I finished proton beam therapy on Friday 9th December.
To type and say that one part of my treatment is over, feels amazing. Honestly, when I was first diagnosed with cancer, I wasn’t sure if I’d ever be able to say “this is over”. Yet here I am, saying that a part of this is over.
The burning that covers the right side of my torso is rubbish but a necessary evil. The fatigue is frustrating, but who can complain about having to sleep in an extra few hours? I knew this was coming and, in the grand scheme of things, I’d rather be an overcooked rasher of bacon rather than, well, dead. And that may sound like I’m being brave or positive or whatever, but it’s neither. It is simply a reality that I have to live with. The burns are very sore and at the soonest opportunity I’m dousing myself in aloe vera.
Side effects aside, I think I’m going to miss proton beam therapy. When you spend every day of your life living with a chronic illness, your healthcare becomes scheduled, routine and regular. You fit in in hospitals more than you fit in out in public (well, I feel like I do anyway). There is no judgement in the proton centre waiting areas, patients talk to each other, take the piss out of themselves and their situation, find beauty in the darkness, and, in some sick twisted way, belong.
The past couple of months have been a rollercoaster of odd happenings. Syringes of morphine through my chest have stopped me breathing in the middle of the night, KKK members have told me that they’re going to pray for me (which is JUST what i wanted) and clowns have awkwardly visited me in hospital. I have painted myself in glitter, accidentally worn underwear a little too skimpy for cancer treatment while I lay in only them during radiation and been deprived of mince pies. I have been confused by America daytime television, seen herds of middle aged white women wear “black friday squad” t-shirts as they bulk buy yankee candles with their eggnog lattes and watched my mother go insane via copious colouring-in books and poor driving. It is somewhat ironic that her driving is the thing that nearly killed me over here, not the tumour lodged in my ribs. And what now? I still have a hell of a lot of treatment left. I have chemo a few days before Christmas back in the UK which means I’ll be just as out of it on Christmas day than my grandma after her overly alcoholic sherry trifle. I then have another one or two rounds of VIA chemotherapy before my huge surgery (I’m going to dedicate a whole blog post about the ins and outs of how they’re making me a chest-less amputee sooner to the time) and then another four cycles of chemo. The finish line is still a good marathon away. Living 4,000 miles away from every normality you have is odd. I’m so grateful for the people I’ve met out here: the American gays who have allowed me to join their camp gaggle of brunch-obsessees, the British cancer patients who will bitch with me for hours about the anti-immigrant, Trump supporting janitor who is actually a British immigrant himself and the radiologists who you end up going to drag shows with. You strike up a fast bond with your radiologists and I feel so honoured to say that I’m leaving Florida having made life friends with both patients and healthcare staff. Actually, I’m a little sad radiation is over. Ten weeks out here ignited an even more strong sense of adoration for the NHS. Proton therapy costs around $300,000 for me. In fact, one injection I have to give myself in my stomach one day after chemo costs $10,000 a pop. Not having that added financial strain and anxiety is a gift. One moment out here that has resonated with me the most was a friend I made at the Proton Centre. Nancy was a fifty-something year old rural Floridian who lived on a horse farm and was getting proton therapy for paranasal sinus cancer. She was undergoing chemo too and, like chemo does, it was making her extremely nauseous. Because the radiation had burned her oesophagus, she was finding it hard swallowing tablets and suffering the nausea even more because of that. Her doctor offered her patches that would do the same as the tablets. Nancy’s insurance didn’t cover the patches and, because of that, she had to suffer. Seeing that broke my heart. Another moment, was when I was waiting for my iced coffee in McDonald’s and a cleaner asked if I had cancer (I mean, it’s quite obvious, isn’t it?). Her 19 year old son also had cancer and was being treated a couple of hours away. She was tirelessly working four jobs to help cover the costs that weren’t included in her son’s health insurance and, because of that, could not afford to even visit him. Next time you have to wait an extra half an hour to see a doctor, remember that. I cannot thank and admire the whole team at UF Health Proton Therapy Institute for not only saving my life, but giving me life. 6 chemos and 1 surgery to go. Catch you on the flip side. Words // Dean Eastmond