I am a married 38-year-old mom of two (11 and 6 years old) and was diagnosed in August 2018, aged 37, with acute myeloid leukaemia (AML) with BCOR and RUNX1 gene, which gives a poor prognosis.
It’s hard to put a date on when symptoms started. I knew something wasn’t quite right for about a month before my first trip to the doctors.
It started as general tiredness, headaches and lack of energy. I was used to running and distance walking but found myself unable to complete my weekly exercise regime, or having to stop more often due to being breathless. I was in bed before 8pm most nights, sometimes earlier, even straight from work, leaving my husband to look after the children. I just thought maybe I was run down. However, my symptoms gradually got worse, and it got to the point that even going up the stairs would leave me out of breath and my head pounding. I also had very heavy periods, to the point I thought I was having a miscarriage. I had night sweats and bleeding gums too. Looking back, I had all the classic symptoms and they were glaringly obvious – I just never connected the dots.
I went to see my GP three times over a 4-6-week period, but that was mainly to do with my heavy periods and some painful haemorrhoids (which I’ve since learned is a lesser known symptom of leukaemia). Although I mentioned my other symptoms at my appointments, it wasn’t until my periods got so bad that I couldn’t leave the house that I insisted on a blood test. I had a blood test on the Monday morning and received a call about 10:30pm from an out-of-hours doctor asking me to go the hospital right away.
On admittance to Birmingham Heartlands Hospital my haemoglobin levels were just 36. The doctors could not believe I was still standing, and I really believe I was only days away from death. I had two blood transfusions straightaway. It was a bit of a blur at first. I fell into a bit of a depression and longed to go home. I couldn’t eat and cried non-stop. I kept the curtains around my bed closed and deterred visitors and phone calls. I remember a doctor telling me I needed to accept my situation as it was a long road ahead. Although it sounds blunt, it was what I needed to hear to be honest, and I knew I had to fight this head on, if not for myself then for my children.
My leukaemic blasts were 85%. I signed up to the AML19 trial, but after a six-week stay in hospital I was told my first round of intensive chemo was unsuccessful and blasts were still at 55%. This, in some ways, was worse than the initial diagnosis as I realised that maybe I wouldn’t beat this. I was told my chances of survival were low, and that a stem cell transplant (SCT) was my only hope. I began FLAG-IDA chemotherapy, which thankfully got me into remission, and I had a SCT on 1st December with my younger brother as my donor. It was an incredibly difficult time; I was unable to see my children for weeks at a time due to being in isolation and I was so susceptible to infection. I missed my little boy’s first day at school and 5th birthday. It was incredibly tough on my husband who was working full-time, visiting me in the evenings and caring for two young children.
I contracted fungal pneumonia and numerous bacterial infections when neutropenic. I vomited so much after the first lot of chemo I burst blood vessels in my eyes and got deep vein thrombosis from my Picc line. Following the conditioning chemotherapy for my stem cell transplant, I had terrible mucositis (painful inflammation and ulceration of the mucous membranes lining the digestive tract) which left me unable to speak or swallow. I lost my fingernails as well as my hair. However, as bad it was at the time, I look back now and feel so lucky. All the staff were all absolutely amazing and really gave me the best possible treatment. I never doubted that I was in great hands.
My husband, friends, family and work colleagues were all amazing. I was shocked how everyone pulled together for me. The little things meant so much—having a friend to hold my hand as they shaved my head, my coffees and cakes, friends of friends sending small gifts and messages of support from people I hadn’t seen for years—it all meant so much. I managed to be discharged just a few days before Christmas in 2018 to spend Christmas Day with my family.
I’m in remission and back to work part-time after 18 months off. Although I’m suffering with chronic Graft-versus-Host-Disease (GvHD) in the eyes, mouth, skin and gynaecological system, I’m under treatment for that and I’m doing really well. Things are different: my appearance has changed, I’m more tired these days, I’m also now post-menopause and having to take HRT. I have monthly venesections to reduce the high iron levels in my blood, a result of the many blood transfusions I received. I try to make the most of each day and ensure I make as many memories as possible, as I feel my future is now uncertain. The fear of relapse and anxiety is always in the back of my mind. The COVID-19 situation is a stark reminder that my immune system is still vulnerable and I’m not the same person I was before. I miss the carefree life I had before, although each day that passes this feeling slowly eases.
A friend I met in hospital once told me she looks to me for inspiration as she continues her treatment. This was amazing to hear and I hope by telling my story I give others that hope. One thing I craved whilst in hospital was positive stories from survivors. I remember reading a quote ‘One day you will tell your story of how you’ve overcome what you are going through now and it will become part of someone else’s survival guide’. This is one of the reasons I wanted to share my story.