I heard once that you can break your knowledge into three categories.
There’s what you know.
There’s what you know you don’t know, and..... what you don’t know know, you don’t know.
My cancer diagnosis now meant that I was firmly in a place of discovering a pile of things I didn’t know that I didn’t know.
I previously had the tiniest of understandings about neurosurgery, oncology, and about hospitals.
I had had a couple of relatively minor operations, had brushes with cancer and had heard about Charlie Teo, but that was pretty much the extent of my knowledge about those things.
I definitely had only a minuscule amount of knowledge about brain tumours, brain surgery and cancer.
A results clinic was something I had never experienced and had no clue was even a thing. Apparently, after every few weeks of procedures, brain surgery patients are collected in a room to learn the results of their operation. Its more than that though. They are also coming face to face with the directions that their lives will take from that point on. A results clinic is kind of a big deal.
The “burden” of having a last name that starts with one of the last letters of the alphabet, was never more apparent. One by one, families and patients got up and disappeared behind a door. The patients, whose heads were variously invaded and scarred, were called out of the large waiting room, for about 40 minutes or so.
It seems wrong that a mere 40 minutes could be the context for a conversation that had such huge consequences.
We sat in that waiting room, watching the interactions of the others before me. The families emerged later, most leaning on each other, grey and pounded. Their faces were tightened and contorted. Their eyes were barely seeing as they guided each other out, hinting at the conversation they’d just had with the men who touched brains.
My thirty eight staples were removed from the arc above my right ear, and I returned to the waiting room.
Eventually my name was called.
There were six men in white coats across a table in front of my wife and I. We were squeezed into a room that was too small and entirely inappropriate for finding out the future trajectory of a life.
We sat, and they pulled out files.
The meeting was short. They felt that they had got all of the peach sized tumour. They had a quick look at the state of the wound and the holes that the removal of the staples had left, and admired how well I had healed.
From that point on, almost every question was met with...”your oncologist will answer that”.
I knew almost nothing about oncologists, except that they had something to do with cancer, and that they were definitely not high on my list of professionals to need.
I now know that after a brain operation, you can’t fly until scans show that the air that can enter your head during the surgery has dissipated. I was in Perth (on the other side of the country for almost a month) until it was safe to travel.
Getting back to my home I learned that you can’t drive a car for six months after brain surgery.
I also learned that I was highly likely to have a fit.
In the following months I also learned just how far people I loved would go to help, because of those things.
I very clearly learned that there were many people everyday, who were moving through different versions of this, and that many others situations were many times worse than mine.
I discovered that I wouldn’t swap my life for anyone’s and how much I loved my life.
I discovered my friends in a new way when things got bad. They morphed into something that had the flavour of their pasts with me, but with a light that shone brightly from behind that. I was driven everywhere, whenever I needed. I was watched by a flock of hawkeyed carers, to make sure I didn’t have a fit (or hit my head) whenever I surfed (way before I should have) and..the ultimate offer, made before I was allowed to fly...the friend who offered to drive across the country to collect my wife and I and drive us back. (knowing him, I truly believe it was an option).
I have always loved my community and had always known the value of keeping towns small and more intimate. Nothing validated that opinion more than my cancer diagnosis.
Navigating getting to work, to scans, treatments and appointments was handled effortlessly and with sensitivity and care. I was torn between the seriousness of the situation and the magnificence of my people.
I now know just how pervasive our fear of death is, and I know now how as a society, how poorly we deal with it.
I also learned that a cancer diagnosis (along with other major life events) changes relationships. There are some I was close to who disappeared, unable to deal with the possibilities of my cancer. Many of the strategies that humans use to avoid pain, discomfort and the “dreaded” death conversations, became very clear. Some people even crossed the road, or carefully went up a different aisle at the local supermarket.
I bare no ill will for them. I completely understand. I had felt the discomfort of not knowing what to say to someone facing cancer, and I know many who had disappeared had seen others walk that path only a few years before.
I know that the way I treat people with cancer is different now.
I go straight to them and I ask, “how are you travelling?”.....and then listen.
If I’m not up to that, I say, “I heard you were unwell, let me know if you need anything”.
I know how important being acknowledged is. It’s a fundamental desire of well people, and a gift to the sick.
I know that the cancer care people in my region are wonderful, as is my doctor, and the magnificent nurses I met in general, and in oncology. I can’t say enough about them. They rock.
Interestingly, I’m now drawn to people who have cancer, or people who are in a wheelchair, or who are clearly dealing with a hand that is challenging. The difference it can make to them, (and me) is magnificent.
It’s the small things...
I had simply signed a piece of paper.
No big deal.
It was a petition and it was a year or so before I collapsed.
It was to have a new melanoma drug put on the Pharmaceutical Benefits Scheme.
It turns out that it was a breakthrough in melanoma treatment and it was having good results. The treatments were almost prohibitively expensive.
I’ve had opinions about our medical system. While I know it’s not perfect, I’m gentler and more sparing with my criticisms. I am now endlessly grateful to my government for my experience of our medicare system.
Scans, brain surgery and treatments were paid for by our taxes, and for that, I want to say thank you from the bottom of my heart for your contributions of your hard earned tax dollars. I am alive and writing this because you did (In many other countries I would probably be dead and my family bankrupt).
My three weekly trip to the oncology ward at the local hospital (to take the now free drug) showed me a world I had never known existed and information I had never even considered.
There were the blood tests prior to each treatment.
I discovered that blood can behave differently when you have cancer in your system.
I learned how firmly you have to push to get a needle through your skin. I had the “joy” of injecting myself twice a day with a blood thinner to break up the clots in my lungs. This was made more enjoyable by doing it in front of my squeamish friends (I’m a child).
I learned that not all doctors and nurses can get a cannula into your veins painlessly. I learned that you can’t puncture veins endlessly, and that the more they are punctured they harder they can be to puncture.
I learned I’m not a big fan of the side effects of radiation, and I’ve learned that my jokes now have a “darker” flavour, and are not to everyone’s taste.
Having said that, I now know that most things are now very funny, particularly the tiny and ridiculous concerns I had about many things in the past.
I learned how to superficially read scans, and watched, through tears in my eyes, the tumours in my lungs diminish and finally die.
There are still many things I don’t know.
I don’t know how many tears have been shed in the stairwell of my oncologists office, but I do know how many were mine.
The visits to the chemo ward were eye opening and transformational.
I re-learned something that was already in the column marked ‘what you know you know”.
While I thought I knew it, I realised that I actually didn’t really know it before. It had been a trite and shallow “knowing” that wasn’t truly understood.
Really sick people and children can give you the most incredible insights, if you listen, and I mean, REALLY listen. They can have a perspective that has had all the bullshit completely pared away.
In the two and a half years of treatments, I never once heard someone in the chemo ward say that they wished they’d worked more. I never heard someone say they wished their peers had envied the car they drove, or that they had a better TV....And I definitely NEVER heard one person say they wished they had worried more.
They had, however, wished they had spent more time with loved ones (and told them they loved them). They wished they’d let petty grievances go, wished they’d worked less, and absolutely wished they had played more.
Those people, and my cancer, showed me something wonderful that I didn’t know that I didn’t know.
I didn’t actually know how to really, truly live.
From sitting in that room with those people, the sick ones and the carers, I was given a life changing choice.
Suffer or live.
I chose to experience my cancer ride (as much as possible) with my head up and eyes wide open, milking each moment dry.
I chose to watch intently my own fear and concerns, and enjoy the gift of being able to feel even them.
I chose to look into the eyes of people I love, and deeply savour as many of the flavours of life as I possibly could...even the crappy ones, until I was either well, and free of cancer, or, my eyes finally shut.
