The Struggle

by | Jan 31, 2017 | Brain Tumour | 9 comments

The Struggle

Six months on from surgery and my life is still a struggle. I still feel useless, although I do try and make myself useful. I have perhaps 40% use of my left arm, gripping and holding things is the main problem, I still have double vision in my right eye and I am unstable on my feet. I have to pause at the top of the stairs when deciding to descend, I take a deep breath, focus on the first step, and gingerly place one foot on it as I make my move, hoping that I don’t tumble, like a careless fool, down the rest of the stairwell. When I don’t adopt this strategy, that is, I proceed without thinking, I fall, as I did last week. Not a bad fall, but enough to dent my pride. My brain is still in a state of recovery after the trauma it endured.

Over the last few weeks there has been some small improvement with my left arm, there is noticeable improvement in its range of motion. But most of the time it’s in a state of suspended agony, any strain or unexpected movement has me screaming or groaning in pain. My physiotherapists have told me that it may take months to return to normal. The status of my brain is somewhat more subjective; the right side is numb to the touch, my lips and my face feel, to varying degrees, as though I have a case of pins and needles, a result, I’m guessing, of the nerve damage that was inflicted on my brain during the removal of the tumour. Riding my stationary bike is my current salvation, it allows me to escape into a semblance of normalcy and feel fit again. And I can monitor my progress. When I got out of hospital it was an effort to ride for 15 minutes. I now average 45 minutes three or four times a week. My longest effort has been 80 minutes, twice around London, in my virtual cycling world.

My gorgeous, remarkable wife had her first wobbly moment last week, expressing sheer exasperation at this tumour dominating our lives, she keeps telling me that what she wants most is a well husband, that her fervent wish is that I recover fully. For now, we are living with what we have and making the most of it. When exactly full recovery might be is very much open to conjecture. I constantly fight an overwhelming feeling of uselessness, because I am of little day to day practical use; I struggle even to get up off the sofa and make a cup of tea. The walk to the kitchen is fraught with challenges, I am wobbly on my feet, I can’t walk a straight line, it takes all my concentration to navigate a safe path.

We recently went to Vanuatu for a week of R&R. We stayed at a resort, on an island adjacent to the capital Port Vila. It was magnificent. But as I sat on the end of a jetty, taking in the glorious sunset, legs dangling in the water, because I was not supposed to swim, a bit of soaking up the coolness the best alternative, I motioned to get up and couldn’t do it. My left arm was useless, I couldn’t put any weight on it, my head was still fuzzy, and, I was unable to flex my left leg, that would’ve propelled me skywards, so I sat, wondering how I was going to go from sitting down to standing up. I managed to roll onto all fours, it took a few minutes, and from there I raised myself; it was an effort. This problem is an ongoing one, I can’t get up from the floor without its being a considerable effort, an almost major event requiring much planning. The following day I decided to “damn the torpedoes” and, against doctors orders, went for a swim. It was an exhilaratingly successful experiment, a dive, or in my case, a wade and a paddle, into the unknown. I graduated from there to snorkelling, and although I didn’t venture as far as my wife, I went far enough for long enough to feel as though I had broken through.

Travelling to and fro between the mainland and our Vanuatu resort, we had to get a ferry, nothing more than a twenty person boat. Boarding it was a challenge for me, I had to be helped onto the boat by the captain, he was gracious, and off the boat at the other end. It hit home how far I have to go to a full recovery and, though my thinking is still sharp, my physical movements, each one requiring considerable thought and energy, are still limited.

What went through my brain as I stepped onto the boat? Was it merely a feeling of dizziness or a sense that I was not in control? It was both; a dry feeling in my mouth, a momentous occasion, as I observed everyone else treat the exercise as blithely as I would have in the past, I felt at the mercy of forces much more powerful than me, and yet all I was doing was hopping from land to sea. Not a moments hesitation from others and yet it was necessary for me to pause, focus and hesitantly take a step, hoping that the result would be a safe landing and not a water rescue.

A few days ago I had a brief informal appointment with my G.P, who referred me to a physiotherapist nearby who, he said, may be able to help me with my current instability. As we were walking out of his office towards reception we encountered a traffic jam of people, my G.P remarked to me that although I don’t walk exactly in a straight line I did well to avoid colliding with the people that made up the corridor traffic jam and that, in his mind, I am recovering well. I take comfort from that.

He gave me some correspondence to pass onto the physio when I see her. In it were letters from my neurosurgeon to him, one pre-operative and the other post-operative, in which he stated that, firstly, I had a “significant lesion”, a “sizeable tumour”. He stated that there were “considerable risks” involved with this “high risk” surgery but that it was necessary to “de-bulk”, as he put it, the tumour. Surgery, he went on to say, included the risk of stroke, which “could be potentially devastating”, the meaning of which should be self evident. Leaving it would be worse, “progressive neurological difficulty and decline”. He went on to say, in his post-operative note, that he was “delighted to preserve all the vessels and cranial nerves”. My neurosurgeon, my awesome, wonderful neurosurgeon, had a good day. Seeing all this in black white has brought into stark contrast exactly what I have gone through and that there is still much to do. Six weeks of radiation therapy in a couple of weeks for a start.

For all of that and the ongoing recovery, setting aside the feeling of inadequacy, of practical everyday uselessness, (I need to remember my doctor’s advice – that my current “job” is to recover) I know that the surgery has changed me. It has made me, if I’m permitted to say so, a better person; I am more at peace with the world, I laugh more when there is no cause to do so. I actually see the funny side of so many things it feels like the world is a riot. I laugh more because getting away with laughing is one of the best ways I can steal something back from what threatened to steal me.