Steve journey so far.

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…

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.

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.

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

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.

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

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.

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…..

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

Best wishes Steve

Jeff s

Excellent news and I’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

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

That's great news Steve.

What was your final diagnosis - any changes?

Good luck with the recovery

Clare