‘Our last chance’
We’ve been on a journey to this point. When my first neurologist sat me down I’d been experiencing nerve pain for around a year, my eyes pulled off their target with every pulse of pain.
An MRI later and we identified a spread of brain and spinal cord lesions no doubt causing the problem. This confirmed my suspicion. This wasn’t a functional neurological problem. This was MS.
The neurologist wasn’t concerned. There were so many good drugs now, so many options for treatment, that we were almost spoiled for choice. Like something between an arms dealer and a sommelier my neurologist took me through the options, but favouring a modern red he thought would pair well with almost any dish I’d serve.
We started with Tecfidera, a simple drug to take daily that had comparably mild side effects. I took it for nine months. At the time I had no idea what my MS would be like, what my constellation of symptoms would become, or indeed how aggressive my disease would be. I was bolstered by the neurologist’s confidence. We had options. I was so naive.
Tecfidera appeared to be working for the first nine months until one day I found that my left hand was weak. I’d fumble buttons, spill coffee, struggle with shoelaces. Three fingers on that hand started to go numb. I tried to shake it off. I was on Tecfidera, a modern drug that was in the medium-efficacy range, and surely I was overreacting. I shook my head defiantly. It was hot. I was tired. I was working too hard.
I went suddenly blind in one eye.
That was harder to ignore and so I spent an afternoon lying in my favourite MRI machine. The team called me. Two new lesions in my brain. Tecfidera had failed.
At this point I was in a strange sense still fairly confident. We were rogues fighting an oppressive regime, a ship on an important mission battered by heavy storms and surging seas. Sure our first plan had failed, but this is how good stories begin, where heroes are made.
Given that the MS was highly active, given that the first drug had failed, we began Mavenclad. This drug was high efficacy and higher risk. It arrived by courier, covered in warnings of cytotoxicity. The way it was sealed, the countless stark warning labels, made the package look like it might contain enriched plutonium. I took a quick glance down the road to check I wasn’t about to be picked up by MI5. This was a chemotherapy drug that was profoundly toxic to anything it touched. The warnings inside described how to take the pills without physically handling them, and I tried not to be concerned by the paradox of a drug too dangerous to touch that I nonetheless needed to swallow.
A year passed.
I suddenly felt a new patch of numbness beneath my left arm below the armpit. I tried to pass it off as me exaggerating, focussing unduly on a perfectly typical experience. I was taking Mavenclad, and this was stuff so toxic it could only be safely disposed of by firing it directly into the sun… or swallowing it, apparently. Surely, it was working...
Over days the numbness spread down my left side to affect my whole leg and left arm. Over weeks it spread to my right leg and travelled up my right side and down my right arm. I became nearly entirely numb from the collarbone down. I lost control over my left hand to the point of being unable to manipulate a fork, do up buttons, type. I lost control of my bladder. I lost the ability to walk for more than 10 minutes or to stand for more than 30.
Another MRI showed us what we had already suspected, a number of new lesions in the right hemisphere. Mavenclad had failed.
The neurologist became serious, extinguishing my characteristic joviality instantly. The charm of confidence now lost to more profound concern. He looked me in the eye when he said plainly:
‘This is our last chance’
We began Ocrevus. This drug was the most effective available, the highest risk. I spent 10 hours over two days in hospital, the infusion machine dripping the drug into my bloodstream. We monitored my blood pressure throughout. I had to eat cookies and drink a lot of water to keep myself in safe territory. The cookies were triple chocolate. I cursed the gods.
50 months and three infusions passed.
I wheeled myself to the MRI machine in Southampton, knowing that this MRI was critical. If Ocrevus failed us there was no rescue mission, no plucky rebellion, no plan ‘B’.
I sat at my desk one sunny afternoon talking to a friend on Teams, we were laughing when Caz handed me an envelope.
The envelope was thin, light, with all the markings I had come to recognise. This was it. Such a simple little letter holding a truth that would come to quickly define my life, my future. The team hadn’t called me. Was it because the news was good, or because even though the news was bad there was nothing more we could do?
I opened it clumsily.
I gasped.
These were MRI results: No new activity. The MS is in remission.
Ocrevus is working.
It’s hard to describe the feeling, the relief. Suddenly I’m the plucky hero again, defying all the odds to somehow emerge victorious. I know, though, that not everyone is so lucky and that what has happened is a privilege I now must earn. The disease will come again one day, though I hope by then the medical wizards will have invented some new weapon we can deploy against it. For now, though, I need to train, to get strong, to use the time I have been given. When this monster finds me again, and I know it will one day find me again…
...I mount up on the Rocinante, my trusty wheelchair, and I blast out into the street...