Julia Reinstein

Medical Neuroscience undergraduate Julia Reinstein describes her journey with blood cancer and why she is raising awareness of the treatment that saved her.

I was diagnosed with acute Myeloid Leukaemia in February, 2019. I have always been a busy person, running around, doing a million things. I’d started my degree at Sussex, and I was going to perform in a musical, ‘Legally Blonde’, with Sussex Musical Theatre Society. But I found I was exhausted all the time. I thought it was stress, although I had a few other symptoms.  I was breathless, I had a couple of large bruises that hadn’t gone away, and my heartrate was high at 140 beats per minute. 

My dad, who’s a doctor, suggested I get a blood test. He said I might have leukaemia. So I went to the Royal Sussex County Hospital in Brighton. I waited three hours for results, and a haematologist  came to tell me that my blood was really out of whack. My white blood cell count was 250 – it should be between four and 11. Then a doctor came to tell me that I had leukaemia. I cried, and then asked if could start having treatment after I’d done the musical; that’s how my mind was working. But I was told I was so vulnerable to infection that I needed to stay in hospital. I couldn’t even go back to my flat to get my things.

My flatmate came to the hospital and we cried for six hours. The doctors suggested that the best place to be treated was a specialist teenage cancer ward at University College Hospital London - I was 18 at the time.  So I was taken there by ambulance that day and my parents met me at the hospital. A biopsy of my bone marrow found that it was 100 per cent leukaemia cells. I wasn’t producing white bloods cells, red blood cells, platelets… all the things that your bone marrow produces to help you live.  

I had two rounds of chemotherapy, which put me into remission, and then last June received a stem cell transplant. Sometimes chemotherapy is enough, but I had two cell mutations that put me at a high risk of relapse. It took three months to find the right donor match through the Anthony Nolan stem cell register. 

A stem cell transplant is a simple procedure. For donors, they have a system of filtering the blood to collect 300mls of stem cells. For me, they put a canular in my vein and the stem cells magically find their way into my bone marrow in about 10 days. The team were good at reassuring me there would be a match. There is a 69 percent chance for white Europeans. But it’s much lower for BAME people – just 20 per cent  - because there are far fewer BAME people on the register.  I was shocked that only two per cent of the population are on the register.

So many things can change in a week, in a day. There was a period of a few months after the transplant when I got annoyed by people caring about little things, like a package not arriving. I thought, why don’t people appreciate what they have?  And then I had to remind myself that, at my age, most people don’t experience this kind of thing and I wasn’t being fair. 

My friends are really supportive and understanding. We joke about the fact that I had cancer. On the ward at the cancer centre they were my age or younger and that was nice because everyone was in one place and we could talk about it. I’m having a bone marrow biopsy every three months, and so far there’s no sign of the disease.

I wasn’t able to go the pub or clubbing when I came back to Sussex earlier this year to complete my first year. It didn’t really matter. We’re not a group that goes out five times a week. There were a lot of movie nights and pizza nights and just staying in chatting.  Now, during Covid19, I’m back with my parents in London and as I am in the vulnerable category.

When I realised that this was the specialist area of one of my lecturers, Dr Rhys Morgan., I wanted to help raise awareness of the Anthony Nolan register and stem cell transplant. a He said he was planning on doing an awareness drive and  talk on campus and wondered if I would like to use my story as an example. Because of Covid we did a zoom talk instead. Once you explain to someone that all you have to do is swab your cheek, put the swab in an envelope and send it off, and that it might save someone’s life, people say, yeah – why not do it?

Now that I have had cancer I can’t give blood, or donate organs, so I can’t give back  to the health service in that way. Before I became ill I thought about going into medicine. Being in hospital only confirmed what I thought I wanted to do. It was the best work experience I could have had. It was so intense and I learned so much. The nurses were great and, because I understood, they wanted to explain the science. I feel that medicine is my calling.

This profile is part of our This Sussex Life series.