Turning Lemons into Lemonade
written for the May 2017 Brain Tumour Alliance Australia magazine
My brain it got all muddled
invaded by this thing
I had no equilibrium, I had no song to sing
I could live I thought, or I could die, or maybe I’d just fade
So I got up and grabbed some lemons
and made some lemonade
I was diagnosed with a brain tumour in late June of 2016. My wife reacted by saying “our life is going to change.” Without knowing the seriousness of it she knew one thing, that our life would be forever different to the one we had, and would, to an extent, be defined by this invasion of our world. The tumour was compressing my brain stem, and traversing through cranial nerves and three major arteries. I was suffering severe vertigo and I had to stop driving, I had to put a hold on riding my bicycle on the road and the pressure in my head made everything feel heavy, laboured, hard. Day to day decisions were made against the backdrop of getting through.
Just prior to my diagnosis, when out for what I thought was a routine bike ride, I started to feel as though I might not stay on my bike. I was suffering severe vertigo, not the type of vertigo that makes for an annoying few minutes while you regain your balance but the sort that sends a shiver down your spine. I dismounted and turned the bike around, towards home. I should have immediately hailed a cab but foolishly, I decided to ride home. How I made it I do not know, without knowing that I had a brain tumour, it had well and truly taken over. I told my wife what had happened, she suggested that riding on the road be off my agenda, that I buy a stationary trainer as a substitute for riding on the road until I sorted out what was wrong.
I was booked in for surgery to remove the tumour, a Petroclival Meningioma that was crushing my brain stem, three weeks after the initial consultation with my neurosurgeon, a short turn around but long enough for me to consider the consequences. I chose not to dwell on them because it would have been self defeating to do so, I chose instead to trust fully my surgeon and the medical care we have in this country. I had a God moment the night prior to surgery, after my surgeon came to my room to say hello, to see how I was. He told me that he prays for wisdom before he operates. I had a peace about the whole thing that I did not understand. My spirit was calmed by his humility. From then on I was ready.
I awoke the morning following surgery, in the ICU ward, after a 15 hour operation, barely cognisant of anything. I had no movement down the left side of my body, I couldn’t even wiggle my toes. My right eye had been forced shut from the trauma of surgery and I had an eight inch long scar down the side and along the top of my head.
I spent a total of eight weeks in hospital, where I learnt to walk again, to string a sentence together, and to get to a point where I could see light at the end of the tunnel. I had lost 12 kilograms in weight in a very short period, most of it muscle mass. I put that down, primarily, to being fed through a tube for a couple of weeks following surgery. My legs were like matchsticks, I couldn’t put any force through my left leg, let alone ride a bike. My entire left side was numb, useless to the point of complete immobility.
Three weeks at North Shore was followed by a further five weeks in a rehabilitation facility. I tried to discharge myself the day I arrived, a somewhat futile exercise in itself, I couldn’t walk. The new environment threatened me, a doctor arrived to prevent me from leaving. He offered a degree of comfort and at the same time a dose of reality, I was in denial about my condition. I came to like and appreciate this doctor, he understood the state of play, he showed the empathy and support that enabled me to eventually get out of there.
Whilst there I was described, by more than one specialist, as “damaged and disabled”. I dealt with that confronting description by pushing harder the physiotherapists to get me back to walking. I decided that I couldn’t afford to accept as reality that terminology, even though, at that point, I couldn’t walk, confined to a wheelchair and being showered by my wife and my nurses. My left arm was lifeless, hanging flaccidly by my side, good for nothing, mournful in its countenance. Doctors and nurses would direct questions to my wife rather than to me because they knew I couldn’t answer, it frustrated me, it made me angry, not at them but at the situation as it was. She would leave the room when friends came to visit because, apart from taking the opportunity to get some respite, she wanted both my friends and me to have the visit stand on its own merits, for me to work, to find a way to communicate what was going on in my world without her doing everything for me.
My speech, when it came, was laboured, I was sapped of energy in trying to express myself, and I found the words of encouragement from others patronising when of course they were anything but. It was hard. I told myself that being called damaged and disabled, words that can come so easily, from experts and lay people alike, were merely part of the recovery process, tests of character along the way. I saw myself as a fighter, even though there were days when I wanted to mentally “check out”.
My wife took many photos and much video footage of my trying to walk, the early stages, the progress, the victories, if only to capture a record of my actually moving, a glimmer of hope amidst the confusion. I still watch some of that early footage, it provides me encouragement, it tells me how far I’ve come. It makes me realise that even though there are discouraging moments, periods and days, never giving in to the voices that want to make you “check out” can make the effort to not give in worth while. I was encouraged beyond words by the visits of friends, my brothers, reconnecting with them, other patients who were fighting their own battles, by their mere presence, by their odd few words of encouragement, by the look in their eyes and by the way they never let themselves be betrayed by what was on the surface.
My wife’s mantra became “Whatever it Takes” whereas my overwhelming response was “Leave me Alone”. I had to filter out her obvious desire to get me to the next stage of my recovery and temper it with my own inner voice that cried out for some peace and quiet from the noises and information coming at me and the understandable imploring of those who love me. I had to find a way to motivate myself and dig in. It took some time but it eventually came, as a result of small steps being made and from an overwhelming desire to go home. The irony of saying, each and every day, from a week after surgery onwards, “that I’m ready to go home now” did not escape me. It took some time for me to realise that whilst I am the master of my own destiny, there are others who have not only my best interests at heart but also the knowledge and expertise to enable me to get there.
By the time I left rehab I was able to ride the stationary gym bike for 10 minutes. I told my wife that my goal was to be back on my bike, on the road, by the end of the year, a goal I now know, to be wildly optimistic. I was still 68 kgs, as opposed to my normal 80 kgs but I felt at least I would be able to make use of my bike when I got home.
Upon returning home from hospital, I made my first tentative foray on my bike. I managed a gentle fifteen minutes. It was, at that point, all my legs would allow. For the first two weeks, fifteen minutes on the trainer became a badge of honour, at least I was able to ride. My preferred riding destination became a loop around a virtual London, or in my case, in those early stages, a stretch of road in London. In the subsequent months since surgery I have graduated to three or four times weekly rides of forty minutes, sometimes over an hour, my longest ride being ninety minutes a couple of weeks ago. Being on the bike provides a balance and stability that I don’t have whilst walking, it liberates my spirit and helps to make me feel normal again.
My course of radiotherapy, originally set for six weeks of daily treatment, was reduced to a single treatment, when my oncologist rang me with the good news that my radiotherapy could be delivered in a single hit, as the remaining small amount of tumour was not impinging my optic nerves. There are always snippets of good news to hang onto, to celebrate. My double vision, although still, for the moment with me, is now alleviated by prescription glasses, my left arm is still not working at full strength, it gets regular pins and needles and numbness and my balance has still not returned. I still have to pause at the top of the stairs, and focus on the descent. This is my new current reality but I revel in learning new things about myself, about how to adapt to my new life.
I still have a long road to recovery but it’s not all uphill. I’ve been through the worst of it. I have been fortunate, to not only have an outstanding surgeon, a magnificent G.P. who covers all the bases, and loyal support team but to have been able to get on my bike and realise that not all dreams have to be jettisoned. All of these things have helped me stay motivated.
In a comical ironic twist, I feel as though surgery to remove my brain tumour has made me a better person. Rather than become angry and despondent, I have become grateful for the things right in front of me. They’re gifts. I smile and I laugh more often. I celebrate little things, pausing and giving thanks that, even though many things are harder, I can do them at all. Our lives have indeed changed but whilst the past year has been undeniably hard, it has also been unquestionably good. We’ve managed to turn lemons into lemonade.
Left: One week after surgery (late July 2016). Right: 8 months later (early April 2017).