Elizabeth Ojaba: my story

Elizabeth was diagnosed with a rare form of acute myeloid leukaemia (AML) ten years ago, to then find out she actually had a type of chronic myeloid leukaemia (CML). Here she recounts her story.

My diagnosis

“It all began with a blood test in July 2014. At the time I was 55 years old, full of life, and about to start a new job in Geneva. On reflection, I was experiencing a series of perplexing symptoms—a painful swelling on myleft wrist, prompting a blood test at my GP surgery which revealed I had elevated uric acid levels, indicating gout and rheumatic arthritis and I was prescribed medicines for this but I ended up having several allergic reactions to the treatment which led me to being referred to the Mile End hospital. A few weeks after that, I also started experiencing
unexplained breathlessness during physical activities.

Two days after I got home from my job orientation in Switzerland, I went to Mile End Hospital for my blood test and review appointment. Then, 24 hours later, I received a call urging me to go to St. Bart’s Hospital for further checks. On arrival, I was told to go to the haematology department. The words “Oncology and Haematology” etched on the door set me into panic mode – something was really wrong with me – could it be cancer? Having been previously diagnosed with breast cancer, it was definitely another one of those scary moments.

I sat down with the consultant who suspected that I had leukaemia, but they needed to perform a bone marrow biopsy to confirm this. I was then told that I had AML and, after further investigations,
Philadelphia-chromosome positive AML (a rare subtype which affects between 15 to 90 people each year in the UK). I needed to have chemotherapy and was asked to be admitted immediately to start treatment the next day. As it was a Friday, I requested to be allowed the weekend to sort myself out and to start treatment from the Monday.”

Treatment

“The following two months were gruelling. Constant rounds of chemotherapy left me physically and emotionally drained. The side effects were merciless – hair loss, excruciating mouth sores, constant nausea, and debilitating fatigue. The other aspect I remember with horror was when one of my teeth became infected while still struggling with neutropenia. I developed neutropenic sepsis which nearly took my life. I also experienced allergic complications to my first platelet transfusion which left my mouth, neck and face swollen for three or four days. By this point, with lots of side effects and my neutrophils count staying at 0, I was getting fed up and asked to be discharged. On 5th September, I was finally allowed home under the agreement that I would maintain my isolation. Two days later, when I returned to hospital for a blood test and review, for the first time my blood test results returned a neutrophils count of 0.01. I was ecstatic with joy, jumping up and down and hugging the nurses. My neutrophils gradually improved but hovered mostly between 0.5 and 1.

But, when it all seemed to be going in the right direction, life threw something else in my direction. One month after my discharge, I ended up being readmitted to hospital with neutropenic fever and painful cellulitis on my left foot which made it impossible for me to stand. After this, and other complications, it was also confirmed that my first cycle of chemotherapy had failed. In the following months, further treatment options were discussed, and I was readmitted in December for consolidation chemotherapy. With my blood count literally wiped out again, all hopes for a normal Christmas vanished – it was my first ever Christmas in the ward, but the hospital made it as pleasant as possible with Santa visiting our bed sides with gifts and a special Christmas dinner. By the end of December, my blood counts slowly recovered enabling a discharge on 3rd January 2015.

Unfortunately, following the treatment, it was found that although my molecular level of disease had decreased, my Philadelphia positivity had shot up. It was clear to my consultant that something wasn’t right. In February, the focus became to determine whether I had Philadelphia-positive CML presenting in blast crisis, which would resemble AML, or a rare form of Philadelphia-positive AML. Understanding that would help guide a plan towards having a stem cell transplant, and it wasn’t until a year after my initial diagnosis that my diagnosis was changed from AML to CML. The search for a matching donor then became something to focus on. My family live in Africa so we arranged a test kit to be sent to my sister, who came back as a 50% match which was good enough to give it a go. Unfortunately, luck was not on my side as we were faced with issues getting her Visa application approved for her to come to the UK, but Anthony Nolan found me a 90% match through the stem cell register. I had my stem cell transplant on 17th September 2015 which marked a pivotal moment—a second chance at life.”

Life after my stem cell transplant

“My transplant recovery has, recurring infections, thyroid disorders, blood transfusion-related accumulation of high levels of Ferritin requiring regular and prolonged period of venesections, and the looming worries that my leukaemia would come back. But, despite my many ordeals, two positive things happened to me post-transplant. First, my Post-transplant Clinical Nurse Specialist (CNS) introduced me to move, dance, feel (MDF) at St Bart’s Hospital Maggie’s Centre. Second, she also introduced me to Leukaemia Care, whose group meetings, and webinars I enjoy attending and gain useful insights from. These have been eye-opening and great source of information to keep myself updated about new developments and treatments.

The onset of COVID-19 pandemic was a physically and mentally challenging time, especially for people like myself. Yet, amidst the chaos, I found comfort in pursuing the activities that give me the most joy, such as book clubbing; helping out in Cable St Community Garden; participating in MDF sessions; and using Leukaemia Care’s services. I also attended counselling sessions, where I have learned the best ways to manage my anxiety and stress from living with uncertainty of cancer.

The dreaded fear of my leukaemia coming back reared its head in June 2022, when my Philadelphia chromosome was detected as positive, triggering a wave of anxiety and apprehension. The subsequent months were fraught with tests and uncertainties, but fortunately repeated blood tests have shown that it has returned to undetectable results. As I navigate a web of other health challenges, such as high blood pressure, kidney issues, and cervical spine degeneration, I am reminded of the fragility of life. Yet, despite my difficult diagnosis, seemingly poor prognosis, and hard journey with leukaemia, I am grateful to God for still being here for my loved ones and to continue appreciating all the good things in 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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Welfare benefits

We talk you through state benefits, eligibility and more. It's important to note that the purpose of this webpage is to give an overview of the benefits that may be relevant to you as a leukaemia patient. Speak to our Advocacy team for guidance on personal claims.

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