One year in

A year ago today, Crouching Steven told me I had a brain tumour. It had been four days since the first symptom; a seizure.  Within three weeks a burr-hole biopsy was performed, and radiotherapy began a month after that.  Since then I’ve had 8 months of chemotherapy and will find out soon whether that will continue for 2 or 5 more months.

The week leading up to the seizure is still very clear in my mind. Seeing Beatboxing Geordie Spiderman in the street. Getting a henna tattoo. Really badly dying my hair a disastrous shade of ginger. Going to the gym to swim every day. Working and planning. Driving out to Corbridge and sitting under the bridge watching the Tyne swirl by. In the last year, everything has changed and everything has stayed the same. I’ve not worked, driven, swum or planned since. The disastrous hair is long gone, replaced by new, only slightly disastrous hair. I have seen Beatboxing Geordie Spiderman again though, which is nice.

Henna tattoo

Under the bridge at Corbridge

Such a bad home dye job

The fundamentals and minutiae of life don’t change though. Just as this time last year, the kids need new school shoes, haircuts and dental appointments before going back to school. There have been old friends, new friends and better friends. Love and support, boredom, frustration and fatigue. I’m sorry not to be keeping this blog up to date properly, but I just don’t have the focus to write coherently any more, or even to check in on social media much. I will try and go back and fill in the details of the last few months, but posts will probably have to be little paragraphs rather than my usual screed of blurb.

Generally, I hope I’ve been positive and stoic about this brain tumour malarkey, albeit with a huge side order of moaning, but after nearly a year of treatment, and several months more stretching out in front of me, I’m bored of the whole thing. I want to get back to normal, or at least establish how normal things can ever be again.  To be able to plan things again. To be able to get out of this bloody house and have a holiday. To find out if I’ll ever be able to make a proper living again.  People kindly ask me how I am. I’ve got no idea any more. Probably fine? They all say I look well, probably because now my hair is back, I look the same as ever, and certainly not the mental picture you may have of someone on chemotherapy.

The anniversary has been strange. I had somewhat arbitrarily decided that a poor/middling/good prognosis gave me 10/15/20 years to live, but this was a rolling figure. The notion that a year has passed since the diagnosis suddenly made me realise that that imaginary prognosis is now 9/14/19 years. A year down, and yes that year has been invested wisely in having treatment to prolong my life for as long as possible, but it feels as if it has been wasted on a trudge through side effects, frustration at my limitations and guilt for the effects they have on others.

New friends I’ve made courtesy of our brain tumours continue to inspire and motivate. Some have conquered terrible deficits, re-learning to talk or walk, long outliving prognoses and working tirelessly to help others in similar positions. Sadly, some other brain tumour buddies have declined in health, but none have lost their verve and zest for life.

Time is ticking for all of us. It feels like my life is on pause for now.  I can’t wait to press play again and see what happens.