Nobody knows what to expect from their first year at university. Most freshers have never lived away from home, never had the freedom of student-hood, never studied in lecture format – it is a year full of new experiences and learning curves. I was full of anticipation, nerves and excitement as I prepared to have the best experience of my life and ‘find myself ’.
But, after just four months studying at Warwick, I was diagnosed with sarcoma – a rare form of cancer. That I certainly wasn’t prepared for.
There had been a lump on my left shoulder for about 18 months, and slowly but surely it was growing. It came to a point in the summer of 2015 when I could see the lump in the mirror when I wore a vest, and I decided to visit a GP, but I did not once think it could be something sinister.
All I wanted was to ignore the growth and enjoy being a fresher
I was informed that it was probably a cyst or lipoma, and could be removed in the GP under local anaesthetic. This route did not appeal to me (needles and knives are not my favourite) so I was sent for an ultrasound. The results of the ultrasound were uncertain – they couldn’t determine what the lump was, and it needed further investigation. At this point, I had only been at Warwick for only two weeks and had already returned to London for this scan, a regular journey I’d soon have to get used to.
Chaos commenced when I changed to the campus GP, and instead of an automatic cancer referral as suggested, I was sent for an MRI a few weeks later. The results were exactly the same, and my ‘suspicious lump’ again required further investigation.
All of a sudden what initially appeared to be an innocent growth was turning into something a lot more worrying and time consuming. All I wanted was to ignore the growth and enjoy being a fresher.
In December, I arrived home to realise my parents had been worrying a lot more than I had. Whilst I’d been in my ‘uni bubble’ meeting new people, drinking, and occasionally dabbling in work, they had been at home worrying that I might actually have cancer – a thought that I had not let enter my mind. How can a fit, healthy, 18 year old have cancer? And in my shoulder?! I’d heard of breast and bowel cancer, but never shoulder cancer. There was no way.
Due to the rarity and unusual slow-growing nature of ASPS no cure has been found yet
The doctor was over 90% sure it was in fact a harmless ‘vascular malformation’, something that is difficult to decipher with medical imaging. I was sent for a needle biopsy to confirm.
The biopsy in January was my first time under general anaesthetic, so it was nerve-wracking, but I went home that day as positive as ever. I returned to campus with the results booked for two weeks later. A few days passed, and while studying in University House I got a phone call from a ‘private number’ (something I now associate with the hospital that makes my stomach turn). A nurse told me I needed to come into hospital sooner, even if it meant missing lectures.
I vividly remember this as the first time I genuinely felt worried. Why would they be calling me in early? It must be bad news. My mother thought perhaps they wanted to put my mind at rest. I hoped she was right.
My father and I went to the hospital on a Thursday morning, expecting good news but, fearing the worst. A nurse found us in the waiting room and introduced herself. I was confused as to why I needed my own nurse if I was fine. We sat waiting quietly, not mentioning that we both feared the nurse’s presence meant bad news.
It was almost as if saying it out loud would make a bad result more probable, that maybe if we didn’t say ‘cancer’ that cancer wouldn’t happen. Unfortunately that was not the case, and cancer is exactly what happened.
I had a ‘soft tissue sarcoma’ that needed to be surgically resected alongside possible radiotherapy, and a follow-up regime of scans and consultations.
Chemotherapy was not an option as my specific sarcoma (Alveolar Soft Part, ASPS) is unresponsive to traditional intravenous chemotherapy. This news was initially a relief to me, but as my understanding of cancer has grown I have come to realise the reality of this in terms of having limited treatment options. Due to the rarity and unusual slow-growing nature of ASPS no cure has been found yet.
I was so worried that having this new diagnosis would change the way people treated me
I returned to campus the next day, absolutely determined to live as normally as possible until my surgery in a couple of weeks. That day I had a number of hospital calls and my surgery date was suddenly moved to the coming Monday. This made attending lectures that day almost impossible as, understandably, I couldn’t focus. I tried to inform as many staff members as possible of my condition and everything that was happening.
I had the surgery on Monday back in London – my first ever surgery, my first overnight hospital stay, even my first blood test (and first time fainting…). Post-surgery, I was advised to take about a month of rest. But Warwick was calling me! Two weeks later I returned to halls but I didn’t jump straight back into my studies.
I was very lucky to have incredibly supportive flatmates to welcome me home, who treated me like a normal human. I was so worried that having this new diagnosis would change the way people treated me, not to mention the new scar I had to deal with. I have had some friends who couldn’t handle the diagnosis, but for the most part everyone was amazing and continue to be.
A big struggle for me was going out with my scar on show, be that to lectures or just to meet friends, as I was sure people would stare or be disgusted. I knew I didn’t want to hide my scar, but I equally did not want cancer to be the centre of mine and everyone else’s thoughts – I just wanted to be normal. I slowly became more carefree with displaying my shoulder to the world, but sometimes I still find myself wondering if people are staring at it.
The state of my studies, all the essays and lectures I had missed were a big concern. My department gave me generous essay exten- sions, and mitigating circumstances relieved me during the exam period. I have come to find that in terms of studying with an illness like this transparency with your department, professors and personal tutor is key in order to get the right kind of support. Nonetheless, the exam period during my first year was incredibly difficult, as I felt so behind on revision. At points I was ready to give up as I was sure I would fail. I felt sorry for myself, blaming cancer but also my own lack of ability for how difficult I was finding revision.
Early into my second year a mark on my lung was confirmed to be cancerous, and a few months later it had spread to my scapular
By talking with a few close friends about the mental struggles I was dealing with, and applying for mitigating circumstances (which I didn’t initially believe I deserved) I say my exams, and didn’t fail them!
Doctors had spotted a mark on a chest CT but couldn’t be sure of what it was. As a result I lived through the rest of first year panicking that my cancer had spread.
Cancer is an unpredictable disease. Early into my second year a mark on my lung was confirmed to be cancerous, and a few months later it had spread to my scapular. It was then I was told for definite that whilst I was not untreatable, the disease was incurable.
Since coming to terms with the fact that my cancer is never going to magically disappear, I have become an advocate for spreading awareness. Information on ASPS in particular is extremely sparse, so I blog about my experience with the disease.
Cancer takes so much power out of the hands of its victim, so my aim is to claim back some of that power and use it to educate young people and achieve both earlier diagnosis and funding for for research into more effective treatments for the future. After all, one in two of us will develop cancer, so it is about time we started having more open conversations about this disease.