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My diagnosis
“It took me about three weeks to visit my GP when I realised that I didn’t feel my normal self. I had been in Portugal at the start of the Easter holidays with a university society with which I am involved, and on the plane back to the UK, I noticed my back was aching. I just put it down to the fact that I’d had a very busy week. After the trip, I was quite ill, tired and run down, which again I put down to having been so busy. I recovered from this illness but was ill a further two or three times in the space of a few weeks. I also noticed some small bruises on my arms, and had a really heavy period which was not normal for me. One of the most annoying symptoms was that I had very itchy skin with no rash, which I remember thinking was strange.
When I got back to university after the Easter break, I started getting migraines with an aura, which is something I had never had before in my life. Throughout these few weeks, when all of these vague symptoms started accumulating, I was also constantly tired, sleeping for 10 or 11 hours each night, still needing a nap during the day, and would get breathless doing things I never used to get breathless doing.
A few years prior to all this, I had been given iron tablets because I had iron deficiency anaemia. I took the tablets for a while but eventually stopped because I felt I no longer needed them. Some of the same symptoms, particularly the tiredness, breathlessness, and heavy periods were now happening again, which is one of the reasons I decided to visit my GP. The doctor I saw agreed that it sounded like iron deficiency, so gave me a link to book a blood test at the local hospital. This was on a Friday, so I booked my blood test for midday the following Monday.
That Monday, I went to the hospital to have my blood test and felt fine afterwards, until I walked to the bus stop and had the worst migraine I’d had so far. I felt extremely dizzy because of the pain and visual disturbances, so had to find a bench and drink lots of water to enable it to subside. I got back to my university house and a few hours later got a call from my GP saying there were abnormal cells in my blood and I needed to go back to the hospital the next day for some further tests. I asked her what ‘abnormal’ meant and she said she didn’t know, but I should find out tomorrow. This left me very distressed as my mind instantly thought of the worst: cancer. My very kind housemate calmed me down and came with me the next day to my appointment, where I had more blood tests and a bone marrow biopsy that I sobbed all the way through. The next day, Wednesday 26th April 2023, within 48 hours of having the initial blood test, I got my diagnosis of acute myeloid leukaemia. My mum and step-dad drove five hours to my university to help me pack up some belongings and bring me back home. I had to hurriedly tell my housemates what was happening and say goodbye to them. That remains one of the worst days of my life. We drove back to my hometown pretty much in silence.”
Treatment
“The next day we went to the hospital where I’d be receiving treatment and I met some of the amazing team that were going to be looking after me. I had 15 vials of blood taken and then began chemo the following week. When I was admitted, I had my PICC line inserted. My platelets were extremely low because I had so much leukaemia so my body ended up rejecting the line. This made my arm swell up and gave me a huge dark purple bruise across the entire underside of my left arm. It was a really unnerving way to start treatment. After a couple of platelet transfusions, the line was taken out and another one was put into my other arm so treatment could resume.
I took to chemo relatively okay, but had a few nasty infections over the first two courses – one meant I stayed in my single hospital room for almost seven weeks without going outside of those four walls once. The other one rendered me unable to walk by myself for a few days which was horrible. I lost a lot of weight each time and I also had extremely itchy skin that no creams or antihistamines seemed to help – it felt like I was on fire at times and nothing would resolve it. But as a 20-year-old girl, one of the hardest parts for me was watching my hair start to fall out. I brushed it every day and I remember the day I noticed more hair than usual in my hairbrush, I couldn’t stop crying. I watched it fall in huge clumps for about a week, but then could no longer stand the itchiness and soreness on my head. It was now so thin that it didn’t even feel like my hair anymore, so I just decided to shave it all off.
During my second round, my genetics results came back and I was told I had the TP53 and FLT3 mutations linked to a very poor AML prognosis. Initially, the decision was made to give me a stem cell transplant. This, of all I’d been through so far, was extremely scary. I had already been told I had the most fatal type of leukaemia due to these mutations and then I learned there were no 10/10 matches for me in the entire world. Because of my British and Greek dual heritage and some rare white blood cell genetics, there was only one possible match for me. But despite him being lined up, the donation fell through. The registry was re-searched and three other potential donors were identified. I was given a bridging round of high-dose cytarabine to keep me in remission and buy some more time for a transplant to be organised.
However, a huge but positive curveball was then thrown at us: my bone marrow sample from Guy’s Hospital in London came back and I was MRD negative. Because of this, my consultants suggested I could forgo the transplant and just finish my treatment with one more chemo round. This is where I’m at currently – confused about what to do, what’s going to happen and what’s for the best. I know we’ll go down whichever route can provide the best possible outcome for me, but I feel as if I am on the massive rollercoaster that all cancer patients experience. It has unsettled me a little. I understand how big a process a stem cell transplant is and I know it’ll still be an option if I were to relapse, but I’ve struggled all the way through my ‘journey’ giving over control of my life, and this is just another instance of that. I trust it’ll all work out in the end, and things will become much clearer.”
Living with leukaemia
“For now, I’m still undergoing treatment. I’m currently at home, recovering from my bridging round, and going into the hospital two or three times a week for blood tests. I am absolutely cherishing my time at home. Whichever route we go down, I’ll be having more treatment, either in the form of another chemo round or a stem cell transplant. Keeping positive is hard at times, but I stay optimistic for the future by making plans and having things to look forward to.”
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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