My cancer ride was, in many ways, one of the most incredible experiences I’ve had. I feel as though I have seen the beginning of everything, watched the birth of stars and creation of atoms (I couldn’t have possibly ever imagined saying that before), and yet now I am in the world of the “solid”.
I am “here”, alive and conscious, and now, have to deal with the real world.
I have to manage all the usual stuff - bills, relationships, kids and mortgage.
Added to managing those things, there is the residue of the cancer and associated experiences.
The cancer journey is often long and is a roller coaster of emotions, navigating relationships, and medical processes. It’s not a sprint, and I would imagine that it generally takes longer to recover from a marathon than a sprint. (Having never run a marathon, and depending on how long the sprint was!).
Having cancer caused me to have a completely different way of looking at the world and my experience of life, and entirely different ways of dealing with it.
One of the processes I used to get through was a BIG AF choice I made.
I chose to play a game with my cancer.
That game was called, “happy to stay, happy to go”.
It’s not for the feint hearted, and it requires some mental resolve. In that game though, there is less to fear and few expectations to pin hopes onto. And, a huge amount of peace as a result.
It allowed me to live almost completely in the present.
For the most part, I thought that I was mentally tough and played the game well, even through the challenges of the radiation “phase” of my treatments.
There were some places that I faltered though.
I called those moments the “death wobbles”. Billycart heroes and skateboarders will know the term.
The death wobbles were the moments where fear or some sadness kicked in and I had to rely on some mental health strategies.
Breaking routines seemed to work well most of the time. Stepping out and doing something different and a tad off beat were favourites. Going for a paddle around a local lake in the full moon on a stand up paddle board was one (I tried one at night in the ocean. Definitely not for those with a shark phobia). Aerobic exercise was another strategy, and was also helpful in having my lungs recover from inflammation from the radiation.
Like the death wobbles on a billycart, there is the moment of fear when you lose control, followed by a brief moment of the illusion of control, then fear, then control, fear, control, until you either find yourself relatively intact and pointing in the right direction, or ploughing into the depths of the Lantana thicket (and shredded) at the bottom of the “Dairy Hill”.
For me it was similar; fear, then management, then fear, etc until I found some equilibrium.
Sometimes that process took seconds and other times, a day or two.
I was genuinely surprised at how well I managed all that, and then something happened. I felt I managed really well until I heard the words from my oncologist...”Mark,...It looks as though you have had a complete response”.
You may want to re-read that.
I managed well, UNTIL I heard the words that many cancer patients want to hear more than anything. Apparently my brain was clear, and the tumours in my lungs were “inactive”. In the past, stage 4 metastatic melanoma in brains and lungs, was pretty much a death sentence. This news was probably very unexpected, and many of my friends have certainly expressed that, but, it signalled a shift in my thinking.
My life with this better prognosis was harder in some ways to manage. You would assume that news like that would have me be indescribably grateful, and see me skipping off into the sunset, living happily ever after. There definitely was some of that, and at the same time, there were some unexpected experiences as well.
Survival guilt is real. So many wonderful people have died from cancer.
Why me? Why do I get to stay and others don’t?
I know there is no satisfactory answer to that, but at the same time I can’t help asking that occasionally. It just wasn’t my time. That though, doesn’t diminish my compassion and empathy for those who have suffered and those who are left. (I’m left with no more words on this, but instead, a profound feeling of connection to all. We are all touched in some ways by cancer).
Cancer is not far away once you have had it.
Playing happy to go, and happy to stay, is harder to play when the cancer is gone. I found myself much happier with the idea of staying, and as a result my fears started to return.
There is a tendency to want to put the whole thing in the past, and move on...... Except, you don’t. It’s there in the background, and yet, now you are attached to living a long and healthy life (its amazing how quickly this happened for me).
There are now longer periods between scans and results, and you almost forget. Then a few days before, when you see how attached you are to the outcome of the scan, it all comes rushing back.
The is another layer to the challenge of negotiating the good results that is difficult to define, so its’ hard to know where to start.
Here goes.
Firstly there is the turmoil of being fairly sure who you are for about 53 years, then having that story smeared by the behaviour and thought altering effects of a brain tumour.
Then there is the coming to terms with the reality of death, and forming another identity around that, and cancer, in order to deal with those possibilities.
Then, there is the identity that’s spat out at the end of it all.
I can only speak for myself but the last part of all of those alterations has been the most challenging psychologically.
Who the hell am I? I’m really not sure exactly anymore.
I’m now left with a “me” that has been pushed and pulled, corners knocked off, and even a few new facets added. Many of the bits of the “new me” that I can see, seem to be contradictions .
There is a big part of me now that is smaller and more vulnerable than I have felt for a long time, and yet I know myself now to be so much stronger and greater than I could have imagined.
Many long held opinions of myself are largely gone, or seen as insubstantial, which is a double edged sword in some ways.
While it’s disconcerting to be unable to pin down who you are, at the same time it can be incredibly liberating.
The truth be told, I think I navigated my cancer journey well, because I lost my attachment to my identity. I became free of “me”. It was useful to have no real identity and a diminished ego. There seemed to be no “one” to protect and so there was no one to suffer.
Before I go any further, psychology is definitely an area in which I’m very clear that I know very little about, so forgive my fumbling to find my way through this (it’s useful to me though, and I’m sure I’m not so unique that others haven’t gone through something similar, particularly now that there have been some major breakthroughs in cancer treatments. Thanks science).
It’s hard to know how much of this new state is down to my brain being interfered with, and how much is due to an “awakening” triggered by facing my greatest fear, and death.
When the doctor gave me the good news, I felt and saw old identities try to re-establish themselves, and new ones germinate.
There was “survivor”, “tough bastard”, “softer” and others. Most of them are not bad, but it seems to me that I picked them up. Perhaps I can put them down too. Maybe ego and identities are merely tools, created primarily for survival.
Perhaps a tool is only useful if you can put it down when you are finished with it.
Perhaps a hammer is a liability if you can’t take it out of your hand. It’s definitely not useful for sewing.
This new part of my life, post cancer, revolves around me learning to be able to use the aspects of my identity when they’re needed, and to put them down when they’re not.
It’s clear to me that most of my thoughts, positive and negative, relate directly to my identity.
The gift of my cancer is that I can now usually see them from the outside, and that they are no longer in the background running the show.
I’m guessing that others have had similar experiences?
While I have learned a lot about myself from my cancer journey, paradoxically I know a lot less about everything else.
Most of my opinions are now gone. They are insubstantial and in defendable. Many of the ones that remain, I can’t be arsed defending.
All of this blurb so far relates mostly to whats gone on in MY head, but of course there are other participants.
Another thing entirely is what goes on for loved ones.
My family was shaken up and thrown into a world of turmoil which is something that still saddens me. The tumours took their reasonably solid dad away, firstly with my increasingly crazy behaviour before the traumatic way they were found, and secondly they lost “dad time” as the focus was on treating my illness.
It pulled aspects of my family together, and pushed wedges in there as well. (We are a gloriously chaotic work in progress).
I’m still getting my head around what’s happened to me before, during, and since, and there is a lot I have no idea about.
One thing I am deadly sure about now is the absolute beauty of kindness.
I’m now crystal clear that we are here to play (enjoy the gift of life), and to be kind to one another, and the planet.
So before I sign off I’d like to suggest something.
Every cancer patient is helping build a deeper understanding of treatments and behaviours of cancer, and as such, is contributing to healing those that follow. Given that cancer will affect many of us, take as much time as you can to be kind to cancer people.
Their illness may save your life.
