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As a regular and outgoing 19-year-old, I wasn’t expecting anything drastic to overturn my life for quite some time. That was until I started becoming lethargic and developed a cough that I couldn’t seem to shift for a few weeks. They tell you to go to the doctors if you have any symptom that doesn’t go away for 3 weeks, so my parents advised me to take a trip to the local walk-in clinic just down the road.

Being in peak fitness, it was a surprise to me that I was unwell for so long. So after multiple trips to the doctors, being prescribed antiviral medication and a nebuliser to try to figure out the root cause of my cough, with nothing helping, I was sent for an X-ray of my chest.

I received a phone call asking me to return to the doctors; I took my mum with me because at this point, I had it in my head that it might be something serious and was beginning to get worried. As the clock ticking in the room became very loud, the GP told me I had a 14 cm mediastinal mass (a big thing in my chest), and that they weren’t sure what it was.

It followed that I was booked in for a CT (computed tomography) scan 2 weeks after the appointment, walking out crying and telling my mum that it would be okay, not really knowing myself how I was feeling, and went home thinking that I had an overactive thymus gland and that it would potentially require an operation to sort.

I didn’t make it 2 weeks, in fact, I made it 2 days before I wasn’t able to eat properly, and this foreign thing in my chest was causing me to be unable to breathe when I ate my breakfast. My dad put his foot down and insisted that all three of us went to A&E that morning. I had the CT scan that day and was given prednisone to calm the swelling. This helped the symptoms quite quickly, and after my first overnight stay in hospital, was sent home the next day.

A few days later, I was told to go to Stoke for a chest biopsy, and after yet another overnight stay, went home again. A few more days passed, and I received a phone call one late afternoon telling me that I had lymphoma, and I was to go to Shrewsbury Hospital as soon as I could to meet with a haematologist.

Safe to say, up until that point I had tried to remain positive, but as I was writing questions to ask the haematologist, such as ‘Am I going to die?’ and ‘What will chemotherapy be like?’, the well of positivity had all but dried up, and I started to feel fear.

I had a blood test done at Shrewsbury, and the wonderful nurses on the ward told me to go home, as the next day I was booked in for an inpatient stay on the Young Persons’ Unit cancer ward at the Queen Elizabeth Hospital Birmingham. I didn’t know it would be my last night at home for a month, and how much my life was about to turn upside down.

Upon arriving and meeting the haematologist team in Birmingham, they organised a bone marrow biopsy after detecting irregularities in my blood. Two days later, the same team returned to my room with the final verdict.

On 8th August 2015, I was diagnosed with T-cell acute lymphoblastic leukaemia with a secondary mediastinal mass.

I agreed to join the UKALL 2011 trial, and started treatment not long after. Just 3 months after finishing my A Levels, I was now undergoing what would turn out to be 3 and a half years of treatment for my acute lymphoblastic leukemia. Two drugs to keep in mind would be dexamethasone and methotrexate. These would become my nightmares, but I also had many other drugs that caused symptoms ranging from peripheral neuropathy (caused by vincristine), on-the-floor blood counts (caused by cytarabine and cyclophosphamide), and little to no immune system (caused by mercaptopurine). Oh, and also red pee (from daunorubicin).

The dexamethasone caused me to gain weight rapidly, have terrible mood swings, and eventually, when having a higher dose later down the line, caused what can only be described as the most intense pain I will ever experience in my life in the base of my spine – what at the time I believed would paralyse me from the waist down. It didn’t, and after a few days of the ‘Good Stuff’ (OxyNorm, which is the step up from morphine), the pain subsided, and life went back to normal, but I will never forget that feeling.

As part of my trial, one of the interim phases involved having either increasing dosage pulses of methotrexate, or (what I had) the highest calculated dose that the human body can handle at once.

This ruined me, both mentally and physically, and I remember turning to my parents at one point and saying that I would be okay if I died to not have to experience it anymore. This happened for the first two rounds, and then for the third and fourth round, I had aprepitant and Nozinan (a palliative care sedative), which essentially put me to sleep for the entire ordeal. Much less life-hating and much more relaxing, as relaxing as you can get with a bag full of cytotoxic drugs being pumped into you.

The dexamethasone later caused me to develop a condition called avascular necrosis, which is the death of the bone, in my hips. Two years of bone degradation then led to a total right hip replacement. I’m still waiting to see if I need the left hip replaced, but you hold onto the small saving graces like still having one reasonably functioning hip, albeit painful sometimes.

I lost a lot of my own body confidence – no hair, gaining 3 stone, a complete reset of physical fitness. All this amongst the pain, vomiting, bowel dysfunction, bleeding, exhaustion, and to top it all off, PTSD (post-traumatic stress disorder). These few years of treatment were harrowing, and undoubtedly life changing.

I’m glad to be alive and to spread the message of the difficulties I faced, and to be able to raise awareness of the ordeal that is cancer at a young age. While all of this story seems like doom and gloom, it’s just an accurate account of what happened, with a lot of the meat left out – because really it was just chemotherapy after chemotherapy, pint of blood after pint of blood, and a tremendous amount of pills.

I now work in IT, have had a lot of counselling, and am pretty content with life. I live to honour a lot of friends I made along the way who were not so lucky as I was, and to remind people that while it may seem dark in the moment, nothing lasts forever. All you’ve got to do is keep swimming.

Jaymz's story

In September 2013, I was 17 years old, always busy, and working hard at my A levels. At the end of August I had started to feel unwell. I had a persistent cough, I was very tired, and at night I was sweating and having extreme abdominal cramps. These cramps were so severe that my mom would end up taking me to A&E to receive stronger pain relief. In between these visits to A&E I also visited my GP to ask them about my persistent cough and cramps. They said my chest was clear and my cramps may be diet related, so I was to keep a food diary. On the fourth admission to A&E, the doctor took my bloods and said they would probably send me home. I had a feeling he thought I was wasting his time. But he came back straight away, explaining to me that there were some abnormalities in my bloods and they would keep me in that night.

The next morning at 9 AM, a haematology doctor came to see me to explain they suspected acute lymphoblastic leukaemia, and because of my age they would be transferring me to a teenager and young adults unit. Me and my family couldn’t believe it, we thought they’d made a mistake.

I was transferred on 30th September 2013. I had a bone marrow aspirate and a lumbar puncture and awaited the results. I remember screaming the ward down as I was wheeled in because I could see other patients with no hair, vomiting, and looking very unwell. All I could think was surely not, the doctors must have this all wrong. The next day it was confirmed I had acute lymphoblastic leukemia, and if I had stayed another 2 weeks at home I would have died. This hit me hard because I couldn’t take it all in, I felt like it was a nightmare and that I would eventually wake up and everything would be ok. I started chemotherapy and on that Friday, I signed up to the UKALL 2011 trial. The process was so quick, my life had well and truly been turned upside down.

I was very naïve back then. I thought only older people could get cancer, not someone as young as me. I struggled to retain any information and my mental health suffered. I went through a stage where I couldn’t talk to anyone, not even the doctors. I had to receive help from a psychologist to help me understand and cope with my diagnosis and treatment. My main barrier was having panic attacks as soon as I saw my chemotherapy being hung on my drip, I couldn’t get my head around that I was willingly letting myself be poisoned to make me better. How could I be so calm, when I knew these drugs would make me very sick, lose my hair, lose my identity? I was no longer a normal 17-year-old girl, I was known as the girl with cancer.

My first 4 weeks of treatment were as an inpatient, and then I was allowed home to continue it as an outpatient. However, I always became too poorly to stay at home, so spent the most part of 8 months in hospital. When my hair fell out, this was very traumatic for me and my mom, who had to cut the matted hair off and eventually shave my head. But I knew once it was gone, what hair came back after that would hopefully be for keeps.

I did have delays in my treatment because of infections. Especially around Christmas 2013, when I had a really bad fungal chest infection that was keeping my blood counts very low, meaning I wasn’t fit for chemotherapy at that time. The doctors told me that if my counts didn’t recover soon, they would have to look at other lines of treatment and I might not be able to stay on my trial.

I suffered with a lot of nausea and vomiting, fatigue, and weight loss. It’s funny how you learn to cope with this day in day out, you start to never complain because you know nothing can be done about it. All you want is for the treatment to be working and finished as quickly as possible. To start with, it felt like I wasn’t strong enough to get through it. I was missing out so much at school, watching all my friends move on without me was heart-breaking, my life had stood still.

However, I learned to gain positives out of my illness. I started to raise awareness with a charity about leukaemia and fundraise. I decided to make goals for the future. What do I want to do? Where do I see myself?

This was a great coping mechanism and motivation for me. I struggled when my treatment finished not to worry about if my leukaemia will come back, to this day, I still worry, that never goes away. But I’ve learned to try and live in the moment because tomorrow is never guaranteed. Since 2013, I’ve achieved so much in my life, I can’t thank everyone enough who helped save my life. Having acute lymphoblastic leukemia changed me for the better, I appreciate life so much more. Unfortunately, on my journey I met some amazing people who didn’t make it, but now I try to speak out and raise awareness of acute lymphoblastic leukemia to hopefully help save someone else’s life.

I am lucky enough to be a haematology nurse now, caring for blood cancer patients, trying to give something back and make a difference. I am so passionate about my job and feel so lucky to be here today to take care of blood cancer patients and tell my story. 