A Letter To My Brain Tumour: You Are Tiresome & Exasperating

Illustration by Cecilia Castelli
It was on plastic chairs in a faded consultation room that we were first told of your existence. The T-bomb had entered the building and that was that. The consultant repeated the words: "Try not to worry."
I have seen you many times – a white shape on MRI scans. But I admit to underestimating what you were capable of. Naïve as to quite how much you could change my life.
You’ve been prodded and poked with tools, my skull opened while I chatted about fish fingers; the "safe" beige tea I’d chosen to eat before a big operation. You said "no thanks" to surgery, being stubborn and awkward (in and around bits of me that really matter). There were only microscopic amounts of you removed for diagnostic purposes.
Your ill-defined edges mean you were unpredictably difficult; inoperable. You are tiresome, and exasperating – your presence is felt in the way that I walk, the stick that I use, and the (anti-seizure) medications I take daily.
Fears I once held are insignificant now and I am thankful for that. Before, I worried about things I couldn’t control, like losing my job, death, and the expectations of others. It is freeing to live without these fears – I have challenged myself and understand what perspective is now.
The familiarity of work and my career – once my largest focus – have been put on hold due to treatment spanning more than 12 months, and now I have found that I am reinventing myself.
My grip on independence, something I once held tightly, has loosened. I was weak and vulnerable, and had no choice but to accept help.
Previously equal in all senses, I have become "cared for" and the dynamics with my dearest have subtly, but irreversibly, altered. Friendships have been challenged – some are stronger, and others more strained.
I think of our "big trip" to Australia, and the meal we had on my 28th birthday; we chatted to the couple at the table next to us who were celebrating the end of her chemotherapy treatment. She wore a headscarf and their joy was palpable. Although we were strangers, we posed as couples and took photographs of each other, forever capturing that moment in time.
Illustration by Cecilia Castelli
My birthday was like many others, only further away from home. Unable to grasp the prospect or weight of what this means to me now, from the other side of the world, I put it to the back of my mind.
I have celebrated too: after finishing seven weeks of chemoradiotherapy, and then later, when we were told you hadn’t grown.
More rounds have followed, and now we know that there is slightly less of you there.
You have brought my family and friends together. Our stiff upper lips now delicately supple, the L-word casually dropped into chats and messages. Annual amounts of laughs and moist eye contact squeezed into weeks and months.
My body and brain, once taken for granted, are appreciated now. The one I had before could run and dance. Now, it is slower, more unsteady; it is rebuilding itself. It means more.
Those who love me hate the uncertainty you bring. They are angry about the unfairness. And although statistics from doctors have been mooted, everyone is only “hypothetically speaking”. It is too soon to say with any conviction what you may do in the future.
To ask you what your plans are would be to imagine it is all set in stone. So of course, I won’t. I won’t.
Sarah Gaffney-Lang is a Manchester-based operations manager turned writer and lifestyle blogger. Sarah was diagnosed with a brain tumour aged 29, and underwent surgery soon after. Now 31, Sarah has spent the last 18 months undergoing radiotherapy, chemotherapy and rehabilitation treatment. Recent scans (in March 2018) have indicated that the tumour is now ‘stable’, and will be closely monitored. You can find the really important stuff about Sarah, like what she is eating, drinking, and wearing, over on her Instagram.
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