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“I began to feel unwell back in early August 2018; I was feeling nauseous when eating or thinking about eating and I had this feeling if I had a drink of alcohol too. I was feeling tired, but I put this down to work pressures and everyday life commitments. I thought I might have had a vitamin deficiency, so I decided to visit my GP.
I was reassured by the visit as she did not think it was anything serious but did recommend a blood test. As I was trusting of her response, I did not prioritise the blood test. As the days went by, I began feeling more tired and short of breath if I walked any distance. Subsequently, 10 days after seeing the doctor, I went for a blood test.
Some eight hours after taking the blood test, at 10.30pm, I received a call from the lab to immediately go to A&E as some of my blood counts were very low. My memory of this phone call is so very vivid; I remember getting in the car and telling my husband it could be leukaemia. I’m not sure why I said it other than some information in the back of my head somewhere made me come to that conclusion. I arrived at Heartlands emergency department at 11.15pm and saw a doctor at 5am the following morning.
When he checked my blood test result, he was not overly concerned, however he did say he would need to check with a colleague in another department. An hour later I was admitted to hospital, and it was nearly five weeks before I left. It was then when I met with the oncology staff, and they took more blood and started me on a course of antibiotics. The consultants were very open with what they thought my diagnosis was. They believed I had leukaemia but wanted to carry out more tests to confirm this. From this day, my life totally changed.
Later that night, I was moved to an isolation room (although I didn’t know it at the time) I just thought I had my own room, how lucky was I. When I woke Sunday, I realised something wasn’t quite right with the room as the staff were asking me if I wanted a drink or food through an intercom. This was the first time in weeks I didn’t feel nauseous, so I ordered a breakfast. When it arrived, I was told it would be placed in the hatch and I should get it out from the other side. I was really confused, and I thought this was really odd.
When the doctor came to see me, I told him I was feeling good and had eaten a big breakfast, so they must’ve been wrong thinking I had leukaemia. They explained the antibiotic were likely to be cleaning up any infections I had resulting in me feeling better.
I then had a bone marrow biopsy; the thoughts of that procedure were very scary, and I had to really focus my mind to stay calm and focused. The doctor confirmed acute myeloid leukaemia (AML). My initial reaction was, “Right, let’s get started with whatever needs doing to sort this.” My first chemotherapy started two days later – I had also agreed to take part in a clinical trial as I was willing to do anything to tackle this. The treatment was very intense, and I started experiencing very high temperatures nearly immediately. Within a few days, I also decided to shave my head as my hair was on the pillow every morning.
From September 2018 to March 2019, I had four cycles of chemotherapy. This was having a huge impact on my body and every part of me was affected and when I say everything, I mean all of it! My sense of humour, and my ability to link thoughts and to respond to conversations had all been impacted. I had a bleed behind one of my eyes and as a result had partial blindness for approximately six months, I had pneumonia, deep vein thrombosis and sepsis.
I had periods of a few weeks at home between sessions to give me some needed rest. Although times at home were good, they were also times of great anxiety with frequent infections. I was readmitted to hospital on many occasions, but the two that stick in my head are Christmas Eve and my birthday in February; these were two of my biggest lows.
What added to this anxiety was having to be admitted to other wards when there was no space on Ward 19 and staff in other departments did not have the skills and knowledge to support blood cancer patients. For example, I had PICC lines to assist in getting blood every day and receiving treatment when needed; it was especially important as my veins at this time were nearly non-existent. Due to the treatment, staff on other wards are not trained to use PICC line, therefore it was an extremely difficult procedure for staff to take blood every morning.
In January 2019, I was feeling very low, and I decided I needed something to focus on in the coming months. With the support of my partner, son, and daughter, I wanted to organise a charity event in July for the Ward 19 charity. I had been with my partner for 23 years at this time and whilst we talked about getting married, we never got around to organising it. So, in my head, I was thinking of all the family and friends that would be coming to the charity event, I wanted to turn it into a surprise wedding. We only told very close family that this was our plan. When the event room was full of our guests, we entered the room in our wedding outfits and surprised everyone. We also raised over £2,000 for the charity.
Some three weeks after the wedding, I had an appointment at the hospital. When I arrived, I was told my last bone marrow aspirate showed mutation and I would need a stem cell transplant. I was readmitted for FLAG (fludarabine, cytarabine and filgrastim) chemotherapy, which resulted in some horrendous outcomes. I had heart failure – my heart function was only at 25%. I was too weak to have the stem cell transplant, but over the next few months my heart function began to improve, and I was able to have a stem cell transplant in February 2020.
My youngest sister was my donor, and we were a 100% match. I had my transplant and was in hospital for three weeks. I made steady progress over the next few months, but I was experiencing graft versus host disease (GvHD) which mainly affected my skin. I was also still struggling with my balance and my ears were still affected.
I am now over two years post-stem cell transplant and there are no signs of disease. I am still taking medication and will need to take antibiotics for the rest of my life.
Spot Leukaemia is important because most people, including myself, believe this happens to others and not me. The campaign raises awareness which can then help someone get the treatment they need earlier. As someone with no medical experience, I would trust my GP and the emergency doctor in A&E, but clearly, even within medical practices, more awareness is needed. I was lucky that my GP recommended a blood test at my first visit, but I could just as easily have been sent away without one as my symptoms at the time I went to get advice were not typical leukaemia signs.”
Majella’s symptoms of leukaemia were:
• Fatigue
• Shortness of breath
Are you currently dealing with similar symptoms to Majella’s? If so, contact your GP and ask for a blood test.
For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org.uk
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