Elizabeth Burbeary

Elizabeth was 27 when she first began noticing something wasn’t quite right. Over a 10 week span she had many appointments with the GP and many of her symptoms were attributed to something other than leukaemia. She shares her story from fighting for a diagnosis, to where she is now.

“My story began when I caught COVID-19 in July 2021. I was feeling terrible for a couple of weeks, and I wasn’t getting any better. But this wasn’t just it, I was experiencing night sweats, extreme fatigue, bruising, breathlessness and a range of other symptoms. 

The GP advised I had swollen lymph nodes but that was most probably due to my body still recovering from COVID-19. I returned to the GP the week after as I wasn’t feeling any better and she advised me to use Head and Shoulders shampoo for the lumps in my head, and a further three separate doctors all told me I had a scalp infection… How wrong were they!

All in all, I had numerous face-to-face consultations with the GP over a 10 week span, and I was continuously told I had long-COVID. Even after a range of blood and oxygen tests and heart monitoring, I was told everything was normal.

Then, on Friday 9th October 2021, I started to get the worst headache/migraine I had ever experienced to the point where I was throwing up and couldn’t even open my eyes. I’ve had migraines for years but this one just felt different. I ended up ringing 111 and explaining all of my symptoms and issues that I had reiterated to the GP and they ended up dispatching an ambulance for me. I was rushed into Chesterfield A&E and hooked up to IV fluids and taken for a CT scan. 

Within four hours, a doctor came to see me and told me they thought I had cancer. My world absolutely shattered. I was doing really well at work and had just been promoted, had moved into a lovely flat with my boyfriend and was literally ‘loving life’.

I was taken to a specialist cancer ward in Chesterfield for seven days whilst they did a number of tests including an MRI, Lymph Node Biopsy from my neck and more blood tests. They confirmed I had T-cell acute lymphoblastic leukaemia (ALL) and I should start treatment urgently. 

I met my consultant the same day who explained everything to me in great detail, leaving no stone unturned. Due to the pandemic, I was only allowed one parent with me at a time and due to my age, I was just outside the ‘Teenage Cancer’ cut-off point to have someone stay with me so my parents/boyfriend had to mix up who was able to come and see me.

After a couple of days, I had a bone marrow biopsy and was told I would need a PICC line. However, due to the size of the mass on my chest and other tissue throughout my body (no wonder I couldn’t breathe for three months!) my veins wouldn’t allow the small line in my arm. This meant I had to have my first IV chemo through a cannula whilst I was booked in to have a Hickman Line put in under X-ray guidance. 

Once the Hickman was in, I was then able to have the rest of the treatment through the line. I stayed at the Royal Hallamshire Hospital as an inpatient for four weeks until 10th November 2021 which was when I was able to go home. 

Over the next few months, I had treatment five days a week which meant driving to and from the hospital, as well as taking oral medication. My body was so weak and prone to infection, so I was in and out of hospital. From November 2021 to June 2022, my hair had fallen out three separate times due to the different chemotherapy I was having to take. I put on over two stone in weight due to the medication, and mentally that was very challenging. 

In June 2022, I had a repeat bone marrow and the results came back clear which meant I could move on to the maintenance stage of treatment where I take oral chemotherapy every day and have IV Vincristine plus five days of steroids every three months.

I am still in the maintenance phase of treatment, but I was able to return to work in September 2022. I started to try and live a more normal life again, but this has been challenging due to the ongoing health anxiety I face everyday. It is predicted I will have treatment until at least June 2024.

When I was first trying to find out what was wrong, I knew what the GP was telling me wasn’t right. It wasn’t just long COVID, or me using the wrong shampoo and conditioner. I know my body and it was telling me something wasn’t OK. Spot Leukemia is important for gaining knowledge on noticing the signs and symptoms and linking the dots to what it could be, which hopefully will result in saving a life. “

Support services

If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).

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