Living with leukemia: “My ethnicity means I only have a 37 percent chance of finding a stem cell donor”

I didn’t notice when it all started. Around December, I assumed I had the flu. However, it was very strange because it just couldn’t get away. I had it for five weeks. I have tested myself for Covid. I just couldn’t figure out why it didn’t go away.

My doctor prescribed me antibiotics and steroids. I struggled to get an appointment because the nurses were on strike so I didn’t really know I had anything other than the flu and a really bad sore throat – in fact, I’m hoarse.

I was going to get a new job on January 16 of this year, so the day before I told my husband, “I’m going to the emergency room,” because I wanted to start a new job and feel healthy, and I felt so uncomfortable.

When my husband and I go to the emergency room, we always give each other a ride, we never stay together because we know it will be at least four hours before we are seen. So I went and they did all the different tests. They did a blood test and this doctor came up to me and told me to stay longer. I said “No. No no. I start my new job on Monday. But she said, “Janice, you have nowhere to go. You have leukemia. You have blood cancer.

I asked if they were wrong, and then I called my husband and told him to go to the hospital. That’s how it all started. I just wanted to know what’s going on. Then another doctor came and confirmed it to my husband, because at that stage I did not believe.

My white blood cell count was 136. If it was a mistake, my white blood cell count would be between 5 and 26. You can’t go wrong with 136. Then they left the room, closed the curtain, and that’s when it really hit me. I wouldn’t even say cry, I sobbed my eyes. It was terrible. My husband just hugged me.

I just thought, “This can’t be true.” I donate blood. I run. From time to time I do the Tesco cancer study, I do the Macmillan study. I do all these races to raise money for charity, and now I’m one of those people. I could not believe it. I was shocked.

I was in Hillingdon Hospital near Hayes, West London for two days, then I was transferred to Hammersmith Hospital and I was there for 42 days receiving chemotherapy through drips, pills and other drugs. I had a blood transfusion – 10 units of blood, 14 units of platelets. it was so much

I knew in my community – I’m 56 years old, I’m a Black Caribbean-British Grenadier – that I needed a stem cell donor. And we don’t donate enough blood, especially stem cells. That’s why I didn’t want to cry from the beginning. I will raise awareness and that is exactly what I did.

I contacted Anthony Nolan [the blood cancer charity] who saw my own posters saying “if I can’t save myself, maybe I can save someone else” and how much I did to raise awareness, we worked together. Being positive was my motivation.

The place where I will work was ready to delay him for a couple of weeks, but it turned out that I was in the hospital for six weeks – and that also made me sick – so that would be really unfair. I wouldn’t have the strength to work. This is the first time in my life since I was 17 that I didn’t work. I have always worked.

I’m still at Hammersmith Hospital and will be here for another four months, so I didn’t have to think about work. The hospital allows you to go home for a week or 10 days to keep you healthy. Now I’m back for a month for all treatments. If you are ok, the cycle repeats. You do this for five months. I hope they are looking for a donor in the meantime.

They tried two of my brothers and my sister, but they didn’t match because our antibodies clashed. It will take you about four weeks to get your first blood test and see if you are a match for your siblings. I had no doubt that they would fit together – I am 100 percent saved. Everything will be fine. On March 8, they called me at home and said that they did not fit. As you age, your defense mechanisms change – children get sick, you get infected, you get sick with any kind of disease – this is your defense mechanism. They are special to you and create an immune system just for you. So I think that my brothers and sisters, whatever they have in life, their antibodies created an immune system that is now at odds with mine.

I was just as devastated as when they told me I had leukemia and I cried just the same, let me tell you. They also said that there is no consistency in stem cell registries anywhere in the world, so I lost hope. What should I do? My brothers and sisters will be 100 percent compatible.

Both of my daughters have a 50 percent match, which means their antibodies may not be the problem, so the doctors will look at them as a possible new option if things come to light. Now I will wait another month while they are being tested. This is a waiting game. We don’t know what will happen. I remain positive and hope it stays that way. This is very discouraging.

The big problem for me is how hard it is for non-whites to find a mate. [Currently people from a minority ethnic background have just a 37 per cent chance of finding an unrelated stem cell donor on the register, compared to 72 per cent for white Northern European patients]. I knew that within an ethnic minority we just don’t give enough, so I turned to family and friends, my colleagues. We know many people below all of us. I’m targeting everyone regardless of their skin color – my white friends, my Asian friends, they should know black people – just reach out and talk about it.

In the hospital, I get intravenous chemotherapy for nine days, and you get it twice a day. I’m fine, but now I’m on 14 days of chemo twice a day, which makes me very sick, but they give you anti-nausea medication to help. If you’re really sick, they’ll give you an injection in the arm, so they have all sorts of side effects. The pills really bother me so I mostly sleep. But I get up and try to do something.

Before I got sick, I was doing my 10,000 steps a day. I can’t walk that far here – across the room or down the hallway – but I would walk about 2,000 steps if I could, if I felt well enough. The question then becomes whether I need a blood or platelet transfusion. I think I respond well to treatment because I have always been a positive, strong person. If you are positive and strong, it helps with our illnesses, I always thought. If you wallow in grief and feel sorry for yourself, I don’t think it will help.

So on this trip, the doctors were very impressed with my presence every time. I tell people it’s a temporary inconvenience and I will. I do not want to be in the hospital, but if I were at home, I would cook, clean, wash – I also think about this holiday. I don’t have to think about what to cook. I get three meals a day, change the bed, I mean, come on! I must see it positively.

I was told that it usually takes three to five months to find a donor. They can usually do something, even if it’s not a complete match. There is no correct date. This is a waiting game. I cannot continue this treatment forever because you are prone to infections and it is bad for your body anyway.

I created a whatsapp family group for daily updates because of course when everyone found out about it they all went broke. My father died of prostate cancer 11 years ago. We watched him go from average height to skin and bones. It was terrible, which is why my family was so worried and thought that the same thing would happen to me. Even I thought the same thing when I first heard my diagnosis. Will I lose my hair and die? Well, I lost my hair, but I’m still here, thank God.

Being so positive also makes my family happy and strong. They all cheer me up. When I feel bad, I post it in the group chat, but mostly everything is positive. Believe me, I really want to go home.

For more information about stem cell donation, visit the following websites:

https://www.dkms.org.uk/

https://www.anthonynolan.org

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