Alfie
17 year-old Alfie shares his experience of being diagnosed with stage 4 Hodgkin lymphoma at age 13.
I began April 2020 thinking the biggest challenge was home schooling and the cancellation of karting due to lockdown! Within weeks, I had a cancer diagnosis and was spending most of my time in hospital.
Diagnosis
I was diagnosed with stage 4 Hodgkin lymphoma in April 2020 when I was 13. My diagnosis came via A&E when I took a funny turn after a bike ride.
I had a very high temperature (fever) and elevated heart rate. Initial thoughts were that I might have COVID-19 as the pandemic had just broken out. Doctors were discussing sending me home with antibiotics but luckily, they decided to do a chest X-ray as a precaution. The X-ray showed a shadow on my chest and, from here, diagnosis began. Images were sent from our local hospital to Southampton hospital. From these, an initial diagnosis of Hodgkin lymphoma was made, to be confirmed after a biopsy.
Under 72 hours from my arrival at our local A&E, I was moved by ambulance to Southampton hospital for a biopsy. The doctors were confident enough of the diagnosis to fit a chemotherapy PICC line (peripherally inserted central catheter) during the biopsy operation so that treatment with chemo could begin immediately.
I had multiple masses in my chest, and tummy area (abdomen), and my lung was also affected. The treatment was 6 months of chemotherapy. Given that the lymphoma was stage 4, the first 2 rounds were very intense and I lost my hair almost immediately. I had an unfortunate complication with my PICC line within the first month of treatment and had to have it removed.
When I was diagnosed, I asked 3 questions: “Will I die? Can I race again? Will I lose my hair?"
Treatment
As well as the PICC line, I had another type of chemotherapy line fitted, but had to have one month of my chemo administered via a soft plastic tube (cannula), which was very uncomfortable. The steroids affected my sleep pattern and appetite, and took some time to adjust to. Due to the complications with my line, I developed severe blood clots and had to inject blood thinners every day, including for 3 months after treatment.
Coping
Being diagnosed so suddenly was a shock to the system. With hindsight, my only symptoms were extreme itching to my lower legs and feet, but with no rash.
I tried not to lose my humour or determination to overcome my diagnosis. I was confident from the beginning that I would regain my health and get back in a kart. Despite missing out on a year of karting, I’m the current South West Champ, getting a clean sweep in the championship final and have had several podium places in other national racing events, including 3rd place in the 2022 Clay Championship.
Throughout my experience, I had the support of my best friend, Rueben. He shaved his head when I lost my hair and only grew it back when mine started to grow back. We had to be careful and observe the COVID-19 guidelines but when it was considered safe and allowed, Rueben would visit me, often in the garden or for a walk. During the times the schools were open but I wasn’t there, Rueben filled me in on all the school news. During the lockdown, my favourite teacher, Mrs Bowman, organised a video of messages from my classmates, which also meant a lot to me.
I am on track to do my GCSES this summer and I want to study motorsport at college while continuing to pursue my racing career.
I’ve worked hard to regain my fitness and I work out weekly with my personal trainer. I’m disciplined with my diet and I’ve developed a love of cooking.
Follow-up
I’ve been in remission (no evidence of lymphoma from tests and scans) since December 2020. I had follow-up check-ups (scans and consultations) every 3 months for the first 2 years.
I reached the 2-year remission mark in December 2022, so for the next 3 years I will have 6 monthly check ups. Then at 5 years, I’ll be discharged from follow-up.
In answer to my questions at diagnosis, I did lose my hair but it’s come back. I’m also back to racing and winning!
Alfie shared his story with us as part of our Let's talk lymphoma awareness campaign, running throughout Blood Cancer Awareness Month in September.