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The lead-up to my diagnosis
In January 2019, I attended a routine doctor’s appointment to request a repeat prescription. I mentioned to the doctor that I didn’t quite feel myself. I told her I felt a bit pale and had dark circles under my eyes and that perhaps I was anaemic. She told me to try incorporating more red meat into my diet and to take some iron supplements and, if I didn’t feel better within a few weeks, to come back for a blood test. In the end, I never went back, partly because I adapted to my new, lower energy levels and partly because I became so busy with work and preparations for moving to Asia.
It wasn’t until mid-April that I knew I had to go back to the doctor.
“Mum, I think I have leukaemia.” On Sunday night, I was WhatsApping my mum from Hong Kong. “Of course you don’t have leukaemia! You just went rock climbing!” she replied.
I had a doctor’s appointment on the Monday because I was getting concerned about some strange bruising on my legs. It had become so bad that I felt quite embarrassed to show my legs and I thought my colleagues might wonder what I had been up to. I had been wearing long trousers to work in the searing Hong Kong heat to hide the bruising.
PHOTOS ABOVE: ALEX’S BRUSING
I had done some Google searching and I had worked out there was something wrong with my blood. I noticed that I had most of the symptoms of leukaemia—paleness, fatigue, repeated infections, joint pain, night sweats and heavier periods—except for unexplained weight loss. I can’t have cancer if I haven’t lost any weight, I thought to myself.
On Saturday, I had been rock climbing with a friend and then I’d stayed out partying with some trainees from other law firms until the early hours. I was living in an area of Hong Kong known as Mid-Levels. As the name suggests, Mid-Levels sits above the Central district of Hong Kong. To travel between the two, there is an escalator system that people ride. The escalators are switched off at around midnight, meaning my nights out almost always ended with a 15-minute uphill walk home. On this particular evening, by the time I reached the top of the hill I felt like my lungs might explode. I had to lean against a wall to catch my breath. Standing there at 3am, breathless and in pain, I made a vow to myself: “I must get back in the gym – I am so unfit.”
When I first went to the GP in Hong Kong, his initial reaction was that it was clear there was something off kilter in my blood. He thought it was probably something to do with my contraceptive pill and he warned me that he might ask me to stop taking it for a while, then gave me a blood test.
Diagnosis day
Fast forward to Tuesday, the morning after my doctor’s appointment. My work mobile started ringing at 9am sharp. It was the doctor’s surgery. “Where are you, Miss Simpson? Would it be possible for you to come to the surgery?” “Yes, that’s fine – what time?” I replied. “Immediately.
The doctor has requested to see you urgently.” In that moment, I just knew that my world was about to change. A colleague that I shared an office with had overheard the call. “What if they’re about to tell me I’ve got leukaemia?” I fretted. “Oh, don’t be so silly. Have a think about where we should go for lunch today,” he quipped.
The moment the doctor told me that I had acute leukaemia wasn’t how I had imagined it would be. It wasn’t like it is on TV: I didn’t lose my sense of hearing or freeze with terror, I just started to cry and nod and I thanked the doctor for his help. I felt sorry for him, that he had had to begin his day by delivering this catastrophic news to a young woman. I wondered how he had decided which phrase to use— “It’s not great news today.”
When I left the surgery, I knew I had a difficult call to make—I needed to tell my mum. More than anything, I needed to hear her voice and I needed her to tell me this was all going to be okay. But it was 3am local time for her, and I knew that what I was about to tell her was going to change her world forever too. I decided to give her another few minutes sleeping in blissful ignorance and I hid in a doorway sobbing. Some workmen were staring at me. It was the loneliest moment of my life, standing 6,000 miles from home and carrying the burden of this earth-shattering news… alone.
My mum has since told me that, as soon as she saw her phone ringing, she knew what I was about to tell her. The scream that she let out when I told her it was leukaemia is something that will haunt me forever. “Girls like you don’t get leukaemia,” she cried. To this day, she still struggles to come to terms with my diagnosis.
Her immediate advice to me was to go and be with someone. Having just moved to Hong Kong seven weeks earlier, my only friends were fellow trainees from other law firms, all of whom were at work in various tower blocks across town. I decided the best thing to do was to go back to work. I tried to sneak in without anyone noticing me, but a colleague in the next office clocked me. She knocked on my office door; she had come to ask for my help with a new project. She found me sobbing hysterically at my desk. “Alex, is everything okay? Would you like to talk about it?” I nodded gratefully. Thinking back on it, she was probably expecting to hear that I was having boy trouble or that an elderly relative had taken ill. “I just came back from the doctors. I had some bruises on my legs and they tested my blood and they said I have acute leukaemia.” The colour drained from her face. “Okay. Stay right here. I am going to go and make you a cup of tea. It’s all going to be alright.”
The news slowly filtered through my team and soon my supervisor was in the room, expressing his shock and support. He told me not to worry about the project I had been working on and asked if I needed anything. I had another hour and a half before my appointment with the specialist and the last thing I wanted was to sit at my desk thinking and googling acute leukaemia. So, I asked him if I could have his comments on the drafts I had sent him the night before, because I wanted to stay busy.
A colleague accompanied me to my first consultation with the specialist, Dr Herman Liu. Herman has one of the kindest faces you will ever see, a soft tone and a warm smile; I felt safe the minute I met him. After I had explained my symptoms to him and he had examined my bruising and my spleen, he started to teach me the terms that would become so familiar to me over the coming months: “white blood cell”, “haemoglobin”, “platelet”, “stem cell”. He explained to me that, looking at my blood results and my symptoms, he was certain I had a form of acute leukaemia, but that he would need to take a bone marrow sample to diagnose me more precisely. I burst into tears. I had heard this procedure was painful.
One thing that Herman made crystal clear to me was that, in that moment, I was in danger; this cancer was aggressive and needed to be treated immediately. My platelet count was so low that if I banged my head or fell over, the likelihood was that it would be difficult for medics to control the bleeding and I could internally bleed to death. “But I was rock climbing on Saturday!” I exclaimed. “Well it’s a good job you didn’t fall off the wall,” he smiled. He explained that I needed to go to hospital right away. “Okay – I’ll just pop back to my flat and get some stuff and then I’ll go straight there.” He smiled again, and said, “You need to go right now. I can’t risk you falling over on the escalator.” This was the moment I realised just how serious this situation was.
I got to the hospital and that’s when things started to get a little blurry. The reality of what was happening to me started to dawn on me and I suddenly felt very emotional and frightened. I am glad that, in that moment, I didn’t know that I wouldn’t leave again for 31 days.
Over the next few days, I was introduced to procedures that would become routine by the end of the year: blood transfusions, platelet transfusions, cannulas, the insertion of a PICC line into my arm, bone marrow biopsies, pills upon pills, IV antibiotics, CT scans and chemotherapy.
I started chemotherapy three days after my diagnosis of pre-B-cell acute lymphoblastic leukaemia (Philadelphia negative). I had a throat infection when I was diagnosed, and Dr Liu wanted me to be as healthy as possible when I started treatment. He put me on a course of high-dose steroids, which started working to clear my cancerous cells while the antibiotics grappled with the infection. I didn’t feel scared of chemotherapy; I just wanted to start killing those cancer cells. For the first few days, I didn’t feel any different, but things changed on day four. Under the Hyper-CVAD regime, day four consists of a 24-hour drip of doxorubicin as well as IV vincristine. This completely floored me. All I wanted to do was sleep, but I was also under strict instructions to drink three litres of water per day. So, I would wake every 40 minutes or so to pee and then drink, and each time it would become harder and harder to make the journey from my bed to the bathroom. The treatment made me feel worse than the cancer ever did. Eventually, I ended up fainting from exhaustion whilst attempting to shower.
PHOTO ABOVE: ALEX IN HOSPITAL
Hair
PHOTO ABOVE: ALEX’s HAIR LOSS DUE TO TREATMENT
My mum arrived around 10 days after I was diagnosed. She is a foster carer and had to make arrangements for my foster siblings to be taken care of, so she couldn’t just drop everything and fly to the other side of the world. By the time she arrived, I was starting to emerge from the deepest depths of my first round of chemotherapy. A few days after her arrival, I woke one morning to find some strands of hair on my pillow. I tried not to panic, but I knew this was the beginning of the end for my long locks. When you’re told you need chemotherapy and that you will likely lose all of your hair, a part of you wonders whether you might be that unicorn chemotherapy patient and miraculously get to keep your hair. That’s why I didn’t put any contingency plans in place: I didn’t organise for a hairdresser to cut it shorter, I didn’t order any sort of scarf to cover my head and I didn’t really mentally prepare for what it might be like to watch my hair fall out. This remains one of my biggest regrets.
When it started to fall, it snowballed very quickly. By the end of the first day, I had lost four gigantic balls of hair the size of guinea pigs. I became increasingly distressed. When my mum washed my hair (because I was still too weak to shower completely alone), large clumps would roll down my body and stare back at me from the plughole. Even if I just sat perfectly still, my hair would almost take on a magnetic quality and clump together into a dreadlock before coming loose at the slightest touch. I would cradle balls of hair in my hands and weep with frustration and anger and heartbreak. My mum would hug me and try to calm me, but I was beside myself. I just didn’t trust that it would ever grow back, that I would ever feel like me again. It was as if a part of me had died. Losing my hair was hands down more traumatic than being diagnosed with an aggressive blood cancer aged 25.
By the third day, I accepted that it was time to brave the shave. I figured that shaving what was left of my hair into a buzz cut had to be less traumatic for both me and my mum than sitting there watching long strands fall away. I shaved it down to a number three and after that I didn’t notice the rest of it falling away.
A few months later, my hair started to grow back. Before my stem cell transplant earlier this year, I went to my local barbers and had it shaved off all over again. The second shave felt empowering: my mum and I laughed and joked our way through it, before going into town for a coffee and a browse around the shops. Now I see treatment-induced alopecia for what it truly is: a temporary side effect of a life-saving treatment.
Returning to the UK
While my mum was in Hong Kong, we started planning how I could continue my treatment in the UK. My mum lives in North Wales so we identified The Christie NHS Foundation Trust as the best option, both in terms of reputation and geography. I had private medical insurance through work, so I was in a position to choose my consultant. We worked with Dr Liu to find an appropriate consultant, with Professor Adrian Bloor being our top choice. Dr Liu liaised with Professor Bloor, who accepted me as a patient. One of the junior doctors on my ward once described Professor Bloor as “an encyclopaedia of leukaemia”. I trust him with my life.
I flew home in late May, with samples from my bone marrow in my hand luggage and drugged up to the eyeballs on tramadol. I had to be wheeled through Hong Kong International Airport in a wheelchair because I wasn’t fit enough to walk to the boarding gate with my hand luggage. Quite the contrast with the girl who had arrived a few months before with half of her life in a few suitcases…
In the first month or so after my return to the UK, I really struggled to accept my new reality. My mum kept telling me I was doing too much; I got angry with her because I thought she was being overprotective. Of course I could go for a jog on the beach, I always jogged on the beach. Of course I could walk to the shop, it was only down the road. Of course I could manage the two flights of stairs up to my bedroom. Eventually, I saw for myself that the sad truth was that these simple things that I used to take for granted now completely exhausted my body. A walk to the shop would result in a nap. My first (and only) jog on the beach left me in a lot of pain.
In those early days, I also developed this paranoia that my entire body was wracked with cancer. If I felt the slightest ache, my mind would start racing. Eventually I went into complete meltdown in a consultation with Professor Bloor. “Do you have any questions?” he asked, and I just crumbled, telling him I was convinced I had cancer in my spine and that if he managed to fix me, I wasn’t sure how long I would stay fixed.
Less than a week after I had landed, I embarked on my second round of chemotherapy, this time under the UKALL14 regime. It would be my second of four rounds in four months. Considering the brutality of chemotherapy, I think I have had a relatively positive experience of it. There have been pockets of time where I have felt as if I am dying and haven’t been able to get out of bed, but these moments are in the minority. My body has bounced back astonishingly quickly from the deepest depths of treatment and for that I am grateful.
Immunotherapy
I achieved remission in early May 2019. However, more sensitive tests showed that I still had some minimal residual disease (a fraction of a percent of leukaemic cells). This put me at higher risk of relapse and is the reason I needed a stem cell transplant. My consultant wanted to eliminate as much of this residual disease as possible, so from September I had immunotherapy with a drug called blinatumomab. Immunotherapy is a fairly novel form of cancer treatment. This particular drug is specifically for people with my sub-type of ALL and was licensed for use in the last few years, so I feel incredibly lucky to be able to benefit from it. It works by binding my white cells with any residual cancer cells, which improves my immune system’s chances of killing them. Thankfully, the drug worked for me and after my second cycle my test results indicated 0% leukaemia.
The beauty of immunotherapy is how little it affects your quality of life: although side effects are possible, mine were minimal (the odd headache, a slight tremor in my hand in the first cycle and a low white cell count, leaving me exposed to infection).
Pre-habilitation
Once I had finished chemotherapy, the focus shifted from resting to steadily building up my fitness again. I was told I should get as fit and strong as possible to put myself in the best possible position going into my transplant. I got a FitBit to measure my progress. I started off by power walking. Then I started climbing steep hills near my house, parking further away from things so that I had to walk a bit further, purposefully leaving things in my bedroom so I would have to clamber up to the second floor to get them. After a few weeks, I felt ready to try jogging here and there on my walks. Then I joined my local ParkRun and on Christmas Eve I completed a 7km run around the Great Orme in Llandudno.
People would often ask me how I motivated myself to go out running on cold, rainy November mornings. Becoming unfit was one of the sacrifices I had to make in order to save my life, but accepting the sacrifice was hard: ‘I was young, fit and healthy a few months ago, how come I’m not allowed to participate now?’ When you have felt such a sense of frustration, exclusion and injustice, cold and rain are no obstacles.
Stem cell transplant
In February 2020, I had an allogeneic stem cell transplant from an unrelated donor. The transplant itself was very straightforward (a 30-minute blood transfusion), but the treatment I needed to prepare my body to receive my donor’s cells was brutal and I spent 26 days in hospital. Once again, I had high-dose chemotherapy, along with total body irradiation and complete immunosuppression. Once again, my hair fell out. Once again, my body became so weak that simple tasks such as showering and even sitting up in an armchair became physically torturous. The transplant presented novel challenges, too: I was unable to eat for several days due to blistering in my mouth and throat, so I needed a feeding tube and was eventually fed nutrients through a new PICC line in my arm, my fourth line in 10 months.
In the weeks after I left hospital, short walks felt like half marathons and I spent a lot of time sleeping, resting and being readmitted to hospital with infections. Since then, I have gradually rebuilt my strength and I am well on my way to being fitter than I was before I got leukaemia. I hope that some time next year I will be able to train for a half marathon.
The emotional impact of blood cancer
I am also taking steps to ensure I recover mentally too. Now that my treatment is coming to an end, learning to trust my body again after it failed me so significantly feels daunting and I often struggle with anxiety about scan results and the fear of relapse. Making plans months in advance frightens me because I’ve been living in a bubble of uncertainty for over a year. Each day I try to remind myself that all any of us truly have is the moment that we are living in, and so I try to keep a constant focus on the present and the things that matter to me in each day or week.
It might sound strange but I also feel sad about spending less time at The Christie. The staff there have become friends to me and I associate the hospital with safety. If my consultant tells me he’ll see me again in two or three weeks, my first emotion is always disappointment, followed by apprehension at the prospect of going so long without a check-up.
Reflections
At the beginning of this journey, I felt a deep anger towards my own body; I felt betrayed by it. I still have moments where I feel this way, but now I also feel grateful to my body: for enduring repeated poisonings and invasions; for starting to work again once the cancer had gone; and for cooperating when I decided to get fit again. There is a lot of rhetoric about the things cancer takes away from you, but I truly feel that blood cancer has given me more than it has taken from me.
People often tell me how well I look, but that makes me feel positive; I’m relieved to still look like myself despite the intense and often torturous treatment I have had in the past year. And I do feel incredibly grateful that my cancer is well researched, well understood and that there is a prospect of a cure.
However, I sometimes feel frustrated when people tell me how “brave” I am. I know that they mean well, but what they don’t seem to understand is that I haven’t had any choice but to accept what has happened to me and the steps I have needed to take to survive. At every stage, due to the aggressive nature of my cancer, the options have been: (1) accept the treatment; or (2) die. People often mistake survival instinct for bravery, but when I am shaking with fear because I’m about to have chemotherapy injected into my spinal cord or have some bone marrow removed from my hip, I never feel brave.
Due to their vague nature, it can be all too easy to find excuses for the symptoms you are experiencing. And if, like me, you’re used to working long hours and burning the candle at both ends, fatigue, paleness and a drop in fitness aren’t particularly noteworthy changes. I’ve heard quite a few stories about people being initially turned away or misdiagnosed by GPs. It is concerning that even medical professionals can miss the leukaemia warning signs. My message to anyone reading this is simple: you know your body better than anyone else, so if you feel something has changed, please do not hesitate to insist on a blood test. As my cousin, whose husband has chronic leukaemia, said: “the blood doesn’t lie”.
