A British mum has revealed how having puffy eyes ended up being a symptom of a rare form of cancer.
Lizzie Spear, 56, had suffered with health issues for many years before her brutal cancer diagnosis. Aged 17, she was diagnosed with Immune Thrombocytopenia (ITP), which is a rare blood disorder that makes your blood difficult to clot.
Then, at the age of 21, Lizzie had to have her spleen removed, with the professional musician very much used to life as an immunocompromised person.
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Back in November 2020, mum-of-one Lizzie was then diagnosed with fibromyalgia; a chronic condition that causes widespread pain and tenderness in the body.
But it was in February the next year that Lizzie's daughter, Lowri, began worrying about her mum's health even more so after she endured another bout of ill health.
"At that time, Lowri was studying from home due to Covid preventing her from going to uni in person," Lizzie, who lives in Bramshall, Uttoxeter, said.
"I’ve always been a poorly person, but she spotted I had big bags under my eyes – they were huge – so she said to go to the GP about.
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"I said no it’s nothing, but she insisted. I owe my daughter an awful lot."
The feeling from doctors was that Lizzie had been suffering an allergic reaction to morphine patches she was using to treat her fibromyalgia.
To be safe, blood tests were conducted to see if anything else was going on behind the scenes.
Two week later, medics in Burton-on-Trent rang to say there was an anomaly with her blood results and to expect a call from Derby Royal Infirmary.
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Lizzie said: "They phoned me the same day to say I needed an urgent bone marrow biopsy. I went straight to the hospital, and they told me I had leukaemia.
"They said they would need to send me to Nottingham City Hospital the next day where they carried out the bone marrow biopsy."
It was on 3 March, 2021 that Lizzie was diagnosed with acute lymphoblastic leukaemia (ALL); something that was a 'huge shock' to her and her loved ones.
Looking back at her health before the diagnosis, Lizzie revealed she had been suffering from night sweats that she had 'put down to menopause'. She was also 'always fatigued' and had some bruises 'but nothing like' when she was diagnosed with ITP. All these are symptoms of leukaemia, the NHS says.
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"As soon as they mentioned the bone marrow biopsy warning bells started ringing for me – after having a previous blood disorder, I knew this might be bad," she said.
“My fiancé John and I both work in the music industry and during Covid we had lost all our work, which was devastating. We also had to cancel our wedding plans. So, we were already dealing with that, and I had been shielding for a year. But I’m a pretty tough cookie, and initially I just took the diagnosis in my stride. It was almost more devastating for my immediate family."
Lizzie spent eight weeks in Nottingham City Hospital having two rounds of chemotherapy. She was then told she would need a stem cell transplant to achieve full remission from her leukaemia. The transplant came from her own daughter, who donated stem cells on two occasions.
In an awful turn of events, her cancer returned in November 2023. Lizzie said: "The puffy eyes came back on holiday, but I dismissed it as too many cocktails and not enough sleep. I didn’t think the leukaemia was back."
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She was told her only chance of survival was a new therapy called CAR-T.
Lizzie said: “They said that it would depend on being accepted for treatment by the NHS Cancer Drugs Fund panel. Outpatient chemo started again between November and February 2024 which was a 100-mile round trip. And then I became really unwell.
"I lost the sight in one eye, was having regular falls, and had painful peripheral neuropathy in my lower limbs and feet which made mobility impossible, so I needed a wheelchair. The final straw came when John was away, and I slept for 36 hours, only waking to hear my mum hammering on the front door. I was admitted to hospital and diagnosed with a severe reaction to intrathecal methotrexate.”
Lizzie’s chemotherapy was terminated, but the good news was the Cancer Drugs Fund approved her for CAR-T, and in February last year, her T-cells were collected.
She is now recovering at home and has progressed from her wheelchair to a rollator to just a walking stick, although she still has peripheral neuropathy. Lizzie is also back in remission as of August 2024.
"Overall, I am taking one day at a time. We still don’t know what the data is – CAR-T is still fairly new so I am the data! So, it’s a case of seizing the day. I’m taking one day at a time because nothing in life is certain," she said.
For more details about charity Leukaemia UK, visit leukaemiauk.org.uk. Lizzie's fundraising page is available on JustGiving here.
Tom Earnshaw