Ah, brain tumours.
In my experience, the words alone possess the power to induce sharp intakes of breath and apologetic faces. I’m so sorry they say… Gosh, that’s terrible.
Brain tumours are tricky things.
The morning of my diagnosis, I had a regular waxing appointment booked for a couple of hours later. Brain tumours hadn’t really been on my agenda or mind.
I still went for the wax – the appointments are in high demand, and once I’d got the inevitable tears out of the way, it seemed a shame to miss it.
Whilst pacing around Manchester city centre with my (now) husband. I made three ridiculously matter-of-fact phone calls to relay the news: first to my mum, then my best friend and finally, to my boss.
As I went through the motions of the waxing appointment I was asked the usual questions – you know, what had I been up to? And, how was my day going? – my response – that I hadn’t really been up to much – may not have been wholly accurate, but it spared the nice lady the difficult task of having to react appropriately.
That evening, my mum and sister visited, and we ate Dominos whilst not-really-talking about it. Understandably, no one quite knew what to do.
It was hard without a protocol.
In the weeks that followed, I awaited the outcome of MDT discussions and then, afterwards, proceeded with further scans.
We agreed to go ahead with surgery.
I continued working full-time, because I felt well, and found it to be a very welcome distraction.
I imagined that ‘the surgery’ would be another story to tell and that I’d be able to trump other people on those corporate training courses – the ones where you are predictably asked to share a “fun” or “surprising” fact about yourself with the group.
That’s a winner I thought: being able to pull the brain surgery card.
I couldn’t really have been more wrong.
As it happens, things weren’t that straightforward.
Surgery (throughout which I was predominately awake) was unexpectedly difficult – and much to the disappointment of all involved (after long and arduous attempts) was abandoned.
Afterwards, I found myself with what clinicians term a “left-sided weakness” which in reality, meant I was unable to stand, I was unable to fully control my arm or hand, and I had a weakness that would require me to rebuild myself. Literally.
It means daily physiotherapy and exercise classes. It means lost sensation and walking sticks. It means orthotics, and progress that is hard to monitor and which ebbs and flows as the weeks and months pass.
All the while – as I have been trying to get stronger, the treatment required – inevitably made the whole thing much harder.
I spent three weeks in hospital, which was soon met by fertility preservation (with the added stress of ovarian hyperstimulation syndrome (OHSS) thrown in – but that’s a whole other story!) and then, I began concurrent radiotherapy and chemotherapy, which was followed by a further 12 cycles of chemotherapy treatment.
My family waved me off (on the morning of the surgery) as an otherwise fit 29-year old. A fast walker and runner – and someone rarely out of her heels.
They were shocked afterwards, to find me physically broken.
It’s been a long old slog. During which, I’ve discovered that I am properly resilient.
I have heard people talk of the agony of “living scan to scan”, but thankfully, I am good at not worrying about the somewhat bleak statistics (only 20% of brain tumour patients survive for five years or longer), or about what may happen in the future – should the tumour change, or grow.
The same cannot be said for surgery, because I still feel the effects of it every day.
It’s in the hours of physio-related activities I undertake each week, and in the involuntary leg shaking (the technical term is clonus). It’s in the little things, like not being able to stand on one leg or properly balance.
Now, a visit to the dentist brings back memories of the operating theatre. There’s something about the angle of the chair and the noise of the dental suction tube which is spookily similar to the sound of brain-surgery-debris being hoovered up.
I sometimes wonder if the need to rebuild myself has been perversely helpful.
I don’t think I know the answer just yet but I do know that it has provided a focus and something to get on with.
Treatment would have been enough in itself, but we don’t always have a choice in these things.
At a recent review, I received the results of my latest MRI scan and the welcome news that the tumour is stable. Perhaps even more importantly, as a result, my treatment is over.
I hope that now, with a break from chemotherapy there will be more yet for me to rebuild.