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Jaymz's story

Jaymz's story

Patient & Co-Chair

September 1, 2021

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.