chat
All through the autumn and winter of 2019, I had a rotating series of flu, colds, chest infections and skin infections which had to be resolved with antibiotics. I have never needed antibiotics before, or a trip to hospital, so it did seem strange to me that I was having these constant illnesses that took ages to shake.
I visited my GP at university every few weeks when my symptoms reoccurred or worsened and was occasionally given antibiotics but with much reluctance. It got to the point where I nearly fainted in the waiting room after a three-hour wait, was refused antibiotics for a worsening chest infection, and cried with frustration on the way to a tutorial. Retrospectively, maybe I should have insisted on further tests (a blood test would have shown the earlier developing abnormalities in my blood), but even though I insisted that these kind of illnesses and infections were truly abnormal for me, I feel like my concerns and awareness of my own body were ignored.
By this point, I had developed other symptoms including aching limbs, bruising, weight loss and a full-body rash. Whilst home for Christmas, I saw my GP who recommended a blood test. Later that day, I had a phone call from my local hospital that told me to get there immediately as I was severely anaemic.
I was admitted on New Years’ Eve after my blood test that very morning. When we arrived, we had barely sat down when a doctor was grabbed and shown my blood results; I was then swiftly cannulated and moved to the serious A&E section to wait for a bed. It didn’t take long to get a bed—through shock and my phobia of needles, I suddenly vomited all over the floor and was very quickly escorted to a bed where I was hooked up to a heart monitor (my resting heart rate was around 140bpm).
I was told on my arrival in hospital that it was almost certainly nothing serious—most likely post-viral fatigue or a cumulation of heavy periods that led to my current anaemic state, so I didn’t consider any kind of sinister underlying condition at that time. Then onn 2nd January, I was told that I had “abnormalities” in my blood cells. This didn’t immediately concern me, though as soon as my parents made the haematologists explain that “abnormalities” in this case was almost certainly cancer made the next 24 hours of waiting for further blood tests the worst thing I have ever experienced. The next morning, 3rd January 2020, I was given my official diagnosis of acute myeloid leukaemia (AML) and moved to UCLH that afternoon; my intensive chemotherapy began less than a week later.
The first consultant I met when I arrived at UCLH was incredibly reassuring and he explained about how I had a team of AML specialists examining my results and tailoring my treatment program for my specific AML mutation. He described my cancer and my chances of a good response to treatment in ways that made my family and I feel informed but not overwhelmed by the information, which was a great help, as I’d only got my diagnosis that morning and we were all still reeling from it.
He described my cancer as being “good risk”—a seemingly paradoxical statement but one that made a lot of sense once my consultant explained that leukaemia is measured differently to other cancers (i.e. not in stages, but in risk groups instead). Seeing as my first question when I got my initial diagnosis was “how long do I have left?” it was refreshing to talk to someone so informed and who had such involvement and had seen amazing results from the treatments this hospital pioneered.
I was told that I “looked well for someone with cancer” but this was something that lifted me up, especially during my second, third and fourth cycles of chemotherapy which I had in ambulatory care in the Macmillan Centre, as it was usually accompanied by a lovely comment from the nurses about my outfit choice that day (dungarees mostly, one of the only items of clothing which are comfortable when wearing a chemotherapy pump for five days).
My experiences during my diagnosis and treatment have been pretty much all positive, especially the medical staff. I have been blessed to have been cared for by such an amazing and compassionate group of people, and I cannot stress how important the nurses in UCLH and the Macmillan Centre have been to my mental health and general approach to chemotherapy. They made me laugh, asked about what I was reading, comforted me when I was in pain and couldn’t see an end to it, and reassured me throughout the whole process.
Similarly, my friends and close family have been absolutely incredible. For the first week of my diagnosis, I had visits every day from friends before university re-started for the spring, and one of my best friends visited every day. They lifted my family up and gave me the strength I needed to begin treatment with the right mindset, and I cannot stress the importance of this.
I would say that the only insensitive comments I received came from wider family members. I understand that a lot of people’s first instincts when they talk to someone who has been recently diagnosed with cancer is to clutch at any kind of cancer-related straw and spew it at you, e.g. “My friend’s son’s girlfriend’s friend had [insert totally unrelated cancer here]… she’s dead now.” It’s not only insensitive but also completely unrelated! I feel like I’ve adjusted my concept of a “good” length of life—80 used to be a standard in my mind, but I think if I reached 40, I would be ridiculously grateful. So, with this greater awareness of mortality and my own medical condition, I don’t need someone telling me to be more aware of death through tragic anecdotes about people who I have never met and who don’t have a similar cancer to me.
Currently, I have finished my treatment (my last dose of chemotherapy was on 16th May 2020) and am in remission. In roughly two weeks, I will have a bone marrow biopsy to see how much leukaemia remains in my body at a molecular level, and I will have blood tests and bone marrow biopsies every three months for the next two years. If I am still in remission after two years, the chances of relapse get lower, so I will have less frequent blood tests and bone marrow biopsies.
I think Spot Leukaemia is absolutely crucial, not just for patients but for GPs and other medical professionals. Looking back, I had every major common leukaemia symptom for roughly three months and, even as my condition worsened in December, a more sinister underlying cause was never mentioned as a possibility.
I understand that GPs have a responsibility to not unduly worry patients, when the majority of the time the underlying cause is not sinister, but I think there needs to be a change in mindset, among both patients and GPs. You never think you will be in the minority who have a serious condition, but I think people need to adjust their assumption that they will always be in a safe medical majority. You never think it will be you until it is, and you have to come to terms with this in a very quick and brutal way.
I will always wonder that, if I had been aware of the symptoms of leukaemia, would I have started treatment earlier? Would I have pushed my GPs harder and emphasised that these infections and length of illnesses were unheard of for me? I was growing more concerned and mentally drained with having to reiterate my symptoms every week in the hope of antibiotics that worked or further tests that would have shown a serious problem in my body. I feel very lucky that I had my blood test when I did, that I started treatment very quickly, and that I have been responsive to treatment. However, if I had my blood test scheduled for a week later, there is a large chance I would have had a fatal heart attack before I ever received test results; during my four-day stay in my local hospital I was in a ward next to resus for the majority of it, emphasising just how ill I had become and how unknown leukaemia was to me.
For our #SpotLeukaemia campaign, Alison (Georgina’s mum) recounts the events leading up to Georgina’s diagnosis of acute myeloid leukaemia (AML). Watch her video below.