To find yourself in a doctor’s office at any age is rarely a pleasing experience. Unless perhaps your ailment is a minor one - easily assisted, nonintrusive and, blessedly, one that departs quickly.
However, when the prognosis is a life sentence at best and a death warrant at worst, one’s perception of life as you knew it up until that point shifts irreversibly. Living with the aftermath of an osteosarcoma for thirty-five years, one can be forgiven for feeling a little deflated to be in front of a doctor and, once again in need of surgery. Diagnosed with this rare condition when I was a twenty-year-old undergraduate student, I have come to discover the overwhelming need for support that exists in South Africa for the children and young adults diagnosed with this complex disease.
The chances of my survival were originally rated at 7%. I’m unsure how statisticians come to such conclusions. But thankfully, I was never much good at maths. At least something was in my favour all those years ago.
I’d already had five operations during my lifetime which seemed far more than enough for me. Life however, as the saying goes, had other plans. The doctor who was to restore my physical wellbeing this time was Mr Keith Hoskins. He sat behind his desk pouring over my ex-rays with an intensity akin to a detective surveying a revisited crime scene. It certainly felt like it - being robbed of my youth at a tender age and having to manage a lifelong disability that forces you to knock on someone else’s door in need of assistance years later have a way of presenting like violations against one’s personhood. Perhaps that grievance with the recidivism limb sparing surgery entails, never fully departed for me.
Now, thirty-five years after the initial diagnosis, my distal femoral replacement had become loose for a second time and needed revision. I faced the prospect of a third prosthetic and the intrusion of all the added chaos that entailed, not just for me, but my immediate family as well. All for the sake of keeping me not just on my feet but with two feet and of course, living as much of the life that I had, so far, survived.
Doctors, like in all disciplines, have a unique lexicon. In geology, mine had been faults, unconformities, strata, igneous intrusions and the like. Which, if you are not in this field, could be simply translated as the life and times of rocks. In medicine, procedures are operations. And revisions are simply more of those. I felt my mind rearranging itself in preparation for what lay ahead.
In Hoskin’s office, though, one thing got me curious. All along his desk and surrounding windowsills sat an array of prosthetic implants. Although I had relied on this technology to get me around and have a life handed back to me, almost intact, I had never handled one myself nor seen so many as in this somewhat onerous display. I must also confess that, with the passage of time, it becomes a little unnerving when the person treating you is similar in age. I could never understand why some of my peers at university had chosen medicine as a career. I always preferred the outdoors.
Perhaps that’s why being confined in hospitals had always left me feeling like riding the London Tube. Necessary to get from point A to B, yet I was always hankering to come up for air. To take in the sky once more. ‘Yes,’ Keith said. This was the way to get to point B. And sure enough we did. And now, no longer subterranean, when we meet, we discuss what support services there are for children, teenagers and young adults with sarcoma. ‘None as far as I’m aware,’ he says flatly.
‘I think we could do something about that,’ I responded.
And so here we are.
If you are reading this and have recently been diagnosed yourself, perhaps have a loved one who has, or likewise have lived with the diagnosis for some time, I’m certain you’ll quickly grasp the irony of my opening remark about what it is like to go and see a doctor.
It is a very common phenomena that during our lives we briefly entertain thoughts of a morbid nature. Most people manage morbid thoughts by diverting their attention back into less distressing and every-day concerns because such thoughts often solicit anxieties that are bewildering and overwhelming. What then of the person who experiences one day such fantasies as a reality?
Say, after a routine x-ray, a fracture, or investigation into a swelling and aches and pains at a joint? A diagnosis of cancer swiftly undermines a person’s assumptions about the world. I survived a sarcoma, one that had metastasized to my lungs.
The anxiety this illness generated for me at times, particularly on diagnosis, was shattering and unsurpassed. But I soon learnt that anxiety can be harnessed however, like the wind, to mobilize resources both physically and mentally and manage adversity. When resourced, the mind is free to concentrate on what needs to be done to survive.
If these two aims are sufficiently met for the patient and their families and friends, then the whole system of relationships can become a vehicle for recovery.
Psychoanalyst Ernest Jones when debating the existence of God with his mentor Freud reported a fellow doctor saying that, ‘when he reaches the Eternal Throne he would come armed with a cancerous bone and ask the Almighty what He had to say about it’. Clearly, a benevolent God or indeed any God, could not exist according to Dr Jones.
Who could I turn to, to explain why my everyday world had come to an abrupt halt? My vision of the future was shattered, leaving me feeling overwhelmed and crushed. Whilst I had to adjust to a rapid and dramatic change in health, my peers at university continued with their studies, with field trips and excursions enjoying the sports I had once taken for granted. Skiing, diving and hill walking were a few of my favourites.
Normally, childhood and adolescent anxieties centre upon a person thinking and feeling that they are both capable and attractive enough to negotiate the emerging adult world. It is a time of cultivating healthy narcissism and belief in oneself as the soon-to-be adult takes their first tentative steps out of the comfort zone of the family. My only priorities prior to diagnosis were to pass my exams, make some friends whom I could share a flat with, my hobbies and find out where the next party was.
I felt cheated. Why me? bled into myriad concerns. I was devastated to hear that the doctors might not be able to cure the illness without permanent disfigurement or disability. Who would find me desirable? And if someone did, would I be able to have children after the onslaught of chemotherapy? How would I support a family? What job could I do after this? Visions of working in conservation fell away as quickly as my hair. My life had taken a major swerve ball.
After the initial shock, feelings of depression, hopelessness and anger mounted. There was at times a desperate search for meaning, of hope and holding tightly onto life. At others, apathy and resignation. This is what a cancer diagnosis does to the mind; fear arises, splitting the mind into these two opposing parts. One alive, the other entertaining fantasies about death.
I have come to believe that it is this psychological process that suffuses the language used to describe the physical. My body was often described by others as a battlefield where the war with cancer was waged. I came to realise that my capacity to contain these separate and often discontinuous self-states delineated an ability to keep me orientated towards life -versus a state of fragmentation and despair. Indeed, when those other states arose, it felt like losing a battle to the illness, even when I was already alive.
A friend once described the events of diagnosis to me as, ‘suddenly the whole landscape has changed’. When confronting an almost indigestible and disorientating reality, wishes to avoid or deny it are inevitable. My femur fractured. There was no walking away from this one. I couldn’t put having cancer off for a day, like an essay, saying, ‘I’ll do that tomorrow’. Old strategies to manage stress and anxiety no longer applied.
People in my supportive network, both family and friends were confronted with overwhelming anxiety too. They became just as reactive. Some members of my peer group experienced a sense of betrayal and anger about me getting sick and no doubt, blamed me for abandoning them. If illness becomes intolerable to the self it quickly becomes so for everyone else. As I lay in my hospital bed visiting friends passed on messages from non-visiting friends; ‘hospitals are too boring to come to visit’. Another, ‘he’s just seeking attention, even my dog got cancer’. Even to this day, there are members of my family I have never seen since. Perhaps the worry is that your fate will one day become theirs. Your illness may even provoke memories of other loved ones’ illnesses and losses. Indeed, a close friend of mine at that time, who I had known during the loss of his mother to breast cancer only two years before, I never saw again. All my old school friends slipped away.
Why do young people hold such beliefs about their invulnerability? Why did we all see ourselves as immune to ill health, even death? Perhaps it is only as we age and bear witness to our bodies changing further that we begin to adjust to the reality that we will all die, one day. Inevitably this task takes time. That is the one thing in short supply when you are diagnosed with a sarcoma. Midlife is where these adjustments usually manifest.
If these experiences were not challenging enough, try then to manage your clinical teams’ anxieties. Oh boy! Some worry that you will be overwhelmingly depressed on hearing the diagnosis. True. They quickly become avoidant - either literally, or in giving the diagnosis, or discussing your prognosis.
My first oncologist danced nervously at the end of my bed saying not to worry about remembering the name of my cancer - after he told me it was an osteosarcoma. And that I would be back at university come October. It was May.
It became clear to me that giving overly optimistic prognoses no doubt goes a long way; not in reducing the patients’ anxieties, but the teams. It frees them from having to bear your and depression. My first oncologist and mother both decided not to burden me with the prognosis believing it would be helpful. I found myself becoming increasingly vigilant to discerning truth from the inauthentic, no matter how comforting the lie. Sadly, interventions such as these can put the patient at risk of developing an adjustment disorder.
My peers still had access to the university, even if I couldn’t get there. My bedside locker soon became a mobile library. It took a change of not only an oncologist, but hospital too before my second oncologist summoned up the courage to tell me that my condition was probably terminal. Surprised by my reaction of relief I added, “finally someone is speaking a truth that only my friends and I are reading about.” And this is what you need. It is called developing a therapeutic alliance.
Here, we open with a caveat. There are doctors who, unknowingly, grapple with denial yet act with good intentions. As the patient and their loved ones and colleagues will no doubt do too. All you need to do is scratch the surface of the medical fraternity to find them.
Of treatment, they’ll say, ‘it’s in your best interests’. Of course. Simply put, they just don’t know when to stop treating you, for avoiding treatment options is to deny hope. In their minds. Recovering from my latest revision, a group of young nurses came to me saying that they didn’t know why I had such good skin for someone my age.
Yes, I know. I should be grateful to experience my age. But I found it funny. I said that I became, many years ago, a chemo junkie. Not at my behest. My oncologist had refused to give up on me. Cisplatin and Adriamycin? Why not high dose Methotrexate and Vincristine? Well, let’s try it all shall we, and anything else thrown in for good measure. I said that I was unsure whether all the chemo had killed the cancer or, simply preserved the rest of me in aspic.
Accepting treatment represents an actual and active means of fighting cancer. Whatever imaginings you may harbour about undergoing treatment, say perhaps that chemotherapy will not work at all or only partially or that the side effects will be intolerable when undertaking it, it will become less daunting. Even if unpleasant, it is a way of doing something about cancer.
Anticipating surgery - whether limb-sparing or amputation, alongside chemotherapy - requires you, the patient, to renounce ownership of your body. I sensed myself becoming sometimes almost childlike once more. Feelings of helplessness and subjugation to a world impinging upon me aroused fantasies and fears of being attacked, mutilated, and deprived of a valuable part of myself and of a protective mother.
I hardly slept the night before my first prosthetic implant. The surgeon was uncertain whether it would be possible as my femur had broken - amputation seemed likely. I passed that night staring at my left foot. Would this be the last time I would see it, experience it, wiggle my toes? The last time I would physically experience myself as whole?
Psychological defences against these passive leanings required for surgical interventions understandably arouse anger and rage. I witnessed it in some of my fellow patients. I heard nurses cry, vexed, about X being such a difficult patient. Try coming to terms with losing your leg or arm. It is not easy. Your life depends upon the skill of your surgeon and the clinical team - all while in a state of almost complete dependence.
My psychological responses solicited guilt and depressive reactions. Surgery felt to me at times like a punishment. Who was punishing me? Why? Existential questioning kept me occupied for a long time afterward.
Surgery inflicts pain. Chemotherapy can also include pain coupled with severe nausea, loss of concentration, and weakness. Indeed, the pain will become as much of a bedfellow as your unwanted emotional responses to it.
How does one navigate this severe discomfort? Here is some advice. Cultivate a relaxed awareness towards pain. Allow yourself to experience it with an open curiosity. Approach discomfort with the open-minded curiosity of a student - as an experiment. That may have some unusual and unexpected results. For me, bringing awareness to pain always mitigated the experience of it.
Treatments for pain can be beneficial as well as problematic. Being undermedicated will leave you in too much pain for rehabilitation; requests for more may lead to accusations of opioid addiction. After I had one of the lobes of my lung removed to excise my metastases, a startling realization hit me.
I managed my pain successfully after a distal femoral replacement by keeping my leg still. Try breathing without moving. And yes, I was apprehended by the ward sister for requesting more relief. "You will become addicted," she scolded. Being overmedicated will leave you sleeping during the day or experiencing absences in thought. Either way, cancer treatments are debilitating. And it inevitably means physical absence too. An absence from school, university, work. Pretty much from everything your former life entailed.
I returned to university after nearly a two-year absence. All my peers had moved on. Then, just before my finals, a scan of my lungs revealed further spread - hence the need for more surgery. Thankfully by then, I had developed a surprisingly strong, if but small, circle of friends. One drove three hours to sit by my bedside, teasing me that I was perhaps going to extreme lengths to get a doctor’s note for my exams. My university department practically shoved my degree certificate into my hands. You will meet kindness like that.
Peer groups when functioning well can help contain anxiety by providing supportive steppingstones into new and expanding horizons. Commonly, adolescence is a time when individuals use their peer group to aid exploration and experimentation with the emerging adult world. Building these networks then becomes a critical task at this age.
Unfortunately, group identities also have a downside, because anxiety, when there is too much of it, can act like a contagion. Certainly, news of your illness will spread faster than you can ever anticipate your cancer doing. It will solicit fears of debilitation, vulnerability and even death, when those around you know that this may not necessarily be the trajectory of your illness.
Self-esteem in adolescence is vulnerable due to the demands placed on children negotiating both changes to their bodies and societal demands of them as they mature towards adulthood. When there is too much anxiety confronting groups, they can quickly become punitive and eject the individual that threatens the group norm.
When I was diagnosed, I lost all my school friends and most of those at university. Thankfully, a handful remained. You are about to undertake a journey from apparent health and vibrancy to perhaps a frail, emaciated and hairless image of your former self. With treatment, your change in appearance is often the harbinger of social anxiety. The spotlight is on you, whether you want it or not.
The task, then, upon receiving the diagnosis, is to ensure some sense of control during this transition - even if it is only of one’s mental faculties. It will take time to settle the mind, to reflect and mourn the sense of safety your former self enjoyed and what has been, inevitably, left behind. Having access to online information will hopefully assist with this.
The next is learning to confront intense feelings and thoughts. Some of these will be fantasies about the treatment, of looking unattractive, being bald, and perhaps even appearing deathly. Learning to tolerate fear is another. When fear arises, it splits the ego into the two aforementioned parts. Terror became a bedfellow of mine. The experience of such a feeling - although understandable to a degree - nonetheless is profoundly unwanted. I sometimes found this to be more so than dealing with the physical suffering the illness presented.
Learning to befriend these states by tolerating your reactions to them is possible. I called it Blue Sky thinking. One observes the feelings as they come and go - as if looking down on the changing weather from above rather than identifying with it from below. All things must pass, including illness and the feelings associated with it. But, you will have to make room for some very BIG feelings, indeed. Rest assured, however. It is possible. When one achieves this, you can reengage with life - and the opportunities it offers.
Most crucially, however, one needs a friend and peer group who can shore up the mind. To help pick up the shattered pieces and to keep the mind orientated toward life. And, of course, mitigate the Achilles heel of sarcomas - the age and developmental tasks of the peer group and its limited capacity to bear this threat without abandoning the patient. As such, this area will be the core business of SAPAfS, which will act as a base whence befrienders and peer networks can connect.
When working with my second oncologist, I had the good fortune of meeting an impressively capable social worker. I asked her to assist me in meeting other people with cancer. I couldn't articulate fully at the time why this was so important to me. Fortunately, she introduced me to her friend, another social worker, who had been living with breast cancer for several years. Also, another young man with a tumour on his spine had made a similar request to her, and our little group was born.
The problem is that those around you will be dealing with their own anxieties and may not be fully available to hear, let alone tolerate, your worst fears and nightmares about the illness, disability, or even death, whether real or imagined. They will be unable to allow these to come fully into the room. Indeed, they may chide you if you express any negative emotion. Perhaps the fear is that these may engulf everyone. Or, that these will somehow magically make your cancer worse instead of better.
Consequently, they may be overly protective and brush your anxiety off with remarks like, "Oh, don’t go there;" "You must stay positive;" or "Keep fighting this;" when all you want to do is close the door and weep. Sometimes, isolated and deflated I would just watch the shadows of an outside tree move on my bedside wall to comfort myself. While wanting to be helpful, those around you can be fearful of tipping the scales from the fight for life into the retreat of death yet act in ways that are not helpful.
Exaggerated positivity is often a failed attempt at protecting everyone from the awful realities the illness generates. Yet, in our little group, these two parts of ourselves - the one remaining engaged with life and the other wishing to withdraw to flee the crime scene, so to speak, to hide and seek protection elsewhere, even through death - were explored openly in the knowledge that these experiences were not only known and understood by us but a part of our everyday reality.
These positive and negative thoughts and feelings are akin to the oscillations of a clock pendulum. Back and forth, back and forth. Hope and despair, wanted and unwanted, pleasure and pain, life and death. Everyone will need to mourn the person you once were - and what is left behind yet remain connected to what you are becoming.
I found it helpful to recognise these ups and downs of my mood as an expression of a necessary function of my mind. I became aware that it enabled each stage of our illnesses to become more and more tolerated and integrated. I could begin to accept that not only did I have an osteosarcoma, but that I could handle the consequences. This process is something a befriender and peers can assist with too.
For the patient, a befriender and peers can be someone to speak to in a way that may be too difficult with family, friends even clinical staff. Befrienders are untethered from the burdens of your relational struggles. Indeed, what you cannot reveal or express to family or friends, whether fearful of hurting or frightening them, can be expressed privately. That can only improve your mood and, as such, motivate you to remain engaged in treatment.
As a substitute for losing friends and being cut off from previous sources of pleasure, befrienders and peers can help you to reconnect to life and its activities. They become a conduit for visualizing a meaningful future, improving self-worth, and feeling excited about oneself again. Following my fractured femur being put into a cast, I left the orthopaedic ward after six weeks in traction. Recovering my mobility and newfound freedom, I travelled with my new companions to a medieval castle that a wealthy industrialist had fully restored a hundred years earlier. One day of magic helped contain many months of pain.
Befrienders and peers can be a storehouse of helpful information on coping skills. For example, when I began to look like someone with cancer - when all my hair had fallen away, and I had lost weight - walking on crutches, I could perceive the waves of anxiety cross the faces of those I once knew on meeting them again. Many shied away when our paths crossed publicly, compounding my isolation. I learned a strategy from one of my companions who advised, “Stop them and say hello by asking how they are. Say, 'I haven’t seen you in ages. How are you?' It gives them permission to enquire after your wellbeing without turning away.” Befrienders and peers can teach such skills.
Unlike the malignancy that threatens to consume all around you when you have cancer, a befriender can be a benign auxiliary ego that can draw you into a state of self-reflection. What is it about that nurse that makes me so angry? Why do I feel so despondent about chemo right now? Why am I avoiding my appointments? A befriender can help you generate a greater understanding of your circumstances, helping you bypass some of the defences that the family, friends, and clinical teams will have as you embark on treatment. For there will be times when they, too, experience feelings of guilt, helplessness, sadness, and anger. Befrienders can help you explore private thoughts you may be entertaining, like why you do not believe you deserve to live.
I cannot definitively say how your experience of cancer will affect you. For me, there was a change in my perception of time. I became increasingly focused on the present than ruminating on the past or future. I have craved less for material things and more for relationships. Other people's sorrows and joys affect me profoundly. I do not shy away from pain. Indeed, if I sense something is awry relationally, I will involve myself, sometimes successfully, others not so. Being able to place one foot in front of another and say, walk the dog in the morning sunshine leaves me with a profound experience of gratitude. Cancer, unbelievably, can have an upside.
Living with the reality of cancer takes you to places where discerning between a telltale type of pain - meaning the cancer has grown or spread - and everyday pain is a remarkably challenging place to occupy. Forgive yourself for being a little hypochondriac. If you let your general practitioner know, I am sure they will understand. My orthopaedic surgeon advised me to do a desk job. I chose to retrain as a psychotherapist. My old social worker, an author herself, gave me a book on setting up self-help groups. I have established two before SAPAfS.
I close with a few words about the consequences of having a physical disability following a sarcoma. It is something of a challenge at times. I needed further operations to replace my femoral prosthetic long after my cancer had gone. I've endured times when prosthetics became loose and still had to find a way of working, training, of supporting a family. Find a way to make room for the intrusion of these things - and to educate those around you as to what your needs are, indeed, what your future needs may be. That can be a challenge at times. Those around you have their own limits. And abandonment can again become an unwanted consequence.
Ultimately, there are two things to keep in mind. Firstly, being diagnosed with sarcoma is a trauma; returning to hospital repeatedly for further revisions can put patients at risk of these experiences becoming post-traumatic. To this day, walking into any medical facility puts my blood pressure up, even an ophthalmologist. Secondly, people have some very odd reactions to disability. Some, overwhelmed by guilt, will insist on doing things for you that you may well be able to achieve yourself. That can be tiresome.
Others, overwhelmed by horrified anxiety, sometimes perceive you as an archetypal monster. That, I have found much worse. For example, I experienced traffic wardens accusing me of using my grandmother’s disability badge when it was my own. I have been accused of being too lazy to climb stairs when I took a lift. Once, a training psychotherapist spitting out her bitterness said, "You can tell evil people because their bodies are out of alignment." That was a big one. Monsters are often portrayed as disfigured, for they mirror, to the beholder, that which is out of alignment within them. It is not about you but rather what you represent. It left me feeling that all the goodness in me was unseen.
Finally, after recovering from my illness, I became preoccupied with God. Some could argue, too much so. Evolutionary scientism seemed to settle the score prior to my falling ill. Now, I was not so sure. Like Job, I needed to know why God targeted me so much. What had I done in my young life to deserve this? I had only ever worked hard at my studies and attempted to be good, whatever that meant. Was God an entity that inflicted pain and suffering or a source of comfort in painful times? I could not be sure.
I mentioned the psychoanalyst Ernest Jones earlier. Freud had a remarkable capacity for formulating a riposte. For example, when the good Dr Jones had secured exit visas for Freud and his family from occupied Vienna, just before the start of World War Two, the Gestapo came to his home and demanded all the money from his safe. Exit tax, they called it. According to Jones, who witnessed the event, Freud calmly opened the safe and exclaimed, "Even I, Freud, did not make so much money from my first house call." What he had to say to Dr Jones about the cancerous bone and the existence of God was this. "If there is a God, my only grievance would be that He had not given me a good enough brain to understand it."Perhaps that has become part of my life’s task.
Yet surprisingly little has been written about cancer by psychoanalysts. Maybe, considering the subject matter, we should not be surprised. They are human too. But what is surprising is that Freud lived with cancer in his jaw for sixteen years. All he said of it was, "I am on an island of pain surrounded by a sea of indifference."
Sarcomas have been around for an awfully long time. Even fossilized dinosaur remains have been found with them. The disease has an uncanny knack for survival too. And so, in my mind, God has had enough time to do something about it. But here we still are.
Where is God? Out there or, in here? After all these years of questioning, I cannot discern whether God is real or exists only in my mind? But I can say I have felt a presence when I was able to participate in life. I felt this even when I was told my life would be short and subsequently, as a long-term survivor. The times I have felt an absence of God, was when my capacity to belong, to participate, was thwarted. To me those moments were akin to an abandonment and solicited feelings of falling into emptiness.
My experience of osteosarcoma was an exclusion from the participation with life. The isolation felt like a relational death - a gatekeeper that had amputated me from a meaningful existence. Perhaps this summarises the raison d’etre of SAPAfS. It offers an opportunity to engage with life once more. And, maybe most importantly, together, we can all make a brain good enough to comprehend its meaning.
Dirk Alexander Geelen
Cob Bits Cottage, McGregor
8th June 2023