My first diagnosis of acute myeloid leukaemia came in March 2018, when I was 23. Quite frankly, it was a blur from start to finish – when I was first admitted onto the haematology ward of the Queen Elizabeth University Hospital in Glasgow, my blood count was extremely low.
I remember the doctor coming to speak to me and my mum, and despite understanding parts of what was being said, I still felt completely overwhelmed by it all. I don’t think I fully accepted what was being said to me.
I was taken to hospital late on a Friday afternoon and by Tuesday I was starting my first round of treatment. Without the support of my parents, brother and my partner Ben, I wouldn’t have known where to turn. Should I do a trial? What side effects can I expect? What if it doesn’t work? These were so many questions I needed answering, but I couldn’t bear them alone – often the answers would just fade away into the background, I would hear one word or phrase and focus my attention on that, and it was rarely the positive points I focused on.
This is where the support of those closest to me took form. My mum knew exactly where my head was at, she knew the questions I didn’t want to ask and so asked them for me. She took down notes and listened attentively, knowing she would no doubt have to relay the information to me later in the day when I was more focused or feeling less vulnerable.
The recovery from my stem cell transplant required me to quarantine from my loved ones, before we had even heard of coronavirus.
In March 2019, only two weeks shy of my first diagnosis, I learned at a routine blood test that I had relapsed. I had expected to be in and out of the clinic in minutes, so I had gone alone, but within minutes of having my blood taken, my results came through and a consultant was called. I felt terrified, all I wanted was someone to give me a hug and tell me it was going to be okay. Suddenly, a bone marrow biopsy was set up, and so began another twelve months in hospital, four rounds of chemotherapy and a stem cell transplant – the recovery from which required me to quarantine from my loved ones, before we had even heard of coronavirus.
I had envisioned 2020 as a happier year. But only a few months after my transplant, the world was starting to get to grips with the coronavirus pandemic, bringing with it a change to how appointments were organised. These were a lonely affair, as patients could no longer bring in a companion, making the appointments even more daunting than before.
I had been told that if someone wanted to join me, I could phone them when I was ready to be seen, but I always felt a real awkwardness in doing so. With the new Covid checks in place it seemed an added nuisance to bring someone in for only a brief chat. They would have to queue to enter the building, waiting to be assessed by a nurse who had a thermometer and checklist at the ready. It seemed easier to just be there myself – to be honest, I found myself feeling embarrassed at the thought of needing my mum to hold my hand. If it were someone else telling me this, I would probably tell them they were being ridiculous, but nonetheless, at 25, I felt that I would be judged on wanting my mum in with me, especially considering so many around me were in the same boat.
We all need someone to help us when we feel at our most vulnerable, no matter the circumstance.
From August last year, I was able to take some appointments via video call. It allowed me to have someone else there, and it was a comfort to know that someone else was listening with me. It may not have been physical face to face contact, but we could now discuss things as normal with no masks getting in the way. It seems like a strange thing to comment on, but sometimes being able to get a reassuring smile makes all the difference.
As lockdown and restrictions continue, I find myself often thinking of a friend who I had met in hospital, whose cancer had relapsed at the start of the pandemic. She would share her grief at not having her family there by her side and the fears she had of her upcoming stem cell transplant.She went through four rounds of treatment, with little contact with her parents. When she received her transplant, she was completely shut off from visitors due to the risk surrounding stem cell patients. She had no immune system, little energy to look after herself, and the anxiety of being cared for by a new team of nurses and doctors for the next couple of months.
Experiencing it all myself and understanding how much we rely on those other people being in the room made me appreciate how fortunate I had been in having my family and friends there to support me. We all need someone to help us when we feel at our most vulnerable, no matter the circumstance.
Everyone battling cancer during this pandemic, young and old, are superheroes in my eyes. The bravery they have to show every day to deal with their illness as the world struggles on around them is inspiring. But they shouldn’t have to go through it alone, and I can only hope that, for their sake, we start to see change for those going through this horrible disease.
Lauren Lester is a master’s student at the University of Stirling. CLIC Sargent and Teenager Cancer Trust are encouraging any young people with similar experience to speak with their clinical care or social care team for support. For more advice, visit the CLIC Sargent website here
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