My agonising two-year wait for a stem-cell donor after being diagnosed with leukaemia

Meena Kumari-Sharma
2019: Meena with six-year-old Krish (left) and Mia - Courtesy of Meena Kumari-Sharma

Almost two years after being diagnosed with acute myeloid leukaemia, Meena Kumari-Sharma, 42, faces a further setback: the agonising wait for a stem-cell donor

When I was diagnosed with cancer, my world turned upside down in an instant. I had been feeling really tired and had had terrible back pain. But I put that down to turning 40, working full-time, commuting from my home in St Albans to London and having energetic four-year-old twins. 

Nonetheless, I went to my doctor for blood tests in March 2018. A few days later, on my way home from work, I saw I’d missed several calls from the surgery. I phoned back and they told me that the results showed suspected leukaemia. My first thought was, ‘How do I tell the children?’

I was quickly referred to a consultant and after a very painful bone marrow biopsy it was confirmed that I had acute myeloid leukaemia (AML) – an aggressive blood cancer. I was told I would have to start intensive chemotherapy, which meant I’d be in hospital for up to 12 weeks at a time, for three to five rounds.

I added it up and worked out that it would be the best part of the year. I made the tough decision that I would move back in with my mum in Leicester, to have all my family on hand to support me.

My children had just started school in St Albans, and my daughter has a medical condition that means she has to have regular monitoring at Great Ormond Street, so they stayed in St Albans with their dad. 

I clearly remember the day I told them I was sick, and that I was going away. I picked them up from school and said, ‘Mummy’s not very well and I need to go to hospital for the doctors to fix me. And I need to be in Leicester for Grandma to look after me.’

They were so young that it didn’t really hit them then; they didn’t know that I was going to be away for two years – neither did I at that stage. I bought them each a little soft toy, because I wanted them to have something to remember me by, and told them, ‘If you miss Mummy, hold this teddy close to you and feel me in your heart.’

2017 Meena before her diagnosis Credit: courtesy of Meena Kumari-Sharma

I started chemo immediately, and responded really well to the first round of treatment: my cancer actually went into remission, but I did pick up a lot of infections and had to keep going into hospital. But no matter how sick I was, I managed to see the children once every two weeks. 

From the start, I knew that I would need a stem-cell transplant to treat my disease. My two brothers tested for it, but they weren’t ideal matches, so the hospital started a search.

It was harder because there are fewer people of my Hindu/Punjabi heritage on the donor list, but they did find someone in Korea.

2018 In intensive care Credit: courtesy of Meena Kumari-Sharma

When I found out, it felt like a lifeline. But then, shortly afterwards, I had a double blow: my cancer had returned and the donor pulled out. I was left back at the start. 

I had to go through another round of chemo, and it wasn’t good. I didn’t respond in the same way as before and I got seriously ill. Around December last year, I went into intensive care – I couldn’t breathe on my own – and I wasn’t able to see the children for three months. I missed them so much and was worried they would forget me. It was heartbreaking. 

Thankfully I recovered and my family and friends started a campaign with the blood-cancer charities DKMS and Anthony Nolan, called Match4Meena; we’ve signed up more than 5,000 people to the transplant list. There’s a chance we’ve now found a match for me, but until it actually happens, I don’t want to celebrate.

There is also another option on the table: a technology called haplo-identical, where they could use the stem cells from my brother, who is a 50 per cent match. 

But it shouldn’t have been this hard to find a match, and that’s why I started my campaign to sign more people up to the transplant list. I want to make a difference for other people who have to go through this.

If I don’t make it, I want to leave a legacy that the children can look at when they’re older and know that Mummy did everything she could to fight this thing. There can only be one winner with this disease, and it needs to be me. 

As told to Jessica Salter

Leukaemia Care is one of three charities supported by this year’s Telegraph Christmas Charity Appeal. Our others are Wooden Spoon, which works with the rugby community to raise money for ­disabled and disadvantaged children, and The Silver Line, a telephone support service for lonely elderly people. To donate, visit telegraph.co.uk/charity or call 0151 284 1927  before the end of January