My prostate cancer journey
By Gavin Hartford
The back story
The back story goes like this: it’s October 2019 and we are at the end of a year of preparation for an off-road adventure across west Africa. It’s taken its toll of endless admin and vehicle prep work. But we are kinda done. Only some visas to collect and we are gone in literally four days. My head has left already.
I pop in for a routine health check. My GP says she doesn’t like the feel of my prostate and sends me for a PSA test. It comes back in the red zone with a 4.5 PSA reading. She says I need to talk to a urologist. I go instantly. Not because of concern, but because we are about to leave and I wanna get stuff done. I am running out of time. The urologist does further tests and says to me, with a seriousness that comes from the depth of 30 years’ experience, that it’s likely I have got prostate cancer. He will need me have a biopsy on my prostate and an MRI scan to confirm his diagnosis and to determine how aggressive the cancer is.
I am dumbstruck. Deadened. I stumble over my words a little and manage to say
that “I need to give my wife a call” as I exit. He is saying I should schedule the appointments immediately, but I am way beyond hearing that. I wonder into the back of Milpark hospital where the boilers are. They are hissing and steaming about me. Feels appropriate. I drop a call to my partner and say “I think I have got prostate cancer and he wants me to do further tests.”
Her response was swift and forthright: “but we are going on the Troopy trip!”.
That’s all I needed to hear. I left the hospital and we never talked about it again. Not once. It’s worse: we shut it down so hard that I suddenly overcame my middle of the night urinal ritual. No more of that routine. Not in the Land Cruiser Troop Carrier (Troopy), where you must wake your partner to leave the roof top tent and climb out. We actually fixed what had been a core diagnosis of prostate cancer on the Troopy trip: I overcome needing to go to the toilet one or twice a night. I became normal again. Sleeping right through. Pure bliss.
The back story gets worse. After a 27,000km off-road tripping for six months, across 13 west African countries, we get shut down by the corona virus on the southern border of Mauritania.
Not for a moment even remembering my cancer diagnosis for a further 15 months. And then it comes back to bite me. With its own little menu of indicators.
I notice something strange, something odd. Like this has not happened before. My nails on my thumbs and middle finger start cracking up. My initial thought is that it could be a sign of a fungal thing that I may have picked up in the rivers of west Africa. That’s how far gone I was. Everything was west African flavoured in my consciousness. Decided to check in with my dermatologist. She looks and says “it doesn’t look fungal. Do a blood test. Something deeper is going on.” I’m perplexed. Literally. Still not even recalling my cancer diagnosis.
Unsurprisingly my blood test turns out fine bar my PSA. It’s shot up to 6.7 in the time since we left for west Africa. That’s a 2.2 PSA movement north in just 21 months. My local GP in the Mpumalanga rurals says I got to see a urologist. Again. This time I’m really listening. Nothing to distract. Not even the covid pandemic.
That’s the back story of my prostate cancer journey. When my doctor daughter hears this story she shakes her head in dismay: “you two are so irresponsible” she says. She thinks I need psychological help. “I am in denial” she says. And of course, she is probably right. Not least because my particular brand of cancer is an aggressive Gleason 8. Just my luck. And yet, yet there is still a part of me that says what the fuck. I have no regrets. We did this life changing adventure across west Africa with cancer eating away at my prostate. I never thought of it once. The road and the markets and the people occupied my undivided attention. Captured me with their humble, poor and full lives. Taught me lessons on how to live light on the earth. Helped me reset my innate prejudice and know that west Africa is accepting and doable. Its off my to do list once more for now. Corona rudely stopped me and isolated me and focused me to face my cancer second time round. Feels like destiny got me. Like the universe aligned somehow so say now is your time. Made me stop and look at myself anew. Inside and out. No turning back.
The second diagnosis
We drive to Mbombela to meet the urologist. My rural GP recommended him on the strength of “dad says he is very good”. A cancer survivor herself, she reassures me that it is beatable and that she will “pray for me”. That sounds serious. Deadly serious. Bordering on terminal, I think. And then I don’t think and simply drive, zombie like. “Let’s do this cancer thing” I hum to myself, remembering a phrase my son used when he left for Canada singing his upbeat version of “let’s do this thing”. What will be will be. I try to remember that I have had a good life. Very good. No regrets. And yet, yet something deep inside nags at me and says it feels like this arrived a decade or two too early. I feel cheated. But no-one gets the right to determine the end game. I think. And think. And then I don’t think again.
The Mbombela urologist does the same procedures that the Milpark one did some 20 months before. He gives the same diagnosis: “cancer likely”. Schedules a biopsy a fortnight later to confirm the diagnosis and get my actual Gleason reading. It’s a day procedure under general anaesthetic. But I can’t get my results. My urologist says he is going to the bush. I feel a moment of envy, even though I have been living in the bush for a long while. He says I must wait a week till he gets back. It’s an uncomfortable thought. Like waiting to hear your sentence. Even though you have not been convicted yet. Feels both unfair and a relief at the same time. One more week of freedom before I hear if I am convicted.
Those days of waiting are a mixture of a fast-disappearing ray of hope and a heavy, dull wait for the inevitable outcome. I kill the days on my bike. Exhausting long sessions of off-road riding. I’m feeling fitter and stronger than I have been in a long, long while. “It’s a ruse” my scientist son tells me “you are desperately ill”. His chillingly accurate words ring in my head as I ride on and on. Don’t feel in the least bit ill. Maybe I can ride myself free of this crippling illness? Ride on. Ride enough to finish me off for the afternoon. Anything to free me from my head. Free me till dusk sets it. The darkness brings back the worry. I’m restless and infested with anxiety. It’s like there is something eating my insides and no therapy can stop it. I feel helpless. Alone. My whole life sweeps across my thought process. Chapter by chapter. On reflection it feels kinda ok. Like I have done enough and had enough. Yet it doesn’t feel enough. It feels like I’m being cheated. What about my grandchildren whom I may not get to see grow up? What about the decade or more that I believe I’m still owed? What about all that I was planning to do in my late life years?
My thought process haunts me. I toss between the thought of how much is enough and the one that says I’m being greedy. I don’t deserve more. I’m already part of the fortunate few of less than ten percent of the global population live to the age of 64. The logic of the data doesn’t suppress the unease. The inordinate right to life keeps rising, keeps demanding. I try to smother the thought process. I listen with all that my ears can hear to the sounds of the bush about me. I consciously and actively live in the present. Suddenly everything is illuminated. Each cricket or cicada or bird sounds like a beautiful orchestra. I listen to the notes. No longer seeking an identity for each call. Just listening to the chorus. And the notes. And thinking how beautiful life is. That’s what takes me to sleep and wakes me. Night after night.
The urologist returns from his bush adventure. And the dreaded call arrives with him. He communicates in a cold and factual way: “You have cancer. Aggressive cancer. Gleason 8. You need to see me urgently to discuss treatment. Schedule an appointment”. I hear his words but I’m not really listening. It’s like the words are injected into my consciousness. They arrive uninvited. I’m still holding the phone. Looking at my partner whose face has become contorted with pain and fear instantly. I have nothing to say to her but to confirm what she knows. We sit in silence. Knowing that this battle is just getting started.
Days later we return to my Mbombela urologist. It’s a solemn silent journey. We are in the hands of the gods. Or so it seems. My urologist looks genuinely pleased to see me in that somewhat doctor like detached way. He is looking relaxed from his bush venture. He carries a demeanour of authenticity which is appealing, despite the ferocity of the news he bears. He describes how he will need to surgically remove my prostate through open surgery. He will carve me open from bellybutton to pubic area in order to access the prostate that sits at the base of the bladder behind one’s intestines. Sounds messy. A two-to-three-hour procedure that could cure me. He couldn’t really say what the margin of risk was. But he said he has done this sort of thing before many times. It’s how things are done in the rurals. He wants me to schedule myself in for this “open surgery”. I say I need a few days to think it over. And we leave. Just like that.
A comatose deadness hangs over me on the drive. I am at a loss of what to do. In the absence of direction, I give my doctor daughter a call. She is in my corner for sure and I’m feeling the need for some home-based, love infused opinion. I have scarcely finished my report when she is declaring forcefully: “come to Joburg and I will arrange for you to see the best urologists here”. Bless her. Gives me a break. Buys me more time. And maybe a different therapy. The idea of being slit open like a fish under lights for a few hours was not at all appealing. Not even the authenticity of the surgeon could save my discomfort with the very thought of it. Joburg sounds like an essential escape route from here.
Doctor shopping through brachytherapy option
Within days we have been scheduled to see a leading urologist in the leafy northern suburbs of Joburg. I know this space well. This was my erstwhile stamping zone: the semi sophisticated northern suburbs, where work and accumulation are symbiotic first cousins. The urologist’s waiting room drips with the same elitist comfort and style. On the walls of his rooms hang countless certificates of his accomplishments academically. The sight of them makes my stomach churn. But he fits the display part. This urologist is suave, confident, eloquent, like a kinda super charged, overconfident professional. Not the steely artisanal authenticity of my Mbombela man. More like a movie star who revels in his fame and adorns himself in a string of golden globe awards. He glances at my file and categorically prescribes a menu of cancer beating drugs that reads like this: brachytherapy of 75 odd radioactive bombs inserted into the prostate whilst under general anaesthetic in a day procedure, to nuke the cancer from the inside out; six weeks of daily radioactive beam therapy across the pelvis area to mop up cancer cells; six months of testosterone blocking hormone therapy, to starve the little cancer bastards from feeding off my testosterone. “That should do it” he says. Downsides: incontinence, hot flushes, libido destroyed, erectile function definitely impaired. All of the above could be temporary or permanent, depending on all sorts of pre and post-operative factors. Shew it sounds rough.
There is one single appeal in all of this nightmare menu: no surgery. All the rest sounds too awful to contemplate. Is this all medical science has to offer in the 21st century? All these drugs? All these downsides? I am bewildered and dumbstruck. “What chance of these drugs freeing me from the cancer curse?” I ask. “A 95% success rate” says the suave urologist with a steely confidence honed from decades of experience of selling this drug cocktail. “And what happens if I am disposed to be amongst the unfortunate few five percentiles?” I ask, distrusting my good fortune of having survived a life truly worth living. “Then it’s chemo” says the urologist. “But we are not there yet” he exclaims as a throwaway line, in a matter-of-fact kinda way.
We leave. Before leaving we are told we must first get to see the oncologist who mixes the drugs. He has consulting rooms on the east rand suburb of Benoni, in the heart of metal fabrication wasteland of our country. We schedule an appointment and do the drive to Benoni days later. I know these streets and houses well from my union organizing days. They instil fear in me. Though today it’s not the fear of the apartheid monster. It’s the fear of what’s happening on my inside. But fear, being fear, never leaves a calling card. It simply churns. Relentlessly. But somehow that old familiar feeling of fear is comforting under the circumstances. I know it well. I have done my fair bit of fear throughout my life.
We arrive at what is a very old building for the very aged. It is populated by entirely white patrons that can no longer care for themselves. Feels odd, like an apartheid induced reconstructed past. It’s kinda somewhere between an old age home and a frail care centre. Just degrees of decay of the human body. It’s a sad place. A place of discarded people. It doesn’t inspire any confidence in the process I’m going into. I can’t believe this is where my brachytherapy oncologist hangs out. But it is. We find a receptionist who looks like she needs a new life. Her false eyelashes pasted onto her painted face make-over just don’t do the trick. She has clearly done the hard yards of life. It shows in the canyons on her face and the callouses on her hands. But she is holding on, staying in the game out of pure necessity no doubt. She finds my file in a pile of countless others and asks us to wait in the waiting room. It’s wall-to-wall full. The chairs overflow down a cold and barren corridor. Each chair is occupied by old and dying people. They look grey, as in not grey haired, but also pale and tired, grey faced people. Like they are all very sick and in different phases of dying. My blond mop and overfed frame just doesn’t belong. I look way too young and fat for this.
It feels like I’ve arrived in god’s waiting room. I can’t stand it. We decide to wander about the old age estate. This is definitely going to take a while. We find a run down tuck shop with a coca cola sign outside. They have powdered, synthetic, coffee and toasted white bread sandwiches on offer. We pretend to drink and eat as a sort of disguise for our presence. And we wait. And wait. Finally, hours later, our turn is upon us. We are shepherded into the doctor’s room. Another doctor. Another pile of files. Another story to be told. And a big computer screen for patient education, I assume.
Our brachytherapy oncologist is a thick set man of undetectable age. He could be anything. He sells drugs after all. He walks me through my file again. And then says with the force of god: “there is only one way for you and that is brachytherapy, radio therapy, hormone replacement therapy”. The same menu as before. It’s probably written in my file. He sees that I look unconvinced and uncomfortable. He ups his sermon by telling me to watch the big screen. He opens a website and starts clicking on different scenarios of likely outcomes. I’m thinking what kinda algorithm lies behind his clicks. He lets his clicks across the website tell a story, which he illuminates with his own colourful brand of absolute conviction words and phrases and storylines. The narrative is simple: do the drugs menu and you have a 95% chance of killing your cancer. He prescribes chemo for the unlucky five percenters. Same story. Just said with a hardness that comes from the master technician. The drug mixer. The fixer. The physicist. It is heartless and factual. I thank him and leave.
I am now seriously “doctor shopping” as my daughter refers to it. Hard core doctor hopping and shopping. Ruthlessly. Telling each doctor about the last doctor stop. They must know that I am shopping. Nothing feels quite right. My nights are sleepless and always end in google. Together with my two academically-inclined children we are covering everything from the epistemology of the disease to all remedies and success scores. From the alternative to the scientific. Nothing escapes our collective glare. Of course, I am secretly searching for a silver bullet. But we are collectively arriving at the conclusion that no such bullet exists.
In the course of the google hunt, I stumble on a bunch of American and European websites devoted to prostate cancer. It’s becomes clear that the go to treatment for all of the northern hemisphere, western world, is to extract the festering prostrate with robotic assisted, radical prostatectomy surgery. RARP surgery for short. It dominates by a long measure the treatment regime in the western world. RARP is performed on a DaVinci machine. More googling and I find a DaVinci trained surgeon in Pretoria. I cold call his rooms and schedule an appointment. I like technological innovation and I am a fan of the powers of the algorithm. Especially when its target is the betterment, rather than the enslavement, of humanity. Robotic surgery sounds good, like automated driving of an EV, in this context. I’m got to try this one. This is my last throw of the dice.
The RARP surgery option
It’s late on a Friday evening that I get to see the RARP surgeon. This time it’s in another familiar place to me: the city of Tshwane and the seat of government. Know these streets well too. They also used to instil a fear of apartheid atrocities. But this time they don’t. They are all still there. But the offices are filled now with my erstwhile comrades and friends. Makes it feel homely, like I belong here, though it’s still has an edge of cold foreignness to me. I associate this city with the great social divides between Mapobane, Loftus and the Union Buildings, with uncaring bureaucrats pasted wall to wall in-between. My robotic inclined urologist hangs out in the oncology hospital uptown amongst the jacarandas. It’s another cold grey building whose architecture is not dissimilar from most of the apartheid styled buildings. But it feels right. Like it belongs here in Tshwane.
It’s after dusk when I get to sit in the RARP surgeon’s waiting room. About me everyone looks normal. Like they are not grey. They have real human colour in their faces. A sense of relief sweeps over me. Though I have no idea why in the moment. I’m caught in a thought process of trying to understand my newly found comfort in this waiting room when I am called to see the doctor. Again, he has my file. I take it that he has glanced at it and instantly give him the benefit of my doubt, without even asking. I’m definitely tiring from this process. Becoming accustomed to the bald fact that I’m not special, I’m ordinary, I’m a number, I’m on a production line, I don’t even have a barcode ascribed to my name. Get used to that Gavin.
I tell him my story, this time in a strongly edited version. Not the back story, but the doctor shopping story. The hard facts. Cutting to the chase of my need to free myself from cancer with no half measures. I could be sounding desperate, but I don’t really know. I can’t hear my own words. He listens, though I detect a discomfort in his posture or aura, dunno which. Not with my story. But with the advice I am receiving from my doctor shopping list. Then he speaks. He has a deep authenticity that reminds me of my artisanal type Mbombela urologist. There is something genuine in this man. Something honest. Something true. Perhaps it’s his Afrikaans accent that woos me and bamboozles me. I don’t know, but I like his voice. And his words ring organically true. Like they resonate with my head and heart somehow. He says, “your doctors are all wrong and if they were here, I will tell them in their faces”. He is referring to the Joburg and Benoni doctors. And he is trashing their remedies with a deep confidence and conviction. He is telling me stories of “salvage surgery” where he has to dig into radio actively burnt tissue and “salvage” an organ or remove a contaminated piece of burnt human matter! It sounds beyond scary and very messy.
His message is simple and rings immediately true to me: start with surgery and you will have a 95% success risk rate. If you are an unlucky five percenter, he will “sweep” me clean with radioactive beams and maybe starve the rest of the cancer cells with some testosterone blockers. But that is only if we are unlucky, if we are the unfortunate five percenters. He says he believes we will be lucky and I want to believe him too. “It all depends whether the cancer has escaped the capsule. And the MRI scan shows no evidence of that” he says. He will only know for certain once they have sent the removed prostate for testing post-surgery. We should start the surgery he says. “Book yourself in”. And without hesitation I walk out of his consulting room into his reception and schedule myself for RARP surgery at the first available date, which happens to be a fortnight later. We leave the oncology hospital not a moment too soon.
We are driving home down the M1 motorway to Jozi and it feels like liberation has finally arrived. Nothing has changed and yet everything has changed. I have set myself a path. I know where I am going. I have a deep sense of inner knowing that finally I have found my surgeon and selected a least invasive procedure. I like the thought of robotic surgery. Sounds appropriate for our 4th Industrial Revolution technological age. And my surgeon has over a thousand procedures behind him. He knows how to sail in smooth and strong winds. That’s for sure. I’m so enamoured in my newly found head space, that I write this to my RARP surgeon as we drive:
I just wanted to say how happy and relieved I am after the consultation with you. I must have driven the N1 countless times, but nothing could match the feeling of joy and elation within me as I drive this highway today. It was like a huge dark cloud over my life had cleared and I could see the sun once more. Everything was illuminated.
I know this is just one round and the battle is far from over. I will retain balance and perspective. Anything can still happen at any time into the future. But I am good with that too.
I am good with it because of the way you too painted future potential scenarios and how they might be dealt with. But above all I am good with that because of a deep inner sense of absolute confidence in your knowledge and skills and experience and therefore professional competence. I feel truly blessed to have you in my corner, whatever happens.
So thank you doctor. For everything you have done for me so far. And for your calm reassurance about the future. I know I am not alone in celebrating the work you do to help so many.
I need some friend therapy. And I need a whisky or two. On my phone driving down the highway I’m calling together my artist friends. We assemble as family. As we always have done. Writers and painters and set or sound makers and curators and film makers. All assembled in the new studio of the painter and teacher amongst them. We drink and I share my doctor shopping journey with them. They all nod empathetically and share their own stories of ailments from our sixty something generation. There is a comfort in us all aging beautifully together. So it seems whilst sitting in a circle in a ramshackle, empty, studio-in-creation, on a chilly highveld evening.
My friends give heart and soul and comfort to my inner angst. They hold me. They affirm me. They let me be. It’s warm and loving and beautiful. The perfect antidote for my weeks of cold calling and doctor shopping. And our conversation summits in a vote. A vote for or against surgery vs the drug cocktail. Surgery wins by an absolute majority. I’m fully decided. For myself and for my loyalty to my group of soul friends. It feels good and right and true to be cutting myself free of the cancer. It’s clean and honest and decisive. A sudden hit. Nothing could give me greater pleasure than a proper surgical fight back. Nothing at all. It’s my time. And I’m ready for it. We all drink to that.
Robotic Assisted Radical Prostatectomy (RARP) surgery
I have done the test gauntlet: MRI; colonoscopy; biopsy; bone scan. No sign of any other cancers yet. Just the prostate. The RARP is least invasive and decisive, leaving space for further chemical treatments downstream if need be. I am aligned to my process. A certain stillness steps in. An acceptance of the inevitability of my fate. A delightful feeling of becoming another, one surgery step away. Just a fortnight to wait. What to do in my time left with my old self? Should we have sex endlessly in a parting ceremony with my soon to become dysfunctional penis? Should I take some drugs or get drunk to enhance or debilitate the experience? Should I listen more, learn more, from my partner? It all feels contrived and forced. Maybe that’s the new normal. Maybe that’s also the new me speaking prematurely. I can’t go there.
Back to basics, I think. My daughter recommends pre-operative breathing exercises and meditation of sorts. Now that sounds totally doable. Her friend appears online and the breathing exercises kick in. I ride and I breathe, and I listen and try to feel the bush. All the time consciously trying to think only of the now. It doesn’t come naturally. I am a habitual worrier of past failings and an obsessive planner of future conquests. Its deeply embedded in my modus operandi. I have to unlearn all of that. What is done and gone cannot be undone. Let it go. What is coming is not here, let it go too. What is here is now and what is now is all you see and hear and feel and smell about you. Embrace that. Immerse yourself in that. It will set you free. I tell myself that and I repeat it to myself constantly through the weeks to my surgery date. I’m learning to live in the present and its working.
That helps a lot. The bright sunny blue day of my surgery arrives and I am feeling calm and free and present. Surgery is a kinda therapy too. It certainly concentrates one’s mind on being present. Nothing else matters. The white lights, the coated staff, the clinical passageways and lifts and wards. They all are magnified in their presence by their unfamiliarity. That certainly concentrates the mind. You roll with the process. Numberless and nameless. Not caring nor expectant. Resolved to a simple state of just being without hope or fear. Truly living with the present. I’m feeling almost like an Alice in Wonderland when I literally walk into the theatre and see the banks of computers, the six huge octopus like arms of the Da Vinci machine, the computer console for the surgeon. My eyes are on stalks. I want to discuss design, process, technical specifications, skills, competence, teamwork. Like I am a unionist again on a plant tour of some new age Elon Musk imagined electronic vehicle plant. But there is no time for that. All I can think of is that it’s so wonderfully technologically intensive and that I hope all of humanity one day can access this technology and skill. Theatre work beckons and intervenes. About me is a team of surgery soldiers, each with his own set of commands, working in unison. I place myself at their command. Happily and willingly so.
The anaesthetist says I will feel a small prick in my lower back as I sit upright on what feels like a work bench of sorts. I scarcely feel the prick when a warm numbing of my lower back and legs and feet sets in. I lie down and am I am totally paralyzed as the epidural takes effect. I cannot move my lower half and yet I am still totally conscious. Didn’t expect that. It feels glorious. An out of body experience. Literally. I look up at the lights as I hear the anaesthetist saying that he will now insert the “Michael Jackson juice” into my outstretched arm. Bring it on I think and then the blackness sets in for two hours until I emerge to the sounds of voices. I have no idea where I am. My body is in spasm and shakes uncontrollably. It’s very, very scary. I feel myself calling for help but I cannot hear my voice. And no one seems to be listening anyway. I feel another prick, this time into the upper arm. Gradually the shaking subsides and a calmness sets in. I am saddled and strapped to a hospital bed. I have oxygen pipes up my nostrils, drips hanging from both arms, a drainage pipe on my left side, a catheter in my penis and a kinda cushion that is wrapped around each of my ankles and is squeezing me methodically and systematically. I cannot move. I dare not move. I am being wheeled back to the intensive care ward. And I know for certain my recovery journey has just begun. And that thought keeps me hopeful, keeps me settled.
I spend three nights in hospital and I am grateful for every night. Hospitals are surrounded by carers and I feel in need of a lot of care. And I am fortunate to have my partner carer by my side as I head back to my doctor daughters’ home in Johannesburg for a week, before returning to have my stitches and catheter removed, the last step in the clinical process. I feel liberated walking out of doctors’ rooms without a catheter and with a pad like nappy between my legs. Grateful for small things. I’m ready for my new life. Or so I like to think.
I return to the bush with six neat holes in my lower belly and a pad in my crotch. Day after day I learn to change pads and shower and walk slowly. It’s a very gradual recuperation process as my body finds itself again. Everyone’s body has their own songlines. Mine sings softly and gently and slowly. Each day better than the last. I take care to rest frequently. Never been one to stretch the physical boundaries. Weeks pass in a routine of walk and sleep and eat and sleep and walk again. My strength is coming back inch by inch. I am taking Cialis daily to pump blood into what remain of my penis. I have bought a penis pump to blood me up now and then. I can scarcely look at that now useless feeling appendage between my legs. There is no sign of movement for weeks. But the words of my physiotherapist ring relentlessly in my ears: “do your Kegels and use it or lose it.” So, we try. My partner is beyond amazing in her readiness to work with me to find new sexual arousal. We try new things. We get shocked and overjoyed when I have my first orgasm, even though is half of what it used to be. And even though it comes with leaking urine. Still, it comes. We learn that there are wet ways and dry ways to get to orgasms. And we win some and lose some. It’s a journey of discovery. A journey made better by trial and error and a lightness of living and being.
At six weeks I get PSA tested again. It’s a big day and we wait anxiously for the result. Eventually it comes with a call whilst we are on the road to a nursery on the Swaziland border. I cannot believe my ears when I hear my PSA reading and ask the caller to repeat herself three times over. “Zero point zero three. Undetectable” she says. With each repeat we screech with excitement. Its like I am getting baptised into a new life. A second chance. We hug and kiss and start singing those magic numbers together as we head for the nursery. It’s a seminal moment that seems to affirm and confirm everything we have been through. Three months later we PSA test again. Same score. Flatlining. Nothing could be better. We have set a course. The task at hand is to retain the course for every test in each forthcoming three-month cycle for the next two years, then six monthly for a further three years, in order to be categorized at clinically cancer free. A long road ahead.
That’s the clinical front office story. The back office one is way deeper and more colourful. Because the physical story is only the driver to an emotional and intellectual, revolutionary story. My cancer has ushered in a new me. A new me that I am still learning to discover and to cherish and to love. Its early days but some distinct features of the new me are starting to emerge. And they are all welcomed, like the first buds of spring. I have been compelled to confront the source of male sexual ego and let go of penetration, of orgasm, of thumping bodies as some apex summit of love making. To know that love making and being in love is an everyday act of ongoing intimacy above and beyond physicality, though not excluding the touch, scent, motion of arousal and orgasm itself.
That narrow pursuit of male initiated, orgasmic driven penetrative sex is gone, just like my erection. In its place a new field of partnership and sharing and intimate play that stands tall between me and my love. And its not just in play, or in lovemaking, that the new me finds its comfort zone. It’s in a deeper appreciation of me as a father and grandfather, in a new felt desire for care of health and home and self. A deeper conviction that, as a sixty something prostate cancer survivor, there is much, much more I want to give to the world. Understanding and appreciating that I am an insignificant drop in the ocean of all living species. But a drop nonetheless, capable of listening and learning and servicing the social and environmental needs of our planet wherever I am, whenever I can. Life is so beautiful. It has a new glow and a new energy. I live in it. Dawn to dusk.
I live in the present, consciously, day by day. Each step I take now is more considered, with more meaning, more depth and more love for others than ever before. Telling this story is part of creating that new and significant love for life, in the unbridled hope that others too may read this and thrive and survive the cancer curse.