PHARKOUGH!

Well…today marks an anniversary of sorts.  One year since confirmation of cancer in my prostate.  Easy date to remember…shared with Remembrance Day.

Can’t believe it has gone so quick!  You have cancer, get some scans, schedule surgery, recover from surgery, sweat on the first post surgery PSA test, look forward to the next one and suddenly here I am a year on from urologist Darren Foreman giving me my Gleason score of 7.

I had a good run with this.  However I’m sure it has messed with my head.  Nothing obvious..I didn’t suffer panic or anxiety attacks (fully expected to though!)  but when I look back…I can see evidence of whole periods of low performance at home and at work.

So how did I get through all this?

I suspect people around me reflected how I was reacting.  As I didn’t go off the deep end…neither did they…thank Christ!  For me I think this was the crutch.  People around me…family, friends and work colleagues kept their cool.  They were always there…supportive and cool.  I can’t imagine how someone alone battles these sorts of challenges…there must be many long and lonely nights with no-one to lean on.

Previously I have thanked the experts who took charge of my care.  It’s time to thank my personal support network.

It’s easy to forget those closer to you because they are there all the time.  And I am guilty…taking the love without acknowledging it.

Lyn…pillar of strength…I am very fortunate to have you near.

My kids…supportive and concerned without freaking out…well done!

My mother and brother and cousin…again calm while near me.

Work colleagues…giving me all the time I wanted to recover and get it together with no pressure.

My friends…never bored with my story and very supportive.

When you go through shit like this and come out the other end in pretty well one piece…like it or not you get a different perspective about what really matters…supportive people around you are very important.  I need to work harder on  acknowledging this…to myself and to them.

Next milestone will be a PSA test in February.  Following that the 12 month anniversary of excision of the cancer…I think that will be the more meaningful anniversary…collecting years of staying free of the cancer after it’s removal.

March 11 will be here real soon!

My second PSA test at 5 months post op was identical to the 6 week one at <0.04…doesn’t get any better than that.  YAHOO!!!  Next test in six months (February 2011).

Continence…

I stopped using the “just in case” pads at about 4 months with only a couple of very minor incidents since then.  Physio Di Semmler has seen me for the last time and given me some exercises for life.  Practice coughing at the urinal with various levels of bladder fullness and pelvic floor exercises 3 times a week that take about 5 minutes.  Remembering to do them is the challenge!

Erectile function…

Well this has changed!  Things are supposed to improve with time…for me it’s downhill at the moment.  Sensation is good but hardness isn’t.  Even the on demand drugs aren’t coming to the party…the side effects are…but not the anticipated result.  Surgeon Peter Sutherland was surprised as I was doing very well in this department earlier on…however apparently it isn’t unusual for dips in performance.  He prescribed Levitra…the most successful drug for me but with the worst side effects…”try half a tablet”…he suggested…”plenty of practice is the key”.  So my take home message is use it or lose it.  The Cialis 20mg & Viagra 100mg were less effective with the Viagra being the least effective.  All three drugs blocked my nose & left me with a headache for hours.

In summary then…

I continue to be in as good a place as I can be tested for…remember I arrived here with NO SYMPTOMS…the issues above are minor compared with the alternative of discovering metastasised cancer months or years down the track.

So guys over 40…

GET CHECKED EVERY YEAR…REGARDLESS OF HOW YOU FEEL!

At last…back to normal activities.  My physio said that by 12 weeks all my wounds should be well healed and scar tissue will have started to soften.  So there is now little risk of injury from physical activities.

This of course had to be celebrated.  I took an annual leave day & dragged the motorbike out of the shed.  A beautiful day for a ride.  With a few mates from the motorcycle club I went to Greenock in the Barossa Valley | SA | AU to pre-run an upcoming ride.

My ride was very apprehensive…especially cornering and over blind crests.  Still it was wonderful to be riding again.  Use it or lose it!  Lunch at the Greenock Creek Tavern…all good.

The following Saturday was an official SABERS rides day.  Lyn joined me on the back & about 20 of us made the lovely run through the Barossa to Greenock.  It rained while we had lunch and a bit more on the way home.

I was far more comfortable and confident on the second ride.  No dramas handling the bike.

Lyn of course now has major jobs for me…no more excuses about being an invalid!

Continence…

Improving slowly…still wearing a pad for the “just in case” times, but not at night.  Some sneezes & coughs catch me out…especially with a full bladder.  However I have made 3 days in a row without an “accident”.

Erectile function…

My first trial post the low dose Cialis prescription was to take nothing.  Persevered for a couple of weeks with poor erections.

Tried the Levitra…20mg.  That worked a treat but not so happy about the side effects.  Aching penis while erect and bad headache for a day after.

So for a few weeks now I have a had a workable erection without drugs.  No raging beanpole but workable nevertheless…sorry kids!

General wellbeing…

I am very tired all of the time.  Need to work on my fitness.  But other than that I’m all good!

This is the week those of us who have had our prostates removed due to cancer within hang out for…results of the first post op PSA test.

I am very pleased to report that my PSA level is now 0.04 compared to 6.9 pre op.  That’s as good a result as you can get.  My surgeon Peter Sutherland explained that 0.05 is the lowest practical result available for the test…so any reading of 0.05 or below is the best outcome that may be expected.  So…as far as the experts can tell…I am free of cancer of the prostate…YAHOO!

Peter is well pleased with my progress.  My six laparoscopic wounds are healing well, one incontinence pad a day is very good and my erectile function is excellent.

He gave me a variety of “on demand” erection enhancing drugs to experiment with over the next three months before I see him again.  These need to be taken about 2 hours before any intended “action”.

The plan is to try no drugs and then each one as required to test effectiveness & side effects for me.  Viagra 100mg…good for a few hours, Levitra 20mg…similar & Cialis 20mg…good for a couple of days.

Enough about the stuff my kids don’t want to read about!

Time for some thanks…

I don’t know the names of everyone I came into contact with in this process of discovery & excision of the cancer but without exception every single one of them was fantastic.  Everyone treated me with care & interest.  I am amazed as there are many people involved & I know I don’t expect everyone to be having a brilliant day at work just because it’s my turn to be attended to.

Let’s start with my GP.  Yes I had to twist his arm a little years back to start being tested for prostate cancer but when the PSA level was up he was quick to get me off to a urologist…and supportive when I sought guidance with assessing radiation therapy as an alternative treatment.

At the urology rooms the staff on the front desk…again fantastic.  My initial urologist Darren Foreman…straight down the line…no beating round the bush…very informative.  Subsequent testing was arranged promptly and queries I had regarding timing dealt with to my satisfaction.  Staff at Jones & Partners took me through the various scans very smoothly…queries about possible old injuries to my ribs & leg (hot spots on the bone scan) were disconcerting but had to be asked.  Darren referred me to Peter Sutherland for the surgery.  Research about Peter revealed he is the guru with respect to the da Vinci robot and my prognosis is proof of his expertise.  Again fantastic.

Di Semmler my incontinence physio…a very astute lady helping me work through the lead up to the operation & the post operative frustrations with (minor as it turns out) incontinence & taking it easy.

The Royal Adelaide Hospital.  A 3 hour session for the pre op assessment.  Desk staff very patient with a horde of us and our concerns and messed up paperwork.  Nurses, the ward doctor, anaesthetist, the ECG nurse who struggled to pronounce my name (we had fun with it)…all professional, caring and up beat.  Next up admissions…again the desk staff so patient with another horde coming in for their operations & again messing up the paperwork & forgetting things.  Nurses, theatre staff, anaesthetist & of course the surgeon…all making me feel special, at ease & comfortable.  Recovery…more of the same…well mannered, jovial nurses making me feel good.  Back in the post op ward…fantastic, caring nurses attending to my needs & dealing with any concerns I had…all with exceptional patience and caring attitudes.

Post op I had issues with bleeding into and around the catheter…again my concerns were quickly dealt with by the urology nurses & Peter.  Gordon…the urology nurse who removed my catheter…very professional…he kept me at ease through the process.  And again desk staff at the urology rooms happily dealing with queries I had about payment for the surgery with respect to Medicare & my health fund.  Plus more fabulous support from the physio.

To every single one of these people I say thanks…a huge thanks for making my experience special and comforting all the way through.

Slower improvements now.  Still minor but annoying continence issues and I would like to be emptying my bowel more often.  I lost 4kg in the first 2 weeks post op, then put 1kg back on…this week 5kg’s lost since the op.  Challenge is to keep that going for another 30kg or so…hhmmm!

Work is quite tiring…not that I do anything physical.  I suspect some of it is due to me being generally unfit.  The rest…well I keep being reminded that despite not many outwards signs of it this was still a major operation.

Great news on the erectile function front.  Gentle intercourse works just fine.  I’m about halfway through the Cialis prescription.

Had another visit with physio Di Semmler this week.  She was very impressed with my progress.  I am doing very well at only 5 weeks post op.  She reinforced that I must rest when feeling tired so I took today off work…slept in till midday!  Also she told me to stop hanging on too long before urinating…seems I’m trying too hard!  And…walk more!

PSA blood test next week…the first since the operation and I will have my first post op appointment with my surgeon Peter Sutherland at the end of that week.  Looking forward to that.

I am still meeting people who have had and are battling prostate cancer…it’s great to swap stories about different treatments and the subsequent recoveries…we are all different.

This week I went back to shooting expecting my score to be down.  Before my operation I imagined the centre of the bullseye to be my prostate…it seriously improved my scores.  Well losing the prostate hasn’t diminished my focus…I was well pleased with a 491/500 after not shooting for over 3 months.

So…7 weeks to go before I can get back on the motorbike and/or go 4WDing again.

Back to work after Easter.  I felt ok on the first day until I went home…then I was stuffed.  We had an appointment that night that I had convinced myself I should attend.  By the time we returned home I was well and truly knackered.

Woke up briefly the next morning & rang work to advise that I would not be in…then slept nearly to midday!  Didn’t expect to get so knocked about.

It was only a short week due to the Easter Monday holiday.  I managed the last two days ok…tired but ok.  Message there…listen to the professionals & take it easy.  However being back at work is good.  Being at home with restrictions on what I can do was wearing thin for me.

Driving has been ok…no dramas.

Minor incontinence still…appears to be random although when my bladder is full, sneezing & coughing will leak a little.  Pads do their jobs though.

Managed an orgasm!  No ejaculate of course…so no wet spot…hehe!  Erectile function is coming along.  Had an ache in the penis afterwards.  Also I am now talking the Cialis.  The surgeon has told me to stimulate…well that ached too…so he advised to let it be for a week but keep taking the drug.  I think having an erection is stretching my shortened urethra…so it hurts.

A new milestone this week…began driving…in the Delica no less!  Climb up very carefully into the driver’s seat though…no pulling on grab handles…use legs only.  Gave my brother a lift to pick up the push bike he fell off a few days ago (earned himself a hospital ride!) and took myself off to another physio appointment.  Funny thing about the pushbike incident.  He was attending a 1st Aid course for work…couldn’t have hurt himself in a more convenient place…right out front of the Ambulance Station!

Continence control has improved a little but I am still frustrated with false starts for emptying of my bowel.  It’s surprising how this stuff consumes you!  Physiotherapist Di Semmler gave me some more ideas about why I feel the urges and made me think again about just how my body works & how I may be misinterpreting some signals related to the surgery.  I am enjoying my visits with her.

Generally every day I feel better although I had one very flat day early in the week.  I think with Lyn back at work and being more or less on my own was wearing thin too.  I managed some work from home but I am still surprised how tired I get.  Got some more walking in too.

For those of you interested in erectile function I woke up once with an erection this week which made me think the earlier one I had in week one was not a dream.  That’s encouraging!  Next week I start on the Cialis.

Last bit of rest up over the Easter break (including some strategic planning for work & dreaming of getting back on the motorbike) and then I will try going back to the office.

Urology nurse…

The catheter came out on Monday.  No pain but an interesting sensation nevertheless.  New dressings for my belly punctures.  Then a flow test.  Drink a litre and wait.  I got impatient and drank 2 more cups of water,  That worked!  200ML flowing well.  So I was allowed home.

Now…no-one warned me to wait till I passed the rest of the water!  Resistance was painful and inevitably futile!  Pad worked well…twice on the way home!

Picked up a great CD at the urologists.  Peter Tilbrook (ex Masters Apprentices) now The Party Cats…Let’s Go To The Movies.  Track 2 is called The Prostate Blues Song and relates his story along the same path I have just been.  Funny as!  It’s 50’s & 60’s music…great stuff.

Also I left the urologists with a 3 week prescription for Cialis.  This drug enhances blood flow to the penis.  Apparently research has found it is better to be proactive with this.  No waiting for erectile dysfunction to become apparent…get in early with stimulating the blood flow.

Before I see the surgeon again in about 4 weeks I will have another PSA blood test.  A zero reading for that will confirm the cancer has not spread beyond my prostate.

At home and I was not enjoying this relearning flow control thing!  Last time I did this I was what…2 years old?  Anyway no more major dramas just small ones…again the pads worked well.

More walking…a bit further each day.  Also worked from home…gotta love that connectivity!  Good distraction anyway.  But I was surprised how much it took out of me.  It’s just sitting in front of a computer isn’t it?

Physio…

Friday I went back to see physio Di Semmler.  She was happy with my progress.

I was cautioned for trying a bit too hard with the flow control (pelvic floor) muscles…I was tiring them out by the end of each day.  She gave me some tips on teaching myself to condition my bladder to longer times between going to empty it…talk to it, walk half way to the toilet & wait.  After all it has just had a week and a half of not filling up while the catheter was in.

Next milestone is to try driving middle of next week.  I can drive the 4WD so long as I don’t use my arms and upper torso to pull and/or twist my way up into the seat.  Sliding out is easy enough.  No driving vehicles without power steering.

For the first few days getting in and out of bed was awkward and painful. And I was still getting the strange gut contractions…they may have been bladder spasms.

Day 2…liquid bowel movements…yay!

Day 3…no bowel movements…not happy.  Plenty of gurgling and wind and obvious bloody (very pink) urine.  I "phoned a friend"…nurse friend reassured me…thanks Joyce.

By day 4 not much pain and 1 soft bowel movement.

Day 5 I had 2 soft bowel movements.  This is what the physio and the nurses most cautioned me about…DON’T GET CONSTIPATED!  So I became obsessed by this.

Drinking 3 litres of water a day is interesting.  Getting quite used to it.  More normal for me is juice , coffee, soft drink & beer.  Water only when I am seriously thirsty!

I run out of pain killers first, then the antibiotics but still had plenty of bowel softeners left.  Panadol in soluble form helped with reducing pain.  I even had a day with no Panadol…but that was too early.

I was concerned about bleeding into and new…bleeding past the catheter so I rang the urology nurse.  No panic just delayed removing the catheter for a week…bugga!

A week to the day post op the surgeon Peter Sutherland rang me with the pathology results.  All clear!  The cancer was contained wholly within the prostate and the adjacent tissue he removed was benign.  Best news ever!

He decided then not to wait a whole extra week to remove the catheter.  Even after I emailed him photos of the colour of my urine & the leakage past the catheter.

Lyn Stevens (wife) took me in.  She will be my nursemaid for the next 2 weeks.  See if I am still alive or just divorced by the end of it!

7am start.  I was first cab off the rank.  A bit of admin stuff (forgot my dressing gown), saw an admissions nurse & the anaesthetist (he said nothing about my beard…I trimmed it last night to a #6!).  Around 8.30am I am off to lala land.

Surgeon Peter Sutherland called Lyn by 11.30am to tell her all went well.  I woke up about 1pm.  Peter came to see me at the end of the day.  All the cancer was visibly contained in the prostate but he took some adjacent tissue just in case.  My guts (6 holes) and lower back (old injury) hurt.

Fairly sleepless night.  No shoulder tip pain from the gas used to inflate the body cavity (the other 2 with me in the ward…same operation…have the pain).  No appetite for breakfast.  A bit nauseous once during the night & once before breakfast…but no vomiting.  Had strange & painful contractions during the night…like a big gut wrench after a fright.  Seriously painful!

Lyn had me home by 9.30am.