Five years in recovery – who would have thought it? I have days where it feels a life time has passed since I walked out of Charing Cross Hospital and into my new life, and yet other days where I still cannot understand how, at the age of thirty five, my life would change so drastically in the space of a week.
It’s true to say that my life had become a wretched imitation of itself long before the tumour hit that rainy summer of 2007; I had spent most of that year in excruciating pain, unable to walk without support and beset by violent headaches that left me in bed for all but a few hours each day. And yet, while everyone else was hoping for an end to the torrential rain that plagued us that summer, I was praying for an end to the merry-go-round of appointments, blood tests and quacks who all had a theory why I was falling so catastrophically ill.
Maybe this is a false memory, but I think I knew long before my arrival at the hospital that I was going to be told I had a tumour; yet even if I did, nothing could have prepared me for the shock news that I was about to have life-saving brain surgery. But at least I had an answer.
I had staggered into hospital that morning half expecting a small bag of pills, but I found myself being told that I could die in a matter of hours if the surgery was not performed, and even then there was a good chance that I could be left brain damaged or, slightly less worrying, dead.
I remember the moment the tumour first made itself known: one Saturday afternoon I had decided to go into Soho to buy new trainers. With Matthew out of town, it was the ideal weather for me to walk into the city. It was at about half-way mark that I noticed that I was stumbling, shuffling, unable to feel my feet as I placed them on the pavement. At first this sensation didn’t worry me, in fact I lived with it for months, hoping that an old lower back injury was causing a temporary loss of feeling in my limbs. If anyone asked, it was fatigue that was causing it. End of.
If the loss of feeling in my legs was not enough, about three months later I had my first really violent headache. Quite unexpectedly a small aura appeared in my field of vision: a transparent patch of undulating interference that felt like someone pouring the contents of a kaleidoscope into my brain. Truth be told, I had been seeing visual auras around things for years, bright lights often brought them on, but I put this down to an over-active imagination and being utterly driven to control every aspect of my life. I later learned that these auras indicated yet another violent headache was imminent and that, without delay, I must get home and get somewhere safe where I could wait out the pain that was about to hit.
I’ve never been a migraine sufferer, let alone had any period of prolonged headache, so the ferocity of these attacks left me utterly immobile. My visual disturbances grew larger, changing from a blob of colour to covering almost all of my vision, leaving just enough transparency for me to see my way home. The stiffness in my neck and the numbness in my legs made it hard to walk, and the sensation in my ears and head made it feel like I was repeatedly standing up too fast.
It didn’t come as a shock to anyone that morning that they had found the tumour, in fact I think there was a lot of relief that finally we had a reason. As Matthew called our loved ones and places of work, all I could do was wait to be taken into surgery.
As I was moved from ward to ward that day in Charing Cross Hospital and given big scary talks by surgeons whose voices I couldn’t make out over the neural feedback from my passenger, my brain finally gave up, closed down and refused to record any further incoming information.
I have some memories of waking up the next morning and a few glimpses of the days I spent in intensive care but this is all they will ever be: a knowing that something happened, but never anything concrete, no matter how many times I play them back in my mind.
At some point in the next two months my brain started to receive signals again, not much, but enough to record something for me to look over in the coming years. Everything up to 2006 is there, but I have a void filled with disjointed memories up to early 2008. Sometimes I can pick at these and make them grow, but most of the time I can’t capture them long enough to examine them. It’s a small price to pay, really.
Over the past five years of recovery, I have pushed my short term memory beyond the two minutes that it had been reduced to, I’ve battled with the fatigue to the point where I can kick it into touch with a good nine-hour cycle, but the one piece of the jigsaw that I have never found is the essence of me: who am I?
Ten years ago I used to be such a social creature, always had something to say, always out getting myself into some trouble or other; but then I started to become afraid. I excluded myself from the things I loved and turned what little energy I had inwards and started controlling every aspect of my life, often tearing it apart. Little did I know that this sudden change in character was something more sinister than just the cynicism that comes with age and an endless desire to work myself into an early grave.
The descent into agoraphobia was sudden and shocking to those people who knew me; the bouts of self doubt and anger made it unpalatable for people to be around me and my need to lash out and blame anyone was difficult for all but those foolish enough to stay close. My world became a five mile radius around the house and social interaction was difficult, unless it was prefixed with a binge of drinks and antidepressants.
I was fortunate that the one person who was strong enough to accept everything, to get close enough to see beyond this is now the guy I proudly call my husband, without whom I would have never found the strength to get to the hospital that ill fated day. The guy who carried me into the neurosurgery unit and held my hand as they wheeled me into the theatre.
Surviving the surgery is only part a small part of this journey, the recovery is the much larger step that people like me have to make. Imagine waking up every day and not remembering why you are suddenly sporting this new scar on your head, why you can’t remember what has happened a few minutes before, and the endless need to blame yourself for falling ill. It was difficult.
Recovering from something you have no memory of has to be one of the most thankless tasks I could ever imagine. How could I gauge how good my progress was if I couldn’t remember anything that had happened the day before? It was the most painful and arduous process I think any one of us could ever face. I wanted so much to be back in my life, I wanted to be part of the conversations around me but my inability to connect to even the most fleeting of conversations was frustrating. I used to be so independent, and to my horror I had woken up to find myself being monitored almost 24-7 and unable to leave the house without there being someone with me.
I was very lucky that, two weeks after coming home from hospital, I made a decision that no one should ever have the feeling that they are alone after this kind of surgery and people like me should come together and form a community. Five years later my CC family has grown to almost five hundred of us, sharing, experiencing, documenting, exchanging, crying and working out how to negotiate those first few steps of our new lives.
Today I have two images of myself, the gregarious Peer and the agoraphobic Peer, and in the middle lies a no-man’s land of lost memories that connect the two. I often explain the feeling is akin to the anticipation of someone coming home, but not knowing exactly knowing who it is.
I lived with this feeling these first five years of my recovery, I grieved for person who I thought I’d lost but I am finding the strength to let that go. I’ve come to terms with the wonky hairline and the crazy patterns in my left eye and I am learning to love the person I have become, he’s a great guy: big hearted, eager to share, and yes maybe sometimes he is lacking a little confidence, but that is a very minor price to pay.
Last spring I was so lucky to join an amazing group of people who are as caring about their colleagues as they are passionate about the work they do, and from the moment I joined the team my little hang ups and difficulties have never been questioned. This is something that counts when there are days when you struggle to find not only yourself but your voice too.
I feel exceptionally blessed these last few years: it has been a difficult journey to travel and I am not sure when it will be complete, but the love and support that I am shown has helped me grow into the person I feel I am becoming, even if this person is not quite the person I recognise as myself.
- Read Matthew’s blog about my illness on his blog, matthewbutt.com
- Visit the Colloid Cyst survivors forum on Facebook (approval needed to read the content)