Over the past 12 months I have undergone a raft of tests and procedures intended to discover the source of malignant cells that have repeatedly shown up in urine tests. The most recent round of these procedures commenced on 9th Jan 2018 and again it revealed nothing. But i had also brought the existence of a series of small lumps in my penis to my urologists attention. Subsequent tests, including an open biopsy of my poor embattled willy (cutting the shaft to access the lumps) and truss biopsies of my prostate finally revealed the culprits. I have low grade prostate cancer, first spotted a few years ago but elusive until now. That’s no big deal, it’s very small and a slow grower at my age (68). But I also have urethral squamous cell carcinoma in the shaft of my penis. This is apparently very rare, which explains why it had not been spotted earlier. They simply didnt look for it. In fact, when the lesions were sampled during the open biopsy, all money was on them being either a benign mass or secondaries of the prostate cancer. But it is neither. It is malignant cancer and an entirely different animal to the prostate one. So lucky me, I have two separate cancers
It’s about two weeks until surgery. But here is a bit of a rundown of what I being told to expect:
There is no way of knowing at this point if the cancer has spread. So although the surgery is agressive and radical, the strategy we have agreed on is nonetheless the least option.
In this round, they will take my penis with its cancerous mass. They will also take two lymph nodes. They will leave intact and in situ, my prostate, bladder, kidneys and testicles;
If the lymph biopsies indicate the cancer has spread beyond that which is no longer there, we will develop a further plan of maybe removal of more bits, radiation and/or chemo. Of course if the cancer has not spread, the champagne corks will pop and I can get on with re-designing my life and reinventing myself.
- how do I urinate, sans penis ?
- what happens to libido? No penis but in tact and functioning testes. i.e. my brain will think its business as usual. But …
(1) is easy. Its called a perineal urethrostomy. They install some new plumbing connected to my bladder with an outlet behind my sctotum. Henceforth I sit down to piss.
Number two is something I have obviously considered (a lot) but to avoid confusion I’ll save discussion of that for another day.
Up to this point this whole experience has been somewhat surreal. I have felt disconnected from the whole thing, even while experiencing all it’s little joys and pleasures. But as 1st of the month rolled around and it became easier to count the days, it has suddenly become very real that a physical disconnection is only a week away.
So what’s bothering him, you say
Loss of the physical manifestation of male sexual identity?
Nope, I’m way past that point and it wasn’t difficult. We are what our mind says we are, not our bodily bits. It’s just a common or garden variety penis.
I havent seen it “in the flesh” for a while as I can’t see past by gut (must do something about that) so I wont be able to see it isn’t there. It’s had its days and served me fairly well. Though it has had its own share of traumas.
It was circumcised twice. The doc in the little town in which it was born botched the first attempt.
My father, being left in charge of the baby one day changed my nappy and complained when mum got home from shopping that I wouldn’t stop crying. As any mum knows, step one, check nappy. The nappy pin was through my foreskin.
But it survived those little setbacks and went on to be impaled on a knitting needle when my sister and I were using my cot as a trampoline after knitting scarves.
Now, innocent as it looks, it is harbouring the means of my untimely destruction. It is apparently extremely rare, which makes a magical mystery tour for all involved. It is a uretheral SCC. Rare in women and almost unheard of in men. But the biopsy scar down the side where they finally found the little bastard is visible in the pic. (The pic also reminds me to see about a full brazilian before I go in for surgery. I dont want some big beefy wardsman doing it in hospital.)
Penile cancer is a squamous cell carcinoma (SCC) on the outside and clearly visible. In both cases though, a penectomy is the order of the day when the end can’t be nipped off to get rid of it. So while my disease is rare, there is a long history of surgical approach to a “cure”
Fear of dying?
Nope. If I’m in the 1% that dies on the table during this procedure, I’m not going to be aware of it.
Let’s talk about sex then ?
Nope. I am 69 next month and SWMBO (she who must be obeyed) is 71. Figure it out for yourself.
What is on my mind is recovery from the procedure itself. We are all the product of our life experiences and unfortunately I have had a few pretty uncomfortable ones involving hospitals in the past year or so. I am not worried about whether or not they get the cancer out, I am not worried about being Nilwilly. I am worried about the risks and discomfort of recovery. I’ll save the others up for later if they are needed.
I mentioned in a recent blog that the thing that was worrying me at this point was the post op recovery period. I said that this was because of some previous bad experiences.
A few years back I had a nasty fall and busted my humerus clean in two (now humorous at all). Well, I lay on a gurney in the hospital ED for 36 hours and must have been tired because after they had finished bolting my arm back together, they apparently had a scary time waking me up. When they finally did, I came up fighting and ripped the tubes out of my arm, including the one installed to deliver pain relief. Serves him right they said (maybe) but anyway they didn’t replace it! I now tell everyone I can find in the op room pre surgery to watch out and that if I do it, I really didn’t mean them any harm.
More recently, as part of this current magical mystery tour one of many biopsies was on my kidneys and because the anesthetist was a bit concerned about my heart stopping or something, he decided to give me a spinal block in lieu of a general anesthetic. Well firstly, I had the needle while sitting on the side of the operating table, fully aware and “oh shit” it hurt. In fact I do believe I might have made a comment along those lines at the time. But they hadn’t finished with me. The surgeon played around with my balls until I couldn’t feel it any more, then inserted the cytoscope which I didn’t know about other than by listening to the team conversation (very proper as I was awake and could hear them). But then, the tip of the scope was above the area numbed by the spinal block and I could FEEL THE THING POKING AROUND IN MY KIDNEY. Oh shit I said again, reinforcing their view that I must be a real whinger because they hadn’t felt a thing. Then they gave me a general and I guess if my heart stopped someone must have re- started it because here I am.
Ancient history you say, water under the bridge. Well I would agree except this time round I am getting the full monte, straight up. Spinal block first to manage early post op pain followed by a general.
Same procedure, two days later. Time to get out of bed and go for a pee. Catheter is out. I stand up very carefully as you do. And woosh, without any opportunity to hold it, I dump the whole load of blood and piss all over the floor and the pain was like being kicked in the back by a horse. Apart from the pain, I found this very embarrassing. I was not brought up thinking it was ok to piss on peoples floors, let alone dump a carafe of claret with it. The embarrassment was shared with SWMBO a day or so later. It was quite funny really. Staff had got used to following me round with a bucket and a mop and in time, I regained some retention control for very short periods. So, if I sussed the need quickly enough I could just make it to the ward dunny before I had to let go But I had to be hanging on to something because when I started, the pain inevitably caused me to collapse, Well, SWMBO was visiting and bless her little heart, she decided to help me across the room into the bathroom/dunny. What we didn’t factor in was having her supporting me slowed our progress a wee bit (no pun intended) and I didn’t quite make it. I let go; the pain knocked me down, blood and pee went every where and SWMBO, in her panic hit the emergency button instead of the nurse call button. We can tell you, the emergency procedures in that hospital are first rate. Almost instantly it seemed we had people galore assisting, or at least trying to figure out if I had just tried to top myself or something. I even spotted a stethoscope or two, sure sign of a real genuine doctor. If the lifts had been larger, I’m pretty sure there would also have been an ambulance and a police car with red white and blue flashing. But they forgave me and as they didn’t deny SWMBO entry later on, I guess they forgave her too.
So, thus I prepare myself for the next adventure. Oh, still have to get that full Brazilian organised.
From an early age, i have been a curious bloke with the question “how does that work?” never far from my thoughts. In more recent years that curiosity leads me at some pount every day to a question about how do I work and my present adventure is very fertile ground on both a physical and a psychological level.
In dealing with the pending penectomy and its relationship with my self image, I posed myself the question “how would I feel if it was a finger amputation?”. This put the whole matter in a better, more healthy, less psycho traumatic context. The inclusion of a picture of said penis in this blog is a product of that thought process and it has worked for me. It has helped to change my attitude by disassociating me from it. Makes the whole idea more about mending something, rather than destroying something. And besides, how can I have a before and after without having a before?
I was cruising along getting organised for hospital and D day. Until this afternoon I received a phone call at 4.30 pm from the hospital confirming my admission at 6.30 am tomorrow. Not a problem except I had it down for the day after. So, an hour later, im in the car for a two hour drive to the hospital.
This is a good thing. I am wired to react, not sit and wait. So I am actually pleased that I am now in the lovely cancer assist accomodation for a snooze then an early morning stroll down the road to the hospital. SWMBO will be support team and drive over tomorrow. So I can go to the hospital with nothing but what I’m standing in and then see her and my stuff on the other side. My son and his wife have both taken time off work and are going to drive down. I dont know how I will be feeling but it will be all the better to have them there hopefully when we get the big reveal about whats gone, whats not, and what’s next
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 ”
I’m having having a bit of trouble writing this post with my opioid scrambled brain today. But all is good. I’ll write more when I manage to give these Russian spies the slip
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, if 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
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
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.
Yes, I’m still here. But I am currently in a hospital where internet availability is dodgy at best. But next Tuesday I get the last of the temporary plumbing removed and then will be sent home.
See a then, and I’ll fill you in
Cheers, Nilwilly 😊
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)
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
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.
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.
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
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
Aka the post everyone has been hanging out for. Oops, perhaps not the most appropriate description.
The changes to my body and it’s interaction with my brain produce some truly weird outcomes. Now I am living alone and for the most part physically recuperated, I have time to reflect on and explore this. And I will. It is fascinating.
I get phantom erections and believe me, they feel real. Albeit a little hard to get a grasp of 😁. My poor brain has had a bit of trouble rationalising this. I had a dream a while back that if I put a condom on, I could see my dick. It was physically there, just invisible. Now we have that figured out, the brain and I, we haven’t had that dream again. But humour aside (you have to admit, it is funny) it is a useful analogy to explain to mere mortals what it feels like. No, that’s not right. Not what it feels like, it is what the experience is like.
This of course poses the inevitable question … what to do about it.
Even the most committed DIYer knows there are times to call in professional help. I had been seeing a psychotherapist periodically for more mundane mental health issues like depression (It’s very trendy to admit to depression these days), so it wasn’t a big leap to look for someone to talk about these issues with. I found a psychosexual therapist (which I was amused to discover is also known as sexology). I have seen Kym (yes of course she is a she. You don’t think I’d discuss this stuff with a bloke do you?). I’m not sure who is learning the most but it is very helpful being able to discuss what’s going on with someone who is very open and non judgemental. She is a registered nurse too. Did I tell you I love nurses? Their outlook is so open and refreshing. Oh by the way, she is also gorgeous. What can I say? I’m still a tart. Dick or no dick.
Anyway, enough fantasising. My last homework from Kym was to explore. Remember this is untrodden ground for all of us. What feels good? How good? You get the idea. Living alone is a bonus for this homework and the results are baffling, extraordinary, weird, but never depressing. For me this is what I need emotionally. Instead of boo hoohing about what has been lost, I am able to relish the adventure of what might be left to be found.
Anyone that has mucked around with internet dating sites will at some point be invited to join one of those other dating sites. Known generically as hookup sites but designed primarily to siphon credit card details and money from those (men mostly) that are thinking with the wrong end. Profile pictures on these sites would not have been allowed in Playboy when I was a teenager (I know, I cherished my first Playboy edition with a full frontal centrefold … until my Dad nicked it and took it to work). It is also where the term “dick pics” originated.
Notwithstanding the soft porn nature of the images on these profiles, the operators say that all images are vetted and approved before being posted. So, I wondered how the administrators would deal with Nilwilly’s profile. I registered with minimum information and included my pre-operation dick pic which can be seen elsewhere in this blog. No probs, within half an hour the pic and been approved and published. So, I added the post-op pic, also on this blog. Guess what. It was rejected as inappropriate. There is a point to this observation which I intend to explore further and in much more detail. Its about society attitudes and perceptions. For now, how come it is not ok for me to show I have no dick but would be perfectly fine, indeed welcomed if I flashed one.
Don’t waste your time looking for the profile. I deleted it immediately they deleted my no-dick-pick
I have found, since Un D day, some little changes in my personality. Firstly, I have become an unabashed flirt. It’s fun but I need to be careful as the flirtee may not necessarily know how harmless it is 😊
Secondly, I have never been one that suffers fools gladly. But I have previously been able to just brush it off. But not so much any more.
My alter ego posted this on Facebook today and on reflection, I thought I should share it here.
My incompetence and stupidity tolerance is way down. I get upset aboyt little annoyances, which makes me angry and sarcastic. This projects me as a grumpy old man.
Like today. I have been trying to organise an appointment with a urologist in B near my new hometown, to whom I have been referred by my urologist in W, near my old home town. I know this referral was done. I was sitting in WU’s office when he phoned and spoke to, then dictated a referral letter to BU.
Two weeks ago when I phone BU because I’ve heard nothing, I am told he needs the case notes. Well obviously, but I’m surprised they weren’t sent with the referral. But I phone WU and ask for them to be sent (or re-sent).
As of today, I’ve heard nothing so I’m on the phone again. BU’s office say they haven’t received anything. WU’s office say they will send it again today. That will be the third time by mail AND fax.
So I ring BU’s office again and get an answering machine. I leave a message asking if they would PLEASE phone WU’s office and sort this out.
Was I wrong to include the parting words along the lines of “this is very frustrating, it’s a good thing I don’t have cancer or something?”