chat
“I just thought I was tired – but it was leukaemia.”
When I look back now, the very first sign that something wasn’t right was how tired I felt. I was exhausted. Not just run-of-the-mill tired, I’m talking about 99% of the day spent feeling like I was dragging myself through mud. At the time, I brushed it off. I was working night shifts, and we had a new puppy at home, so I told myself it was all part of a busy life.
Then the bruising started.
Again, I tried to rationalise it. Maybe I knocked myself in my sleep or got bumped around while playing with the dog. I didn’t think it was serious. It wasn’t until I nearly passed out, once at home and again while at work, that I started to worry something more might be going on.
I even thought I might be pregnant at one point. But test after test said no, and nothing was improving. In January 2021, I finally got a telephone appointment with my GP (it was during the pandemic, so face-to-face appointments were hard to come by). Luckily, my doctor really listened. She took my symptoms seriously and sent me for a blood test.
The next day, I got a call from the hospital.
That call changed everything. I was told someone would be in touch and that I should bring an overnight bag. The alarm bells started ringing straight away. My mum tried to keep me calm, and my husband met me on the way so we could go together. But when I heard the words acute lymphoblastic leukaemia, everything else blurred. The consultants were still talking, but I couldn’t hear them. My brain just stopped.
I was 26 years old.
Those first few days were a whirlwind of phone calls, crying, and trying to understand what was happening. But honestly, there wasn’t much time to process. I was admitted almost immediately and told I’d start treatment within days. I’ll never forget that first night on the ward, crying and Googling (which I really wouldn’t recommend).
I had an incredible support system. My family and friends were amazing, even during the lockdowns, they found ways to be there. From seeing loved ones through a hospital window at King’s Lynn, to waving through FaceTime when I was moved to Addenbrooke’s, those little moments of connection meant everything. My mum and dad drove for hours just to drop off snacks. My husband was back and forth with clean clothes. It’s those little acts of love that kept me going.
Treatment was intense. I had IV and oral chemotherapy, targeted therapy (which unfortunately didn’t work), regular blood tests and infusions, bone marrow biopsies, and intrathecal chemo. I even had surgery to remove an ovary in the hopes of preserving my fertility. In November 2021, I had a stem cell transplant, my sister was my donor.
Physically, I was weak. But I was determined to keep moving, even if that meant just walking laps around my hospital bed or practicing karate moves in my room. Mentally, the reality hit hardest just before the transplant. I remember breaking down the day I was due to start that part of my treatment. But I stayed as positive as I could and faced everything head on.
Right now, I’m in remission. I still have regular check-ups, annual tests, and daily antibiotics to protect my spleen. I’ve also had to restart all my childhood vaccinations and take HRT, as the treatment left me infertile. It’s been a lot.
Physically, I’ve improved so much. My joints and muscles aren’t quite what they used to be, and fatigue is still a daily challenge, but I’m adapting.
These days, I keep strong by going to the gym, walking my dogs, and teaching karate. Staying in touch with my loved ones keeps me grounded and gives me strength.
If you’ve just been diagnosed, here’s what I want you to know: Stay positive, and don’t be too hard on yourself. It’s okay if people you expected to support you aren’t there, some just don’t know what to say. That’s not your fault. Get up and move, even when it’s hard.
And finally, please understand this: leukaemia doesn’t end with remission. Many of us live with the long-term effects, both physically and emotionally. Just because someone looks well doesn’t mean they aren’t still fighting battles every day.