blog and I hope in some way it has helped you at this difficult time.

I hope all goes well at Leicester and you are offered the operation.

I'm sure having had the operation this is the best way forward for you.

Please keep in touch,

Regards Steve & Marie.

 

 

 

User
Posted 22 Oct 2017 at 21:12

Steve’s Journey Part 5

Three days on from my operation, and I awake on Monday morning having enjoyed my best night’s sleep to date - I had prior to going to bed triumphantly managed a very enjoyable poo. This amazing development was shared via a text to my daughters who both congratulated me on my efforts. How things had changed… I had been congratulated over the years for a number of things …...scoring a hat-trick…my performance as the Artful Dodger in the schools production of Oliver…passing my driving test…and becoming a father… but never before had I received praise for opening my bowels!! Only fellow sufferers who have experienced the post side-effects of a Prostate cancer operation will fully embrace this milestone. I was feeling positive and following my morning shower even Percy seemed more perky. Whilst I felt better in myself, I was under no illusions of the task ahead… the contents of my bag still had the look of a cheap Shiraz, and despite the previous evenings events my abdomen was still bloated and sore. I was also still feeling mild discomfort from the catheter and the constant feeling of needing a wee was starting to get to me.
Marie was quick to remind me that this was only day three and things were going to take time. Day time television wasn’t helping…. there is only so much of “Homes under the hammer” and “Jeremy Kyle” a man can take.
In the afternoon we took a slow walk with George our Fox Terrier around the field at the bottom of the garden, the sun shone and I started to get things back in perspective. I received a lovely bunch of flowers and a get well soon balloon from the team at work, along with a number of cards and messages from well-wishers. The walk was great, but it soon became apparent how quickly I became tired and reluctantly the settee and daytime tele was back on the agenda.
The night ahead would not be so good, with the abdominal pains returning with a vengeance. I had taken to using a heat pad that you warm in the microwave, which placed on my tummy was proving a great help in suppressing the abdominal cramps.
Tuesday morning came and we received two appointments from Addenbrookes, one to confirm I would be having my Catheter removed next Tuesday, which would work out to be 10 days since my operation…and the second appointment was for 23rd November…..six weeks on when we would receive the Histology results. I was feeling brighter and desperate to get out of the house for a while, Marie drove and we set off to find a place for coffee and a change of scenery… not sure whether it was by chance or Marie’s warped sense of humour, but we ended up at a local windmill… don’t seem to be able to get away from the wind theme at the moment!!

To Follow…..

User
Posted 22 Oct 2017 at 22:58

Hi steve been following your posts of your journey, ive been laughing to myself at your sense of humour through your journey, its great that you can make light of some of the worst experiences youve been through, its fantastic that your sharing your journey and lots of people will benefit from it, and im sure maybe feel a little less worried about there own treatment etc.
although my OH diagnosis and treatment route different to you we try and still have a joke about some of the sideeffects from hormone treatment etc, we find that a bit of light humour lightens the load a bit..good luck and best wishes with your recovery..look forward to your updates..joxx

User
Posted 23 Oct 2017 at 09:48

 

Steve’s Journey Part 5

Three days on from my operation, and I awake on Monday morning having enjoyed my best night’s sleep to date - I had prior to going to bed triumphantly managed a very enjoyable poo. This amazing development was shared via a text to my daughters who both congratulated me on my efforts. How things had changed… I had been congratulated over the years for a number of things …...scoring a hat-trick…my performance as the Artful Dodger in the schools production of Oliver…passing my driving test…and becoming a father… but never before had I received praise for opening my bowels!! Only fellow sufferers who have experienced the post side-effects of a Prostate cancer operation will fully embrace this milestone. 

So true Steve, I remember wondering if I would ever poo again usually being a very regular chap!

 

Ian

Ido4

User
Posted 23 Oct 2017 at 18:30

Steve

Great set of posts Steve, and congratulations on that first poo.

Make sure your catheter comes out nice and slow tomorrow, a weird feeling but it should not be painful. My catheter got stuck on the way out and was pulled out with more force than it should have been, my consultant is convinced that was the start of all my stricture issues. I have had numerous TWOCs and never failed, stay calm and relax. I slowly drink plenty of water before I get to the hospital and then follow the instructions of the nurses. I was told by the nurses drinking water too fast can cause retention. I took a spare pair of pants, trousers, plenty of pads and a towel to sit on in the car just in case. All the best for the future.

Thanks Chris.

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

Funny as always. They do say laughter is the best medicine.šŸ˜€ 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 vetā˜ŗ)

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 MarieĀ. 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"Ā 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"Ā 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"Ā. 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 Steveā€” only excelled by Bazza. Iā€™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 Iā€™d be walking around in pee stained pjā€™s
Read my post and the ā€œ erecting the erectionā€ 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 thingā˜ŗ.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.šŸ˜· 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.šŸ›€šŸ’›

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
User
Posted 05 Nov 2017 at 17:03

Best wishes Steve

Jeff s

User
Posted 06 Nov 2017 at 03:46

Originally Posted by: Online Community Member
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

Well the catheter removal felt like all his birthdays had come at once! The nurse doing the removal said it was the biggest catheter tube available and she didn't often see that size http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

Since then I would describe the incontinence as a tap in need of a new washer , hopefully that will improve in time but at least we can leave the house without him being in pain , although I am writing this at 4am as he keeps getting up for the loo !

User
Posted 23 Nov 2017 at 22:04

Steve’s Journey Part 9

Six weeks on from my operation, the day had arrived when I would journey back to Addenbrookes to get my histology results. Since the removal of my catheter twelve days after my operation I had on the whole managed to remain dry. On the odd occasion when laughing or not concentrating, Percy had produced a few little dribbles, but generally I am so thankful that my post-op fears of incontinence and the potential embarrassment that goes with it had not materialised.
My immediate ability to control my waterworks has allowed me to return to normality much quicker than anticipated, and amazingly only 26 days after my operation I was able to travel to Wembley and watch the Champions League game between Tottenham Hotspur and Real Madrid. I had won the tickets in a competition and desperately wanted to attend the match, but when my date for the operation had been confirmed I had dismissed the possibility from my thoughts. Being part of around ninety thousand fans watching some of the best footballers in the World is as good as it gets for a football nut. As I took my seat I couldn’t help but reflect on my recent journey and the amazing people in and around Addenbrookes that had allowed me this opportunity. The general speed of my recovery had been astonishing, however I did visit my GP in week four post-op, following a small discharge of blood and a slight pain when urinating. I was given a course of antibiotics and this quickly relieved the problem.

My emotional return to work had been made even more moving when my colleagues presented me with a welcome back present. This was in the form of a yellow inflatable duck paddling pool, which had been wedged in my chair with the aim of providing both comfort and an integral commode, should the MD still be unable to control his waterworks.
Matron Marie (my dear wife) had throughout my recovery period maintained a strict regime ensuring that my return to work was phased, with long journeys kept to a minimum. Along with the time management I was given strict instructions regarding hydration, with the aim of more juice and less coffee and only the occasional alcoholic beverage.
In an effort to get away after we would receive the histology results, Marie had taken it upon herself to arrange a three day stay in Norfolk at our favourite B&B, re-visiting the place we had gone prior to my operation. This would enable us to either celebrate the results or prepare for the next course of treatment should the news be less positive.
We set off for Addenbrookes from our home in Rutland and arrived in good time for our appointment with the consultant. I was feeling positive, we had made the difficult decision to go ahead with the operation, and nothing since that day had made me feel we had not taken the correct course of action for my personal diagnosis. The next few minutes would determine whether our decision to strike out at the cancer while I was strong and it was weak had been the correct one. Whatever the result, we both felt that to remove the Prostate was our best chance of fighting this awful disease.
I was called and was greeted by one of the nursing team who explained that she would be taking a blood sample which would be sent for analysis to determine my PSA level post operation. I would then receive my PSA result within a week by telephone. The PSA test would be carried out every three months for the first year and then every six months thereafter. I returned to the waiting room and very soon Marie and I were called through to meet the Consultant for the Histology result.
This moment had been playing on my mind ever since the appointment had been confirmed, and despite my positive recovery to date one always fears the worst. Subconsciously I was already planning in my mind the next part of the journey, should my cancer had not been fully contained within the Prostate, which would undoubtedly result in the need for Radiotherapy or other treatments. The consultant holding a small piece of paper first asked me how I felt generally, and then questioned me on my bladder control. I responded positively to both questions, confirming that I felt very well in myself and had gained full control as soon as the catheter had been removed. Excellent he said… he then went on to confirm the histology results concluded clear margins, with the cancer fully contained within the prostate, and on this basis no further treatment will be required at present. We will of course continue to monitor and carry out regular tests to measure your PSA levels.
I looked to Marie …had I fully understood what he had just said? Marie’s tearful smile said it all….we had the result we had prayed for. My emotions were all over the place, a mixture of relief and disbelief. The decision we had taken eight weeks earlier to operate had been fully vindicated.
In my case, the problems I had experienced with my stop start flow had been the trigger to investigate, and ultimately confirm the presence of cancer in my prostate. I am fully aware that this inadvertent warning sign that I was lucky enough to receive rarely happens, leaving many men facing prostate cancer sometimes in an advanced state, having had no symptoms at all.
My personal battle with this awful disease looks to have been won at present, and I will be forever thankful for the care and professionalism of the Addenbrookes staff throughout my journey. I would also say without hesitation, if your condition allows, take the cancer on and hit it while you’re strong and it is weak. I would like to wish all fellow sufferers of this awful condition my very best wishes, be positive and hang on in there. Thank you for reading my blog which I hope in some way has helped and maybe occasionally put a smile on your face.
Finally I want to thank my lovely wife Marie (Matron) for her support and guidance throughout my journey. We still have a few more hurdles to get over with Percy’s ability to stand to attention once again - our next goal!! Oooeerr Matron!!

The End

 

User
Posted 23 Nov 2017 at 22:24
Excellent results Steve - very pleased that all has worked out so well.
User
Posted 24 Nov 2017 at 07:38

Excellent news and Iā€™d love to be where you are. With a solid effort and daily regime you will hopefully get Percy back. Be prepared to try everything and it may take up to 2 yrs. But worth it. Good luck

User
Posted 24 Nov 2017 at 08:45
Superb news, long may it continue!
User
Posted 24 Nov 2017 at 11:10
The best news ever Steve šŸ˜€šŸ˜€šŸ˜€šŸ˜€ So happy for you and Marie. Now you can really enjoy your life again.

Tony was first on the list this morning so at least we didn't have long to stew.

He is in there as we speak and surgeon says he will ring me later so hopefully he will be out by tomorrow tea time. Our wedding anniversary tomorrow so that would be great just to have him back home.

All the very best for the future.

Ann & Tony

User
Posted 24 Nov 2017 at 13:01

Keep the good work up well done .  Andrew

 

User
Posted 24 Nov 2017 at 14:30

That's great news Steve.

What was your final diagnosis - any changes?

Good luck with the recovery

Clare

User
Posted 25 Nov 2017 at 01:08

Great News, Steve. 

You're doing really well. 

Long may it continue.

All the Best,

Steve

 
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