Through May of 2018, I had a chest infection that didn’t seem to shift for a long time, and then I started getting extreme headaches in June. I went for an eye test but that came back fine.
On the 26th of June, my mom made me an appointment with the GP. By now I was also experiencing really bad neck pain that felt worse than just sleeping funny on it. The GP examined me and couldn’t quite point to a diagnosis, so he told me that he wanted me to go to A&E because I was a student, meaning the neck pain could be a symptom of meningitis. I was rather blasé about this and wasn’t too worried about it. I also had a temperature which I assumed was just because it was a hot day.
My parents took me to our local A&E where I gave in a letter from the GP so I could be seen right away. I sat down with my mom to have my observations taken, and I remember the nurse staring really hard at the screen behind my head. He asked me, “Are you feeling okay?” And I said, “Yes, why?” I had to have a heart trace immediately and then this nurse had two phones to his ears and told us to follow him, as they were moving us to majors. My parents and I were confused but it was such a rush it felt like we were running there.
Then I was put in a side room and told to wait for hourly observations and also a blood test. I was petrified at this point because I had an awful needle phobia and I had never even had a blood test before. After this I was taken to a kind of holding ward while they tried to figure out what was wrong, as my white cell count was sky high. The next day consisted of more tests, a full body CT and what I now know was a bone marrow biopsy. I was moved to a haematology ward, full of lovely old ladies who all had one thing in common – leukaemia. I was here because they didn’t know what was wrong, it was just something in my blood, not leukaemia.
The next day I remember a nurse staring in at me, asking if my parents would be back soon. She told me the doctor wanted to talk to me. It felt like time was taking forever while I waited for her to get him so I went back and found her and she took me into a side room where the doctor was sitting with his head in his hands. The nurse was holding my hands and I just remember thinking, ‘why is she doing that?’ And then he told me. B-cell acute lymphoblastic leukaemia (B-ALL). He said he was so shocked that he had gone down to the labs himself to take a look at the slides.
Everything felt like a whirlwind from then on. I was moved to the Teenage Cancer Trust young persons unit at the Queen Elizabeth on the same day, a Friday, and then began treatment immediately. My response to the first treatment wasn’t great, so I was moved onto more intense chemotherapy and was told that I would potentially need a stem cell transplant from a donor. I had more and more intense chemo and then on November 6th I had my transplant. It was potentially the worst time of my life; I was so ill and in so much pain all the time it was horrible. By the time I left I had lost two stone and couldn’t eat a thing without being sick. This sickness continued for months after treatment.
The thing I hated the most was comments like: ‘it’s only hair it will grow back’, because to a young girl—in fact, to anyone in that position—it is so much more than that. Unless you are in that situation you will never understand how that feels and you wouldn’t dream of saying it’s ‘just’ hair. It’s your identity, it’s part of you.
Soon enough it came to the 100-day post-transplant biopsy. A few weeks later my doctor requested a repeat. When I asked why, all I was told was that ‘something flagged up’. During the wait for the results, I silently noticed my original symptoms creeping back. Another trip to see my consultant, but my mom and dad were both at work, so my sister came with me. And then I heard the dreaded phrase again: “Where are your mom and dad?” At that moment, I knew that I had relapsed, and it was true. I was classed as terminally ill, until my doctor told me that I could be eligible for CAR-T therapy. Once again, another whirlwind. I became the first person in the West Midlands to have the treatment, the day after my 21st birthday on the 10th of June 2019.
I am in remission now! I still experience side effects from treatment to this day, including weakness, chemo brain, fatigue and immunosuppression. I went back to university and I have just finished my final year of my undergraduate degree, and I am going back in October to do a masters in haematology to help others like me in the future.
Spot Leukaemia is incredibly important as it is vital for people to be educated on the signs and symptoms of leukaemia, to look out for not only themselves, but others around them. Leukaemia must be treated early or as soon as possible, so everyone should know what to look out for.
From patient to advocate: Sophie’s story
Before I joined Leukaemia Care as Advocacy Officer, I was involved with the online cancer community through social media. I have found it extremely supportive and helpful after everything I had gone through and continue to go through. Being able to share my own experiences with others in similar situations made me feel less isolated, and in turn, being able to use my experiences to help others has been a blessing.
I shared my story with Leukaemia Care in 2019 as a part of the Spot Leukaemia campaign. Around this time was when I began to realise that I wanted to work with other patients to ensure that they always feel heard and that they know they are not alone. To now be able to say that this is what I do is just a dream come true.
My role at Leukaemia Care as Advocacy Officer includes providing support and information to patients, their families, carers, friends and even their employers. This can be regarding a wide range of topics, including dealing with diagnosis, understanding available treatment options, discussing clinical trials, coping with side effects and many more issues that patients and their families may be facing. My role also includes working part-time on the Helpline and running the Whatsapp service where patients can contact me directly with their queries.
I have many hopes for success within the role, but my main goal is to help as many people as I can live well with leukaemia by supporting them, and their network every step of the way, just as Leukaemia Care supported me when I needed them.
If I were to speak to someone in my position now, I would tell them to take every day as it comes and to always celebrate the little wins. Every milestone, re-birthday and anniversary is a worthy celebration and a reminder of your strength and resilience. In the same breath, I would also say to not be afraid to reach out for support and to talk about what you are going through and the ways it may be affecting you. As individual patients, we all have our own unique experiences with leukaemia, but there are many things that can resonate between us all. Knowledge is power and sharing what you know and your experience can make a real difference to the lives of others, which is exactly what I am hoping to do.
Sophie and the rest of our advocacy and support team are here to help you. Don’t hesitate to get in touch with us on freephone 08088 010 444 or chat to us on Whatsapp on 07500068065.
You can also email us on firstname.lastname@example.org if you have any questions or queries.