12 Weeks, 2 1/2 Months Post Open Prostatectomy Summitted Snowdon in North Wales

Today 30th December with some Scout Leader friends I took on the challenge of a 9 mile hike ( 14.6 km ) from Llanberis to summit Snowdon the highest mountain in Wales - with an ascent of over 1000 metres/3300 feet.

What made this more of a challenge is that I havent climbed a mountain of note since before my operation and also apart from some local walking for an hour or so I have only done the recommended abdominal exercises and pelvic floor.

In addition, this was no stroll in the park. I was kitted out in full winter mountain gear and had to carry my winter ruck sack with extra equipment.

Further more, it was the weather conditions were horrendous, with 60 mph winds and gusts higher. Ice and snow on the higher slopes, torrential rain and hail and snow. At one point our faces were being blasted by ice and hail. Wind was knocking us almost off our feet. But I and my friends made it. The summit was all ice and dangerously slippy in the high winds. You can see the steps up to the trig point in the photo below.

We started from the beginning of the path at 11am and got down at 4.30 pm in the dark.  Most guide books say you can do it in 5-6 hours , we did it in roughly the same.

I was slow going up , it was really hard work,  but i got to the summit station in 3 hours, shattered.
I could feel the operation - what I mean is that I could feel inside me whatever the surgeon had done. Suprisingly going down hill I had pain in my pelvis and spine - I had this pre-operation and thought it had gone. I do need to have this checked out.

When I got back to the car I sat down to change my boots and seemed to sit down too quickly and being low down in the car I felt some internal pain. This was around my abdomin and in particular in the same place lower right abdo where I have been having niggling pain since hospital.

All told it was a great day and to me proves that after this kind of surgery you can get back to normal, but it takes a bit of time.


A selection of photos from the day, including those from the summit station where I took a rest before heading down are shown below. All the snow and ice was above about 650 metres.

Christmas Wishes and looking forward to a great 2013

Just a big thankyou to all my supporters in 2012 and the doctors, nurses, medical and support teams who have looked after me from diagnosis, through treatment and now moving forward into the future. With all your help I have now a positive outlook in the future and looking forward to a healthy long life as a cancer survivor.  Will post again in 2013 when I have my first post operative ultrasensitive PSA test - get the results on 21st Jan 2013 - will be looking for a score of less than 0.1 which will be the best Christmas / Birthday present I could wish for.

Special mentions :

Mr Alan Doherty (Urologist / Surgeon)
Zena ( his PA )
Birmingham Prostate Clinic and staff
Bupa Oncology Support team
Helen Kyle at HP Occupational Health
Linda Clark , my HP manager whose support has been fantastic
Julia Cheetham - Clinical Nurse Specialist at Royal Shrewsbury
Mr Lynn - urologist Royal Shrewsbury
My work friends at HP and in UK Defence

And all the Scout and Guide Leaders from around the UK and in particular Shropshire County Scouts who raised money at the County Ball for Prostate Cancer.

News on Snowdon - I am still hoping to ascend Snowdon this month but the weather has proved a problem with heavy rain and storms (high winds). Fingers crossed if weather improves I will have a go.

10 weeks post Open Radical Prostatectomy and looking good

Really looking forward to Christmas and 2013.

Now for the health update........
Arm has healed and no issue now though am not using under stress.
Scar is healing well fading near belly button though angry and red lower down.
Getting pain when stretching , in lower right abdomen seems to be same place I had pain post op.
Been sneezing a lot and this may have aggravated something inside - not the surgeons fault, the problems of winter and also we are cleaning the house ready for Christmas and I have a dust allergy!!
Keeping up with pelvic exercises.

Ok, its now 10 weeks since the operation under the skilled hands of Alan Doherty at the Birmingham Prostate Clinic ( The Priory Birmingham ).  Everytime I think back at that time I am so thankful that he did the operation and has been looking after me. When you have this disease you have a lot of time on your hands to think and also with online forums , to talk with others who are on the same journey as yourself. And thats what makes me so thankful that I did the research, I educated myself, I was positive and chose the right guy to look after me.

Where does this confidence come from ? I read so many comments from people in the UK on ProstateCancerUK and Macmillan where people have been left with positive surgical margins, infections, with major incontinence issues and of course with the obligatory erective dysfunction. I am buoyed with the fact that Alan monitors all his patients and the outcomes are really positive.

My histology - margins all negative
My incontinence - one pad for minor stress incontinence ( to be honest - I am as continent as any woman now - you have to remember that following this surgery the male anaotomy is more inline with the female ).
My Infections - none to think of - slight burning - it should pass.
ED - will take time but that goes without saying for everyone - but he saved both neurovascular bundles whereas my NHS man was only going to attempt to save some on the left.

Continence is a big issue. See Urinary Incontinence Following Radical Prostatectomy - significantly this article says ".......  in high-volume centres with a small number of surgeons, early post-prostatectomy continence rates are very high (91–98%)....." The Birmingham Prostate Clinic falls into this category. Incontinence is a major factor for me and other men, as it goes on to say "....Overall, incontinence after radical prostatectomy has a major influence on quality of life, physical activity and social wellbeing.^....."
So at 10 weeks I think I am doing fantastic.

Still taking the Ciallis 5mg a day - hoping things will swing into action .
Read a great article Post Operative Sexual Function following Radical Prostatectomy at the European Urological Review website. It is really worth reading for those who are interested in the side effects and impact on quality of life following this operation. Its also justification for the NHS medication that I am being prescribed, also it reminds me that I need to discuss with GP and Alan next steps in treatment and options. ( Though another patient of Alan's mailed me recently that his sparked into life 5 months post op ).

So am I still getting tired?

Walking is still tiring but its lack of fitness not the operation. I can see now why the benefits of being fit before you go into hospital  is so important. As you tend to reduce your exercise levels during post op recovery you put on weight and become less fit. This seems to contribute to the tiredness , especially in the afternoon. Combine this effect with coping with being diagnosed with cancer, the stress of the decisions, the operation, the recovery, the side effects of surgery and then deciding on work .. All this combines to make you tired. Its so important to maintain a healthy lifestyle through recovery to combat this impact. The physio in the hospital tends to give you exercises for your abdomen and pelvis but doesnt go through a bigger fitness regime - maybe thats an improvement that could be suggested to the process of recovery for all patients. My big plans to climb Snowdon this month or a mountain of equivalent stature may have been over optimistic. We will see, I am still confident I will have a go at this before the year ends.

Christmas is nearly here and its time to put on cheery face and have a good holiday period. Have put to the back of my mind the anxiety of the fact that though I have a job, being away for a time means I have no role so it will be something new for me back at work in Jan 2013.

Also, January is a big month - it will be the first ultra sensitive PSA test following my operation. Will have the blood test around 9th Jan and then go see Alan at the clinic on 21st Jan. Hoping for a result of less than 0.1, 0.02 would be a fabulous result as would 0.05, figures that I see a lot of other people who have had the op and have been monitored for a number of years. This would hopefully indicate that there is no 'persistence' ie some cancer cells have been left behind . Would then be just monitoring for 'recurrence' over the next 10 to 15 years.

Have a happy holiday everyone - here's lookign forward to a better 2013 than 2012.

9 Weeks Post Surgery, Christmas Approaching

Well its been 9 weeks and good progress is being made.

The arm seems to now be settling down with the rest its had and isnt playing me up as much. No ibuprofen needed. Has meant I can now exercise more.

Continence - controlling this really well, so much that yesterday I tried goign all day without a pad with only a slight problem with a couple of sneezes. Being at home it was no great deal. However today as i was in and out of the house I decided a pad was needed for comfort. I am now going all night without a pad though which is really great. Also, sleeping a lot better and only getting up once during the night to use the loo. Can also drink until going to bed without worrying.

Penile burning sensation and occasional flow issue? I am getting a burning sensation in my uretha, will have to see what the consultant says when I go back in january. If it carries on over Christmas I may drop a urine sample in to the GP to make sure I havent picked up some kind of infection. Though this could be related to the BPH and Prostatitis that showed up on the pathology report.

ED - still no erections that would be good enough for penetrative sex but this is to be expected. A member of one of the support forums who had the same op and surgeon as myself said it took 5 months for him and then he woke up with a morning one. So time will tell. Blood flow is there and the 5mg of Cialis that I have been prescribed daily may well be working. Lot of guys use VEDs and others use Caverjet injections .

More exercise and less use of ibuprofen is exposing the healing pains more. Also when stretching I am still getting a niggling pain in the lower right abdomin. This is the same place that i have been getting the pain since the operation and when the drain was taken out. Weird. It is the worst of any of the internal pains and I would have thought it would have gone by now. Hopefully I havent pulled anything.

Task this week was to renew my Bupa membership , have done this to make sure I am covered for the next years treatments\monitoring.

Time to put up the Christmas lights and decorations. To save driving ordered the tree online.
Spoken with work today and had my annual review. Went ok. Going back on 2nd Jan 2013 - gonna take it easy and get fitter before I go back. I may not be in the office but lots going on to prepare for 2013 and work.

8 Weeks since surgery - getting better

Well following a traumatic week last week the weekend seems to have settled things. No change on the ED front from last week - still early days. Having the note for work and a renewal of my prescription calmed me down. Can see why I am normally on high blood pressure tablets - 'dont panic ... calm down' -:)  Must remember to write the letter to the GP for the december renewal before Christnmas as they need  4 days to do a prescription!!!!! A whole week of my life seemed to pass last week due to the stress of a simple Med 3 form and a prescription renewal. 

Continence - am really happy with this - dont have to wear a pad at night in bed. I suppose I could get away with not wearing one during the day at home but the occasional leak is a concern. Being paranoid about cleanliness I dont want to walk around smelling of urine and the benefit of the pad is that they are odour eaters, so the occasional dribble wont smell. What the hell, for £2.50 a box and a box lasts a 12 days then I am not bothered. It gives peace of mind. Must say, I forgot to do a pelvic 'squeeze' when I got out of the car after walking up and down The Wrekin and wet myself - the Tena's saved the day .. does make me laugh when it happens.  Wearing Tena for Men pads really does give you the confidence to be out and about.

Left arm isnt as bad this week, but still gives me grief especially when tryign to sleep. The ibuprofen and paracetamol are doing the job. I think its just a question of time healing and not overdoing things with it so the mscles have time to rest.

Lower back pain is on and off - live with it! Does it have any significance with occasional burning feeling when urinating? This should have gone now the prostate has been removed  - BPH etc. One to monitor I think. After all the issues with the GP last week , do I want to book and appt to have a breast lump checked? May leave it a while . Am sure its getting slightly larger and there is a small one growing next to the existing one. Cysts probably.

Did more in house and in the garden over weekend and streched a bit more. I know my limitations as I could feel the pressure I was putting on my insides.  Also walking down hill on the Wrekin really did put pressure on insides as I was sore again that night. I suppose it will take time. Need to see if i can wear a rucksack and see what difference it makes.

Sneezing again as the house is being prepared for christmas. Played havoc again with the right hand side lower abdomin. Funny thing is its that same place I had the problem in hospital and when I came out. Its always the same place . Will see if I still have pain there end of January when I see Mr Doherty.

A friend over in Llanberis, Mountain leader and author, has volunteered to go up Snowdon with me over Christmas \ New Year to make sure I get up and down safely. With all the weather it will be ice axes and crampons. Really want to do this to show that even just over 2 months after this kind of surgery its possible.  Paul has also said he will look after me on a trip up Moel Eilio for the Winter Solstice - its a 726 metre climb above Llanberis but to help as I am not as fit they can get me 200 metres higher up to start. Lets see how things go - I get very tired just going for a walk up The Wrekin - dont know how I would cope with Wales.

7 weeks post Op and now getting NHS\GP Stressed!!

It’s now 7 weeks since the operation, 6 weeks since my hospital release and just under that since the catheter was removed at the TWOC.

Perineum pain is still here, grows on me when driving or after walking or standing for a while. Rest seems to calm it down – the pain is more of a burning sensation. It is also aggravated when I do my pelvic floor (kegel) exercises, which I must keep up each day. These exercises are keeping me at between 1 and 2 incontinence pads a day. I say between 1 and 2, its only 1 pad when I reduce my fluid intake and reduce exercise, I have been drinking less than 2 litres and more like 1 litre a day. I am working this week on increasing fluid intake back up to over 3 litres a day (my correct intake) and will be starting a new exercise regime.

Am still suffering from the left arm pain that was diagnosed at the ultrasound as muscular. This has restricted my exercise ability. Ran out of the naproxen tablets the GP had prescribed and have had problems getting in touch with my GP so have gone back to 400mg ibuprofen 2 to three times a day. This seems also to be helping with lower back pain that I have and also some upper back pain. The upper I assume to be posture as I have been sitting too much. The lower back pain is the same pain I had pre operation for a couple of months. If this stays I will ask the consultant about it in January. Hopefully exercise will help.

Internally I am still having the healing pains – especially when any pressure is placed on my abdomen through sitting in the car, going up and down stairs or stretching. Been sneezing again this week and the towel has had to come out again to apply as a pressure pad in my abdomen. Lower right gives the same severe pain I had post op and when I left hospital. I had hoped it had got better but it has come back again.  Time can only heal all of this. Early days I think, but another reason why I am not back at work or doing long distance driving.

Erectile dysfunction - no change since I started on the 5mg daily Tadalafil (Ciailis) - increased blood flow and can get engorged but not sufficient for any form of penetrative intercourse. Can feel the expansion and nerve sensations I assume due to the blood flow and the drugs relaxing the muscles. Studies say that this might be the case for anything up to 2 years - longer if I am unfortunate. Maybe things will be better with both nerve bundles saved. This blood flow induced by the drugs helps the nerves recover and I believe will help prevent atrophy  -  celluar death! ( More about this on a later blog )  - Quality of Life is a major concern for me and there is a very good medical article that covers this ... "post-surgical quality of life is becoming a greater concern for patients seeking treatment for prostate cancer in the era of early detection" 

 See - Penile Rehabilitation After Radical Prostatectomy: Important Therapy or Wishful Thinking? 

Getting very tired by mid-day, need to nap\sleep – really need to get some more exercise done I think to help get me fitter – maybe this will combat the tiredness. Have bought a Pilates beginners DVD on Amazon which should be here Thursday and can start to do those exercises in the house. -  Thanks to Helen at Occupational Health who has recommended I try this.

Lots of stress this week which has not helped. Spoke to work and told them I would sort out a new ‘fit note’ – the one the GP had given me previously was only for a month.  My ‘fit note’ for work ran out on Sunday, also the tablets for blood flow and to combat atrophy as part of penile rehabilitation run out Wednesday so I contacted my GP surgery Monday morning at 8.30 am. Was told to phone at 11 am. Phoned then and gave them all the details, including the pain details above and asked for a GP phone back. Nothing happened to I phoned at 3am. At 3am they told me the Dr would call back later that day but then told me for the prescription renewal I had to take a letter in. Too late for today so I said I would do it next day. Waited all afternoon into evening and didn’t get a GP call. That’s when I decided to self-medicate with the ibuprofen. Sent an email to work to tell them the position.

Following day, phoned surgery at 11am and told to phone after 3pm as the GP’s pass the paperwork out to reception after lunch and the note would be there then. Drove to GP’s and dropped in a letter for the repeat tadalafil prescription. At 3.40pm I phoned the surgery. No note for me and my GP was no longer at the surgery. Lovely girl on the phone said she would put a note in the GP’s in tray to have it dealt with the next day. She told me I needed to phone back after 3pm the following day. Did explain that this would now be 3 days since my first request – nothing she could so – not work getting worked up about, so I was really calm with her on the phone – but my blood was boiling when I put the phone down. If I worked like this I would be out of a job. This is why this week I have increased my premiums on my private health care with Bupa. I need to make sure I am covered every way so I don’t have to rely on the NHS. I pay a fortune each month for NHS services in my tax\NI and this is the service I get. Another reason why for years I didn’t get sick!!!!!!

6 Weeks Post Op ( Open Radical Prostatectomy ) progress report

Well its now been six weeks since the operation and I am still recuperating at home.
Started to drive my car on short journeys. I did think everything was ok, I live down a potholed country lane so its quite violent and bumpy driving down it. I got over the shock of the bumps but have found that doing this a couple of times, together with driving and then sitting around or walking around causes the burning \ soreness inside where the district nurse a few ago ago described as the area where the prostate was removed - internally in the perineum area. Sunday I went to a scout workshop\presentation day at a  local school , 10 mins drive away. Spent most of the day ( 9am to 3.30 pm ) sat down on different chairs , by the afternoon this burning had surfaced.

In addition to the discomfort of the burning, I now seem to be getting more and more what I would call 'healing' pain. This pain feels like where maybe I have been stitched inside. These discomfort pains are across the abdomen rather than down and are internal. Still getting a sharp pain when i cough or sneeze internally on the right side above the groin area - have had this since the operation , suppose it will go over time.

Lots of these pains are occurring with the extra movement I am doing in trying to exercise and also with sitting driving or in upright chairs. Maybe I am pushing down on the internals .. I dont know. Will just have to wait and see.

Sunday's day out also proved I really wont be ready for work yet. By lunch break I was tired, by 3pm I was shattered and nearly out on my feet but hadn’t actually done anything! When I got home I fell asleep. Could be the Anaemia that I was told I have post op due to the blood loss. Need to ask the GP how long I need to take the iron tablets for and maybe get my blood levels checked.

The arm pain is still here - going to have to get on with it and see what happens. Will update the GP next week if no improvement and see if anything can be done - maybe some light physio will help.

As the nurse in the hospital told me - "your body will tell you to slow down - pay attention to it ... " Well yes I am.

Am definitely not yet ready for work and all it entails. Still early days.

Great conversation with my NHS Clinical Nurse today who again told me to call her anytime for advice. She has asked if I can get copies of my consultants letters to the GP sent to her for my NHS Hospital records. She has left an appointment in the NHS diary for August 2013 as this would be a year post my last visit to their cancer service. She has agreed that from an erectile dysfunction point of view, keep taking the Cialis as prescribed by the GP and recommended by Mr Doherty ( this is the NHS NICE Pathway recommendation and what Shropshire recommend in my case ) - it helps with atrophy. She told me not to worry about the other aspects of the male reproductive system - its more important to allow the healing.

Saw a very worrying post on prostate cancer uk forum today - one chap like me living in Oxfordshire has been refused his ED medication as the PCT in that area has now down graded to Low Priority erectile dysfunction and these treatments on costs grounds. Absolute scandal. Its worrying enough having cancer and then the treatment, but to now have to worry that the local NHS may refuse to supply treatment for the side effects of the cancer treatment is awful.

What these pencil pushers don’t realize is the anxiety of ED and its impact on your quality of life. Furthermore, when people such as myself and others chose our cancer treatment it was on the basis that NICE , NHS and Medical Experts told you that the side effects would be treated. On balance , if we had known they would not then a different cancer treatment may have been chosen. Just got to hope that Shropshire don't go the way of Oxfordshire

Fabulous news for my surgeon/urologist Mr Alan Doherty and the Birmingham Prostate Clinic. He received a Highly Commended ( runner up ) in the HSJ Awards 2012 for Enhancing Care with Data and Information Management. He was beaten to first place by an NHS London system that could be rolled out national but still finished above other systems from:

Barts Health Trust
East Midlands Ambulance Service Trust, National Ambulance Clinical Quality and Research Groups and University of Lincoln
NHS North West London
North of England Cardiovascular Network and Digital Spark Ltd
The Royal Marsden and McKesson

Am really glad that I have the benefit of being part of this innovation in patient outcome management..

Start of a new Journey in Life, my Prostate Cancer Story : 5 weeks since surgery - Reflections on my Future

Start of a new Journey in Life, my Prostate Cancer Story : 5 weeks since surgery - Reflections on my Future: Its been five weeks since surgery now and I have been thinking a lot about what has happened and my life ahead.  The pain in the arm hasnt...

5 weeks since surgery - Reflections on my Future

Its been five weeks since surgery now and I have been thinking a lot about what has happened and my life ahead. 

The pain in the arm hasnt gone away and thats getting me down. The ultrasound on monday said it was a muscular problem. How this happened I havent a clue as about the only thing I have lifted with that arm is a cup of coffee or pint glass of water. Going to have to muddle on then and see if it clears; its not as bad as two weeks ago, but its causing me real problems driving and I cant see me doing an 8 hour daily drive and 5 to six hours of work in the south with it like this; but then am still not happy with continence and internally I still have pains - though these are niggling healing ones I think. Problem with driving is that sitting for so long hurts internally and especially when I get out of the car and stretch. Also, am starting to walk at normal speed - this is also causing 'healing pain' - then - No Pain No Gain they say !

Back to my opening remark, have started to question did I make the right decision; it keeps going through my mind and I keep telling myself I did. I could never have lived knowing that cancer was growing inside me, but this life ahead is going to be a challenge to get used to.

I dont think people who have not had the experience really understand what myself and others are going through. I know each day I am having to pick my chin up and put a smile on my face when inside I really dont feel like smiling. I suppose I can recover quickly from the physical side of things but mentallly this is going to take a long time and I dont know if I will ever recover.

People read books and kindles -:) I tend to read a lot onine. I love the NY Times and they have had great coverage on the topic of Prostate Cancer. Read the other night an article on the side effects that has really hit home with me   The Side Effects? Well, There Is One...
 
Am really concerned that I am at the start of my new journey, a journey of revovery from cancer that will need to cope with the effects of incontinence and ED. I think now in my 50's I will be able to cope with stress continence - ok am going to wet myself sometime and will have to face the fact that it might happen in public. I can live with using pads for those important public facing days to save the embarrassment.  But when I get older , in my 60s and 70s, if I live that long, hopefully it wont get worse and I wont smell like a urinal and be an embarrassement to those around me.

An then there is the ED side of things; dont know how I can write about what I am feeling about this yet as its still early days. Yes, Dead men Don't have Sex - I read the book - but the feelings and changes that you experience are more than just this. You dont get to know about these feelings and changes until after the treatment and then its too late to turn back the clock. Have i made the right decision, if I live another 20 years until I am in my 70's can i survive those years with these feelings - would I have been better to not have had the treatment and risked the cancer spreading - I dont know, will have to see how it goes.

"...........Jonathon Alsop, 53, a Boston wine writer, said his surgeon, Dr. Sanda, prepared him for sexual side effects, but nine months after surgery, he sometimes felt like a teenager.
“I never know what my body is going to do from moment to moment, and when I do have sex, I’m pretty sure I’m doing it wrong,” he said. “I try to have a sense of humor about it.”.............."

I wish i could just feel like that teenager ... maybe next month or next year ...

For now, its time to physically heal and look toward my first post op PSA test at the end of January 2013 - should be less than 0.1 .....

Sneezing, Driving, Walking

Apart from the left arm problem that hasn't gone away , its four and a half weeks since surgery and the scar it healing well on the outside.

Internally things are still healing, I know this as I have the sneeze test. Not that I have a cold but I sneeze a few times a day and still have to compress my stomach or push my fist into my abdomen on the right side to prevent the pain I still get internally from this bodily action. Drove the car yesterday, just a short journey and luckily I wasn't right behind someone as I sneezed and it caused me to take my feet of the pedals and a hand from the steering wheel.

Went for a walk up the Wrekin Hill in Shropshire. A gentle walk that I can normally do up and down in 45 mins. This took 2 hours and as I didn't push it it didn't seem to be a big work out. However when home I was shattered and then today 24hours later I was aching, obviously walking up hill had put a strain that I hadn't felt.  The walking is strengthening my pelvic floor muscles and helping with continence.

Don't think I am the yet for a full day working or longer driving or working away from home. Though I feel better as each day progresses.

Need to resolve the arm issue this week.
Also BUPA support nurse is phoning Monday or Tuesday as I want some advice from them re post op side effect treatment . Its confusing going private as people on NHS seem to have a different support process. Need to clarify a few things. You do get that feeling that you are all alone.. especially when you live in the countryside . Must not get depressed. Things are on the up.

Oh... put my path results into the nanogram for probability of cure and reoccurrence ... should be all clear for 10 years , 98% certainty, however that puts me at 62 years. If I get a reoccurrence in my 60's well salvage radiotherapy is the route.

May be getting paranoid , but with first degree , mother having breast cancer, sister dying at 49 of breast cancer , thoughts have strayed to the brca genes and thoughts of was this the reason I got prostate cancer and am I also at risk of breast cancer. A worry for another day.  Need gp to give me piece of mind about the lumps she said were benign cysts beginning of this year, just to confirm that's what they really are.

Side Effects from Surgery - Stress Incontinence, Cialis, ED & Climacturia

Well bit of a surprise this week. As last weeks entry said i started on the 5mg Cialis each day. In all the white papers and the discussions with medical people I have had it explained to me the impotence side of things and also the fact that any orgasm would be dry - with or without an erection. Bit of a shock therefore this week when during 'penile rehabilitation'  ( see article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1751036/ ) a copious amount of fluid was expelled.

Have done some research it seems that during the process the pelvic floor relaxes and this results in fluid release from the bladder into the urethra and that's what is expelled. No one had warned me of this. Apparently its called Climacturia and its quite common after the surgery I have had and also more common when suffering from Stress Incontinence - again something I am coming to terms with - a reason why I am wearing a pad to combat the occasional leakage.  See short article http://www.ncbi.nlm.nih.gov/pubmed/17509325

So it looks like I have something else to think about. Big learning curve . It does make you think is ED actually worth the bother and stress of it all. At least the cancer has gone. Gets you down thinking through it all. Do wish I could wind the clock back but it wouldn't have made any difference I suppose, I would still have been hit with this disease.

Some of the main points from the US paper on penile rehabilitation that are applicable to myself - especially as I have been put on a PD-5 inhibitor, the main article linked above goes into more detail and something that's quite frightening is the inference of cellular degeneration and the fact that the cells do not repair or re-grow. Its a male thing I think, especially when you are still young - people keep telling me I am still young in terms of this disease I contracted - blokes just have a fascination with the size of their manhood and the threat that it will waste away and get even smaller post operation is something to worry about:

Extract ...

The practice of “penile rehabilitation” to improve sexual function after radical prostatectomy continues to generate increasing interest among clinicians. Although the reported incidence of erectile dysfunction after nerve-sparing radical prostatectomy varies in the literature from 30% to 80%, most will agree that post-surgical quality of life is becoming a greater concern for patients seeking treatment for prostate cancer in the era of early detection.

• Patients are typically counseled that it may take up to 2 years for return of maximum sexual funtion after radical prostatectomy.
• Although the relative hypoxia thought to be associated with penile flaccidity may contribute to erectile dysfunction after radical prostatectomy, the etiology of post-prostatectomy erectile dysfunction appears to be multifactorial and is incompletely understood.
• Several studies have been performed to evaluate the effect of artificially induced erection after surgery to prevent permanent damage, with modalities including prostaglandin E1 injection, vacuum constriction devices (VCD), and phosphodiesterase type 5 (PDE-5) inhibitors.
• The limited data regarding intracavernosal injections suggest that an increased percentage of treated patients experience a return of natural erections compared with patients who receive no treatment.
• Although it is not certain that the early use of VCD will improve overall return of erectile function, data suggest that fibrotic changes leading to penile shortening and possible venous leakage might be minimized.
• The global improvement in endothelial cell function observed with chronic sildenafil treatment suggests a possible role for PDE-5 inhibition even during the period of neuropraxia after nerve-sparing radical prostatectomy.

A new week - still having pain in left arm - Erectile Dysfunction worries starting

Monday has arrived, a week since I developed pain in my left arm. Been taking the Naproxen 500 mg twice a day that the GP prescribed on friday. It has lessened the pain slightly - I think, but it has not gone away , still there.

This is so annoying as this is the arm I need to drive. As I type this blog my left hand fingers feel slightly funny as well. Maybe the nsaid is working and things will get better.

Phone the GP in the morning and left a message as she had asked on friday to say the drugs dont seem to be working . You have to leave messages at my GP practise, you never get straight through to a doctor. They get the duty doctor or your own, if free, to phone back later in the day. It a really busy practise so i have to live with this - one of the reasons for over 9 years I hardly ever bothered getting in touch with my doctor and relied on not being ill or periodic Bupa health checks. ( Note to myself .. lump in breast and a new one developing ... may need to get this checked .. private not NHS )

Just after 4pm I got the phone call back from my GP. Told her that the pain was still there. Said I would persevere for the week and see how things get on. Again I re-iterated to her that this was the arm that I use for changing gear in the car - may impact my recovery , especially for work as I do thousands of business miles and often drive 1 to 2000 business miles in a week, on top of meetings and presentations to clients. She was ok with this. She didnt even mention the referral that she had mentioned on friday.

I had asked her last week about a referral to the local Erectile Dysfunction service - havent a clue whether we have one in this area of Shropshire.

Her view at the moment was that we would leave things as they are as she had prescribed the 5mg daily Cialis as Mr Doherty had advised. I was ok with that for the moment. Yes there are stirrings but normal or even near normal facilities are not restored in that area.

To be honest, I want my arm sorted. Though last night I was reading a white paper on penile recovery and this does concern me that there doesnt seem to be a specialst service here where I live.  Makes me wonder does my female GP really understand how a man of 52 feels about this side of his health - after all , am not an 80 year old! Most people on the Prostate Cancer UK forum as well as drug rehab are also using vaccum devices prescribed on the NHS arranged through specialist nurses who deal with ED or through a dedicated ED service. Does my GP practise have experience in this area? I dont know. I did mention that the prescription for the 5mg wasnt a repeat one. GP said lets wait and see how it goes. So in a couple of weeks i will have to phone again for more!

There is a fabulous website with real patient exeperiences that goes into frank detail on erectile dysfunction,  Lots of people on Prostate Cancer UK and MacMillan Cancer Care follow this site. It doesnt mince its words, but no one should as this is a serious, life impacting side efect of prostate cancer treatment. I would advise anyone to read the detail here. Also, a wife has done an article that really hits home, its puts sex into perspective against survival and love and two people being able to share their life togther  - worth a read http://www.yananow.org/WhatSex.htm

My next visit with BPC and Mr Doherty isnt until 21st January - 3 months seems such an eternity with arm problems and erectile problems. At least the continence is ok apart from a bit of stress leakage. Might make a phone call to the oncology support service at Bupa and get a bit of advice from them.

Update ... Tuesday 6th Nov .. Alan Doherty phoned me at home and went through the problems I have been having. If the arm problem doesnt clear by friday he will schedule an MRI to see whats happened and how it can be sorted out.

Not a very good week recovery wise - mysterious arm pain

Well this week should have been so good after the report last week on histology.

However, having sat and watched too much TV on sunday and monday maybe I was being paid back for my laziness.

Monday evening I got an excrutiating pain in my left arm. It was so bad I couldnt sleep at night. Started to panic during the evening thinking a clot had moved into my arm - the dangers of Dr Google  - or not maybe?

Anyway, having suffered all night I managed to get an appointment at my GP surgery. I know the hospital discharge notes said I should phone the hospital or A&E, but I dont like doding this as its as if you are moaning at the slightest thing.

OH ( wife ) gave me a lift to the doctors and I saw my GP. We tried everything , extending arm, lifting bending, moving neck etc In the end she thought it a  bit of a mystery and told me to take ibuprofen. We didnt have a conversation about the fact that this was the same arm that they used during the operation to put the IV's into me.

Back home and taking 400mg ibuprofen 3 times a day - did nothing. By thursday it was really bad again, this time the pain not just in the top but also the forearm. I also took my watch from my wrist as I thought this might be constricting it but it wasnt. Phoned GP thursday morning and they said at the practise she would phone me back. Must have been busy as I got no phone call. Decided to send an email to the consultants practise - maybe they could advise.

Thursday evening, to bed by midnight, but couldnt sleep. All night I couldnt get in any position where the arm wasnt hurting me.

Friday day time rang the GP's practise and the doctor phoned me back. We went through all the symptoms but still couldnt fathom the problem. She said she could prescribe stronger nsaid's - but what would the point be if we didnt know what the problem was. As I am typing this I am still getting the pain and also getting some kind of sensation in my hand and fingers. Doctor asked me to take BP in both arms and she would phone me back later.

Will have to see what happens. Might end up going back onto my pain relief meds over the weekend to give some kind of releif from all of this.

There was an interesting comment on the ProstateCancerUk forum from an ex theatre nurse who said she thought it might well be down to the position I was lying in during the operation. Could be that it has caused a strain. A guy on there had similar problems with his leg and it took a couple of years to iron itself out. Hope to god that aint gonna be me. At the moment if this doesnt clear up, I wont be able to drive as this is the arm I use for changing gear.

GP phoned back in the afternoon. BP in both arms was roughly the same. Interesting aspect of the pain, when the BP squeezes my upper arm taking the reading the pain in my arm is awful. GP said she would prescribe me Naproxen 500 mg to take twice daily. I was to phone her back on monday and let her know how it went over the weekend. Her view being if this doesnt do the trick then it might be vascular rather than muscular and then she would have to refer me. Refer me to who? She didnt say. Something isnt right here. Hopefully my body will fix itself over the weekend. Its rather annoying as everything else seems to be recovering well .
Ah ... almost forgot .. the Cialis 5mg a day arrived for the erectile dysfunction. This least of my current problems at the moment !

Histology (Pathology) Results in Great Result 98% Certain its all gone

After 6 anxious months, sleepless nights, tests, biopsies , major abdominal surgery for prostate removal the news we have been waiting for arrived.

Went and saw Alan Doherty at the Birmingham Prostate Clinic, The Priory. He described the grading of the surgery he does as 1 - 5 with 5 being the best. He put my operation in the context of A Levels - basically the A*. If he could have a * grading , my operation would have been graded 5*. Everything went perfect apart from the blood loss - he has advised me to take iron tablets as I am still anemic . ( Anemia is a condition in which the body does not have enough healthy red blood cells. ). He would also still like me to take some rest in the afternoon - recovery wise I am well ahead of the curve.

The big results though is the histology that has come back from the labs. It totally justifies having had the operation. The cancer was not just on the right side of the prostate but also on the left and it was concentrated also at the Apex. Margins are all clear so he gives this a 98% Cureative factor.

ADENOCARCINOMA, GLEASON 3

+ 3 = 6 PRESENT BILATERALLY;

THE BULK OF THE TUMOUR BEING IN THE RIGHT APEX.

Tumour volume: Approximately 0.7 eu em (about

1.4%).

Apical margin: Negative.

Bladder margin: Negative.

Circumferential margin: Negative.

Perineural invasion: Present.

Vascular/lymphatic invasion: Negative.

Extraprostatic extension: Negative.

Involvement of seminal vesicle(s): Negative.

Premalignant change: Multifocal high-grade prostatic intraepithelial neoplasia.

Other pathology: Nodular hyperplasia, chronic active inflammation.

Pathologic stage (TNM 2010): pT2cNx

Tumour map attached.

Radical Prostatoseminovesiculectomy:

Specimen and organ confined ADENOCARCINOMA,

GLEASON 3 + 3 = 6, pT2cNx. Local excision appears complete.IsabeIle

The above tumour map was given to me by Mr Doherty, it was done by the labs. Basically they carved up the prostate into six slices including the seminal vesicles. The cancer is shown in red. Nice record to have.

PROSTATE:

Radical Prostatectomy specimen weighing 50.9 gms and measuring 37 (Length) x 42 (Width) x 40 (Height) mm, with seminal vesicles up to 21 mm in length. The specimen was cut into six parallel slices and all embedded into seven large blocks.

Mr Doherty wants me to go back in January when I will have a high sensitivity PSA blood test - this is not the same test that is done at the doctors or under the NHS hospitals. The BPC do this test and I will then see him a few days later to go through the results.  I will be tested like this in the future, but its all looking really good.

The only slight concern that I have re this histology report is " Perineural invasion: Present." - looking on the net and on the prostate cancer forums this indicates that the cancer got into the nerve system in the prostate and there may be a chance in the future of a re-occurance of cancer elsewhere in my body as a result. This is a slim chance that would be picked up by regular PSA screening. Its something called PNI. Apparently most doctors ignore it. I dont have to worry about it for now.

Another interesting aspect of this pathology report - I had BPH and had ignored it. All that going to the loo quite often and stinging ... yep I had ignored it - problem with always workign and no time to go to doctors as I was always working away from home ( Other pathology: Nodular hyperplasia, chronic active inflammation. )

One thing this cancer has taught me - I am now going to take a closer look at my health and looking after it.

Now the cancer is  sorted out, the side effects of the oepration have to be sorted. My incontince is being brought under control and he is happy with what I am doing. Things can only get better and the exercise I am doing will help.  My fitness has counted a lot for this, especially the fact that I was doing pelvic exercises before the operation.

The bladder diary that I have kept for the past 5 days shows the improvement.

From an erectile dysfunction point of view he wants me to go on 5mg Cialis per day. This will get the blood flowing and will aid penile recovery. My GP will prescribe these and he will drop him a note.

So, am really chuffed as punch today  - can now see many years ahead.

Told him that I will be climbing Snowdon in December. Must get the fitness going.

Am now signed off from work until near the end of November to recouperate. Will see how I get on by then to judge my return to the hectic work life I had before ther cancer.

So lucky as there are so many who are not as fortunate

The day started as normal, bit boring, emails, radio, TV - but this afternoon I took a walk around the field and was looking back at the house, land and the trees.

Made me think how lucky i have been to have caught this cancer early. Also made me reflect on my life and where it is now. There are so many people in this world who have not been as fortunate, I should be thankful that I am where I am today.

Was lovely looking at the countryside and the leaves falling from the trees and settling on the ground. Walking around and seeing the tracks made by the badgers. The horses came up to say hello and have some bread I had with me.

I would so miss all of this if I wasnt here.

Bladder Diary

Trying Google docs to see if its any good as an electonic record of the bladder diary. Its interesting as you can now sync your laptop, pc and smartphone using Google Drive so i can access the documents no matter where i am.  Therefore I can update the spreadsheet if i am out ... question now is if it will work or do I stay with paper. Below is a snapshot from the diary.

The biggest problem I think I have is remembering that before I stand up or sit down I must do a strong pelvic contraction. This closes the bladder and ensures no fluid escapes as its only gonna go one way and thats out!  Its early days so this is somethign I must drum into myself.

I suspect coughing and sneezing - as well as the painful effect on the internal surgery - which now seems to be not as bad, will result in accidents. One of the guys on my US support forum reported only this week, a year after his Open RP, that he still wets himself if he laughs too hard, has a head cold or coughs and sneezes - so its something I am gonna have to get used to.  They call this 'Stress Incontinence' so I think I am doing quite well.

What I now need to do is to start to increase my bladder intake and also increase the length of time between toilet visits. The Physio discussed this with me in hospital and the District nurse has given me a leaflet about it. Essentially he described it as going to see a good film at the cinema - say the Godfather. As he said, i dont want to be getting up every hour to use the loo, I need to be able to last the whole length of the movie. So I need to start pushing loo visits to 2 hour, then 2 and half then three hour intervals. This will also help with the evening as I need to be able to reduce the times I get up during the night so I can get a longer time sleeping.

All of this will also help with work, as I drive a lot - 4 to 5 hours somedays travelling south and the same back. Stuck in major traffic jams is a fact of life for me so I need to be able to hold it.  The pelvic exercises are helping with this - so I do them all the time.

Example of bladder sheet:

Sunday - a week since i left hospital - good day

Feeling really up beat today. kept a bladder log for the district nurse saturday and overnightand hardly any problems at all. Managed to wake up during the night twice so there were no accidents.

Also was up early did my exercises and felt good. Exercises to Madonna  on YouTube.
Still lots of internal soreness and a burning underneath berween legs, district nurse said thats where the surgery took place internally , where the prostate was removed. Most men report a burnong sensation there.

Dan said he would drive me to the shops so we went to Sainsburys so I could buy some boxes of Tena for Men pads. They are on special offer 2.49 per box. bargain if they give me confidence to leave the safety of the house.

Went to shops and walked across car park. really slow. chap from work stopped his car to let me cross. didnt see him a i was walking at snails pace.

glad to get back home.

excitement over for the day.

ED and Bilateral Nerve Sparing

Well , one of the side efects of prostate cancer and surgery is erectile dysfunction. Lots have been written about this subject and its one of the prime reasons for getting one of the best surgeons you can who understands and specializes in the techniques to save the nerves.

There is a good article at http://urology.jhu.edu/prostate/erectyle_dyssfunction.php which explains the ins a out and also gives a good picture from the Amercian Medical Association that shows where the nerves are that control erections and you can see these in relation to the prostate that is to be removed. I have included this picture below:

A. Lateral view of the male pelvis illustrating the course and distribution of the left cavernous nerve fiber, as part of the left neurovascular bundle within intrapelvic fascia coverings. The cavernous nerve travels from the pelvicplexus proximally to the penis distally, in close anatomical relationship to the seminal vesicle, prostate, striated urethral sphincter, bladder, and rectum.

B. Anterosuperior oblique view of the same anatomical structures.

C. Anterosuperior oblique view illustrating preservation of the cavernous nervesafter bilateral nerve-sparing prostatectomy and bladder neck anastomosis to theurethral stump. The cavernous nerve fibers are preserved by division and clip-ping of small prostatic nerves alongside the prostate. When non-nerve-sparingsurgery is required for cancer eradication either unilaterally or bilaterally, wide excision of periprostatic soft tissue includes the cavernous nerves en block withthe removed surgical specimen.

Today was a massive day for me as during showering there was definate movement down under - so much so that I encouraged it ( on the basis of research that has said you need to exercise it so that you dont suffer from cell death - cells in the penis do not regenerate as cells in the rest of the body do ).  The result of this encouragement was definate growth - showing that blood was circulating again and also those nerves are starting to work. Often the bruising and battering the nerves take during surgery mean a long recouperation time. You do hear of no life , even after nerve sparing, for up to two years. This exercise resulted in my first ever 'dry orgasm' weird sensation for a bloke - but things are looking up! 

Will be reporting in these results as well as the continence progress to Mr Donerty and his team when I see them next week.

Getting to grips with Incontinence - day 3 since catheter removal

It has been three days since I had my catheter removed. Its been a learning curve. When you have the catheter in you drink loads and dont worry about urinating, in fact , you consciously relax all your muscles because you want to expel the fluid to help with the healing process. Also you dont want to squeeze as you feel it may damage the internal stitches that the surgeon has done reconnecting your bladder to your uretha.

Tuesday evening when I got back from the hospital I wet myself getting out of the car. I had forgotten something the physio in the hospital had told me that will become so important in my life. When getting up or down out of seats, bending or stretching, I must remember to do a big pelvic muscle contraction to prevent leakage. This may well have stopped the leakage I had coming home from hospital.

Thursday 18th was the day I started my physio exercises and I did them well. However, I did hurt. I stopped taking any pain relief when I got up in the morning as I wanted to be able to feel any tweek or twinge so that I didnt push myself to hard. I didnt want drugs masking any pain as this might cause more damage.

After the exercises in the morning I went for a walk from my house to the road , about 1/4 a mile - this was hard as the ground was potholed and bumpy. I could feel lots of soreness inside me, also the bumpyness of walking made me stop a few times and it also gave me a urinary urge.

Am suffering from annoying dribbles. Its ok being at home and also if I wear a pad, but need to combat this.

Tried to drink more Thursday  but my mind is consciously telling me not to in-case I wet myself. Must stop this and get back to a fluid regime.

A lady from the Office of National Statistics called in the afternoon on thursday and interviewed me for nearly 2 hours. This length of time talking got me really tired and I was glad for her to go. 

The internal soreness got worse into the evening and also I developed a headache. i never get headaches. Decided I needed some paracetamol. Took some at dinner time and then at bedtime ( midnight ). Bit of an accident before bedtime, snoozed on the settee .. major error .. woke up wetting myself !! Dam ! 

Time for bed.

Restless nights sleep - up three times to go to the toilet - in the end I was up early again. Did pelvic exercises in bed to kill some time. Must keep doing them to cure this wetting problem.

Big day in Birmingham TWOC - Do not Fart in Public !!

TWOC - Trial Without Catheter.

When I went into theatre for the Open Radical Prostatectomy the operation didnt just involve removing a prostate, but also involved the removal of a section of the uretha. The uretha has to be re-attached to the bladder so to help with the healing and to ensure you can pass water they put a catheter into your bladder through your penis.  This has to be removed at some point so you can urinate again and learn to do it under control. The start of potty training for adult men -:) . Today was the big day.

Went to the Priory and checked into the ward - this time Bournville room 3 . Was looked after during the day by some great staff nurses.

Stage 1 - anti-biotics so I dont get any infection when the catheter is removed. An hour later , lie down on the bed and the removal takes place. Trick they dont tell you that I found out on the internet, take a deep breath and when she starts pulling it out , breath out - it relaxes you and you dont feel a thing.

The next three to four hours involved me drinking fluid, weeing  and after each wee pushing a buzzer, nurse would come in , take the bottle away for measuring and they would then scan my bladder to see what was left in. After three scans they were totally happy that I was voiding my bladder. In fact they would have been happy with less than 200ml left in, but I was managing to expel urine and only leave 21 ml in there.

Brilliant - everyone happy  so I could go home.
They redressed my surgery wound for me. Also I was given a bag of bottles, some incontinence pads and some aweful paper panties !! Plus a seat pad that I could use at home. Time to leave - got my discharge papers .. then a quick trip to the loo ... and into the car for trip home.

Got back to Telford and I had no accidents. Trip into Tesco to buy some more Mens Tens Pads, a waterproof sheet for my side of the bed .. incase of evening accidents .. then to the KFC for a celebration take home meal.

Still everything ok .. drive home.

We pulled into the driveway, now our drive is down a long bumpy private lane .. obviously this must have caught me by suprise. We pulled in to the drive and it happened ... car stopped , I swung out of the car and straightened up ( a Golf TDI GT is low to the ground ), when I straightened up I couldnt stop it -- I farted !!!! Woops - never fart without control or never fart unless you are in the loo ... I pissed my self !!!!!

It wouldnt stop, I couldnt stop it.  I was out of control !! The pad I had put on to leave hospital wasnt in the right position - pants wet . OMG!! 

Thank god this did not happen in Tesco - I would have been mortified.

I suppose this is going to happen again until I am potty trained -:)

Sunday 14thOct - Longest drive home in my life

Sunday afternoon, 14th Oct 2012 was when I was discharged from The Priory with instructions to come back on tuesday 16th at 10am for TWOC where they will trial me without the catheter , measuring bladder, slow rates etc .

Walking around the hospital and eveen lifting my laptop had not prepared me for a drive from Birmingham to North Shropshire. Even though Helen drove well, every touch of the brakes and sudden movement I felt inside me. Not on the outside scar, but inside. I spent most of the time, pressing my insides trying to ensure they didnt 'wobble'.

By the time we had gotton from one motorway to another (M54) I was so tired.
We then realised that I needed a shower seat for home and pain killers!! Decided we would stop at Tesco on the way home. This was a mistake but also a bonus - my catheter seemed to block in the car, so I didnt just have the pain of the journey, I now had urine backing up the catheter into my bladder - and this hurt.

So into Tesco we went - Helen to pharmacy, me to the loos - thankgoodness for clean disabled toilets - which i availed myself of. Sorted myself out.

Then I spent 30 mins leaning against a trolley - not pushing it - while we picked up goodies for me to eat at home.

Home time!  ( Really not looking forward to Tuesdays TWOC )

Constipation takes time - dont force it!!

Friday12th Oct 2012 -  afternoon in hospital I was gearing myself up for discharge on saturday. 

Physio - Kizzie was really happy with everything and he had briefed me on what I should and shouldnt be doing. My biggest problem was trying to get what had gone into my body from the top out from the bottom without straining as this could damage the fantastic work done inside by the surgeons.

My method to help this - and because I was a lot fitter being a hillwalker, was to take a walk outside. I devised my route , circular around the hospital with an uphill and downhill section by the Consulting block.

Two laps of this friday had me shattered.
Didnt seem to work.
Back in the ward I was given double Laxido's - its like drinking wallpaper paste. Also given double glycerin suppositories still didnt work. However I assumed all would happen - it didnt. I had to eat, so had my evening meal - when was all this gonna come out!!

Saturday 13th October ... its been 5 days since the operation - wind - no problem now, but nothing being discharged below - this is all getting too stressful.

Helen arrived and spent most of the day with me. We went for a walk together outside, but still nothing.

Andrea and her Assistant from the Colmore Ward, where Mr Doherty's patients are normally housed was on. First thiing she did was to correct how I had my catheter strapped to my leg - that made things more comfortable - typical techie in my  - I dont read the manual. Also they got me to read the health and instruction booklet with the catheter - stressing the importance of cleanliness and maintenance  - to ensure I dont given myself infection.

Andrea said she would sort out the bowels:

Jug of hot orange juice ordered
Large glass of pure prune juice ordered
Two Laxido's taken

Andrea told Helen that I could not be discharged as I had not emptied my bowels, but it would happen and i would be home sunday.

17:00 hrs I drank the hot orange juice.
at 17:30 hrs Andrea inserted both glycerin suppositories into my rectum and got me to sqeeze my buttocks and lie on my left side. At 17:45 hours I could sense something was happening .. as I was getting up catering came in with my meal - I sent them away to put it on the hot plate ... I just managed to get into the bathroom and sit down when it happened - WOW what a relief !!!!!!!!!!!!!!

15 mins later I was showered and telling the nursing staff what had happened - then meal time and visitors .. dam I felt good. Home time sunday.

Jonathan, Emma and Chris

Visitors left just before 9pm and I had some more Laxido and drank the pure prune juice  - ewwww - but it had to be done. 22:00 and hour later I was sat again on the loo and filling the bowl.  So sad this to think that having a crap could excite you so much.

Went to bed and was up again at 02:21 hrs sunday morning - again on the loo. Night staff were really pleased. Went back to bed and was up at 6am , packed my bag and laptop and tidied up and was ready to go!!

Helen arrived later in morning and after I was shown how to dress my wound, given diet instructions, given a bag full of medication to take home - again to help keep my insides clear ..  I was on my way out of this fabulous hospital .. for a few days. ( Got to go back tuesday for TWOC ... trial without Catheter ).

Wind - unbelievable pain and nausia

It was thursday late afternoon and Natalie ( Daughter ) and her friend Lorna were due in later. The big thing that needed sorting out was bowel movements. Aparently I wont get to go home unless this is cracked. Decided with the staff nurse that we would try and start it all - or at least get the stool softeners in early so I would be ok for my visitors.

Brilliant Staff Nurse - Elisa was looking after me. She has suffered herself from the type of pain I was going through and about to go through. Without her help I wouldnt have got through the next few hours.

Really didnt quite work out. I had a couple if glycerin suppositories that were meant to iritate the bowel and might help movement. That didnt work. Held them in for an hour and then sat for ages on loo - no result. Also I took and oral Laxido to help soften the stool. The active ingredient, Macrogol 3350, is a laxative that makes stools softer and easier to pass .  This didnt work. The nurse then contacted Mr D. to see if I could have a stronger enema - injected up the rectum to kick start things. This was done, but still no joy. Wow - seems the use of the pain drugs like codeine etc had really buggered me up. At this time I also received another injection of an anti clotting agent.

A concern here is that I havent voided since a small one on tuesday morning and now it was thursday - day three post op. Mr D doesnt like his patients straining to void as it can impact the internals he has done. Big point this as during my research online and talking with other people who have been through the procedure this was a big bug bear.

Whilst all this happened the wonderful dinner I had ordered arrived. Managed half a cup of coffee and some soup, but the fish and veg went back to the hotplate to be saved and the jelly and double cream would have to wait on the tray.

I was still sat on the loo praying to the toilet gods when my daughter arrived. Lorna and Natalie stopped for about an hour but the longer they were there and I was talking the more sick I was  feeling. Maybe it was all the talking, maybe it was the drugs - I dont know , but what I did know was i needed space and to be on my own with the nursing staff to sort me. Felt so guilty asking the girls to leave after  they had journeyed here. They understood though.

After they went, Nursing team came back in. They got authority for some anti nausea medication, wind medication and my normal paracetamol.  I asked them to take the food try away  - which they did. Even looking at a glass of water was making me feel ill. It wasnt even 9pm and I turned all the lights out.

I was about to go to sleep and noticed a message to me on ProstateCancerUK Forums from Tony. He had an RP under Mr D at the Priory. He stressed to me to lie on my left side and this would help clear the wind. I tell you honestly, I had never felt pain like this before. All lights out and I got myself as comfortable on the bed and started to try and sleep. Around 10 pm the over night nurse came in and gave me pain killers and a wind tablet. If you can imagine your body full of gassy water gurling away and nowhere for that gas to go - thats the feeling and thats the noise you hear. Even Lorna had heard it before she left. I must have nodded of but about 11 pm I started to actually pass wind - big style. It obviously had found its way through to the exit -:) This went on for sometime , probably a couple of hours off and on and then I slept.

5am I woke up and felt quite good so got up for a walk around the room. Had a wash, did teeth and had a shave.. what else to do .. nothing. Started to feel pain from the abdomin , not wind pain this time.Nurse came in and gave me paracetamol x 2 and a Tramadol - I wasnt aware at the time that Mr D doesnt like his patients to have this really as its like codeine - not to worry - the combination helped me sleep and I woke at 7.30am to the gentle knock of Mr D on his morning round to say hello.

Again he was quite pleased with my progress and he gave me the good news that I should be able to go home saturday. I would however have to come back on tuesday to have the catheter out. To be honest, if I could be at home it would be great.

After Mr D left I saw the nurses, Staff Nurse Nicky - brilliant, talked me through the drugs - we have everything at home that I need to get me through the weekend. I only need Paracetamol and Ibuprofen. If I dont take my Amlodipine then I should be ok. I havent had any Amlodipine all week and the hospital have been fine monitoring my heart. I also have my own heart monitor at home so can check this.

Only problem might be saturday's drive home if we get stuck in traffic for a few hours. Nicky said she could give me a suppository pain killer - one Mr D recommends - Voltarol - as it doesnt cause constipation. Via suppository it will be quick acting. They might also be able to give me an oramorph dose before I leave.

Had my breakfast and then decided to get really mobile. Tidied my ward room. Picked clothes for the day - socks, shorts and pink i-scout tee shirt. Bathroom and then had a shower - well, the nurses showered me yesterday, this was interesting doing it on my own. Now I have a problem at home. I need a shower stool to sit on, also I will need a handle to pull up on. Havent got any. Dam. Gonna have to see if son of mine can fit them when I get home.

Below ... fridays breakfast ... prunes .. my god ... never thought I would welcome these .. but needs must!