This year I was diagnosed with cancer at 20 and sent to America by the NHS – as I come home for Christmas, here's what I want people to know

While waiting for a coffee to be made here in the US, a cleaner approached me asking if I had cancer (I mean, it’s pretty obvious). 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, couldn’t afford to visit him

Dean Eastmond
Sunday 18 December 2016 12:02
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When proton therapy is the best choice, the NHS can send people abroad for it
When proton therapy is the best choice, the NHS can send people abroad for it

Last week I finally finished my course of radiation at UF Healthy Proton Institute in Jacksonville, Florida. Within minutes of being unstrapped from the table that held me in place while my torso was blasted with an hour’s worth of proton radiation for the last time, I found myself surrounded by fellow patients, friends and radiologists as I rang the bell chandeliered in the foyer to the hospital a little too hard. Ringing the bell not only celebrates the end of treatment for us cancer kids, but sends a wave of positivity, and, above that, hope to other patients yet to finish their treatment.

In the space of my two months of radiotherapy, I have watched as other patients I’m lucky enough to call my friends rang that same bell and felt the pain of seeing other friends not reach the end they wanted.

I was diagnosed with cancer in the stale week in mid-June between the Pulse nightclub shooting and the EU referendum, a period where hope across the globe seemed to be just as low as the GDP exchange rate. I have Ewing’s Sarcoma, a rare and aggressive adolescent soft tissue and bone cancer growing off one of my ribs.

Since the day I was diagnosed with a tumour a little larger than my heart, I’ve completed eight gruelling cycles of chemotherapy, 27 sessions of proton therapy, lost my hair, my house, any sense of a normal life, the feeling in my fingertips and gained a newfound hatred for daytime TV.

I have observed cancer patients die around me, said more goodbyes than hellos, shared wards with some of the bravest faces, biggest smiles and kindest hearts, watched others deteriorate, watched myself deteriorate and seen the exhaustion in my boyfriend’s eyes as he sleeps in the chair next to my hospital bed.

This weekend I fly home just in time for Christmas after the NHS funded my treatment from the UK to America. 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, PBT 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 significantly reduces – or completely spares – patients horrific side effects such as mouth sores or the inability to swallow (which leads to food tubes being inserted).

If cancer has given me anything, it is a new calibration and a sense of hope.

Cancer alters your identity more than you realise. You go from not recognising your hairless self in the mirror to slowly identifying as a cancer patient and, in some bizarre way, finding pride in your situation. You end up being part of a big family and feeling like you belong in waiting rooms and wards. Hospitals lack judgment, lack the children who stare for too long or the people who watch you as if you’re a bomb waiting to go off.

The loneliness created is one of the worst parts of this disease. A sense of others not understanding how we feel, how we hurt and how we want to be treated perpetuates that alienation and detachment from the rest of society. Macmillan reported that as many as 30,000 people living with cancer in Wales will be lonely this Christmas.

In the same way that I have found myself belonging to the cancer community, I have found myself belonging to the LGBT community even more. The night of my diagnosis, I stood hand-in-hand with the UK's gay community at a vigil remembering those killed in Pulse. Little did I know at the time that in a couple of months, I’d stand outside that very nightclub days before my proton radiation commenced to pay my respects to a venue which brought people together in Orlando and across the world, a tragedy which sparked solidarity and made my cancer diagnosis feel a little less scary.

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It was the support of the LGBT community that prevented me slipping into a dark place when I was diagnosed and it is that strength which has helped me through these punishing months of treatment.

Living out here under the funding of the NHS has ignited in me an even stronger sense of adoration for our healthcare system. 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.

The realisation that we really do take our NHS for granted has dawned on me in the past couple of months. While waiting for a coffee to be made out here, a cleaner approached me asking if I had cancer (I mean, it’s pretty obvious). 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, couldn’t afford to visit him.

Next year, be a little kinder to your nurses, ask your doctor how their day is going and stop giving your receptionist grief because you've had to wait half an hour longer than expected.

As I rang that bell and reached another step closer to defeating cancer, I realised that the people I have surrounded myself with have been the best medicine for my disease. Cancer operates within me; I do not operate within it. Hope, companionship and community seem to be the three things I’ve needed not only to get through cancer, but 2016 in general. 2017, please be kinder.

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