There is never an ideal or acceptable time in life to be diagnosed with cancer, whether young or old. Between 2012 and 2014, 2405 young adults were diagnosed with cancer, stripping them of their lives and hurling them into a far from ideal lifestyle of hospital stays, pain and various anxieties.
Cancer prognosis for young people is at an all time high at 84% with innovative new treatments welcoming themselves into mainstream healthcare. Proton Beam Therapy will arrive on British shores before 2020 and alternatives to chemotherapy (such as immunotherapy and hormone therapy) being more offered.
Cancer is a difficult conversation for anybody, healthy or sick, and often, many of those who do not live in the daily realm of being a clinically ill person are too afraid to ask the much needed questions that lead to understanding in fear of upsetting or offending cancer patients. In a special editorial, HISKIND have asked those young and affected, what the moment of being told you have cancer is really like.
Dean Eastmond, 20, Ewing’s Sarcoma
Being in your ‘prime’, fighting off university deadlines whilst trying to form some sort of career and then be told that your life is going to be put on hold for a year while you endure cancer treatment is, well, pretty rubbish. I was diagnosed with soft tissue cancer in my rib (Ewing’s Sarcoma) after getting myself an Uber to the closest A&E thinking I had a broken rib after a large lump the size of a grapefruit appeared on the right hand side of my chest. Fickle and naive, being told there and then that this wasn’t a broken rib, but a cyst or a tumour saw a terrified Dean breaking down in the A&E waiting area, unable to decide whether to call his boyfriend or mother first. After a needle biopsy, I was diagnosed.
It’s a cliche and not the type you see in the completely unrealistic media representations such as The Fault In Our Stars. Being diagnosed is pathetic, stagnant and stale. It happens, you move on and join the ‘highway’ of treatment. There’s no easy way for a doctor to break the news, no matter how many times and watching any sense of hope drain from my family’s face tidalled the reality of what I was about to face. They try to help, the social and medical teams, providing my little brother with an illustrated “my brother has a tumour” book and offering you financial advice, but nothing can ready yourself to the turbulence and unexpectedness of cancer.
Ewing’s Sarcoma had gone from a pair of words I couldn’t even spell to the two most significant and life altering lexical items to ever pass my lips.Searching around, the only information I could find online were medical journals and obituaries; neither helpful. Bouncing between survival rate statistics ringing in your ears and learning to pronounce the name of your medications over and over and over negatively distracted me from the one thing I had yet to realise: that most of me being 20 was going to be spent in a hospital bed with various poisons being pumped into me. Yet, here I am, typing this as a tube pumps chemicals into my chest as I type this for the tenth time. Since my diagnosis, a lot has been felt, a lot has been deliberately forgotten and a lot has been lost. Seeing pain on other parent’s faces as their kids don’t make it throws you into dark places from time to time. But if I’ve told myself one thing, is that it’s that I always get better for even the shortest time. Dark always turns into light.
Dean is the Co Founder of HISKIND Magazine, whose documentation of his cancer journey can be found throughout the site and in issue one of HISKIND. You can read about his whole journey here.
Lily Lavorato, 21, Desmoid Tumour
It had taken eleven hours to remove my tumour rather than two which my surgeon had predicted. At this point the diagnosis was unclear. A biopsy showed it was benign, yet it had grown significantly in the six months since I’d found it. The tumour was sent away to be analysed, as I waited for the diagnosis in the reception. I remember how sick I felt and how many times I had to go to the “toilet” for tactical cries. My surgeon explained that it was a condition he himself had to look up: aggressive fibromatosis otherwise known as a Desmoid tumour. As I’d never heard of it, it was hard to know how to react.
He continued to explain that it was unbelievably rare, especially in neck and shoulders, and notoriously difficult to treat in young people. With little research and no standard treatment path I had to accept that it was very likely the tumour would regrow, and that any treatment I had would be a case of trial and error. I stopped listening (I found I did this a lot in appointments when I couldn’t hear anymore). I was happy it wasn’t a malignant cancer that would spread around my body. However, as I sat there barely able to lift my arm due to nerve damage from the marathon surgery, it was clear that this wasn’t a benign tumour. It continues to grow in the same area pushing and disturbing the function of my brachial plexus, nerves, arteries, and spreading down towards my lungs. It took me a while to digest what he’d said, I’d thought that once it was removed it would be the end, but sitting there next to my surgeon I was met with the daunting feeling that this was just the beginning.
A year after surgery, scans showed that as predicted, the tumour regrown. It grew slowly but steadily over the next year. August, 2016 I underwent another surgery to reduce the size of the tumour. By then my brachial plexus was entirely encased by tumour and it had begun growing into my spine. It was decided that due to the location of my tumour, I would be sent to America for proton therapy. The glamorous little sister of radiotherapy, proton therapy attacks tumours whilst sparing more of the surrounding normal tissue. This is why it is favoured for paediatric patients or those with head and neck cancers. I spent ten weeks in Jacksonville, Florida having proton therapy. I met many other Brits out there, all rare and difficult cases. My treatment went far better than expected. What struck me most was the resilience and determination of the patients my age and their parents. No one expects anything like this to happen, especially so young.
Everyone I met was an inspiration. As I wait to find out whether the protons have done their job, I feel more positive then ever before. Not that the tumour will stop growing (as it’s so unpredictable) but that while my symptoms are minimal and I’m not undergoing treatment I will not be ruled by my tumour. Yes I’m a patient with a tumour, but that’s not all I am. From now on that’s not who I’m going to live my life as.
Lily is documenting her treatment through art here.
Billy Clayton, 19, Ewing’s Sarcoma
A cancer diagnosis at any age, to any person is excruciatingly difficult. We see it mediated through advertisements that pollute the air with tension and that little green Macmillan logo.
A cancer diagnosis that is named words you have never heard uttered by these adverts, or for that matter, anybody is a particularly unfathomable experience. My name is Billy Clayton, I’m nineteen-years-old and I have Ewing’s Sarcoma, again. My diagnosis came about in August 2015 after spending night after night waking in the early hours with excruciating pain that I can only describe as the most unbearable pain I’ve experienced. I was coming to the end of my A-levels, juggling the headache of revision with the far worse ache of a tumour I was unaware was soon to put an anchor in my life; being eighteen is about embracing your new-found sovereignty, expressing the creativity that could not bloom in a grey-tinted classroom and touching the brink of a world of future opportunities.
Instead, I was looking at a stranger in the mirror without a single strand of hair on his head and ivory-pale skin from chemo-induced anaemia. I became locked inside a world of cytotoxic drugs and strangers’ faces, all whilst everyone I knew and shared classes with just months before were door-to-door clubbing away their fresher’s week, documenting each giggly step of it on their phones. Watching these normalities go on as you feel physically robbed of both your immunity and your regular life of opportunities is enough to slip you into a deep depression; the aspect of my diagnosis I struggled with the most.
Luckily, the lack of freedom or security in my life triggered a reminder of what I do have. A life-long passion for music and a singing voice I longed to use. I began recording covers on the rare days I had at home and posted them online, to which a great response followed. December 2016 marked the release of my Debut EP and I would be lying If I claimed that my cancer experience did not craft the influence of my music. When life gives you cancer, stand upon it like a stage and sing. You can listen to ‘Luminary’ here.
Phoebe Ratcliffe, Frontal Glioma
The day I was diagnosed started just like every other normal day. It was the first day back at college and walking home felt like an exhausting stagger. I was terrified I was going to hit the floor in front of a bunch of strangers. I told myself, if I got to the train station, it would all be fine. From then on out, the rest was a blur. The ambulance team were telling me I had collapsed and a member of public had called an ambulance. I suffered from a grand mal seizure and was taken into hospital for a CT scan. After waiting for a few hours, the consultant told us that the scan had shown a 6cm ‘blob’ on the brain. I was completely in shock and started to cry telling him I was too young to die.
I was referred to St Georges Hospital and placed under the care of a neurosurgeon who told me that I had a 6cm brain tumour called a Grade 2 Frontal Glioma on the left side of the brain. He gave me the choice of whether I wanted to have surgery or wait it out monitoring the tumour closely. The downside of waiting was that if I left it too long I was likely to have a brain haemorrhage. I chose to have the surgery. I had an awake craniotomy, which is essentially having brain surgery whilst you’re awake and speaking to your surgeon so they can be sure they haven’t gone too deep into your brain and caused irreparable damage to you. Sexy, I know.
I was recovering in hospital for 5 days then back home to my family. I went back to college after three weeks and continued my studying. It was almost impossible as I was missing a lot of my memory and lacked support from my friends as they thought I was exaggerating how sick I really was.
After a year of studying and battling with very regular epileptic seizures I was still having regular scans every six months, my neurosurgeon found my tumour had started growing towards the right side of the brain and recommended that I speak to the oncologists at the Royal Marsden Hospital. They gave me a choice to have chemotherapy, radiotherapy or proton radiotherapy. We researched all three choices extensively and found that Proton seemed the best of a bad bunch. In all honesty, they all seemed terrible but Proton seems to do the least damage to the brain and body. It was all sorted out very quickly and we were sent out on the 10th October 2016 to begin treatment. I spent ten amazing weeks in Jacksonville Florida, soaking up the sun and losing half my hair due to the gruelling treatment.
Cancer gives you a different day every single day. Sometimes I feel amazing and confident ready to show the world my colourful collection of wigs. Some days are very dark and I don’t want to get out of bed. I am grateful for the experience in a way, I have met so many amazing people I never would have if I hadn’t been ill. I hope I continue to grow as a person and hopefully find a life where I don’t constantly view myself as a 20-year-old with a brain tumour and epilepsy.
David Willie, 24, Chondrosarcoma
In June 2016 I was diagnosed with chondrosarcoma in my neck. My story began back in November 2015 when I discovered a lump in my neck that was pushing on my throat. After scans I was diagnosed with a ganglioneuroma, a benign bundle of nerves, and was set for surgery on May 17th. In all honesty I was never worried, and had full confidence in my surgeon and his abilities. After my op he informed me that he had removed 99% of my tumour, which with ganglioneuroma was completely normal, and all would be fine in the future. I spent 2 days in hospital and within a month or so I was back to work and back to leading a normal life.
A number of weeks later I had my follow up appointment, nothing to worry about I thought (I actually had a job interview in the morning before heading to the hospital on my own). Once there I was told my surgeon was busy and another consultant would see me, which was fine, but things started to feel different when the nurse asked me “are you here on your own?” in a sad and somewhat nervous manner. I began to feel a slight concern, but thought nothing of it. The look the nurse gave me didn’t exactly reassure me, and I was introduced to the consultant. I wasn’t filled with confidence by him as he had very little prior knowledge of my case and his broken English didn’t make things much clearer. I was told that pathology had shown after my operation that the lump was ‘chondrosarcoma’. I wasn’t particularly concerned by this news, a little annoyed maybe, but I just wanted to know the next steps.
He kept it rather short and told me there would probably just be another operation in London and I was being referred to the Royal Orthopaedic Hospital in Stanmore. Beginning to put 2 and 2 together, I simply asked “Do I have cancer?”. This is a question that no one should have to ask.
He became very vague and never directly answered me. I left feeling confused. Looking back I don’t think of that as the time I was diagnosed. My real diagnosis came 10 mins later when I googled my own condition and found out the truth, that yes, I had a rare form of bone cancer. I never actually found myself upset by this news, I never felt fearful or scared – in all honesty I felt rather positive and upbeat about it all, I just wanted to get to the solution. ‘No point stressing over it all – I’ve got cancer, let’s get it sorted’ were my feelings. The toughest part was having to call my mum and explain this all to her, as well as my girlfriend – I hated being the reason that would upset them. The next day my original surgeon called and set up a meeting for me and my parents, explaining everything fully and with much more detail and compassion – it should have been how the first appointment went.
After various scans and appointments at London hospitals, in September 2016 I was fortunate enough to be sent to Jacksonville, Florida for Proton Beam Therapy on the NHS. Despite everything, it turned out to be a great experience and hopefully the best treatment to control my tumour. As I write this I have been home for 3 weeks, and whilst still feeling the effects of the treatment, I am hopefully on the road to recovery, and more importantly looking ahead to a life without cancer.”