I bought a bike

of the treadally pedally kind. My argument was that as it is relatively flat down here in paradise on the coast. Oh, did I forget to say I have moved me to Broulee on the New South Wales (Oz) South Coast.

Anyway, my bike. It’s a basic mountain bikey thing. I think it has 18 gears but I’m just learning with the middle six. It also has front fork suspension which I have already discovered is eff all use to my boy fanny. My new mate, Rob the bike bloke says we can experiment with different seats to find one that the BF considers acceptable.

Rode to the coffee shop this morning and discovered I might have to take him up on that offer. I also discovered that “flat” is a relative term and that fat is not a typo of fit

We are not amused

I had intended a post today describing some of the weird things I have been experiencing.But as John Lennon said, life is what happens when you are busy making other plans.

Last Monday I went for a routine follow up with my urologist/  I had some cytology done last week (analysis of pee samples looking for suspicious cells) and the plan was that my urologist was going to confirm that the suspicious cells were no more because the tumours from which they emanated were in a jar.  But guess what.  Remember we thought I had two cancers and the one remaining doesn’t have symptoms like this?  Well it turns out that I must have had three.  The one my Willy harboured, the low grade prostate cancer that we have left alone, and the Scarlet Pimpernel that over 12 months of tests have STILL not located.

So now I have two.  But I am vertical and breathing and now I sit down to pee.  I am continuing with plans to re-locate to the coast.  There is a shiny new hospital not far away and my (now ex) urologist has referred me to a colleague that was in fact, the very fella that originally diagnosed my prostate cancer.  I like him and I like the fact that he has skinny fingers ….. the story continues

Is It Fixed

Well, in truth I wont know the answer to that question until I die of natural causes that are not cancer.

But it is actually a complex question. I find most people opt for the question “did they get it all?”. So let’s start there. To recap, the “all” people would be referring to is all the cancer. So the answer is no because there were two. One, a sneaky little low grade slow growth prostate cancer. The other, a highly agressive, too rare to be considered, primary squamous cell carcinoma (scc to its mates) in my urethra, about half way along the shaft of my penis. At the time of biopsy, six weeks prior to surgery, this scc had developed into quite a little family as the daddy had matastisised at least eight secondries which were still living close to home. If not rounded up, it is these secondaries that would charge off and find somewhere to kill me.

The good news is that the surgical team and the pathologists are as sure as they can be that this family is all now in a specimen jar in a path lab somewhere. But just in case some secondary scc’s did escape, I will forever more have regular pathological screening, keeping an eye out for malignant cells from another unknown source. The first of these is in early May.

In the same screening round, they will check my PSA levels (prostate specific antigen) to see how Mr Sneaky is getting on. Remember he is still there at this stage because he might never be removed and for now at least, not poking tjis dragon means maintenance of urinary continance and some wierd sexual function. I might write more about PSA tests at some point. But Suffice it to say, because of these tests it seems now clear that way more men die WITH prostate cancer than FROM prostate cancer. For me, we have quite a lot of baseline data against which to compare future results so for now, I am just going to surf the wave I’m on. Truss biopsies aren’t fun but I guess we might go there again one day. Then I will explain in more detail how they collect samples by sticking a sort of dildo with teeth up your bum and pull the trigger for it to nip bits off.

Did it hurt ?

What a stupid question, of course it hurt.  What would be the fun of major surgery if it didn’t hurt?

But pain is a funny thing.  I have great difficulty with the medical profession’s current approach “what is your pain out of ten”.  Ten of what? Pain is multi dimensional so what am I to measure?  And which pain ?  I can’t remember the last time I had only one.  So my response is calibrated according to the response I desire.  If I think I need pain killers, it’s a higher number than if I don’t.

But pain is also a very personal thing.  How dare I think my pain is so bad.  This isn’t a heroic thought, in fact it is anti-heroic. Being of an age where it has special significance, I am always reminded of the words of the Red Gum song “I can still hear Frankie, lying screaming in the jungle; ‘Til the morphine came and killed the bloody row”.  Sure I’ve had morphine for pain but it wasn’t as bad as Frankie’s.

Anyway, the op in question cut up a fair part of my lower abdomen.  In anticipation of the post-op “discomfort” this was going to cause, pre op the anesthesiologist (I always have trouble with that word) had planned to give me a long acting spinal injection.  But after three or four attempts to find a way for the bloody big needle between my collapsing vertebrae (now THAT hurt), that plan was abandoned.  The irony is that, because of the excellent care I received and the excellent opioids of which I was able to partake orally and intravenously, the worst pain I experienced through the whole hospital experience was the pain inflicted trying to prevent the pain.

Post hospital, I did have one glitch.  The op was performed in a public hospital and so they showed me the door as soon as they thought I was ready.  It turned out I wasn’t.  The three-hour car trip home was a misery and once home, neither I nor the Landlady were ready to cope emotionally.  Luckily I had an appointment with my GP to days later, he took one look at the Landlady and me and immediately packed me off to a local rehab hospital for another week.  The message here is, it takes time and you can’t push it.

So now as I write this, externally, healing is well advanced and the only tender spot still remaining is from some yet to dissolve stitches in my new boy fanny.  No biggie, just a bit uncomfortable.  Internally, I am still aware of the mauling I have received.  By that I mean there is some deep grinding pain but I feel it is lessening every day.

The slowest part of my recovery is proving to be stamina.  My fuel tank doesn’t seem to hold much and I run out of petrol pretty quick and I don’t have to do much to run it down.  Just a walk around the shops will do it.  Long trips in the car are draining.  But it is all improving and once you get the idea to forget any macho bullshit and not to expect too much of yourself, its manageable.  Opioids are a thing of the past as of yesterday when I took my last Oxycontin (good stuff that).  So as long as my liver doesn’t complain too much about paracetamol, my body and I reckon we can get on with it.

Time Flies

Wow, look at that. Last post with any content was the 18th March and now its April.  So How do I approach this?  This is the problem of doing a blog when one isn’t an obsessive blogger.  So, it will just have to spill out as I think of things and be as scrambled as my brain.

I guess I’ll just have to start with the now and then fill in the gaps.  It is one month today since my De Willy day. so without any further ado ladies and gentlemen, may I present you with the first official photograph of Nilwilly (autographed copies available on request for a small phenomenal fee)

n0ilwilly

For a bit of interpretation:

  • My scrotum has been hoisted up to form the flap to cover the surgical site;
  • The vertical scar at the top goes up to my belly button. Lymph modes were accessed and removed through this incision;
  • The bunched up bits you can see at the top of the scrotum are just that, bit of sloppy seamstressing.  My mum would have been horrified at the quality of this handiwork but I guess the team had a few more important things on their mind, like my life.  Anyway they are effectively fat bubbles and will go away in time;
  • Just peeping from behind my balls (yes they are still in there) you can see the site of the Perineal Urethrostomy aka my new plumbing construction.  I have learned that medicine has a name for everything but this one it missed.  It is referred to as a Perineal Urethrostomy which is like calling a reconstructed nose a rhinoplasty.  My urologist’s nurse and I discussed this earth shattering dilemma while she was plucking out stitches.  We weren’t able to come up with a beaut Latin name for it but for day to day use, it is henceforth my boy fanny.
  • Note also that my scrotum is doing what it is supposed to do.  It is keeping everything tucked close to protect it from (further) trauma.  It will relax in time when it is sure that the surgeon and his knife are not coming back

Coming soon:  Is It Fixed? and Did It Hurt ?  stay tuned

Drugs

I have never been much as a user of receational drugs other  than alcohol, nicotine  and a very occasional joint. So my knowledge of what one might do for me is mostly heresey.

This de-dicking process has led to a fairly substantial updating of my knowledge. As grandma used to say, you learn something new every day. I’m talking about the usual suspects but in a regular program, so I always have opiates on board and ready to party. Beyond the design function of these drugs, what I have been getting are audio and sensory hallucinations.

Is this a big deal?  I don’t think so and no thankyou, I dont want to skip the meds and anyway, I don’t have the resources to play hero wanker.

 

Marks Our Of Ten

I’m home but its pretty clear the rocky road has many miles in it yet. The op was a sucess. We need follow up tests to confirm, and long term monitoring, but the best guess is that all the (uthereal) cancer went into the furnace with willy.

You know that annoying practice medicos use, asking you to score your pain out of ten. Well, ff I was to apply the same scoring technique to experience of the procedure as a whole, i would rate the past week as an eight. Pain alone started up there around 8-9. I was cruising by the time I checked out but with the travel and disruption I soon had it up near the ton again

Stocktake

1. Penis: nil

2. Testicles: two, thoughtfully repositioned so the scrotum ( one, black) could be used as a skin flap over the dickectomy gal

3. Urethera: one by new extension attached to bladder end of old, one and exiting through a newly created gap in the perinieum.

4. Me, in the words if my old mate Willy Nelson

It’s been rough and rocky travelin’
But I’m finally standing upright on the ground
After takin’ several readings I’m surprised
To find my mind’s still fairly sound

Photos soon

Cheers, Nilwilly

That Done

I had the big op on the 8th. All went well. Apparently the penectomy seems to have got the whole cancer, and as the lymph they took were cancer cell free, I might have dodged the bullet. I don’t know how I feel about the new me yet. Apart from the predictable pain and discomfort, I wouldn’t know bits were missing

I have three drain lines, a morphine delivery line and a catheter. Sort of hampers movement a bit. I did get vertical yesterday and will again sometime today when I can snag a passing nurse.

“Its been rough and rocky travelling. But I find myself standing upright on the ground.

And after taking several readings I’m surprised to find my mind is still fairly sound ”

Willy Nelson