I always used to be quite a negative person, forever stuck in a rut.
It amazes me now how downbeat I once was, always seeing the bad in everything and complaining about my lot in life. It’s ironic, then, that it’s taken an ‘incurable’ brain tumour for me to change my outlook on life. It might sound strange, but my struggle with cancer has actually given me an inner strength I never knew I had, a strong voice I’d never articulated before.
And I now realise how valuable my life is. I appreciate the little things, I don’t take anything for granted, and I am grateful. Which is why I am determined to prolong this life I cherish, despite the odds seemingly being stacked against me, determined to find a ‘cure’ where the NHS tells me there isn’t one.
My story began in April 2016 when, while getting ready for work, I started having a seizure. I’d been having bad headaches for six months or so, but didn’t really think anything of it. During the seizure I remember looking in the mirror, seeing my head jerking violently, but not being able to say anything as my jaw had locked up.
As scary as the seizure was, I still went to work that day, and didn’t even see my GP until a week later. About a month passed and I had an MRI scan at Croydon University Hospital, all the time thinking I was being silly. I remember asking one doctor, “Is this really necessary? I feel like I’m wasting everyone’s time. I’m sure I’m fine…”
But I wasn’t fine. A day after the scan I got an urgent phone call summoning me back to the hospital.
I remember looking at the scans, quite matter-of-factly, and seeing a large shadow in my brain that shouldn’t be there. And then I had to start thinking about how I was going to get this thing out of me.
My first hurdle was trying to control my seizures in order for the surgery to go ahead – the surgeon couldn’t have me jolting around on the operating table. But that’s easier said than done when my grief kept triggering my fits. As a coping mechanism, I even named my tumour ‘Tina’ in a bid to try and normalise the situation.
Yet I knew, deep down, that I wasn’t mentally ready for surgery. I didn’t know how to prepare myself, and the gravity of my situation took a long time to sink in.
Eventually, I underwent an operation to remove the growth at St George’s Hospital, Tooting, in March this year – while awake throughout, so that the surgeon could ensure that I could still move my arms and legs while he cut around such sensitive brain tissue. It’s strange to think that I even texted my nan during the op, while asking, “Can I move my head yet?”
Yet it’s fair to say the surgery was not a success – specialists managed to remove 80% of the tumour, but within three months, it had regrown to its original size.
I cannot have surgery again – it’s too risky. And so, I’m seemingly left with one option and one option only – to undergo chemotherapy and radiotherapy on the NHS to try and prolong my life.
“What about alternative treatments?” I asked, “What about proton beam therapy?”, which I knew can be an effective way to treat head and neck tumours.
“No,”, I was told, “This is the only path for you.”
I don’t accept that conclusion and I will not go down that road. I worry about the harmful side effects of chemo and traditional radiotherapy. And if I’m to die, I want the tumour to kill me rather than the treatment.
But not everyone can get funding for proton beam therapy (PBT) – a unique, less harmful form of radiotherapy which can shrink tumours while pinpointing the growth with better precision – and I’ve been denied access to it on the NHS. The NHS only approves a select number of people each year, around 200, mainly children, and there’s no NHS proton beam facility yet operational in the UK, so patients are sent abroad.
It’s now up to me to find the £60,000 I need to fund my PBT treatment at the Proton Beam Therapy Center in Prague, Czech Republic, through a crowdfunding venture.
And while scientific opinion is clearly divided on the subject, I’m also convinced that changes to my diet, particularly going vegan and taking certain supplements said to fight cancer, can also help me. I’ve tried it the NHS’ way, and it simply hasn’t worked. They’ve told me my condition is incurable, but I don’t believe them.
I will stick to my guns, listen to my intuition, and believe I will find a cure for this.
