It’s the first day of a new year and I’m on it. I’m sitting in 39G in a Norwegian airbus, sandwiched between a sleeping husband and a waitress who’s going to ask her boss if she can take a week out every two months to see her boyfriend. She keeps hinting she might quit if he says no. She was chattering away to her man and I could tell she was waiting for him to encourage her to leave. But he didn’t, and now she’s playing bejeweled on her iPhone too quickly, trying to work out what she should do. She has the whole year ahead, and doesn’t know where to start.
But I do. I’m nearly three years into my new life, and I’m more focused, more confident, more alive, than I’ve ever been. Years ago I watched a documentary about posh and bex. David had just failed to bend it like Beckham (check what sin he committed that took England out of the World Cup) and was subject to the full wrath of fickle English fans. The camera followed them into a lux car where posh reminded him: ‘whatever hits you makes you stronger’.
Ah the snobbery of the English. I found myself parroting this line, aping her Essex accent, dismissing it as the sort of cliche we (us truly posher brits) see as simplistic in the extreme.
And yet. And yet I find myself full of energy for whatever lies ahead. I’ve made it this far, and I really wasn’t sure if I would. Posh was right.
I’ve come through a year that saw us bury first my maverick, enticing, deliciously difficult 96 year old mother in law, swiftly followed by the distressing demise and death of my exceptional father.
I’m flying over the Atlantic for the fifth time since this time last year. Each time I’ve watched people I love fall apart. I participated in beautiful, moving ceremonies that sought to express in some small way the contribution of both on earth. I find myself attacked by tears at unintended moments, grief hitting me with no warning. I’m comforted by the logic that points out their longevity. But it doesn’t distract from the loss.
My father was a great communicator. He often spoke in succinct, memorable phrases. When I was a young child, grappling with the growing realization that death comes to us all, he would reassure me by saying that he wasn’t afraid of death. I can hear his voice telling me this. I can see his face when he was saying it – his expression serious but gentle. His eyes unafraid to meet mine. A special expression for his child. It worked.
Last March I stopped all medical treatments for my brain cancer, on the advice of my neuro-oncologist. I’d blasted my body with two years of chemotherapy, immunotherapy, electrotherapy, together with a rich list of supplements, special nutrition, and intermittent fasting.
My MRIs showed ‘no evidence of disease progression’.
I came out of Dr Iwamoto’s office confused. Emotionally, I couldn’t equate being happy with stopping medical treatments. I had spent over two years staring down death, using every weapon I could command. Yet I was being advised to lay down my arms, even if the enemy could resurface at any time.
I could understand the reasoning. Two years of chemotherapy is more than a year in addition to the standard of care for glioblastoma. The immunotherapy I was on is unproven as a mono therapy for my disease, but the hope is that it will leave an indelible impression on my immune system – creating a memory – meaning if it is to have an impact, it would have done so already. As for the electrotherapy… the immunotherapy caused an allergic reaction in my scalp to the gel on the arrays used to stick the Optune arrays on my head. But I was reassured that I had already worn it for longer than the nine months evidenced by research.
I’ve never taken medicine unless absolutely needed, and my MRIs have – to date – been good. But stopping treatments made me feel as if I was being forced to be a passive patient, waiting for a recurrence. Glioblastoma returns because it doesn’t grow as a clearly defined, solid tumor. Rather it spreads tentacles undetectable to the finest MRI and strongest radiation. The blood brain barrier, critical to keeping healthy brains healthy, becomes a foe for those of us with brain cancer, because it inhibits treatments getting through.
What was I to do? It was beyond me, psychologically. My weeble personality was struggling to bounce back up. I tried sticking to my regime of the ketogenic diet and intermittent fasting. I tried enjoying wonderful family holidays. I tried channeling my energies into OurBrainBank. I tried seeking a part time role in the workplace. Nothing worked sufficiently strongly. I went back to see my psychiatrist. We discussed my symptoms and came up with a recipe that combined medication to lift my mood, plus a psychologist to help me work through some of my deep rooted behaviors that weren’t helping, particularly eating too much. I have used food as a way to cope with anything that seeks to swat the weeble in me, my whole life.
Just as these new crutches came to my aid, the deaths of Pam and my father hit.
And just as I sought to manage my grief, my son Felix broke his leg – while motorcycling in Vietnam.
Back to the here and now and the Norwegian airbus. I had five emergency weather alerts for New York when I woke up this morning in Essex. The flight is smooth. The waitress has played bejeweled for the entire flight. I’m clear headed. I’m looking back at a year that saw me gripped in a washing machine that just kept on and on, making me wetter and wetter, then squeezing all the strength out of me, taking away my ability for me to control things. But for now it’s stopped.
I spent new year’s eve watching a rubbish old movie, eating a very English game feast, and sensing the warmth that being with my mother provides.
I have much greater clarity on what I should do in the year ahead. And, in brief, it’s about exercising the core of why I’m where I’m at: the power I have as a patient living with one of the worst cancers that exists.
What I’ve learnt last year is that I’m not as in control of my emotions as I had thought. When I’m able to rest my psyche, my mind can heal and reset and set me once more on the path of determination.
I’m not afraid of death. I had become afraid of life. Now I realize that the language of terminal illness is a barrier. Everyone dies, so life is, by definition, terminal. When I was told I had a terminal disease, what I heard was that my life could end any minute. When I was told medics were working hard on finding a cure, I heard that there was an aspiration that at some time in the future, we may find a way to stop this disease causing death.
What I now know is that, because I feel good today, because I have no evidence of disease today, because I’m happy and loved and loving others today, then today I am cured. Today I am alive, well, and embracing whatever hits me in this new year. I can enter 2019 fired with the knowledge that the skill set I have has served me well so far, and that I want and can and will make better use of who I am to help rid the world of glioblastoma. Because the most powerful people in this story are people like me. Impatient Patients.
The weeble is standing up straight. Here we go.