My warpaint against cancer is on.
I’ve arrived in America, safe and somewhat sound, for ten weeks of Proton Beam Therapy in Jacksonville, Florida.Being here marks a new step in my fight against Ewing’s Sarcoma; the bitch of a cancer that lurks inside my chest. Being here is an honour and opportunity that not many get successfully offered. Every second, no matter how tough, has to be taken with that in mind. That I’m here to fight and serve as a success story for the UK, so the NHS can justify providing Proton (PBT) there. I will be that success story.
I’ve written about the past few days in various segments to give a (not-so) brief update about life out here in the States.
Catching a flight halfway across the world, three days after you’ve finished your latest round of chemo, with no coffee and in a wheelchair could be pitched to Netflix for a new comedy series. Between explaining to mum that, no, Mexico is not a state, no, it’s not acceptable to clap when a plane lands and, yes, dad really did just use a defribulator on someone halfway across the Atlantic ocean, the flight between London at Atlanta was pretty bog standard.
Cut to arriving in Atlanta, wheelchairless and tired, we missed our connection flight after being stuck in customs and running to the correct gate (trust me, watching me run in skinny jeans when I was wheelchair bound ten hours before is a sight really not worth seeing). We ended up getting a flight to Jacksonville FL six hours later and arriving 22 hours after we left London. A sense of delirium overcomes when you see two sunsets in one day. But I mean, it’s not like we had to be at hospital the next morning. Oh wait, we did.
I mean, for me to moan about being in hospital when my sole purpose for coming out to Jacksonville was for medical treatment is, well, stupid. It’s been quite a bumpy week in terms of my health. Actually, as I type this, I’m in a quarantined room after my immune system bombed on the second day of being out here. It’s easy to assume that cancer doesn’t hurt. But cancer does. It really hurts.
The morning after we arrived in the sunshine state, I headed to the UF Proton Center where – as the name CLEARLY makes obvious – I’ll receive the Proton Therapy. A morning of inductions and introductions, a million signatures and new faces eased the mind and gave me an indication to exactly what’s going to happen to me and how. That, followed by yet another MRI led to the next morning when a mould of me was made (practically like adult papier-mâché). I was plonked into a CT scanner in just my boxers, x’s drawn all over my body and a group of radiologists moulding this weird beanbag into place. In hindsight, it sounds like the ending of a dodgy night in Vegas. This mould will keep me in the same place throughout my treatment so they don’t accidentally zap me in the wrong place.
The Proton Center exceeds expectations in hospitality. The team have made quite a bumpy first week so much more bearable. Everything from making sure every question is answered in a way we understand to loaning mum with a kettle so she can keep up her caffeine intake (her only way of dealing with a gay, cancer ridden mess of a son). They hold weekly lunches and provide tickets to local happenings, pump you full of coffee and make you feel like more than just a patient.
What actually is this Proton malarkey?
Proton Beam Therapy (PBT or IMPT) is sort of like the “Tesco Finest” version of standard radiotherapy (IMRT). It works in a way that fires proton beams instead of photon beams at the tumour site, depositing radiation and thus killing the cancer. Because the proton beams deposit their radiation at the cancer site, the amount of unnecessary radiation reaching healthy tissue is reduced at a medically revolutionary level. No doubt, Proton seems to be the future of radiotherapy. For cancers such a head and neck cancers where tumours exist on the tongue, the pharynx, larynx, paranasal sinuses or the salivary glands, the lack of unnecessary radiation spares or significantly reduces patients of horrific side effects such as mouth sores (extreme mucositis), dry mouths or the inability to swallow (which leads to food tubes being inserted).
For me, PBT benefits me in a multitude of ways. Where my tumour (we like to call her Ruth) exists within my ribcage, not having radiation hit my lungs, heart, liver and kidneys reduces the risk of long term side effects, second malignancy (the spread or return of my cancer) and the standard side effects of radiotherapy. Yes, there are plenty of side effects I will face that will open a whole new world of ouch such as skin burns, fatigue and god knows what else, but it’s certainly the lesser of two evils.
The machine itself looks like something out of Star Wars or Tron and basically feels like a giant microwave cooking away at your tumour (remember what I said about Tesco Finest?). I start treatment on Halloween (oh the potential of things to go wrong) so I can’t say anything about what it’s like but STAY TUNED KIDS.
And then there’s the acclimatisation into American culture for the rest of the year (or should I say, acclimatization?) We have a wonderful apartment south of the colossal river that divides the city with walk in wardrobes that could pass as a spacious London apartment. Everything is so different, foreign and Donald Trump filled. Seeing houses plastered with tacky “make America great again” posters and confederate flags, McDonald’s signage in size contest with the millions of church signs, billboards everywhere and a overall better dental hygiene than the UK is going to take a lot to get used to, but hey, they have coffee cream out here and that alone is worth a lot. Roads are bigs, hospitals are big, cars are big, political views are big and, as expected, people are big.
Time to kick cancer’s butt some more, the yankee way.
Words // Dean Eastmond @deanvictorr