22 May 2024

‘Life Part Two’ – Leila’s AML story

“I attended the pharmacy twice, rang 101 around four times, (as I kept trying to make GP appointments but there were none), attended the walk-in clinic twice (but was turned away once) and attended the GP twice…….. I was desperate to get to the bottom of what was wrong with me but didn’t feel supported by the system.”

Leila during treatment

In 2022, former pub manager Leila Bolton was on the brink of a huge life change. At the age of 42 she’d decided to leave her 20-year hospitality career and retrain as a lawyer. She’d finished her law degree at Hull University and achieved a First. She had her place on a legal practice course lined up and was doing her first work experience placement in a law firm. But in April Leila started to feel poorly.  

“I’d been having mild headaches for about two weeks but managed them at home,” remembers Leila, 46, who lives in Hull. “I had also been suffering with a three week-long very heavy period. Then I began to get a rash on my legs, which I’d put down to a reaction from a bite. I visited the pharmacy to get treatment, but nothing seemed to make it any better.” 

Leila’s next, and more alarming, symptom was periods of numbness in her face. “At this point I contacted my GP but there were no appointments, so I called 101 for advice. They made an appointment for me at a walk-in clinic. The doctor there thought that I had sinusitis. I was given antibiotics, but they made no difference, so I went to the GP, where I’d now managed to get an appointment. By now I was beginning to feel very tired and dizzy at times, and I’d lost weight. The GP said that I must be run down due to being in the final stages of completing my law qualifications. They asked if I wanted to be referred to the Ear Nose and Throat department at Castle Hill Hospital in Hull. I said yes as I didn’t want to drop out of the system but didn’t really understand why ENT. When I got there they didn’t understand why I had been referred to them. There was no resolution.” 

Leila during treatment

By that time Leila had developed unexplained and severe bruising on her body, an eye infection and severe fatigue. Again she couldn’t get a GP appointment so went back to the walk-in clinic where they turned her away as they had too many people waiting. She rang the GP – they asked her to send photos of her various symptoms as there were no appointments. As she was leaving the ENT department the GP texted and said they would book her in for a blood test.  

“When I eventually had the blood test I passed out in the surgery minutes afterwards. The doctor put it down to me not having had a blood test before.” 

That same evening, 21st June 2022, Castle Hill Hospital that rang Leila. They said her blood test showed she was so anaemic that she needed an immediate blood transfusion. She and her partner went straight to the Queens Medical Centre in Hull and it was there the consultant came to Leila’s bedside and gave her the devastating news that she had suspected acute myeloid leukaemia (AML). He said she would need to stay in hospital for a bone marrow biopsy to confirm the blood cancer.  

“I was pretty shocked but initially very calm. I am not sure I took in the magnitude of it all at that time – and in a way I’m glad! I tried to hold it together as I could see my partner weeping. I was worried about breaking the news to my mum, who had been so worried about me throughout all my symptoms. I was also worried about my future. I had just finished a law degree. I was on work experience with a law firm and didn’t want to let them and myself down. But I had no choice.” 

Four rounds of intensive chemotherapy across seven months followed for Leila, with periods spent at home between each treatment. “My mum, who lives 113 miles away, moved into my house to support me and my partner. The three of us formed a very tight and closed circle to tackle it together. I will never forget how lucky I was to have that support at that time.” 

Leila in hospital

Chemotherapy was gruelling for Leila, who lost her hair and developed painful dry eyes. During the first round she lost her appetite and was fed intravenously, leaving her bed-ridden with a two stone weight gain from fluid swelling her body, arms and legs. The third and fourth rounds proved to be the worst, with vomiting and debilitating bone pain. 

“I had always been very fit and active. As a pub manager I’d be on my feet all day every day and moving barrels around. But this was a complete change and a terrible roundabout with each symptom triggering the next. The chemo stopped me from eating, by not eating enough protein I developed the swelling, I then couldn’t move so I was bed-ridden, and that meant my shoulders seized up. It was a dreadful time, but I trusted what they were doing.” 

Leila went into clinical remission after the first round of chemotherapy, and has now completed her treatment, although she still needs regular blood tests to watch for any return of her leukaemia. “It is always in the back of my mind that relapse could be around the corner but I try to focus on the positives and move forward. As much as I am trying to return to normal, I do get very tired. I have some overhanging issues from the chemotherapy but am generally very optimistic about the future. I feel that these issues are minor in comparison to the situation I was in.” 

Leila managed a relaxing holiday in Corfu with her mum and partner in the summer of 2023. Having deferred the legal practice course she was supposed to start in September 2022, she is now halfway through and is delighted to have secured a contract as a trainee solicitor with the law firm Rollits LLP, which she will start in September 2024. 

“I did my interview in between rounds of chemo. They were so kind, they sanitized everywhere and everyone wore masks. I’m so grateful to them for helping me get to and do the interview. When I came out of hospital I couldn’t read a sentence. I had a first class law degree but struggled with the crossword. Now I’ve retrained my brain back again and have got a second chance.” 

Leila after her AML treatment

Looking back on her experience of trying to get a diagnosis, Leila feels the system failed her. “I attended the pharmacy twice, rang 101 around four times, (as I kept trying to make GP appointments but there were none), attended the walk-in clinic twice (but was turned away once) and attended the GP twice. This was all in a matter of the last four weeks before I eventually was seen and diagnosed. I was desperate to get to the bottom of what was wrong with me but didn’t feel supported by the system. Once admitted to Castle Hill, and getting the diagnosis, that was a different story as things started to move very quickly. When I was given the suspected diagnosis I asked the Macmillan nurse ‘how long can you walk about with this?’ and they told me that left untreated it could kill you in three months. The fact that I had been unwell for at least eight weeks and trying to get medical help is terrifying looking back.  

“The whole experience does change your perspective on things though. I’m definitely not the same person. What I’ve gone through is massive, and now I want to crack on with life. I’ve have been working towards a career change from hospitality to a becoming a solicitor since 2019. The AML diagnosis very nearly put a stop to the rest of this journey. Had I not had the support of my family I don’t think I would have been able to continue with this. I hope that I can now remain healthy and get on with what I bill as ‘Life Part Two’!” 

Leila after her leukaemia treatment