13 May 2024

‘Getting on with it’: Lizzie’s life with ALL

“I was told the lumps on my head would go if I used dandruff shampoo………. But I just KNEW that over that 10-week period of being told by my GP that I was fine, something wasn’t right.” 

Lizzie at Christmas 2021 during treatment

Lizzie Burbeary (pronounced like the brand Burberry) spent ten weeks visiting her GP with mysterious, debilitating symptoms. But each time she was told there was nothing wrong with her. She was only diagnosed with leukaemia after she was taken to A&E by ambulance. 

Lizzie’s first visit to her GP was in August 2021. The 27-year-old had discovered lumps on her scalp and down her neck while washing her hair. She was given a blood test but it came back normal. 

Lizzie’s case is unusual in that her blood tests did not show striking signs of leukaemia at any time. Over the ten week period before she was diagnosed she had four or five full blood counts that all came back normal, and even during her leukaemia treatment she was told her blood tests were always ‘OK’. In some cases of leukaemia, the blood cells can remain in the bone marrow rather than circulating in the bloodstream. A bone marrow test is the only definitive diagnosis for leukaemia.  

“I was told the lumps on my head would go if I used dandruff shampoo,” said Lizzie, who lives in Chesterfield in Derbyshire and works as a Sales Support Co-ordinator. “For the next ten weeks I visited my GP every week. I was continually told I was fine and that there weren’t any signs of anything sinister although I had so many what I now know to be symptoms of leukaemia. These included extreme fatigue, hair loss, nausea and sickness, and breathing problems, as well as the lumps on my scalp and neck. 

“In October, after experiencing a horrific migraine, I decided to ring 111. I explained my symptoms and they dispatched an ambulance. When I arrived at A&E I had blood tests done and a CT scan, I was told within four hours of arriving that they thought I had cancer.” 

Lizzie during treatment

Lizzie was immediately admitted to the Chesterfield Royal Hospital where she was initially diagnosed with lymphoma. But after a week of biopsies, blood tests, CT and MRI scans, on 15th October 2021 she was told she actually had t-cell acute lymphoblastic leukaemia. She was transferred to the Royal Hallamshire Hospital in Sheffield to start treatment immediately. 

“I was surrounded by my family as the doctor broke the news and all I could think was ‘am I going to die?’. I just KNEW that over that 10-week period of being told by my GP that I was fine, something wasn’t right. I was heartbroken, angry and scared. 

“There wasn’t any time to fit a line in and I had my first chemotherapy through a cannula. After my first week I went to have a PICC line fitted, but due to the size of the masses that had by that time appeared on my chest, my veins just wouldn’t allow the line to go through. So it was scheduled for me to have a Hickman line instead. That procedure went ahead a week later and was fitted fine. I stayed for four and a half weeks in hospital, with chemotherapy once a week.” 

After being discharged home from her intensive treatment, Lizzie began the next phase. This involved going for five-day-a-week sessions of chemotherapy and steroid treatment in 12 weeks cycles. She also had a lumbar puncture every four weeks. 

“I became extremely exhausted and had a to have a few blood transfusions to give me a boost. My dad came back from where he lives in Cyprus, my mum and stepdad supported me all the way through, and my boyfriend Scott took three months off work to drive me to and from the hospital. 

“It’s commonly known that when you take steroids, one of the side effects is weight gain but I didn’t expect just how much weight I would put on and how different my body would become. I was so swollen, my face, arms, legs everything was like one big balloon. Coupled with the fact I had no hair; I just didn’t recognize myself. 

Lizzie in 2021 with her family during treatment

“I lost my hair three times in total. The first two times weren’t ideal, but it didn’t affect me as much as the third time. It broke me. I thought I was finally getting somewhere as it had grown a little since the last time and to lose it again really took its toll on me. It was so hard to listen to those around me who would say ‘you’ll lose the weight’ or ‘it’s only temporary’, as I thought I would never feel like me again. 

“Alongside all of this, I could hardly walk, I was absolutely exhausted most of the time and didn’t really leave the house. Covid was still a concern at this time which really frightened me when I went out in public spaces as I was so conscious about my lack of immune system. The pandemic also meant when I was an inpatient my family were unable to come and visit me because the ward was under a strict ‘no visitors’ policy. I found this time quite difficult and felt very lonely a lot of the time. 

“I am a very strong, positive person, which helps a lot. Plus I don’t think the reality sunk in for a year or two, so I literally just ‘got on with it’.” 

In June 2022 Lizzie had a repeat bone marrow biopsy which showed her treatment had worked. She is currently on a maintenance schedule which consists of the oral chemotherapy drug Mercaptopurine every day and a cycle of the chemotherapy drug Vincristine and steroids every three months. Lizzie is now focused on her end of treatment day which has been set for 3rd July 2024, at which point she hopes she will officially be in remission. 

“When I was diagnosed, I was really fit and healthy. I was walking every day and running three to four times a week. I had just moved into a lovely flat with my boyfriend, I’d been promoted at work and was feeling really happy. You never expect to have to put your life on hold. It’s a very difficult thing to process. While time has moved on for my friends and family – for example my friends have been getting married and having children – I feel like I have lost two years of my life which I will never get back. I feel like I can’t move on with my life until I have effectively lived those two missing years and caught up. 

“I hope that by early 2025 I am in full remission and living a happy, healthy life. I want to be back working full time hours in my job and start saving to buy a house with my boyfriend. Life after treatment really scares me and the thought of relapsing is at the front of my mind, but I have been so strong throughout and I’m hoping this can continue going forward. 

“My message to anyone else noticing strange symptoms would be don’t ever stop pushing for an answer. No one knows their body better than you. If you think something is wrong, keep making those appointments and even ask for a second opinion. I knew something wasn’t right, I could feel it. Although my blood tests came back normal each time, I still knew something underlying was going on. Don’t take no for an answer and never ignore changes in your body.” 

Lizzie at Christmas 2023 with her boyfriend

Discover personal stories from people affected by leukaemia.