A teacher who thought her life-threatening cancer was a cold has said she "wakes up every day feeling grateful" to be alive. Now she is searching for a stem cell donor to save her life and help stop the disease from coming back.
Venessa Taylor, 54, from Waltham Abbey, Essex, was experiencing fatigue and weight loss prior to being diagnosed with leukaemia in 2019. She believed the symptoms she was experiencing were due to catching bugs, coughs, and colds from children at the primary school she worked at.
Despite having had thirteen bone marrow biopsies, which all show she is in remission, Venessa needs a stem cell donor to avoid the disease recurring. None of the 14 family members tested were found to be a suitable 100% match, and Venessa has been struggling to find a match for transplant.
Venessa’s first symptoms were exhaustion, she said: "I began feeling quite exhausted. Initially, it kept coming and going and then became almost constant. Eventually, I would describe it as complete and utter fatigue.
“Working in a primary school, usually during the second part of the autumn term teachers often come down with ‘undiagnosed’ bugs, coughs, colds etc. So, this is what I thought I had."
She was given a diagnosis after multiple hospital trips and had to spend six weeks in isolation at St Bartholomew’s Hospital in London. When telling her loved ones she described the "shock, devastation, and fear on their faces".
The primary teacher has been forced to medically retire because of the disease. She immediately started treatment following her diagnosis, with the first phase including steroids, chemotherapy, and other medications.
Venessa also had her first bone marrow biopsy which was unsuccessful as it was extremely painful and the doctor did not manage to complete the procedure, which meant it had to be done again. Following the diagnosis she had to “live” in a sterile room in isolation, with children under twelve - including her youngest daughter - unable to visit due to the risk of infection.
Speaking of the treatments she has had, including chemotherapy, Venessa said: "[They] have been horrendous and long-lasting. I was told these side effects could take years to leave my body if they do at all. But, I am still alive."
Venessa added: "Neither myself, my family or my friends knew what had hit us. My family and I were completely shell-shocked. At first, I was convinced the hospital had got it wrong and that they’d got the wrong person, that I didn’t really have leukaemia.
"The most difficult part of being in hospital was being separated from my family, especially my youngest daughter and my two young grandsons. My two eldest daughters literally moved into my hospital room, taking it in turns to stay with me overnight."
Venessa’s daughters created a “wall of encouragement and inspiration” in their mum’s hospital room. This included photos of loved ones drawings from the children and positive and uplifting quotes which Venesssa said helped give her "strength".)
Needing a stem cell donor to survive
Venessa has been told she needs a stem cell donor to survive, which will need to be a 100% match. There is less than a 20% chance of finding a candidate because of Venessa’s ethnicity.
Her daughters attempted launching social media and press campaigns with bone marrow and blood cancer charities however no match has been found. She said: "I was told in no uncertain terms that I would need a stem cell transplant to survive.
“As none was found, I was given an additional two years of chemotherapy. Today I am treatment free and still in remission, however, I needed a stem cell transplant to stay in remission, unfortunately even after an extensive media campaign none was found."
In May 2017 Venessa went into remission after her first chemotherapy. However, she had to endure two further years of chemotherapy due to a stem cell donor not being found.
Every three months the donor registers were searched for a viable match for Venessa who has been unable to find a suitable candidate for the life-saving stem cell transplant she needs. Between 2020 and 2021 just 146 organ donors were from ethnic minority communities, according to the NHS Blood and Transplant annual report.
She added: "I am a mother and a grandmother and that is what is most important to me, and not being around for them is what I feared the most. My family's support is what has given me strength, courage and determination.
"When I was in the hospital, I had visitors every single day and for that I am grateful. The medical staff at St Bartholomew’s Hospital are everything you need the people working to save your life to be and to them, I am also grateful."
Venessa is now working with leukaemia charities to raise vital funds and spread awareness of leukaemia through the Spot Leukaemia Campaign. She hopes to encourage more people to register as potential lifesaving stem cell donors.
