Rhianna Lidsey

26-year-old Rhianna thought her breathlessness and bruises were just part of feeling run down and would get better with rest. Less than a week later, she was blue-lighted to hospital where she was diagnosed with acute promyelocytic leukaemia. Here, Rhianna shares her Spot Leukaemia story.

It all started on a Saturday. I was working from home and was getting really breathless and dizzy. My glands were starting to swell, and when I got in the bath that evening, I noticed several bruises across my body (anyone would think I’d gone 10 rounds with Mike Tyson!). I was naive and left it for a few days, thinking I was maybe just worn out and needed rest.
My partner returned to work on the Monday, travelling to Liverpool for five days. I remember telling him I wasn’t feeling great and him and my parents told me to call my GP. So, I did, and they prescribed me antibiotics for tonsillitis. I was stuck in bed, I had zero energy and felt awful.

When I woke up on the Wednesday morning, I realised I had clots in my gums, so I called my dentist and they prescribed me antibiotics for a gum infection. I was taking antibiotics, but I was getting worse. I was so confused, scared and worried. I told myself to let the antibiotics kick in and I would soon be feeling brighter. Then it got worse—my sight started to go in my left eye, things were blurry, and I didn’t know what was going on. My parents had been ‘nagging’ me to call 111 but I was so scared about what might be wrong with me that I begged them not to call.

Friday 15th May is when my life changed dramatically. My mum had had enough and called 111; they said to get me straight to a hospital. I don’t remember much from there. I remember hearing my dad say that he had called an ambulance as I had passed out at the bottom of the stairs. I remember the paramedics telling my mum I had to go on my own to the hospital because of COVID-19. Next thing I knew I was in A&E and they were trying to take my bloods but it was just clotting. I must have fallen asleep, because next I was being woken by a haematology doctor who then said, “Rhianna, I am really sorry, but I have to tell you—you have acute promyelocytic leukaemia. You are very sick, and it is important we get you better very quickly.”

My heart broke. I was alone, in a room with nobody to help me process this information. I had to call my parents and tell them and then I had to call my partner and tell him. My heart was hurting so much, my brain was so confused.

On the Saturday I was rushed to ICU at St Thomas’s, where I was intubated for five days in order for my lungs to be able to cope with the intense chemotherapy I was being blasted with. On admission my white cell count was at 216 and my parents were told that the next few days was crucial. If they couldn’t get my white cells down, I possibly only had a few days left. Day by day my white cell count began to drop and eventually I came off the ventilator and that was the start of my recovery journey. I was moved to Guy’s Cancer Centre, where I spent four weeks. I began taking ATRA and had to have daily blood transfusions or platelet transfusions. My mouth was covered in ulcers and sores and for the first two weeks I was living off yoghurts and jellies as they were soft. My hair also began to fall out in clumps and I was devastated. I remember asking the nurse to just cut it all off to save the heartache of watching it fall out every time I showered. I lost all my independence—I needed help going to the toilet, washing, getting dressed, eating. My eyesight was still bad—I was told I had clotting and haemorrhages behind my eyes from the leukaemia. Of course, because of COVID-19, I wasn’t allowed any visitors for those five weeks. However, the hospital allowed me to see my partner for half an hour one day and my mum for half an hour another day.

I began learning things about my body and about cancer that I never thought I would learn. I learnt my body is stronger than I ever thought, and it isn’t made of glass. I began having eye injections to reduce the swelling and remove the blood from behind my eyes. I slowly started to notice an improvement in my eyesight. I then started consolidation with arsenic and ATRA. I did my initial five days of that cycle as an inpatient at Guy’s and then I was allowed to go home! I was super excited but also so nervous. I had felt so safe in the hospital, knowing there was doctors and nurses there to check my bloods and be there if I needed them. What would happen if I felt really poorly at home? Or what if something was wrong with my bloods; who would know?

It took me a week or so to adjust to being home, but I was slowly getting there. I started having chemotherapy twice a week as an outpatient. At the end of my first consolidation cycle, I had my bone marrow biopsy. I was so nervous and worried about having this, but I knew I needed to have it to find out if the leukaemia was still in my blood. Then it was such a long wait for the results, it felt like forever!

I started cycle two, five days as an inpatient having arsenic every day for five days. My body really struggled with it; I was having a lot more side effects this time around. I had headaches, sickness, extreme exhaustion, joint aches. But I managed it!

And then I was told my bone marrow biopsy results were back… It was clear! No visual signs of the leukaemia. I was so overwhelmed. It had been a tough couple of months, but it was all worth it because the treatment had worked.

I still have to have two more cycles of consolidation and then hopefully will not require any more treatment. With regards to my eyes, they have improved but unfortunately, I have suffered permanent damage and will never regain my full eyesight.

However, I feel more and more positive every day and I’m slowly getting back to some sort of normality. The NHS have been amazing; they saved my life and I will be forever grateful. We are so lucky to have such an amazing health service. My family, partner and friends have been my support system who have made this journey so far a little easier. I love them so much and I could not have done it without them.

I want to raise awareness of not ignoring symptoms. Everybody knows their own body best and if they feel something is not right, they should get it checked out straight away. I can’t help but think, if I went to urgent care when I first became unwell, maybe it wouldn’t have been so serious. I was days away from death because I didn’t know the signs of leukaemia. So, I think it’s so important that people learn to spot the signs.

Welfare benefits

We talk you through state benefits, eligibility and more. It's important to note that the purpose of this webpage is to give an overview of the benefits that may be relevant to you as a leukaemia patient. Speak to our Advocacy team for guidance on personal claims.

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