Mphango’s story: Diagnosed with leukaemia after starting a new career

Mphango was diagnosed with leukaemia at 24 years old after noticing her eye had popped out slightly. After various tests, including a CT scan and biopsy, she received the diagnosis and told she would need chemotherapy and radiotherapy treatment at the Royal Marsden hospital in Sutton.

Mphango had just moved from her hometown in Bradford to London to begin her career. Treatment meant having to put her career on hold and she says she lost some of the independence she had started to build.

Throughout her treatment, Mphango was supported by Young Lives vs Cancer Social Worker Hannah who helped her to navigate through her treatment, including providing grants to help with the cost of travelling to and from hospital.

“I realised my left eye was popping out a little bit more than my right eye. I called 111 but unfortunately kind of dismissed it, they told me I’d get a GP callback but that never happened, they sent a message saying they were closing the case.

“We went to A&E that same night and they saw me after loads of hours of waiting, they said it was a stye and sent me home told me to put some hot compressions on it and said usual lines of ‘if it gets worse, come back’. It progressively got worse as the weeks went by. I visited numerous different professionals, I went back to A&E two times after the initial time I went, I went to my GP got an emergency appointment and I went to specsavers to try and find out what was going on with my eye, it just kept getting bigger and pushing out of the eye socket more and more. Nobody could diagnose me, people kept saying it was a stye, I had no blood test or CT scan done, I wasn’t referred to a specialist so for about three weeks, my eye continued to get worse and it became excruciatingly painful.

“I was also moving from Bradford to London in the midst of all this so I was going back and forth trying to sort out what was happening but also trying to sort out leaving so I ended up coming down to London. I came to croydon and on that day that I moved my friends were like ‘just try one more time’ so I ended up going to A&E and the nurses and doctors in Croydon were really concerned so they got me some blood tests and sent me off to St Georges and Moorfields and tests were then done from there.

“On the 23 November I got diagnosed with acute myeloid leukaemia and the thing that was pushing behind that eye was actually a tumour which is super rare.”

Mphango was told she would need radiotherapy and chemotherapy treatment over the next few months and would receive the treatment at the Royal Marsden.

“I was given ten days radiotherapy because of the eye – it worked really well and my eye went back into the socket and I managed to retain some vision – I have colour-blindness in the left eye now but it’s back in the socket and it doesn’t look like it did before. It was four months, four set of cycles of high dose chemo.

“I had hair loss and mucositis, every single cycle I’ve had mucositis, I’ve had discolouration with my finger nails and my toe nails – I had an infection on each cycle but my final cycle but the infection for my third cycle was a really serious infection that left me in respiratory failure, I had to be taken to ICU and put on a ventilator for a couple of days whilst the antibiotics were working.”

As Mphango had moved out to London her mum travelled down from their hometown to be by her side.

“My mum came down as soon as the doctors were saying that it could be something more serious I called my mum and she drove down so she started to stay over when I was getting

chemo and when I was really sick, she would come down and stay with me while I was at my lowest and then when I started to build more energy she would go back for a few more weeks.

“Losing my independence was really difficult, ive always been really independent and I’ve always wanted to deal with things for myself and having to rely on people was really hard. It was only when I had no other choice but to rely on people did I give in to it, I was still trying to hold on to as much as I could.”

Mphango spent around £3-400 a month on petrol and taxis to get to and from hospital for treatment.

“It’s around 30 minutes away with no traffic. It’s really expensive, because of the treatment I haven’t been able to be on public transport so either my mum drives or I get a taxi. A lot of the times my travel costs have doubled – I was working from home previously because travel costs are ridiculous – I spent £3-400 a month on fuel and taxis.”

On top of the extra costs of travel, Mphango had also experienced a drastic drop to her income when she was diagnosed.

“It was really stressful because as the same time as these costs going up, I have also now been put on sick leave so 80% of my salary had gone. I was on £1,700 and then I was getting £400 a month so it was a drastic drop. There were so many issues with universal credit, it’s difficult – there were a lot of issues when it comes to getting your money – my work is quite a new organisation so they did a few mistakes which made my universal credit not come through. With PIP as well, I applied for PIP in November, I didn’t actually get it until around February – I know there’s a back payment but within those months I don’t have that money so it is quite stressful.

“The biggest cost was travel but there was still rent to pay and bills to pay – there was also, when I came back home I could only stay home so that meant my heating bill especially during the winter was absolutely sky rocket because I had to keep warm. Then I had to pay for things like rent and water etc so those costs were really stressful.”

Throughout her treatment, Mphango was supported by Hannah a Young Lives vs Cancer Social Worker who was there to help her navigate her diagnosis and everything that cancer threw at her.

“They helped with travel costs and I was also directed to the website that had lots of other grants – it was also like getting clothes for the hospital, I didn’t have any loungewear, I didn’t think I’d ever need as much loungewear as I needed so I needed to buy joggers and shorts and things to make me feel more comfortable while in hospital.

“I just didn’t know where to go so having that direction was extremely helpful to get me to where I needed to go and what I needed to do and that came through the support workers at Young Lives vs Cancer.”