Below he shares how a trip to the opticians started his life-saving journey.
My journey began at the beginning of 2020, just before the pandemic took hold of the world. I had just turned 40 and moved from London to New York the previous year for work and was looking forward to settling into life in London.
Then one morning I started having some strange intermittent double vision, like I was seeing the world split in two.
I thought it might have been too much time spent on computer screens, or too much champagne over New Year. I had never had a major illness before or even been admitted to hospital. I didn't think that anything would affect me.
After a week of the on/off double vision, I was luckily urged by some colleagues to get it checked out. I left work early to pop into a Specsavers down the road, thinking I would get some glasses and still make it to dinner with some out-of-town friends. I never made it to that dinner.
The lovely optician at Specsavers couldn't find anything wrong with my vision, so she urged me to go to A&E at the Moorfields Eye Hospital for further investigation.
They couldn't find anything either, so thankfully the registrar suggested I get a CT scan. They couldn't do it there since it was a Friday night and not urgent enough, so he sent me to my local A&E at The Royal London Hospital.
Fourteen hours of waiting between hospitals, two CT scans and six viles of blood later, they released me without finding anything. That same afternoon, I got a call that after further review they wanted me to come back.
There was a lesion behind my sinus, at the base of my skull, pushing against my pituitary gland. They didn't know what it was, so an MRI was needed.
You can imagine the shock and confusion we felt. Trying to deal with the symptoms, a whole new healthcare system, and all the inevitable questions that popped up. Who are the experts? Do we need to go private? Do we go abroad for second opinions? How quickly will it grow?
We waited anxiously for any phone call or appointment letter, not knowing the next one to come was difficult to handle. We began to realise that we couldn't control much either - the timeline, the prognosis, or our future.
A couple of weeks later the MRI showed that I had a 23mm tumour in the base of my skull, near my cranial nerve 6, which was probably pinched and causing the double vision.
I was relieved to know there was something to explain my double vision, but words can't describe the shock and disbelief that followed.
They threw out strange words — definitely not the pituitary adenoma that I had lulled myself to believe — but I don't think they even mentioned the word cancer. It was something called a chordoma, or possibly chondrosarcoma.
Both are rare, but I didn't know how rare, until a quick Google search for chordoma revealed it's a one in a million incidence. Luckily, for suspected sarcomas we have a pathway in the UK through the NHS, which reviews cases by multi-disciplinary teams and pools expertise for these rare diseases. That helped give me confidence that I was in the right hands.
I was referred to the London Sarcoma Service and then transferred to Prof David Choi at the National Hospital for Neurology and Neurosurgery/UCLH in London, who's a leading expert in chordomas. The plan was to resect as much as possible through a less invasive endoscopic transnasal approach, through the nose and sinus into the base of the skull.
March 4th 2020 was the date of surgery #1. With the assistance of ENT surgeon Professor Peter Andrews, the 4-hour surgery went well, although any surgery brings about new challenges particularly with the sinus. It's confirmed that I have a conventional or classic chordoma — the most common type — and my double vision thankfully goes away. We were relieved.
In June 2020 I was recovering well and felt like I had gotten over the biggest hurdle. But then we get a call from the surgical team. The surgery didn't remove enough margin, there wasn't space around some vital visual structures so I couldn't get radiation treatment without risking serious blindness.
They had to go back in. We were blindsided. We didn't realise quite how much of a marathon it would be, and this time I would do it alone due to Covid restrictions.
Surgery #2 is a redo — exactly the same as the first, except the risk of mortality and other complications strangely goes up. The only positive about the redo is that it's familiar. Fortunately, the surgery goes well, and again we were optimistic about the next steps.
The summer winds down and in August we head out on a holiday abroad to celebrate, in the very small window when travel as allowed. Then I get a call from Prof Choi, my neurosurgeon, asking to speak that same day. Your heart drops when you get that kind of call. There still isn't enough margin and I wouldn't be referred for PBT, he said.
They would need to go in again, this time with a different approach. A craniotomy. The stuff of science fiction.
We were devastated. I had the option of going down a different radiation route, but that would have probably increased my chances of recurrence. It would be like giving up. So, over some grilled sardines on the beach, we decided on getting my head cut open. Surgery #3.
Despite all my fears of getting my head cut open the craniotomy goes well, aside from the seizures I had from the surgery. We eagerly awaited the MRI results after the swelling subsided.
In October 2020 I finally got the call I had been waiting for. The team were able to get enough margin this time to refer me to the proton beam therapy (PBT) panel. I find out I'm accepted onto the PBT programme at The Christie in Manchester, the only facility we had in the UK at the time.
We jumped for joy. I didn't realise you could get so excited for radiation, but after three surgeries it felt like we were finally going forward again.
We uprooted ourselves to Manchester during yet another lockdown. I'm fitted with a mask and the machine cycles around me. I had to go in for 41 treatments, five times a week, about an hour a day, for a total of 73 Gy. For comparison, breast cancer tends to be treated with 45-50 Gy. It was a lot of radiation in a tiny space.
I finished my treatments in February 2021 and finally it felt like we've gotten over this year-long hurdle. For me, recovering from radiation was like the opposite of surgery. There's not much pain at first, but the effects built up over time, and affect me even to this day.
I received my first "stable" scan in October 2021, and I'm happy to say that it has stayed that way. I'm on 6-month MRI scans for five years, and yearly after that. I can't say there haven't been challenges — I have brain fog, endocrine decline, cognitive/memory issues — all things I knew were possibilities. And going through all the treatments during Covid restrictions added an extra wrinkle to a very difficult process.
But I'm so thankful to my dear partner, family, friends, the terrific NHS staff and all the events that unfolded — from the optometrist at Specsavers to the registrar to the radiographers, dosimetrists, and so on who extended my life. And I'm proud that it's available to anyone who is medically viable for, regardless of status.
My advice for anyone going through a cancer journey is to make sure you have an experienced team around you and try to take it one step at a time. There are so many twists and turns along the way it might be helpful to focus on the things you can control, like getting yourself ready for the next appointment/scan/procedure. And treat yourself and those around you kindly.
Donate now (This link opens in a new window) More about Chordoma