Prostate cancer journey: How ‘doctor shopping’ and ‘friend therapy’ gave me hope

PART 3

We leave. Before leaving we are told we must first get to see the oncologist who mixes the drugs. He has consulting rooms in the East Rand suburb of Benoni, in the heart of the 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 organising 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 around the old age estate. This is definitely going to take a while. We find a rundown 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 kind of 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 academic-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.

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 install 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 still has an edge of cold foreignness to me. I associate this city with the great social divides between Mabopane, Loftus and the Union Buildings, with uncaring bureaucrats pasted wall to wall in-between.

My robotic inclined urologist hangs out in the oncology hospital up town among 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. Around 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 said 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 bar code 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 from the MRI scan he can see no evidence of that, he says.

He will only know for certain once they have sent the removed prostrate 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 said of robotic surgery. Sounds appropriate for our 4IR 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, I write this to my RARP surgeon as we drive:

Dear Doctor, 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. Kind regards 

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 among 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 sixtysomething generation. There is a comfort in us all ageing beautifully together. So it seems while 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.

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 preoperative breathing exercises and mediation 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.

• This is the third story in a new feature called First Person. If you have written a personal story and you want to share it email karrasa@arena.africa

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