Updated: Mar 18
…is that no matter how familiar one is with the word, it’s a shock no one is ever prepared to hear about themself.
Not many people could have been expecting a cancer diagnosis more than I was; I spent forty-seven years living in its shadows after my parents were told it would be my early demise. I was a three year old with auto-immune ulcerative colitis, the year was 1975. Over the course of my life, this became a story legends are made of instead of a reality that would ever come to pass... until it did.
The latent fear of the word was what led me to into ‘preventative’ surgery, for doctors assured of me if they removed the site of the disease, they would also remove the cancer risk. Various teams of physicians had been pushing me to have the surgery for years due to both the insanely high likelihood of colon cancer, but also the real possibility of my transplanted liver failing due to ongoing auto-immune disease. As time went by, my fear of their warning heeds increased, and began to show up with regularity: on family walks as I trailed behind, transforming momentarily into my ghost; while travelling or visiting friends, believing it might be the last time. The pain of the death thoughts was overwhelming, and even knowing that living with grief about an as-yet unmanifested future was unsustainable, at the time I didn't have the capacity to make it stop. The fear propelling the thoughts was more than a simple matter of it being ‘all in my head'; it was there with good reason, for the seeds had been planted long ago and watered by many authority figures over dozens of years.
Even while the medical world was keen to get me under the scalpel, the surgery remained elective; at the time it was a non-emergency. Because of that, up until a week before the surgery I had my doubts about whether I was doing the right thing, and on more than one occasion convinced myself I could sit back and wait another year. Despite these mixed feelings, I found the decision that left me with most ease. The surgery would remove the fear I’d been living with, the side-effects from the medication and the disease itself.
After eight hours in theatre, the surgeon had good news. Everything had gone well, and there was no visible cancer seen during the operation. A few days later, I was eager to start the physical recovery process and once again, begin anew.
Three weeks post-surgery, I got a call from the hospital. As soon as I heard the voice on the other end of the line, a sick feeling poked at my stomach. I was requested at the hospital the next day, and I’d be receiving a referral letter. Referral letter? Cancer, I thought. I have cancer.
By the next day my deepest fear had come true; the surgeon explained that after sending my organs off for biopsy, they found a lymphoma. I’d be referred to an oncologist and likely need treatment. In a blink of an eye I went from being a person in active and successful recovery, to a cancer patient.
The next four weeks were not easy. The grieving I’d done before the surgery to process losing two more organs paled in comparison to the deep despair of the cancer diagnosis. While carrying on with the physical recovery from major surgery, the mental challenges of not knowing my prognosis or the treatment plan felt like moving slowly through thick fog in an unknown sea. For four weeks I rolled the word around in my head, looked at it from every angle imaginable, and yes, poured salt in the wound by doing the unconscionable: I googled the hell out of it.
For those four weeks, talking about 'it' was largely impossible due to the lack of information. ‘Staying positive’ felt disingenuous, and anytime I allowed myself the opportunity to go into the belief of what was about to unfold, I became overwhelmed. Given all I’d just been through, how could I brave myself for this next serving? Every which way I turned, worst case scenario was looking me in the eye. I was going to die.
Of course, we are all going to die, and the truth is, none of us knows when our time will come. In the immediacy of the aftermath of a cancer diagnosis, the belief was that it was imminent. One year? Five years? Will I die in this bed, under this roof? Who will be by my side?
In those moments, there was no rational mind, no breathing or meditation practice that would remind me of another possibility. There was only a son I would never see graduate from high school, a husband who would go on to remarry, and two parents who would outlive me. Life was condensed into a blip of memories and a fast-forward ending.
Of course, the entirety of those four weeks didn’t pass by only in the hell of my mind. There were beautiful walks, daily yoga practices working-with and observing my incredible body moving though healing, gratitude and deep love. Life was not flat, but the valleys cut deep.
Appointment day with the oncologist was the beacon on the horizon, the point by which all my attention was focused. There was fear and dread, hope and willingness to know what the next weeks and months would look like.
As I entered the Macmillan Cancer Centre four weeks after the diagnosis, my stomach was in knots, my heart raced and I wasn’t sure my body would carry me through its state-of-the-art threshold.
It was a busy place. Do all these people have cancer? Do they all feel like I do?
When my name was finally called, I was relieved to meet a casually dressed older gentleman who was both approachable and very good at explaining, in detail, the findings of the microbiologists.
Because of my medical history, the lymphoma had cause; it wasn’t the type that comes with dumb luck, genetics, or poor lifestyle choices. Instead, it was one that had everything to do with my history. Given the type — an aggressive, high-grade, B-cell non-Hodgkins lymphoma — they could tell it was three to six months old, likely the result of long-term auto-immune disease or the medications I took to help live with the disease. The alternative, but less likely possibly, was that the lymphoma associated with the liver transplant. Given the fact that two of the three causes had been removed, my prognosis, he announced, was quite good. The recent PET scan was negative, so he recommended no treatment for the foreseeable future, for technically there was nothing to treat. A repeat PET scan in four months will be more telling; if there is no regrowth in a few months time, it will be because it was caught early, and the risk of it finding a new place to grow will diminish.
So apparently, I had cancer, and am now in remission. It turns out the surgery was life-saving; if I had waited even a few months, I may be a cancer patient going through chemotherapy right now, with a less sunny prognosis.
The thing about cancer is what we make that word mean, and what the word means about ourself. On the face of it, cancer is just a word, yet is is a word that carries a weight and a stigma – whether it is because you have or had it yourself, lost a loved one because of it, or are someone like me, who has been told it would be my death toll from a young age.
Through this process I have realised that while I had lived a lifetime living alongside the word, the disease itself remained separate. The irony is that when I had it, I was oblivious, and once I knew I had it, it was gone. I never had the time to get to know or understand it; only the fear of the not-knowing.
Abraham Lincoln said, “I do not like that man; I must get to know him better.” It is always in the not-knowing that fear and hatred arise, so my work now is in understanding and getting to know cancer. Whether it returns or not, it will never again be separate from myself, but a part of me, a part of my history.
In a similar vein, Richard Schwartz says there are no bad parts of us, they are all there for a reason and serve a purpose. In my case, cancer came as an adaptation, whether it was to long-term disease or medication. Knowing this, it is difficult to hate it, to blame it. My cells were doing the best they could in a less than perfect situation.
The thing about cancer is the thing about life: we are all doing the best we can, there is only 'perfect' in the imperfections, and we never know how it's all gonna go. The question we are all left with about life, is best sung by Lenny Kravitz: "Are you gonna go my way?"
I was born long ago I am the chosen, I'm the one I have come to save the day And I won't leave until I'm done So that's why you've got to try You got to breath and have some fun Though I'm not paid, I play this game And I won't stop until I'm done But what I really want to know is Are you gonna go my way? And I got to, got to know I don't know why we always cry This we must leave and get undone We must engage and rearrange And turn this planet back to one So tell me why we got to die And kill each other one by one We've got to hug and rub-a-dub We've got to dance and be in love Are you gonna go my way?