Alice’s story: Coming to terms with diagnosis on NYE

It was the countdown to midnight on New Year’s Eve and everyone around Alice was revelling in the festivities. But sat watching the fireworks over the River Thames from her hospital bed, the 24-year-old was trying to come to terms with the leukaemia diagnosis she had received just hours earlier.

“The whole thing was so surreal,” Alice said.

“I got admitted on to the general ward at Guys and St Thomas’ which is right by the river where all the fireworks are on New Year’s Eve.

“I was sat in the hospital ward, ostensibly by myself and all the other patients were on the phone wishing their friends and family Happy New Year. You could hear the fireworks. Everyone else was celebrating and there I was trying to come to terms with what was happening.

“Having had the worst news of my life it was extremely surreal to have that juxtaposition.

“I don’t think I slept at all that night.”

The diagnosis came after a month of feeling unwell.

Throughout December 2019 Alice was suffering from what doctors initially thought was an unusual infection in her lower back. She was given two lots of antibiotics but when her symptoms did not improve and chest pains prompted her to visit A & E on New Year’s Eve, Alice was diagnosed with Acute Myeloid Leukaemia.

The 26-year-old, from London, spent six weeks in Guy’s Hospital undergoing chemotherapy treatment.

She said: “I had gone out for Christmas dinner with all of my friends and I felt really shattered. I felt so tired and terrible that I ended up going home early.

“I spent most of the month going back and forth to my GP. I was at university at the time but I didn’t do any work for the whole of December because I didn’t feel well enough.

“At Christmas I was trying to participate in festive things but I didn’t do anything with friends like I normally would. On Christmas Day even just before lunch at about midday I had to go and take a nap because I was just so exhausted.

“The infection wasn’t there anymore but I have never felt so tired in my whole life. I was losing weight and people kept commenting on how grey I looked and how unwell I looked.

“Cancer didn’t cross my mind, I was worried that I had some sort of auto immune condition.

“On New Year’s Eve I started getting these pains every time I stood up my chest was like felt like it was getting compressed, and I was getting bad pains in my joints and elbows especially.

“My boyfriend and mom convinced me I should go to A&E just to get checked out. So I went and they did chest X rays and couldn’t see anything.”

Blood tests showed that Alice was severely anaemic and neutropenic.

“Then they said; ‘okay, something is wrong,’ she said.

“So I spoke to the haematology team who said ‘look, we think it’s probably leukaemia, because that’s basically one of the only the only explanation we can think of why this would be happening’.

“It was such a massive shock. I held on to this tiny piece of hope that maybe it would be something else once they did the bone marrow biopsy.”

At the time of diagnosis Alice was studying for a Masters degree and living with her boyfriend in Peckham, but she soon found she could no longer afford rent and had to move back in with her parents.

While going through treatment, Alice also got Covid.

She said: “My first round of chemo was definitely the worst, it got pretty, I was throwing up all the time and I lost a stone of weight in two weeks because I just couldn’t eat.

“Because my bloods were so low I would get really easily bruised and had tiredness and general brain fog. I got infections basically every single time but with the first round, I got it definitely got the worst infection which was a multi-drug resistant infection in that first round which took a while to find.

“Obviously getting COVID when I was going through treatment was quite scary. I got COVID at the end of March/beginning of April 2020 so it was still very early on and no-one knew what the effects would be if someone who was having chemo got COVID. So everyone was watching me like ‘ what’s gonna happen’ but luckily it was alright.”

Throughout this time she was supported by a Young Lives vs Cancer social worker who helped her pause her student loan, get out of her tenancy agreement and find a new place to live, helping with financial support post-treatment.

Alice said: “Without Young Lives vs Cancer I think I would have felt very isolated.I wouldn’t have had the knowledge that I have about how to do things and it sounds stupid because you know there’s no right way to be a cancer patient obviously but it just helps you to know what you’re entitled to and also opens you up to a whole community of people who can be there to support you, which is invaluable.

“I just think when you’re going through something so life altering and it really does flip your life upside down, knowing that other people have done it before and kind of come out the other side is just invaluable, and YLvC can just be there to kind of facilitate those conversations and help make those connections.”

Although it is exactly two years since her diagnosis, Alice, who is now in remission, is looking forward.

She said: “I think this time of year is always going to be tinged slightly with mixed emotions. It will always feel like the anniversary of when that happened but I am hoping over time that will dissipate a bit.

“There was that feeling last year that something wasn’t right so it was the uncertainty of things hanging in the air so I have been hoping for a better time this year.”