Originally appeared on Wales Online
A young woman who was given just four months to live in 2017, when she was diagnosed with terminal cancer at just 22, is now working for an app which puts people like her in touch and helps to combat loneliness.
Devastated when the lump she first noticed on her right leg in January 2016 was diagnosed 18 months later as an incurable sarcoma – a cancer that begins in the bones and soft tissue – digital marketing student Katherine Mills, 26, said she felt acutely isolated.
Katherine, of Sutton, south London, whose cancer is currently stable, despite the catastrophic early prognosis, said: “I’ve had this very backwards experience of cancer, because the more stereotypical journey is that someone has a cancer diagnosis and their consultants aren’t too worried.
They told me I would be lucky if I made it to Christmas, I couldn’t believe what I was hearing.
“They put them on a ‘watch and wait’ and then the cancer gets worse. They try chemo but the chemo doesn’t work. They get told it’s terminal and then they die.
“For me, I was told I was going to die straight away and now things have settled and my cancer is pretty stable.
“At first, it was a horrific shock and it can be very lonely to be told you have four months to live at 22.”
She added: “Working on the app has helped me a lot in discovering what I want my personal mission to be in all of this.”
When Katherine met Brad Gudger in October, 2018, through charity work she was doing for CLIC Sargent, he told her about Alike, an app he had founded to connect cancer patients having a similar experience, so they can share their thoughts and feelings and feel less alone.
According to research by Alike, 12,500 young people in the UK are diagnosed with cancer every year – 83 per cent of whom experience loneliness during and after treatment.
Now, to be off treatment, it does actually feel like I’ve got my life back. I’ve been able to start over in a way.
Katherine, who agreed to become the app’s communications lead in January 2021, helping people like her to find friends in similar situations, said: “I feel a really strong responsibility towards people who are given a terminal diagnosis.
“I’ve been there, I’ve planned my funeral at a young age.
“As someone with an incurable cancer, I know our stories don’t often get told, but I’m now in a unique position to tell people what’s happened to me and to try and bring people with similar experiences together, to give each other support.”
She added: “It’s a really personal mission for me to tell the story of living with incurable cancer, because not everyone is going to go into remission, not everyone will be cured.
“Living with a terminal illness can be very isolating and it is so important to me to get our voices heard.”
Katherine first realised something was wrong back in January 2016, when she noticed her energy levels had begun to drop.
She said: “I had really, really bad fatigue. I was just really tired all the time. At first, I put it down to the fact that I was so tired from commuting to university. I thought it was freshers’ flu or something like that.”
But later that month, she fainted on a train platform and decided to see a doctor.
She said: “I was standing on the platform at Clapham Junction in south west London as the train was coming in. In a matter of seconds, I went from feeling fine, standing up and thinking about university then, all of a sudden, I just collapsed.”
Katherine was caught by other passengers as she fell to the floor and, after coming round, decided to seek medical advice.
“Doctors did some blood tests,” she said. “They put me on iron tablets, but around the same time I began to cough up blood.”
Katherine now believes that her youth meant doctors did not consider it could be cancer and, instead, diagnosed a chest infection.
I’m in a unique position where I’m terminal, but I’m not under a ticking clock, so I still want to do things with my life.
She said: “They gave me antibiotics, but they did nothing. I ended up getting sent to A&E for a blood transfusion and that’s when I noticed the lump on the back of my leg.
“I flagged it to a doctor, but they brushed it off.”
It took 18 months before, in August 2017, then aged 22, doctors at central London’s Guy’s and St Thomas’ Hospital told Katherine she had sarcoma.
“It was a shock, of course, but my first thought was, ‘OK, how are you going to fix this?'” she said.
“I assumed I would need an operation, or I’d start chemotherapy. At that point, in my mind, I thought that if you get cancer then you have treatment and then you go into remission.
“But it wasn’t like that for me. When I asked for my prognosis, I couldn’t help but notice my nurse’s face fall.”
Shockingly, doctors gave Katherine just four months to live and advised her to get her affairs in order.
“They told me I would be lucky if I made it to Christmas,” she said. “I couldn’t believe what I was hearing.”
Living with her parents, retired IT contractor Peter, 64, and retired bank cashier Patricia, 62, Katherine was put on chemotherapy and tried to make the most of the ensuing few months.
“Christmas came and went,” she said. “I was still here but I had no life. The treatment was draining.”
In January 2020, she was then diagnosed with a fungal chest infection and was forced to come off chemo so it could be treated.
Katherine said: “I ended up being off chemo for nine months. I had regular scans and, in that time, my tumour hadn’t grown at all.”
I’ve defied a lot of the odds that were stacked against me and I want to use my skills to help other people going through cancer like me.
She added: “That’s when I made the decision to come off treatment all together and enjoy the fact that my cancer was stable.
“My life was quite restricted on chemo, in terms of what I could do and eat, and I was just so tired that I was sleeping all the time.
“Now, to be off treatment, it does actually feel like I’ve got my life back. I’ve been able to start over in a way.”
Katherine has even felt well enough to return to university, where she is taking a masters degree in digital marketing, as well as working for the charity.
She said: “Mine and Brad’s friendship started off going for drinks at Soho House and now we have an office space at Soho Works.
“His friendship and my work for Alike have helped me understand what my own personal mission is, and that sense of friendship and community allowed me to envision a life where cancer isn’t the central point.”
I have scans every three months but, at the minute, the cancer is not really doing anything.
She added: “That’s an incredibly empowering experience, and one that I want all patients and survivors to have, which is what the incredible thing about the Alike app is.”
Katherine feels that often, people with a terminal diagnosis are overlooked when it comes to support from peers and the wider community.
She said: ” There are understandable reasons why people who are terminal are often very focussed on spending time with loved ones.”
Our stories don't often get told, but I'm now in a unique position to try and bring people with similar experiences together, to give each other support.
She added: “But I’m in a unique position where I’m terminal, but I’m not under a ticking clock, so I still want to do things with my life.
“I have scans every three months – I’m what they call a ‘watch and wait’ because, at the minute, the cancer is not really doing anything. They’re keeping a watchful eye and waiting to see what happens.
“I’m very grateful for that. I’ve defied a lot of the odds that were stacked against me and I’m really happy to be involved with things like Alike, so I can use my skills to help other people going through cancer like me.”